Living with Dying, Dying at Home

Transcription

Living with Dying
Dying at Home
an aids care team
resource manual
Care Team Manual for
Living with Dying
Dying at Home
an aids care team
resource manual
© Copyright 1988 AIDS Committee of Toronto
399 Church Street, 4th Floor
Toronto, Ontario M5B 2J6
Second edition.
Published March 1998.
This project was funded by the AIDS Care, Treatment
and Support Program under the National AIDS
Contribution Program of the National AIDS Strategy
of Health Canada.
The views expressed herein are solely those of the
authors and not the National Minister of Health.
First edition originally produced in collaboration with
Projet Accès in 1994.
Additional English and French versions of this manual
are available free of charge from the
National AIDS Clearinghouse
400-1565 Carling Avenue
Ottawa, Ontario CANADA K1Z 8R1
Tel: (613) 725-3434
Fax: (613) 725-1205
E-mail: [email protected]
Web site: www.cpha.ca
Canadian Cataloguing in Publication Data
Johnson, Andrew S.
Living with dying, dying at home: an AIDS care team
resource manual.
2nd. ed.
Issued also in French under title: Mourir chez soi.
Includes bibliographical references.
ISBN 0-921918-22-4
1.
2.
3.
I.
II.
AIDS (Disease) – Patients – Home care.
AIDS (Disease) – Palliative treatment.
Terminally ill – Home care.
AIDS Committee of Toronto.
Title.
RC607.A26J645 1998
362.1’969792
C98-900308-6
Table of Contents
Acknowledgments .....................................................................................i
Preface ......................................................................................................iii
Section 1: Introduction ...........................................................................1
Who is this manual for? 1
What does the manual include? 1
How to use this manual? 2
Some basic principles of palliative care 2
Quality of life 4
Bereavement 4
Care for the caregiver 4
Confidentiality 5
Diversity 5
Section 2: Setting Up a Care Team .........................................................7
Introduction 7
Deciding to do it 7
Getting started 8
What type of care is needed? 9
What are your resources? 10
Coordination: establishing the core care team 13
Caregiving supplies: what do you need? 14
Special needs and equipment 14
Staying organized 15
Some notes on Home Care programs 18
Your first care team meeting 19
Caregiving checklist 21
Checklist for household and caregiving supplies 27
Section 3: Care Team Records .............................................................29
Introduction 29
Care team members 29
Care team schedule 29
Important telephone numbers 29
Care team log 30
Likes and dislikes 30
House rules and where things are 30
Special considerations 30
Section 4: Infection Control .................................................................49
Introduction 49
Universal precautions 49
Conclusion 52
Section 5: All About Beds and Toilets ...................................................53
Introduction 53
Preparation 57
Positioning someone in bed 60
Toileting 61
Dealing with incontinence 64
Section 6: Symptom Control: Comfort Measures ................................69
Introduction 69
Some basic assessment skills 70
Basic comfort measures 71
Personal hygiene 84
Conclusion 87
Section 7: Pain........................................................................................89
Introduction 89
What is pain? 89
Personal responses to pain 91
Assessing pain 93
Managing pain with drugs 94
Drug side effects 98
Managing pain without drugs 100
Conclusion 103
Section 8: Medications..........................................................................105
Introduction 105
The categories of drugs 106
Recording, storing and disposing of drugs 108
The golden rules for giving drugs 109
Giving medications 112
The effects of drugs 120
Section 9: Body Mechanics: Lifts and Transfers.................................127
Introduction 127
Basic body mechanics 128
Moving someone in bed 130
Moving from bed to chair or from one chair to another 133
Falls to the floor 136
Walking 137
Fire safety 138
Section 10: Psychological and Emotional Concerns..............................141
Introduction 141
Loss and the experience of loss 141
Common emotional responses to loss 142
Multiple psychological concerns 145
Diverse perspectives and experiences 145
The experience of hope 150
Euthanasia and assisted suicide 151
Conclusion 152
Section 11: Communication ...................................................................153
Introduction 153
Concepts related to a supportive relationship 153
Methods of communication 157
Non-verbal communication 159
Communicating with someone in a coma 161
Other ways of communicating 162
Communicating with your friend’s family 164
Communicating with health-care professionals 165
Communicating with care team members 166
Conclusion 168
Section 12: Nutrition ..............................................................................169
Introduction 169
Nutrition and the dying person 169
Nutrition and the person with AIDS 169
Getting started 170
Fluids and solid foods 171
Food safety 171
Feeding tips 172
Some solutions to nutritional problems 174
Alternative diets 177
Some notes on alcohol and caffeine 178
Other methods of providing nutrition 179
Conclusion 180
Section 13: AIDS-related Illnesses .........................................................181
Introduction 181
HIV infection 182
Opportunistic infections 183
Cancers 189
Neurological complications 190
Women and HIV/AIDS 192
Section 14: AIDS Dementia Complex....................................................195
Introduction 195
What is AIDS dementia complex? 195
Treatment 197
Common concerns with ADC 197
Caring for yourself 206
Section 15: Medical Emergencies...........................................................209
Introduction 209
Understanding what your friend wants 209
Being prepared for emergencies 211
What to do in specific emergencies 211
When to call a doctor or the emergency number 218
Going to the hospital: what to do 219
Section 16: Death and Dying..................................................................221
Introduction 221
Signs of approaching death 221
Circulation (colour and temperature) 223
Being there at the time of death 225
Death-related instructions 226
Preparation of the body after death 227
Section 17: Grief and Bereavement .......................................................229
Introduction 229
What are grief, mourning and bereavement? 230
Common responses to death 231
Responses to grief 233
The process of mourning 234
Grief and AIDS 235
Bereavement care 237
Conclusion 239
Section 18: After Death ..........................................................................241
Introduction 241
Funerals and memorial services 241
Planning the service 242
Sample service program 244
Burial 245
Costs 246
Legal and financial matters 246
Financial documents 248
Probate 248
Closing someone’s home 249
Distributing personal belongings 250
Taking care of the care team 253
Section 19: Further Reading & Resources ............................................255
Introduction 255
Community-based AIDS organizations 255
Human resources 256
How to access professional help 256
Libraries and bookstores 257
The Internet 258
Reading and resources 258
Selected readings 259
Appendix A: Caring for the Visually Impaired .....................................265
Appendix B: Caring for the Deaf, Deafened and Hard of Hearing.......269
ACKNOWLEDGMENTS l i
Acknowledgments
T
he writing of this manual would have been impossible had it not been
for the many men and women who openly shared their experience with
death and dying. To them, their families and friends, I am eternally
grateful; their memory lives on in my heart.
To the late Michael Lynch and his care team go my deepest thanks and love for
inviting me to participate in a care team that was the model on which this
manual is based.
The utility of a resource such as this manual is a reflection of a diverse range
of experience and expertise in AIDS care and palliative care. Very special
thanks go to all who reviewed the content of this manual: Rue Amana, Rick
Bebout, Bonnie Benedik, Chris Bentley, Boni Cinquina-Cameron, Jack
Corcoran, Robin Cumming, Linda Durkee, Frank Ferris, Wayne Fitton,
Russell Gessner, Elaine Hall, Sue Hranlovic, Abe Karrel, Terrah Keener, Evan
Leblanc, Roland LeBlanc, Ned Lyttelton, Malcolm MacFarlane, Tracey
Manrell, Tara McDonald, Eleanor Mcfarlane, Hyla Mendelow, Dan Nagel,
Russel Ogden, Deborah Randall-Wood, Marie Robertson, Kelli Stadjuhar,
Leslie Stuart, the Vancouver Fire Department and all those who participated in
the evaluation of the first project.
We gratefully acknowledge the financial support which made possible the
realization of both the first and second editions of this manual. The first edition
was supported by the Lesbian and Gay Community Appeal of Toronto; the
AIDS Bureau, Ontario Ministry of Health; and the AIDS Care and Treatment
Unit under the National AIDS Contribution Programme of the National AIDS
Strategy, Health and Welfare Canada. The second edition is supported fully by
the AIDS Care, Treatment and Support Program under the National AIDS
Contribution Program of the National AIDS Strategy, of Health Canada.
Special thanks go to Janice Linton and Stephen Smith of the Pacific AIDS
Resource Library for their cheerful assistance with my research on existing
resources and review of the literature.
The painstaking tasks of editing and translating text are both an art and a
science. Thanks to Bob Daley for editing the English text of this edition and to
Anne-Marie Mayotte for editing the French text. John Atkinson undertook the
job of graphic design and layout and succeeded in making this edition both
reader-friendly and visually appealing.
ii l ACKNOWLEDGMENTS
The coordination of this project was overseen by Grant McNeil of
Communication Works. Words cannot express the gratitude and respect I have
for Grant as he faced the profound challenges I presented to him throughout
the production of this edition. For his professionalism, patience and integrity,
he holds my highest regard.
Finally, I wish to offer my heartfelt thanks and deep respect to Charles Roy,
Executive Director of the AIDS Committee of Toronto, for his vision and
commitment to ensuring that care and support for those dying with AIDS at
home, and their caregivers, continues to be made available throughout Canada
for as long as it is needed.
Andrew Johnson
PREFACE l iii
Preface
I
n 1994, the AIDS Committee of Toronto (ACT) published the first edition
of Living with Dying — Dying at Home: An AIDS Care Team Resource
Manual. Since that time, several thousand copies of the manual have left
the National AIDS Clearinghouse in Ottawa. Many copies of the manual have
found their way into the homes of people dying with AIDS all across Canada.
It has also served as an important resource for AIDS service organizations
(ASOs) across Canada, the USA and abroad. The manual has been used as a
teaching tool for health care professionals, hospices and ASO volunteers.
Similar manuals, with slightly different approaches to care, have been created,
based on the manual’s content and presentation.
The release of the first edition was supported with front-line training to
encourage its effective use. With the financial support of the AIDS Care,
Treatment and Support Program of Health Canada’s HIV/AIDS Policy,
Coordination and Programs Division, the AIDS Committee of Toronto, Casey
House Hospice, the Canadian AIDS Society and other organizations held a
series of training sessions to teach people with HIV/AIDS and their caregivers
how to use the manual.
Demand for a
Second Edition
Sadly, the need for this manual has not diminished. Despite recent advances in
treatment for HIV and AIDS, many people living with HIV/AIDS continue to
find themselves in need of care team support as they approach the end of their
life. Discouraging as this may be, it is a fact of life that requires a
compassionate response. Recognizing this need, the AIDS Care, Treatment
and Support Program brought together a variety of stakeholders who were
involved in the first edition to discuss a possible second edition. Given the
demand and positive reaction to the first edition, stakeholders were clear that a
second edition was warranted.
Advances in palliative care and in HIV/AIDS knowledge, along with the
experience gained from using the manual, made it clear that the manual’s
content and ease of use should be evaluated before writing a second edition.
Funded by the AIDS Care, Treatment and Support Program of Health Canada
and coordinated by ACT, a nation-wide evaluation of the manual was
completed in early 1997. The evaluation consisted of the following: a review
of the recent scientific and popular literature related to AIDS and palliative
care; a review of comments and suggestions forwarded to ACT by users;
distribution of a survey questionnaire to a random sample of individual users
and to a sample of ASOs across Canada; four focus groups with primary users
iv l PREFACE
of the manual in Vancouver, Toronto and Montreal; and face-to-face interviews
with people living with AIDS, family members, health professionals and
volunteers.
The evaluation findings were used to update and expand the manual’s content
as well as improve the overall presentation and ease of use. Two completely
new sections have been added to the table of contents. Section 18 provides
information on how to dismantle someone’s home and take care of their
personal effects after death. Appendix B discusses care for the deaf, deafened
and hard of hearing.
Although we have tried to provide information in the manual that is as current
as possible, care teams must continue to bear in mind the evolving nature of
information related to HIV/AIDS and palliative care. Several new resources
have been developed since publication of the manual’s first edition. Many of
these new resources are listed in Section 19. Among them are resources that
address AIDS palliative care from different cultural and ethnic perspectives.
The development of these new resources is exciting and reflects a diverse
range of caring for the dying. These new contributions will help tremendously
to close the multi-ethnic gap in Canada’s response to HIV/AIDS.
In the first edition of this manual we attempted to reduce gender bias in the
writing by using the words “he” and “she” in alternate paragraphs. This proved
to be confusing for the reader. Therefore, we decided to address the issue of
gender bias by using the words “he” and “she” in alternate sections. We hope
this helps to reduce the readers’ confusion while, at the same time,
acknowledges that HIV and AIDS affect women and men. The decision not to
address the special needs of children dying with AIDS was made due to
limitations of space. Resources for expertise in pediatric HIV/AIDS care are
listed in Section 19.
The philosophical framework of this manual remains the same. That is, a
holistic approach to AIDS palliative care where the person in care, and those
closest to him or her, is considered the centre of care. This framework includes
all aspects of the person’s background, life experience, relationships and
hopes. It honours the value system of the dying person. When care team
members maintain a holistic perspective toward the person in care — and
toward one another — then differences in perspective can be overcome.
Although this manual has been written to specifically address the needs of care
teams, its overall purpose is to provide support to the community as a whole.
We believe that care teams do not (or should not) exist in isolation. They are
part of the larger community, no matter how large or small, rich or poor. In
supporting the work of care teams, we are also providing support to a
community that is coping with the presence of HIV and AIDS. Our goal
PREFACE l v
remains unchanged: to help individuals, families and communities help
themselves.
On behalf of the AIDS Committee of Toronto, I wish to extend an invitation to
all who read and use this manual. Please give us your feedback on its content
and presentation. Most of all, feel free to tell us about your experiences in
caring for your loved ones at home. For it is only through the sharing of
experience that we will grow and learn from our struggles and
accomplishments in HIV/AIDS. Your story is important to us and to others
who want to learn how to improve their response to the care of people living
and dying with HIV and AIDS.
This manual belongs to all of us, and we all have a part in making it work for
those we care about and love.
Charles Roy, DSW
Executive Director
AIDS Committee of Toronto
Your suggestions and comments should be directed to:
Care Team Manual
AIDS Committee of Toronto
399 Church Street, 4th Floor
Toronto, Ontario M5B 2J6
Tel: (416) 340-8484
Fax: (416) 340-8224
TDD: (416) 340-8122
E-mail: [email protected]
vi l PREFACE
SECTION 1 l 1
Introduction
T
his manual was born out of the experiences of men and women who
chose to die at home with AIDS and of those who cared for them:
partners, family members, friends, volunteers and health-care
professionals. The lessons we have learned from these experiences remind us
that dying at home with AIDS can be, in many cases, a good choice.
The information in this manual comes from a variety of sources and is based
on science and experience. We focus first on the central focus of the care team
circle, the person who is dying with AIDS. From the centre, the care team
grows outwards to include a diverse group of individuals who, collectively,
strive to meet the needs of the dying person.
The manual has been designed to encourage flexibility and creativity in
planning for and providing palliative care. We provide basic information
through easy to follow steps that promote comfort and dignity. We recognize
that death, like life, can bring both joy and sorrow. We follow the philosophy
that death is a natural part of life, and that dying is, in fact, living, and it is
something we have to live with. The aim of this manual is to support persons
living with dying and dying with AIDS, and those who care for them.
n
Who is this manual for?
The manual was written for people caring for those who choose to die at home
with AIDS: the care team. A care team is any group of individuals who, by
some connection with the dying person, come together to provide hands-on
care and emotional support. Throughout the manual, the needs of the dying
person are considered paramount. The manual can be left in the home as a
permanent resource for all members of the care team, whether lay persons or
professionals.
n
What does the manual include?
The manual is divided into nineteen sections. Each section addresses a
particular focus of palliative care as it relates to AIDS. Some sections provide
practical information on caregiving tasks, while others provide an overview of
AIDS-related information within the context of palliative care. Other sections
include organizational tools and charts, which have been included to facilitate
care team organization and activities. References for further reading and
listings of community-based and institutional agencies are also provided.
2 l INTRODUCTION
n
How to use this manual
The first and most important thing to consider when using this manual is that
there is no single right way of caring for someone who is dying. If we let
them, all people would choose their own way to die. Caring for someone who
is dying will always be a little different from one person to the next. The same
applies to the caregiver. We will all provide care to the dying in a way that is
unique and is a reflection of our way of being; of who we are. The connection
the caregiver has with the dying person will help define this. This manual is
intended to provide all caregivers with basic information to guide their
caregiving.
There is a lot of information in this manual, and you may not need to read it
all, or all at once. Set your own pace — one you are comfortable with. When
in doubt or when something does not seem clear, ask for help from a
health-care professional, an AIDS counsellor, or someone who has experience
with care teams.
Consider this manual as a guidebook or map — a source of information about
planning and providing care. Don’t feel that everything in the manual applies
to your situation or to the person you are caring for. The manual is a starting
point: a place to begin and a place to return for direction and information.
Not all your needs will be met by the manual. Reach out to those around you
when you need help or support. Use the charts and caregiving tools as you see
fit. They have been designed to simplify and organize particular tasks. You can
use the care team log (Section 3) as a means of communicating with other care
team members.
Above all, remember that the purpose of this manual is to show you how to
promote the dying person’s individuality, comfort and dignity. If everyone on
the care team follows the same basic rules, then the chances of providing
consistent and person-oriented care will be that much greater.
n
Some basic principles of palliative
care
A definition: Palliative care is the active, compassionate care of a person
whose disease is no longer responsive to traditional treatment aimed at cure.
The goal of palliative care is to promote quality of life through the control of
symptoms, whether they be physical, psychological, social or spiritual.
Palliative care has its roots in hospice care which traditionally has aimed to
provide shelter and care for the needy and afflicted, and whenever possible, in
INTRODUCTION l 3
a home-like setting. Although hospice care has been around for centuries, only
in the past few decades has it come to be accepted as a component of health
care.
You may hear about different kinds of palliative care or hospice care programs.
It is important to realize that palliative care is not a program, but an attitude and
an experience. Almost anyone can provide palliative care. As long as you
believe in the dignity of persons, then you can learn the skills you need to care
for someone who is dying. People who care for the dying are often hesitant
about what they should do. More often than not, they are surprised to discover
how much they can do.
Let’s look more closely at the four basic components of palliative care.
Physical
Concerns
Pain management and the control of other physical symptoms are crucial to the
principles of palliative care. If someone’s physical suffering is not dealt with
first, then there is little chance we can do much to alleviate non-physical
symptoms. There are many concrete things we can do to help relieve a person’s
physical pain and suffering. Whether it is through the use of drugs, hands-on
caregiving techniques, such as back rubs or complementary therapies, these
tools can be very effective in promoting and maintaining a person’s comfort.
Use the skills and expertise of health-care professionals and other caregivers to
manage the physical pain.
Psychological
Concerns
It is important to accept that palliative care is intimately connected with loss,
dying and death. And with death comes a wide variety of emotional and
psychological responses. Grief and other feelings related to loss are normal.
Death can be peaceful, yet it can also be a struggle. To care for someone who is
dying, you must acknowledge that palliative care is for the living as well as the
dying. Likewise, it is important to remember that just because someone is close
to the end of her life, it does not necessarily mean that existing psychological
concerns unrelated to death and dying no longer matter. Caring for the whole
person means caring for what is important to her at that moment and beyond.
Social Concerns
Although palliative care should always be centred around the person who is
dying, it is also important to consider the needs of those who are close to the
dying person. A part of them is dying as well. We are not only losing a person,
we are losing that person’s connection to the rest of the world: family, friends,
work, community. Palliative care is not confined to the bedside or to the home.
It is connected to the dying person’s larger social and cultural network.
Omitting the social aspects of palliative care would mean forgetting to care for
4 l INTRODUCTION
the person as a whole. Also, there may be legal and financial matters that need
to be addressed, and these are sometimes part of palliative care.
Spiritual
Concerns
Death often brings spiritual exploration and affirmation. Many people who are
dying will come to a deeper religious faith, while others will come to see life in
a new way. The reconciliation of relationships, new insights and appreciations;
all are part of cherishing life. Spiritual care involves supporting and being a
companion to the dying person through these personal moments. It may also
require us to question traditional spiritual practices and beliefs and one’s
religious faith.
n
Quality of life
Palliative care aims to promote quality of life through the control of symptoms.
Paramount to this principle is the concept that quality of life is defined by the
person who is dying. Palliative care should be planned to reflect the values of
the dying person; that is, what matters to her and what she cares about.
Respecting the dying person’s preferences is crucial to promoting dignity and
self-worth. We, the caregivers, need to take direction from the dying person
when we consider issues related to quality of life. We need to be prepared to be
her advocate when she can no longer participate in making decisions that will
affect her quality of life. And we need to accept our friend’s definition of
quality of life even when it conflicts with our own definition.
n
Bereavement
Palliative care does not end at the moment of death, but continues with support
and care for those who are left behind, the bereaved. It is important to consider
this when planning your caregiving, to ensure that those who are bereaved
have the support they need through the period of transition that follows the loss
of someone they love. It is helpful to remember that this period of transition
usually takes longer than we expect. All members of a care team need to
consider what their needs will be through this difficult time. No one is exempt
from this most human of conditions.
n
Care for the caregiver
Throughout the care team’s life, all caregivers need to be conscious of their
psychological and physical needs. Being honest with yourself is the key. Set
limits to what you can do, and how often. Ask questions when in doubt. Reach
out for support when you need it. Take care of yourself physically. Caring for
the dying can be as demanding and stressful as it is rewarding and challenging.
INTRODUCTION l 5
n
Confidentiality
AIDS is an illness that can carry a devastating stigma. Therefore, we must
always be mindful of the harm that can come from disclosure about a
diagnosis of AIDS or an HIV antibody status. Disclosure about someone’s
sexual orientation or behaviours (such as drug use) can also cause harmful
reactions. Be careful about what you say, and to whom. What happens and
what is shared within the care team circle must remain there. Also, caring for
someone who is dying can involve knowledge about very personal aspects
about her life. Unless otherwise directed by the dying person, the things you
learn should not be shared with anyone else. Respecting a person’s dignity
means respecting her right to privacy. These simple rules should apply to
everyone on the care team, not just the person who is dying.
n
Diversity
Despite the prevailing myth that HIV and AIDS affect only certain groups in
society, for example, gays, drug users, etc., the reality of the HIV epidemic
today is one that touches ALL communities, regardless of gender, race, creed,
sexual orientation, social or economic status. As we fast approach two decades
of struggling with HIV, we must accept the fact that HIV does not discriminate
in any way. It remains appalling that Aboriginals, other non-white ethnic
communities, IV drug users, sex workers and so many other vulnerable
communities continue to face the ravages of HIV/AIDS with minimal attention
to their unique needs and concerns from our governments and health-care
system.
AIDS palliative care strives to break through the walls of stigma meeting
face-to-face with those in need of compassion and care. As the epidemic
continues to grow in all sectors of society, so does our need to critically
examine our beliefs and values about ethnocultural diversity and so-called
“deviant” social behaviour. There is no room for intolerance in AIDS palliative
care and we all must face the issues related to diversity that make us feel
uncomfortable; that we fear.
By following the basic principles of palliative care, a care team can work
together to build a caring, trusting and supportive environment that will foster
compassion, dignity and love.
6 l INTRODUCTION
Notes
SECTION 2 l 7
Setting Up
a Care Team
n
Introduction
Many of you who are reading this section have never set up a care team, and
by the time you get through all the information here you will probably feel
overwhelmed. That is normal and expected.
What you need to know now is that you can do it. People who are charged
with the care of someone they love can move mountains. The same applies to
care teams, even teams with limited resources.
The first step in setting up a care team is deciding whether a care team is what
the dying person wants and needs. If a care team is the right thing, you will
need to assess what your friend needs in terms of care and caregiving
resources, both human and physical. Easy to follow steps have been provided
to help you through the assessment process. There are also checklists for
caregiving activities and supplies. As you read on, keep in mind that you don’t
need to do or have everything that is listed. Adapt our suggestions to what you
have, and remember to be flexible and creative with your planning.
n
Who decides?
Deciding to do it
The decision to set up a care team should be made by a number of people
working together. Those people will include:
•
The person being cared for. As long as he is able to make decisions, a
dying person has the right to decide what kind of care he wants. For this
reason, the dying person is always considered the centre of the care team
circle.
•
The people closest to the dying person. These people probably have
already been providing as much care as they can. A care team will give
them help, support and relief. Training within the care team will also give
them confidence; they need to know they have the skills to provide the best
possible care for their friend.
8 l SETTING UP A CARE TEAM
Together, these people make up the core care team. Some core care team
members may play a major role later as care team leaders, keeping the team
organized when other people become involved. We’ll talk more about the
special work of the care team leaders later on.
Who can help
you decide?
What if your
friend changes
his mind?
There are other people you may want to involve the decision to set up a care
team:
•
The dying person’s doctor, nurse, social worker or other professional
caregivers. These people will be able to help you decide what kind of care
your friend will need, and how feasible it is to provide that care at home.
•
A person with experience in palliative care at home. This might be a
Home Care nurse, a doctor, an advisor from your local AIDS organization
or community hospice program, or someone who has been on a care team
before.
We all have the right to make decisions about our lives and to change those
decisions when we want. This applies no less to a person who is receiving help
from others or who is dying. It is very important to keep in mind that at any
point your friend may change his mind about having a care team. You should
accept that decision, and support it no matter how difficult it may be.
Most people who find themselves helpless will eventually, in some way or
another, reach out for help. If you are ready to help, but your friend does not
ask for help, you will need tremendous patience and restraint. Never force your
views on your friend. The most you can do is ensure that he is aware of the
consequences of his decision. This is particularly important when considering
issues of safety. For example, people living with dementia may forget about
decisions they have previously made, or may wish to change their mind
without understanding the consequences. Be gentle while helping your friend
to understand the importance of safety; use your best judgment, and consult
with others.
Should your friend decide not to have a care team or to discontinue one that
has started, or decide to go to the hospital to die, the decision does not in any
way represent the care team’s failure to do its job. Your goal is to support your
friend in dying the way he chooses.
n
Getting started
Once you have decided to set up a care team, you will need to answer the
following:
o What kind of care is needed?
o Who can help you provide this care?
SETTING UP A CARE TEAM l 9
o What basic resources will you need?
o Who will make up the core care team?
o What regular supplies will you need, and how will you make sure they’re
kept on hand?
o Will you need any special equipment, and if so, how do you get it?
These may seem like difficult questions, but by taking them one at a time
you’ll see how you can answer them with ease.
n
What type of care is needed?
The person you are caring for must, if he can, be part of all decisions about
what care is needed. You will want to find out about his physical and
emotional states, and what people can do to improve them.
This is a difficult process for a person who is dying. He may have to admit he
needs help with things he could once do on his own, even very personal things
like going to the bathroom. It can be embarrassing to need help. It can be
depressing to give up one’s independence. Be sensitive to how much your
friend wants to talk about what he needs. You don’t have to do this all at once.
On the other hand, the dying person may be relieved to know he can get help
with things he can no longer do on his own. Ask your friend what he wants
help with; don’t try to take control of things he wants to do.
The Caregiving
Checklist
At the back of this section you will find a caregiving checklist that covers the
most important things you need to think about, so you and your friend can
decide together how best to provide care.
Note that the checklist is addressed to the person being cared for. Your friend
may want to read it and fill it out alone, or you may want to talk about it
together. If the answers to some questions are obvious to you, you can answer
them on your own. If not, let the person you’re caring for decide. If necessary,
your friend’s doctor or nurse can help answer some of the questions on the
checklist. The checklist also includes questions about the resources you have
available for care.
Who will
provide the
care?
Once you and your friend have identified what kind of care is needed, you
have to decide how many people it will take, who they should be and what
they are expected to do.
When deciding how many people you will need for your care team, it’s a good
idea to talk with someone who has experience with palliative care in the home.
A counsellor at your local AIDS organization or a Home Care nurse should be
able to help you with this. The number of people you need will depend on the
kinds of care your friend needs and the resources available to him. We’ll talk
more about this later.
Sit down with your friend and make a list of all the people he would like to
have on his care team. If it’s difficult for him to think of names, suggest that he
flip through his address book to help trigger his memory. It’s important to
remember that people can play different roles. Some people may have been on
a care team before and will be comfortable with providing direct, hands-on
care. Others might prefer to run errands, keep supplies on hand, make meals
that can be brought in, and so on.
Your care team should include any health-care professionals who can bring
special skills and experience to the home. Your friend’s doctor, counsellor or
social worker should be consulted to help with planning care. If your friend is
connected to the Home Care program, then the Home Care nurse can help to
educate the care team and provide special care. Your friend’s doctor can make
arrangements for Home Care services. (We’ll discuss them later on in this
section.)
You may need to get some help from volunteers who are connected with your
local AIDS organization or with a community hospice program. These people
can help fill some of the gaps on your care team. Many of them have
experienced care team work.
Once you list every potential care team member, you will need to contact them
and find out if they can join the team. Be clear about what they will be
expected to do, and explain to them that you will talk to them more at your
first care team meeting.
Everyone who has agreed to join the care team should meet to discuss your
friend’s needs and wants, to get to know one another and to begin planning the
care team’s activities. Some guidelines for this meeting are outlined later in
this section.
n
The Home
Environment
What are your resources?
It is expected that, in most cases, your care team will be caring for your friend
in his home or the home of someone close to him. This does not mean,
however, that you can’t set up a care team for someone who is staying at a
hospital or a hospice. Your care team should go wherever your friend wants it
to go.
When planning to care for someone at home, you must look at the space
carefully and consider the following points:
o Is there room to provide privacy for your friend and allow someone else to
be there? To stay overnight there?
o How accessible is the space for a person who has trouble getting around? Is
it easy to go up and down the stairs? Is it easy to move a wheelchair around
the furniture?
o How safe is the bathroom for your friend? Are there grab bars around the
toilet or bathtub? Is there a skid-free mat on the floor of the tub or shower?
o Is there enough room to store caregiving supplies? Can you make more
room by storing furniture or other large items? Are there laundry facilities
in the home, in the building, or close by?
o Do the fridge and stove work? Could the care team prepare meals there or
will they have to be brought in?
o Is there a telephone? If not, how will you arrange to communicate with the
care team, with the doctor or nurse, with emergency services?
o Is the neighbourhood safe? Would you be concerned about people entering
or leaving the home when it is dark?
Money
Caring for someone at home costs money. Although many of the more
expensive services (nursing care, drugs, special equipment and so on) may be
paid for by a provincial health plan, social assistance benefits or a private
insurance plan, your friend and the care team will need financial resources to
look after the costs of daily living: food, laundry, supplies, and so on. All these
expenses are on top of your friend’s monthly expenses: rent, phone, electricity,
etc.
A person’s financial situation is a very private matter. Only someone very
close to the person you are caring for should talk to him about money. If he has
not already given someone power of attorney (the legal right to make financial
decisions on his behalf), you may want to discuss this with him. If someone
has power of attorney, you may avoid some difficult situations should your
friend become unable to make good decisions.
These are some of the questions you need to ask about money:
o Who is in charge of financial resources: your friend, his power of attorney,
his partner, another family member, or a public trustee?
o What is your friend’s monthly income and where does it come from? (For
example, long-term disability, government assistance programs, savings.)
o Where is the money kept? If it is in the bank, in what kind of accounts?
Chequing or savings?
o Are there other financial resources, such as RRSPs, savings plans or bonds?
o What debts does your friend have and how are they managed? Are there
mortgages, car payments, credit cards?
o How will cash be handled in the home? How will you pay for groceries,
drugs, supplies?
o Is there money to cover the costs of a funeral, burial or memorial service?
o Has your friend prepared a will and is it up to date? Has he appointed an
executor for his estate? If not, it is important to ask your friend to consider
doing these things. Dying without a will can be problematic. Seeking the
advice of a lawyer knowledgeable in estate affairs can be very helpful.
Not everyone on the care team needs to know about your friend’s financial
status; this is confidential information. Only your friend can decide who
should know about his financial resources. If you or your friend needs help with
financial planning, contact your local AIDS organization. They should be able
to connect you with an experienced and reliable financial advisor.
Insurance
Policies
After you help your friend with his financial arrangements, look into any
insurance policies he may have. These include personal or work-related
policies. The following questions should be asked about insurance policies:
o What kinds of policies does your friend hold (life, long-term disability,
extended health care, home insurance, etc.) and with which companies
(previous employer, Blue Cross, etc.)?
o Where are the policies (in the home, a safety deposit box, etc.)? Are the
premiums up to date or have the policies expired?
o What are the conditions of each policy? Some life insurance policies require
a person to continue to pay premiums while he is on long-term disability. If
your friend has an extended health-care policy, what kinds of expenses
(nursing care, drugs) are covered and for how long? Some policies limit the
number of nursing hours that can be provided and how much money can be
spent on supplies. What are the deductibles rates for each policy? Decide
when you want to use these resources. (It usually is a good idea to reserve
insurance benefits for when the caregiving becomes more intense or your
friend needs around-the-clock care.) What paperwork is needed to have
these services initiated, and how long will it take before they start?
Looking into insurance policies can be tedious work but it may be worth your
while. Some policies will make it possible for your care team to look after your
friend without too many struggles. Others might provide nursing care, but for a
limited period of time. Once again, ask an experienced advisor for help when
reviewing your friend’s insurance policies, and don’t forget to involve your
friend in these discussions.
Professional
and Community
Resources
Earlier we said that health-care professionals, staff of community-based
services and volunteers should be included in the care team circle. We need to
mention them again, because they have special skills that are a necessary part
of what the care team will do.
Among the players we mentioned before, there are numerous other
professionals who can provide support and help to your friend and the care
team. Some of these professionals include: physical and occupational
therapists, members of the clergy and other spiritual advisors, lawyers,
massage therapists, naturopaths, homeopaths, specialists in Chinese medicine;
the list goes on. Perhaps your friend is already connected with one or more of
these professionals. If not, you may want to suggest that they look into what
these professionals have to offer.
Although all the professionals, counsellors and volunteers will bring special
skills to the care team, they must be seen as persons. All members of the care
team are equal partners, and they must work together to respond to the needs
of your friend. Control does not lie in the hands of the care team or any one
professional; it is in the hands of the person in care.
n
Coordination: establishing the core
care team
As we mentioned before, the core care team will include those people your
friend has identified as the primary leaders of his care team. (Your friend
should remain in control of the care team for as long as he is able or willing.)
The core care team will be responsible for coordinating all aspects of care team
activities. Although these duties may be shared among different individuals,
one person, or a small group, needs to maintain ongoing and consistent
coordination of what the care team does. Coordination is the key to running a
successful care team. Most of us have some experience with systems that fall
apart because little attention was paid to keeping things on track and
organized.
The work of the core care team takes a lot of time and energy. Basically, the
core care team is responsible for ensuring that whatever needs to be done for
your friend happens. Both your friend and the care team will rely on the core
care team to plan for and provide care. Although this may seem an
overwhelming task at first, it will not be so difficult as long as the core care
team remains firmly rooted in the spirit of working as a team with your friend,
with care team members and with health professionals. Once a core care team
has been established, make sure that everyone on the care team knows who the
core people are and how they can be reached.
n
Caregiving supplies: what do you
need?
All care teams, no matter how big or small, will need some basic supplies.
Naturally, as your friend becomes more dependent on the care team, the need
for supplies will increase. At the end of this section is a checklist for the most
commonly used caregiving and household supplies. Some supplies may be
available from your provincial or municipal Home Care program; these are
clearly marked. All other supplies will have to be purchased or donated.
Making lists of supplies you will need is not enough. You will also have to
consider the following:
o Where will the supplies be stored in the home?
o Who will be responsible for purchasing and making sure that supplies don’t
run out?
o When new supplies are being used or when care team members are using
them for the first time, who will arrange for someone to come in and teach
the care team about these supplies?
Running out of supplies when you need them most can put you in a difficult
situation. It may leave your friend feeling worried or upset, and it could harm
the trust he has in the care team. Being prepared will help you avoid these
situations. Use your creativity; you will be surprised how much you can do
with only a little. After all, few people are accustomed to having everything
they need.
n
Special needs and special equipment
In the final stages of illness, some people will require special treatments or
equipment as part of their care. If this happens, a doctor or nurse can order the
appropriate equipment, and have it delivered to the home to be set up by a
health professional. Make sure some people from the care team are instructed
on how the equipment works and on what to do if something goes wrong.
Some of the kinds of equipment we are talking about include:
o hospital beds and special mattresses
o oxygen tanks, tubing and masks
o suction machines (used to suction secretions in the throat or lungs, or to be
connected to chest tubes when a lung has collapsed)
o intravenous systems (some of these are connected to electrical pumps).
n
Staying organized
Already, you and your friend have done a tremendous amount of work. Now
it’s time to start putting all the pieces together, in an organized fashion, so the
care team can start its wonderful work. There are six steps to organizing your
care team:
Defining the
Level of Care
Once it is clear what your friend needs and wants and what resources are
available, you can decide what level of care you will provide. Levels of care
will vary from one care team to the next, and will often change within the care
team itself. Some teams will need to plan their care around daily or weekly
visits, while others will need to plan for around-the-clock care.
Don’t make this decision alone. Include your friend and someone who is
experienced with palliative care. One of the most important considerations is
safety. Think very carefully about whether your friend should be alone. For
example, someone who is physically well but is often confused or has
dementia will not be safe if left alone for long periods of time.
Accept the fact that you may need to increase or decrease the level of care at a
moment’s notice. People with AIDS often ride a roller coaster when it comes
to health. One day they may be up and about, the next day lying in bed
seemingly close to death, then the next morning they might ask to go for a
walk. Your team needs to be flexible and ready to respond to your friend’s
health status.
Defining Care
Team Roles
Most of the initial planning stages will have been done by the person you are
caring for and his core care team. The next step is to identify your care team
roles.
Not everyone on the care team will be able to do every task. Let people decide
for themselves what they can and cannot do. Some people may want to start
with household chores or running errands; others may want to provide
hands-on care.
Listen to your friend. He may have certain people in mind for certain tasks.
Likewise, he may not want certain people doing certain things. Although he is
in control, don’t feel you can’t negotiate with him. There may be times when
the only person who can help is someone your friend would rather not have
around. Do what you can to compromise, but always make sure your friend is
safe.
In most cases, the core care team is responsible for meeting your friend’s needs
and for managing the team as a whole. This does not mean that other members
of the team cannot take on leadership roles. Let people take charge of areas in
which they are comfortable. If someone wants to be in charge of supplies, let
him. Delegating is the key to a successful team. Avoid asking some members
to take on too much.
Finally, and most important, don’t forget to include your friend in this process.
One of the care team’s primary goals is to promote your friend’s individuality
and dignity. Let him do as much as possible. And, when necessary, help him to
decide how things should be done and by whom.
Delegating and
Scheduling
Tasks
Once each person on the care team has decided what he or she can or cannot
do, start delegating tasks. Make sure everyone is clear about his or her role.
Tell all team members to whom they can go for help. There is a team
scheduling chart in Section 3. Using the chart, assign caregiving shifts. There
will likely be gaps. To fill them, plan to use outside help (volunteers, nursing
services).
Some people will be joining a care team for the first time. It might be helpful
to pair them up with someone experienced (a buddy), so they can ease into the
care team with the support of someone who has been there before.
Setting Up the
Environment
This involves some paperwork and some physical organizing. Make sure all
the charts in Section 3 are filled in and kept up to date. These charts will help
to keep track of phone numbers, where things are around the house, and so on.
They are important tools that everyone on the care team will use at some time
or another.
Make sure everyone knows where this manual is and how to use it. The book
belongs to the care team and should be available to anyone who needs it.
Look around the home and see where you might keep your supplies. Be sure to
involve your friend when you do this; remember, this is his home, and you are
a special guest. Don’t take over and invade your friend’s private space. Get a
feeling for the space the way it is, and become familiar with it.
With your friend’s permission, it may be a good idea to consult with a Home
Care nurse or occupational therapist to assess the home environment for safety
and what devices are available to help promote safety in the home.
Check with your friend about smoking and other household rules: leaving
shoes at the door; how to take and receive telephone messages; where a guest
can spend the night; and so on. As the team becomes more settled into
caregiving, there is a tendency to forget that you are guests in someone’s
home. Remember to respect your friend’s space.
Establishing
a Rapport
and Opening
Lines of
Communication
Every care team will develop its own way of communicating and sharing. The
process will be defined by those who are involved and by the needs of the
person in care. Our best advice is to just let it happen. The worst thing a care
team can do is to limit or restrict the opportunity for people to express their
feelings.
Most care teams will benefit from holding a group meeting before the team
actually starts its work. Such a meeting has some very practical benefits. For
example, everyone can hear what the care team goals are and what the
situation is in the home. A lot of useful planning can be done, and the meeting
will save you many hours on the telephone.
A care team meeting is also an opportunity for everyone to meet and to begin
opening lines of communication. Although many team members will do their
work alone, they must communicate with others on the team. It is important
that the care your friend receives is consistent and reliable. Change can be
distressing to someone who is losing control of his life. If everyone on the care
team decides to do their own thing, the team might run into trouble.
The care team log (found in Section 3) has been designed as a way for the
team to communicate. Write a few lines every time you work a shift. Read
what others have written before you and look for important messages or
changes to the caregiving routine. Another effective way of communicating is
to hold regular meetings. We’ll talk about that later.
Caring for the
Care Team
Caring for your friend will probably be one of the most rewarding experiences
of your life, but it will also be very hard work. You must be honest with
yourself when you’re deciding what and how much you will do for the care
team. Your friend needs to rely on you, to trust that you will be there for him
when he needs you. If you try to do too much, you’ll be too tired to do a good
job.
Setting limits is the key. Carefully consider all that is going on in your life, and
make decisions about what you can offer your friend and the care team.
Working on the care team will affect your regular routine. Think about this
carefully. How do you plan to cope with such a change? Take care of yourself
physically. Eat well, exercise and get lots of rest. You will need a lot of energy.
Consider how your body responds to stress, and try to manage that stress.
Listen to and stay in touch with your emotions. Caring for a dying person will
raise many feelings and emotions. Some of these may be very new to you, and
because of that they may be frightening. Remember that the fear of dying is a
normal response, part of being human. Reach out to others. Talk to those who
are close to you, to other members on the care team. Visit with a counsellor at
your local AIDS organization. You should never be ashamed of taking care of
yourself.
Make sure the care team holds regular meetings. These meetings should
provide care team members with an opportunity to share their feelings as well
as offer support to others. The meetings are also an excellent way to share
information related to the care team’s activities; for example: updates on your
friend’s condition, changes to the care team routine, new equipment or
supplies, learning sessions. From time to time, consider inviting guest speakers
to educate the team or facilitate working through emotions or difficult
scenarios.
Take breaks when you need them. There is no place for martyrs on a care
team. If you feel you need to take some time off, say so and do it. Pushing
yourself to unreasonable limits can lead to burnout, which often takes several
months to repair. Remember, your friend needs you to help him; a rather
impossible task if you need help yourself.
Don’t take life in the care team too seriously. This doesn’t mean you should be
irresponsible. Maintain a sense of humour and cherish the moments of joy you
share with your friend. Although care team work has its serious aspects, it can
also have wonderful moments of fun.
n
Some notes on Home Care programs
In most provinces across Canada, certain health-care services may be provided
at home which are covered by the provincial health insurance plan. However,
some restrictions may apply to these services, so you will need to find out
exactly what services are available and how you get hooked up to them. (See
Section 19 for some guidelines on how to do this.)
In most cases, anyone with provincial health insurance can apply for Home
Care. Sometimes, the application must be signed by a medical doctor, who will
assume medical responsibility for the person receiving the service. If Home
Care is not already in place for your friend, call his family doctor and ask
about it.
Once an application is made, a Home Care nurse will visit or telephone the
home to assess what services are required and what should be made available.
Not everyone is eligible for all services.
Although this list will differ from province to province, services and supplies
available through Home Care programs may include:
•
•
•
•
•
•
•
•
•
•
•
nursing care
consultation from an occupational and/or physical therapist
consultation from a speech pathologist
nutritional counselling
social work
home-making services (cleaning, cooking, etc.)
hospital equipment (beds, oxygen)
laboratory services (blood tests in the home)
Meals-on-Wheels (one hot meal per day)
medical supplies (latex gloves, diapers)
transportation to the doctor’s office for scheduled appointments.
Caring for someone who is dying takes a lot of energy and can cost a
considerable amount of money. Your local Home Care program can be a big
help on both counts.
n
Your first care team meeting
Once you have answered the questions in this section and filled out the
caregiving checklist, you’re ready to hold your first care team meeting.
Ask your friend if he wants to attend the meeting. If he says yes, then you will
probably need to hold the meeting in your friend’s home. If he says no, it’s a
good idea to hold the meeting some place else. This makes it easier for people
to ask questions they may feel uncomfortable asking in front of the person in
care.
Below, you will find a sample agenda for your first meeting (there are also
charts in Section 3 to use as well). It isn’t necessary to discuss everything at
your first meeting. Use your best judgment in setting priorities. However, you
should note that bringing everyone together can be a difficult task. Time is
precious to all of us, so use it wisely. Depending on the needs of the person in
care and on how many people plan to attend, you will probably need two or
three hours to run your first meeting.
Sample Agenda
Designate someone to lead the meeting.
1. Introduce yourself and give a brief history of how you know the person in
care. Then go around the room so each person can do this.
2. Next, an overview of your friend’s condition (physical and psychological)
should be presented. Outline what your friend expects the care team to do
and what his specific needs are. Other important details to share are: who
the care team leaders are, who the family doctor is, and what Home Care
services (if any) are being used. Is there a plan for your friend to go to a
hospice or to the hospital?
3. Talk about the home environment. Does the person in care live alone or
with someone? Briefly describe the physical layout of the home and where
household and caregiving supplies are being kept. Where does someone do
laundry? Where is the nearest grocery store; pharmacy? Give the people at
the meeting an idea of what each job involves (for example, doing the
shopping).
4. Go back to your list of caregiving needs and discuss each one so the team
understands what needs to be done and how. If there are special needs,
such as changing dressings or giving medications, discuss these and
explain who will be doing them. Ask people if they want training on any
of these tasks and decide how the training sessions will be arranged.
5. Now you are ready to discuss how the care team will work. Ask people
what they are willing to do and when they are available, then assign shifts
accordingly. (The care team schedule in Section 3 can help you with this
task.) You may not be able to fill all the shifts at once. Do the best you can.
If Home Care nursing is involved, don’t forget to include those services on
the schedule. Designate individuals to look after certain tasks, for example
ordering supplies when they are low, going to the pharmacy for medication
and calling other care team members.
6. Discuss how the team members will communicate with each other.
Explain about the care team log (see Section 3) and tell team members
who to call when something needs immediate attention.
7. Tell people about this manual, what it is, how to use it and where it will be
kept.
8. Decide when and how often the care team will meet. It’s a good idea to
schedule your next meeting before everyone leaves. It will save you hours
of telephone work.
9. Close the meeting by asking each person at the meeting how he or she
feels about his or her first meeting and about the care team in general.
Make sure you include everyone.
n
Caregiving checklist
As the person receiving care, you have a right to tell people what you need and
to help decide how those needs will be met. This checklist will help you tell
the friends on your care team what kind of help you want. It will also give you
an opportunity to direct the care team to other people you know, who can help.
You do not need to answer all (or any) of these questions. Your privacy will be
respected. The more you can share with the care team, the more able it will be
to help you at home.
Physical and
Medical
Concerns
What specific illnesses do you have, other than AIDS, that your friends
might need to know about?
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
1. Are you allergic to any medications?
o No. (Skip to next question.)
o Yes. Please list them.
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
2. Do you take special medications?
o No. (Skip to next question.)
o Yes. If you know what they are and the doses required, list them below.
If not, you can ask your friends to find out from your doctor.
Medication
Dose
Times to be taken
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
3. Do you want to take your medications on your own? Or do you want
your friends to keep track of them and give them to you? Check your
answer.
o I’ll do it myself.
o I’d like help now.
o I might want help later, but not now.
4. Are there any additional medical concerns, other than medications
(special treatments for example) that you feel your care team should
know about?
o No.
o Yes. (Please list them.)
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
Getting Around
1. Is it usually easy for you to leave home and get around by yourself?
o Yes.
o No.
2. Is it easy for you to get around in your home, on your own?
o Yes.
o No.
3. If you need help getting around, what kind of help would you like?
o Just someone nearby who can help when I need it.
o A cane or a walker.
o A wheelchair.
o Other: _________________________________________________
4. Do you have difficulty moving any part(s) of your body?
o Arms:
o Left
o Right
o Both
o Legs:
o Left
o Right
o Both
o Other: ________________________________________________
5. When you are at home, how much time do you spend in bed?
o All of the time.
o Most of the time.
o Only when I’m tired or for sleep at night.
6. Do you need any help with the following tasks? (Check all that apply.)
o Personal hygiene (bathing, personal grooming).
o Dressing.
o Using the toilet.
o Doing housework (cleaning, laundry, garbage disposal).
o Running errands (grocery shopping, mailing letters, picking up
prescriptions and so on).
o Pet care. Type of pet(s):____________________________________
o Other: _________________________________________________
7. In Section 3 of this manual you will find a chart titled Household Rules
and Where Things Are. Please fill in this chart so your care team will
know where things are kept in your home and what specific rules they will
need to follow.
Nutritional
Concerns
List any specific nutritional needs you have (special diet, lactose
intolerance, etc.).
___________________________________________________________
___________________________________________________________
1. Do you have any food allergies? Please list them below.
_________________________________________________________
_________________________________________________________
_________________________________________________________
2. Do you need any help with preparing your meals?
o I’ll prepare them myself.
o Yes, I’d like help now.
o I might want help later.
o I have meals delivered to my home. By which agency/service?
_________________________________________________________
3. Have you noticed any changes in your appetite that you would like the
care team to know about?
o Less than normal.
o Normal.
o More than normal.
o Never the same.
4. Do you have any difficulties with eating food or drinking fluids? What
help would you like?
_________________________________________________________
_________________________________________________________
_________________________________________________________
5. In Section 3 of this manual you will find a chart titled Likes and Dislikes.
Please use this chart to list foods you like and those you’d rather not eat.
Symptom
Control
Do you have any problems with pain? If so, where and what makes it
better?
___________________________________________________________
___________________________________________________________
1. Do you have any specific physical symptoms you want your care team
to know about? Check all that apply.
o Nausea
o Constipation
o Incontinence
o Breathing Problems
o Fever
o Seizures
o Skin (circle: rashes,
o Vomiting
o Diarrhea
o Night Sweats
o Fatigue or weakness
o Chills
o Thrush or sores (mouth or throat)
o Other_____________________________
dry skin, wounds)
2. Do you have any mental or psychological concerns that you would like
your care team to know about? Check all that apply.
o Confusion
o Depression
Health Care
and Related
Services
o Memory loss or forgetfulness
o Other_____________________________
In Section 3 of this manual you will find a chart titled IMPORTANT
TELEPHONE NUMBERS. Please fill in the names of those persons and
professionals you would like listed in your care team manual.
1. Are there any services or professionals you feel would be helpful?
Your care team may be able to help you find them.
_________________________________________________________
_________________________________________________________
2. Have you made arrangements to go to a hospice?
o Yes. I am on the waiting list at_______________________________
o No, but I would like to look into it.
o No, I want to stay at home.
o No, I have made other arrangements.
Financial and
Legal Concerns
Before answering the following questions, make sure you read the information
on money and insurance policies presented earlier in this section.
1. Have you prepared a will? Have you designated someone as the
executor of your estate?
o Yes.
o No, and I’ll take care of that myself.
o No, and I’d like some help now.
2. Do you wish to have a funeral? Have you made these arrangements?
o Yes, the arrangements have been made.
o Yes, and I’ll take care of the arrangements myself.
o Yes, and I’d like help to arrange it.
o No, I don’t want a funeral. Here are my preferred options:
_________________________________________________________
3. Do you need any help with managing your financial affairs (banking,
paying the rent and bills)?
o I’ll take care of them myself.
o Yes, I’d like help now.
o I have given someone power of attorney who is helping me.
4. Do you have any insurance policies that might help with your care?
o Yes, and I’ll take care of them myself.
o Yes, and I would like help now.
o I don’t know and would like some help finding out.
Human
Resources
Depending on what you would like your care team to do for you and how
often, you will need to make a list of the people you’d like to provide your
care. Your friends can help you make sure you have enough people on your
team.
You may find that getting the help of volunteers who have been trained to
work on a care team is a good idea. Think carefully about how you feel about
strangers coming into your home. But remember, they will only be strangers
for a short period of time, and you may really need their help.
n
Checklist for household and
caregiving supplies
This is a comprehensive list. You may not need everything that is listed below
or you may have other needs which are not listed here.
Household
Supplies
o Linens: bed sheets, blankets, pillows, towels, face-cloths, and
pyjamas
o Cleaning supplies (along with the usual detergents, you may want to have
some bleach and deodorizers available)
o Cooking and feeding utensils, ice cube trays, straws, feeding syringe
o Garbage bags, toilet paper, Kleenex, paper towels
Caregiving
supplies
o * Hospital bed with side rails, adjustable bedside table
o * Foam, air, sheepskin mattress
o * Commode (portable toilet)
o * Shower stool
o * Bedpan and urinal
o * Latex gloves, masks and plastic aprons
o * Attends (diapers) and incontinent pads
o * Wheelchair, walker or cane
o * Kidney basin
o Washing basin for bed baths
o Three bins or baskets: one for linen and two for garbage
o Flashlight or nightlight
o Thermometer (oral and/or rectal)
o Watch or clock with a second hand
o Personal hygiene: toothbrush, combs, brush, nail clippers, shaving kit,
tampons or pads
o Hand cream or body lotion and talcum powder
o Vaseline
o Water jug
o Antiseptic or rubbing alcohol
* May be available through Home Care or government assistance programs
Other items
o Stereo or radio
o TV, VCR
o Electric blanket
o Fan
o Other:
___________________________________________________________
___________________________________________________________
___________________________________________________________
___________________________________________________________
Notes
SECTION 3 l 29
Care Team
Records
n
Introduction
This section includes charts that have been designed to help you record
important information about the care team, its activities and other related
concerns. We give you hints on how to use them in the introduction. Feel free
to move the charts around (for example, to the front of the manual) or
photocopy them so you don’t run out of space. There is also a medication chart
at the back of Section 8.
n
Care team members
Record the names and phone numbers of all care team members. Don’t forget
to update it regularly. Short notes, for example “best time to reach,” are also
helpful. It may also help to record the role of each care team member, since
different people on the team will be doing different things, for example
“cooking, running errands, personal care,” etc.
n
Care team schedule
This chart provides a record of when care team members will be in the home.
Write the name of the caregiver in the box that corresponds with the time his
or her shift begins. Then draw an arrow to the time his or her shift ends. Don’t
forget to include Home Care nurses and paid home makers or home support
workers. A sample care team schedule is included for your reference.
n
Important telephone numbers
This chart lists the telephone numbers of key players on the care team who
may need to be contacted in case of an emergency, when a problem arises or
when information is needed. Be sure to include all available phone numbers
(e.g., direct line, cell phone, pager, etc.). It might be helpful to indicate the
names of individuals who should be contacted first with an asterisk (*).
30 l CARE TEAM RECORDS
n
Care team log
The care team log is a record of the care team’s activities and a way of
communicating with other care team members. Start by recording the date, the
time your shift began and ended, and your name. Then, in the notes section,
briefly describe what happened during your shift and make note of any
changes you may have noticed.
Always take a few moments to read the log at the beginning of your shift.
Communication is vital to consistent caregiving. The log is not the place for
important messages. (These should be written on a separate piece of paper and
posted on the front of the manual.) The log is the care team’s diary and often
becomes a cherished account of the dying person’s last few days or months.
Treat it with respect.
n
Likes and dislikes
This chart provides you with an opportunity to record any likes or dislikes that
are important to the care team. Don’t be surprised if the information on this
chart changes frequently, but make sure you give it a glance every once in a
while. Some examples of likes and dislikes are: food, music, caregiving tasks,
and so on.
Also record your friend’s birthday and any other special anniversaries that
might need special attention from the care team.
n
House rules and where things are
Some examples of house rules are: no smoking, leave shoes at the door, no
dogs allowed. Record all that you feel are necessary and helpful. A list of
where supplies are kept is useful to those who visit the home for the first time.
Note when things have been moved around and add any new equipment or
supplies not already listed.
n
Special considerations
This chart provides you a space to record any special considerations related to
your friend’s dying. Such considerations include: spiritual or religious
concerns; particular rituals related to handling the body after death; and funeral
or memorial service arrangements. When it appears death is near, it may be
helpful to move this chart to the front of the manual.
CARE TEAM RECORDS l 31
CARE TEAM MEMBERS
Name & Role
___________________________________________________
Telephone Numbers
Best time to Reach
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
CARE TEAM MEMBERS
Name & Role
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
Telephone Numbers
Best time to Reach
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
________________________________
_____________________________
CARE TEAM SCHEDULE
Monday
_______________
Tuesday
______________
Wednesday
________________
Thursday
_______________
Friday
_______________
Saturday
______________
Sunday
_______________
8 am
_______________
______________
________________
_______________
_______________
______________
_______________
9 am
_______________
______________
________________
_______________
_______________
______________
_______________
10 am
_______________
______________
________________
_______________
_______________
______________
_______________
11 am
_______________
______________
________________
_______________
_______________
______________
_______________
12 pm
_______________
______________
________________
_______________
_______________
______________
_______________
1 pm
_______________
______________
________________
_______________
_______________
______________
_______________
2 pm
_______________
______________
________________
_______________
_______________
______________
_______________
3 pm
_______________
______________
________________
_______________
_______________
______________
_______________
4 pm
_______________
______________
________________
_______________
_______________
______________
_______________
5 pm
_______________
______________
________________
_______________
_______________
______________
_______________
6 pm
_______________
______________
________________
_______________
_______________
______________
_______________
7 pm
_______________
______________
________________
_______________
_______________
______________
_______________
8 pm
_______________
______________
________________
_______________
_______________
______________
_______________
9 pm
_______________
______________
________________
_______________
_______________
______________
_______________
10 pm
_______________
______________
________________
_______________
_______________
______________
_______________
11 pm
_______________
______________
________________
_______________
_______________
______________
_______________
Midnight
to 8 am
_______________
______________
________________
_______________
_______________
______________
_______________
CARE TEAM SCHEDULE
Monday
_______________
Tuesday
______________
Wednesday
________________
Thursday
_______________
Friday
_______________
Saturday
______________
Sunday
_______________
8 am
_______________
______________
________________
_______________
_______________
______________
_______________
9 am
_______________
______________
________________
_______________
_______________
______________
_______________
10 am
_______________
______________
________________
_______________
_______________
______________
_______________
11 am
_______________
______________
________________
_______________
_______________
______________
_______________
12 pm
_______________
______________
________________
_______________
_______________
______________
_______________
1 pm
_______________
______________
________________
_______________
_______________
______________
_______________
2 pm
_______________
______________
________________
_______________
_______________
______________
_______________
3 pm
_______________
______________
________________
_______________
_______________
______________
_______________
4 pm
_______________
______________
________________
_______________
_______________
______________
_______________
5 pm
_______________
______________
________________
_______________
_______________
______________
_______________
6 pm
_______________
______________
________________
_______________
_______________
______________
_______________
7 pm
_______________
______________
________________
_______________
_______________
______________
_______________
8 pm
_______________
______________
________________
_______________
_______________
______________
_______________
9 pm
_______________
______________
________________
_______________
_______________
______________
_______________
10 pm
_______________
______________
________________
_______________
_______________
______________
_______________
11 pm
_______________
______________
________________
_______________
_______________
______________
_______________
Midnight
to 8 am
_______________
______________
________________
_______________
_______________
______________
_______________
CARE TEAM SCHEDULE
Monday
_______________
Tuesday
______________
Wednesday
________________
Thursday
_______________
Friday
_______________
Saturday
______________
Sunday
_______________
8 am
_______________
______________
________________
_______________
_______________
______________
_______________
9 am
_______________
______________
________________
_______________
_______________
______________
_______________
10 am
_______________
______________
________________
_______________
_______________
______________
_______________
11 am
_______________
______________
________________
_______________
_______________
______________
_______________
12 pm
_______________
______________
________________
_______________
_______________
______________
_______________
1 pm
_______________
______________
________________
_______________
_______________
______________
_______________
2 pm
_______________
______________
________________
_______________
_______________
______________
_______________
3 pm
_______________
______________
________________
_______________
_______________
______________
_______________
4 pm
_______________
______________
________________
_______________
_______________
______________
_______________
5 pm
_______________
______________
________________
_______________
_______________
______________
_______________
6 pm
_______________
______________
________________
_______________
_______________
______________
_______________
7 pm
_______________
______________
________________
_______________
_______________
______________
_______________
8 pm
_______________
______________
________________
_______________
_______________
______________
_______________
9 pm
_______________
______________
________________
_______________
_______________
______________
_______________
10 pm
_______________
______________
________________
_______________
_______________
______________
_______________
11 pm
_______________
______________
________________
_______________
_______________
______________
_______________
Midnight
to 8 am
_______________
______________
________________
_______________
_______________
______________
_______________
IMPORTANT TELEPHONE NUMBERS
Emergency: Call those people marked with a (*) first
Family / Partners / Friends
Name
___________________________________________________
Telephone
________________________________
Relationship
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
Name
___________________________________________________
Telephone
________________________________
Best time to reach
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
Name
___________________________________________________
Telephone
________________________________
Best time to reach
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
________________________________
_____________________________
___________________________________________________
Doctor
________________________________
_____________________________
___________________________________________________
Spiritual Advisor
________________________________
_____________________________
___________________________________________________
Funeral Home
________________________________
_____________________________
Care team leaders
Persons to call at time of death
Other telephone numbers
Name
___________________________________________________
Telephone
________________________________
Best time to reach
_____________________________
___________________________________________________
Family doctor
________________________________
_____________________________
___________________________________________________
Specialist
________________________________
_____________________________
___________________________________________________
Specialist
________________________________
_____________________________
___________________________________________________
Pharmacy
________________________________
_____________________________
___________________________________________________
Hospital Clinic
________________________________
_____________________________
___________________________________________________
Hospital Emergency
________________________________
_____________________________
___________________________________________________
Primary Home Care Nurse
________________________________
_____________________________
___________________________________________________
Nursing Agency
________________________________
_____________________________
___________________________________________________
Oxygen Supplier
________________________________
_____________________________
___________________________________________________
Social Worker
________________________________
_____________________________
___________________________________________________
Income Assistance Worker
________________________________
_____________________________
___________________________________________________
Counsellor
________________________________
_____________________________
___________________________________________________
Dentist
________________________________
_____________________________
___________________________________________________
Lawyer
________________________________
_____________________________
___________________________________________________
Other
________________________________
_____________________________
___________________________________________________
Other
________________________________
_____________________________
CARE TEAM LOG
Date, Time In / Time Out
Notes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
CARE TEAM LOG
Notes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
CARE TEAM LOG
Notes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
CARE TEAM LOG
Notes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
LIKES & DISLIKES
Birthday: _________________________________________________________________________________________________________________
Anniversaries:_____________________________________________________________________________________________________________
Likes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Dislikes
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
HOUSEHOLD RULES AND WHERE THINGS ARE
Check all that apply:
o
Smoking is NOT permitted
o
Smoking is permitted (where) ___________________________________________________________________________________________
o
No personal calls forwarded to this number
o
Personal calls may be forwarded to this number ___________________________________________________________________________
Other Rules:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Where things are:
Caregiving Supplies:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Medications:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Extra Linens:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Laundry Facilities:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Laundry Detergent:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Household Cleaning Supplies:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Vacuum Cleaner:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Garbage Bags:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Garbage Pick-up Days:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Closest Food Store:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Closest Pharmacy:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Other:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Other:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Other:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
SPECIAL CONSIDERATIONS
Spiritual or Religious Considerations:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Special Considerations for Handling the Body:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Funeral Arrangements:
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
_________________________________________________________________________________________________________________________
Notes
SECTION 4 l 49
Infection Control
n
Introduction
Infection control is a term that describes ways of preventing infections. It
protects all of us from infectious agents, for example bacteria and viruses, that
can make us ill. This section will give you some basic guidelines on how to
provide care that is geared towards preventing infection. Although our goal is to
protect both the receiver and the provider of care, our main concern is with
preventing the person in care from coming in contact with any infectious agents.
Caregivers must protect themselves from coming in contact with blood or body
fluids. We can do this in a number of ways. The most important thing to
remember is to always follow the basic rules.
Before we look at the basic rules, let’s quickly review how the HIV virus can be
transmitted.
HIV Transmission There are four ways the virus can be transmitted:
•
•
•
•
Through unprotected sexual contact with an infected person.
By sharing needles with an infected person.
From infected mother to fetus in the womb.
Through a blood transfusion that occurred before November 1985 (in
Canada).
All other forms of casual contact with an infected person, such as touching,
drinking from the same glass or using the same toilet, are not ways in which
HIV can be transmitted.
Remember, the ways in which HIV is transmitted are very limited. There are
other bugs (bacteria or viruses), such as Hepatitis B and Hepatitis C, that are
much easier to transmit. The message here is that all bugs, not just HIV, are the
target of prevention when you are practising infection control.
n
Universal precautions
Very simply, the idea behind Universal Precautions is that all individuals are
potential carriers of any number of infectious agents. Therefore, the rules of
precautions apply to everyone, regardless of HIV status. We must be careful
50 l INFECTION CONTROL
when handling blood or body fluids (semen, vaginal secretions, urine, feces,
vomit, saliva, sweat, tears and other internal body juices, such as drainage from
wounds and open sores).
Washing Your
Hands
Washing your hands is the most effective way of preventing transmission of
infections. You should wash your hands before and after every contact with the
person you are caring for. Wash your hands with warm soapy water. Keep your
hands in good shape by preventing dryness and chapping with hand lotion, and
keep your nails trimmed and clean.
Gloves, Masks
and Protective
Aprons
Wearing latex gloves is necessary whenever you are handling blood or big spills
of body fluids (changing diapers or cleaning up vomit). Gloves are like
condoms; they act as a protective barrier for both persons involved. Don’t use
them more than once; throw them out when you are finished the job, then wash
your hands. If you are not sure whether gloves are necessary, it’s better to use
them. (You don’t need to wear gloves when giving a back rub or a massage or
for holding hands.)
o You should wear a mask when you have a cold or when the person you are
caring for is coughing a lot. Use your judgment and talk to your friend about
using a mask; he may want you to use a mask even though you don’t think it
is necessary.
o When you are cleaning up large spills of blood or body fluids, you may want
to protect yourself with a plastic apron or some other form of protective
clothing.
Protecting the
Person with
AIDS from
Infection
We know that the number of times a person has an infection may affect the
person’s immune system. We must take great care not to infect the person who
is immunocompromised by HIV. The same applies to the caregiver. Maintaining
your general health with proper nutrition and adequate rest will help to prevent
illness. Take care of yourself. If you get sick, use your judgment to decide
whether you should be providing care, or at home in bed. If in doubt, speak to a
nurse or your family doctor.
Open Wounds
Caring for open wounds is the job of a nurse. However, in some cases you may
be taught how to cleanse and dress a minor wound. Always wear gloves when
you might come in contact with open wounds or when you’re changing
dressings or menstruation pads. Be sure to properly dispose of any materials
used in the care of open wounds; that is, use double garbage bags. Wash your
hands when you are finished.
Laundry
Wash sheets, towels and clothing in hot water with laundry detergent. Unless it
is necessary, you do not need to use bleach every time you do laundry. (You
may need to use a small amount of bleach, about 200 mls per full load, on
INFECTION CONTROL l 51
laundry that has blood stains or body fluid stains.) If you prefer to use cold
water, that’s okay; the heat of the dryer will kill any bugs in your laundry.
Make sure you have one designated location for the laundry basket or bin. Try
to keep it away from locations where your friend spends most of his time;
dirty laundry often smells. Being organized with your laundry is good
infection control.
Garbage
Disposal
Always try to have a good supply of heavy-duty garbage bags. If you find you
have a lot of wet garbage (used diapers, for example), double bag it to prevent
leakage. Try to have two bins for garbage collection: one for wet or infected
garbage in a double bag, and one for regular garbage. When the bags are full,
tie securely and dispose of the garbage as you would normally. As with your
laundry bin, try to keep garbage away from areas where your friend spends
most of his time. And don’t keep the garbage and laundry bins together. Too
often, laundry gets thrown out with the garbage.
Spills
Clean up any spills of urine, vomit or feces as soon as they happen. You
should wear gloves, especially if there is blood involved. Using warm soapy
water to wash the area is fine. If a large amount of blood is involved, a weak
dilution of bleach and water (one part bleach to ten parts water) should be
used. (Be careful. You don’t want to bleach out the carpet.) Soak the area well
before scrubbing. Take care not to splash the solution into your face or eyes as
soap and chlorine are very irritating.
Food
Preparation
Raw foods are prime carriers of infectious agents. Meats and eggs should be
cooked thoroughly. Fruits and vegetables should always be washed before you
cook or eat them. Wash dishes, glassware and cooking utensils in hot, soapy
water. If you use a cutting board to prepare raw meat, always wash the board
in hot water with a small amount of detergent before you use it again. For
more details related to food preparation, see Section 12.
Pregnant
Caregivers
Pregnant caregivers are at no greater risk of HIV transmission than any other
care team member. However, pregnant women should avoid direct contact
with someone who is infected with CMV, toxoplasmosis or herpes. These
infections can be harmful to the developing fetus. A detailed description of
these infections is found in Section 13.
Sharps and
Needles
You may have to give an injection. Make sure that after you’ve given the
needle you do not recap the needle or try to remove it from the syringe.
Dispose of the needle in a heavy container that is clearly labelled “SHARPS.”
These containers might be provided by Home Care, or try calling your local
public health unit. You’ll find the number in the Blue Pages of your telephone
book.
52 l INFECTION CONTROL
When the container is full, seal it securely and call your public health unit to
arrange for disposal, or take the container to your local pharmacy where they
can dispose of the sharps. Be very careful not to stick yourself with the needle
after giving the injection. In the unlikely event that you do stick yourself,
safely dispose of the needle in the sharps container, then wash the stick site
with warm soapy water. You should then notify your family doctor of what
happened and arrange for an appointment.
Pets
Your friend’s pet is a cherished family member, and a very important part of
the care team. Since animals can carry disease, it is important to make sure
that your friend’s pets are healthy. It may be the job of the care team to take
animals to the vet for checkups or shots. You will probably also take care of
them from day to day — changing the cat litter, feeding the dog and so on.
Make sure you wash your hands thoroughly after you clean the cat’s litter box
or the bird’s cage.
n
Conclusion
Caring for someone with AIDS is the same as caring for anyone else who may
be ill. Good infection control will help you maintain the health and well-being
of all individuals involved. Universal precautions can help you protect against
and prevent infection. They do not discriminate against or isolate people.
Universal precautions take some getting used to, but you will be surprised how
quickly they become just another of your many habits.
References
Health and Welfare Canada. Infection control guidelines for isolation and precaution techniques.
Revised. Ottawa, 1992. (Supply and Services Canada, Catalogue No. H30-11-6-1E).
Canadian Public Health Association & Health Canada. Caring safely for people with HIV or AIDS.
Ottawa, March 1994. (National AIDS Clearinghouse).
Notes
SECTION 5 l 53
All About Beds
and Toilets
n
Introduction
Many care teams will begin caregiving for someone who is mobile enough to
get in and out of bed and walk to the toilet. However, most care teams will end
up providing care to someone who spends most of her time in bed. A large part
of this care will involve changing the bed and helping with toileting.
Caring for someone who is bedridden requires certain skills. These skills are
relatively easy to learn, but they take some practice. You’ll do yourself a favour
by trying them out with someone you know or another person on the care
team.
Helping someone with their toileting needs will be difficult at first, and
probably very embarrassing for both you and your friend. Yet all you need is
time and sensitivity. In the end, you will look back on your first attempts and
be surprised at how far you have come in understanding what it is to be human.
This section will cover:
•
•
•
•
Bed-making and care of the bedside.
Positioning someone in bed.
Toileting.
How to deal with incontinence.
Before we get into the actual mechanics of bed-making, there are some
important points you need to consider.
1. For someone who is ill, the bed is very often a place of refuge, peace and
comfort. The same can be said for the bedroom itself. Often these areas are
quiet, private places where the space is sacred. For those who are
bedridden, the bedroom represents their whole world, the centre of all
activity. It is important for you to learn how much of this space your friend
is willing to share.
54 l ALL ABOUT BEDS AND TOILETS
2. It is important to ensure that your friend’s bed and bedside are kept exactly
the way she likes them. Very often we like to fuss about and clean around
the bedside, making sure things are kept in order. However, your friend
may want to lie in a pile of junk. If that is the case, then keep your hands
off!
3. It’s important, however, that the bed and surrounding area are kept
generally clean. Sheets should be changed at least once a week and
whenever they are soiled. The bedside table should be dusted every once in
a while, and garbage (tissues, for example) removed daily. The reason
behind all of this is to protect your friend from unnecessary problems, such
as infections, which could result from dirt or wet bedding.
4. When it becomes necessary to move furniture in the bedroom so you can
provide your care safely, make sure you ask your friend before you start
moving things about. This is especially important for the person who is
confused or who has difficulty with her vision. Changing your friend’s
environment without letting her know about it could be very distressing.
5. Should your friend spend most of her time in bed, give some thought to
maintaining a pleasant atmosphere in the bedroom. This might include the
occasional use of such things as candles, burning incense or playing soft
music. Pictures of loved ones and friends or special places and events, kept
close to the bedside, can also help create a warm and comforting
atmosphere. Let your friend be your guide when trying to enhance the
bedroom’s atmosphere.
6. Remember that you are there for your friend, not to meet your own
agenda. Respect your friend’s body, space and belongings by asking
permission before moving into her space.
Equipment
Beds:
In most cases you will be working with a bed that is already in the home. Look
at where the bed is situated in the room. Can you can walk around it? If you
can’t and there is room to move it, ask your friend if you may. This will help a
great deal with caregiving.
Look at the height of the bed. Is it close to the floor or high off the ground?
The lower the bed, the more difficult your work will be. (Be sure to read
Section 9 in this manual so you know how to protect your back while
providing care to someone in bed.) You might want to consider raising the bed
by putting some bricks or wooden blocks under its feet. If the bed is on wheels,
remove them before raising the bed with blocks.
ALL ABOUT BEDS AND TOILETS l 55
In some cases, a hospital bed will be provided by Home Care or another social
assistance program. Some of these beds come with a terrible mattress. But they
have some advantages. Many of these beds can be raised and lowered to make
your job easier. And often the head and foot of the bed can be raised or
lowered. These movements are controlled either manually, with cranks at the
foot of the bed, or electrically, by pushing buttons at the side of the bed. If the
bed comes with wheels, make sure that the brakes are on at all times. A Home
Care nurse can show you how the bed operates when it is delivered to the
home.
Some hospital beds will come with side rails, which can be raised and lowered.
Different beds have different mechanisms, and using the side rails can be
frustrating. Make sure you get some practice. Generally, the side rails should
always be left down. Although they have their uses, they are also safety
hazards. Too often people get their limbs twisted and caught in them. However,
if your friend is prone to seizures or wandering, you may want to keep the rails
up. Just make sure you pad them with heavy blankets so your friend won’t get
hurt.
Mattresses and Pillows:
If your friend is spending most of her time in bed, it’s important to check the
quality of the mattress and pillows. Do they provide the support and comfort
she needs? A lot of damage can be done to your friend’s spine and skin if the
mattress is too soft or too hard.
If you think you need to improve the quality of the mattress, check with a
Home Care nurse. Several choices are available. Large pieces of foam,
sometimes called “egg crates,” can be used under the bottom sheet to make the
bed more comfortable. Another product is the air mattress, which may or may
not come with an electric pump to maintain firmness. Some people like to use
sheepskins on top of the sheet, next to the skin. These skins also provide an
extra source of heat.
Try to have as many pillows as possible. Eventually, you will need them to
provide support to different parts of your friend’s body and to help maintain
her position in bed. If you are bringing pillows into the home, check first to see
whether your friend is allergic to feathers. If so, you will need to use foam
pillows.
Monkey Bars:
Monkey bars, or trapeze bars as some people call them, are assistive devices
that can be attached to the head of the bed. A long bar extends over the
person’s head; a smaller bar, the trapeze, hangs from the long bar by a chain.
Your friend can use the smaller bar to move around in bed. The bars can be
ordered through Home Care, or rented from a medical supplies store. They are
useful to someone who has good upper-body strength.
Foot Cradles:
Foot cradles are used to help keep the weight of sheets and blankets off feet
and lower legs. This can be very important when there are sores on the feet or
when a person is experiencing pain due to neuropathy (see Section 13). The
cradle is a long, arched loop of thin metal that is clipped to the mattress at the
foot of the bed. Top sheets and blankets are placed over the foot cradle,
keeping them off the feet and lower legs.
When a metal cradle is not available, you can improvise with an empty
cardboard box. Place the box on its side at the foot of the bed with the empty
end facing the head of the bed. Place a folded sheet inside the box, where the
feet will rest, to prevent them from rubbing against the cardboard. Again,
sheets and blankets are placed over the improvised cradle.
Linens and Blankets:
Often you will need more bed linens than you think are necessary. Try to have
a minimum of three complete sets of bed linen. If your friend is having severe
bouts of diarrhea, even this may not be enough. However, with careful
attention to bed making, you can drastically reduce your need for fresh linen.
(We will discuss how you can do this later.) A standard set of bed linens
includes the following:
o
o
o
o
o
One bottom sheet (fitted or not)
One top sheet
An extra top sheet to be used as a “draw sheet”
Pillow cases (as required)
Blankets (as required)
Linens should be kept in a dry place close to the bedroom for quick and easy
access. Make sure everyone on the care team knows where they are. Soiled
linens should be washed as soon as possible so they are ready for use.
Bedside Tables:
Most people like to have a small table beside their bed to place a light on. It’s
also a handy place to keep personal items your friend may want to reach
without difficulty.
Adjustable tables with wheels that slide under the bed can be ordered from
Home Care. They can be used for meals or other things that may need to be
done in bed. As with the side rails, get to know the adjustable table and how it
works. You don’t want to have it come crashing down on your friend.
n
Preparation
Before you start to change your friend’s bed you should first consider a few
points:
1. Start by asking your friend whether she would like you to change the bed.
If she is particularly tired and wants to rest, let her. You can change the bed
some other time. However, if the bed has been soiled with urine or stool,
you should change the sheets as soon as possible. The acid in urine breaks
down the human skin, so wet and dirty sheets cause serious skin problems.
2. Collect all your clean linens and take them to the bedside. Place them on a
chair nearby so they are handy. This will keep you from having to rush
back to the closet, which is particularly important if you have to change the
bed with your friend in it. You want to make sure the bed is changed
quickly so she does not feel cold or exposed. Make sure you have any
other items you will need, such as incontinent pads, adult diapers or plastic
sheeting.
3. Have the laundry bin close by so that you can put soiled linens directly into
the bin instead of leaving them on the floor.
4. Before you start to change the sheets, take a look at how the bed has been
made, and use it as a guide for bed-making. Some people are very
particular about how their bed should be made. You’ll want to try to stick
to your friend’s formula.
5. If your friend is having problems with pain and you need to change the
bed, you may want to give her some pain medication first so the disruption
caused by making the bed will be minimal. Check the medication chart to
see if you can do this. You should wait about thirty minutes after you give
the medication before you start to change the bed.
Making an
Empty Bed
Naturally, it is easiest to make a bed is when it is empty. Whenever possible,
ask if your friend would like to sit in a chair for a few moments while you
change the bed.
1. If your friend is using a hospital bed, raise the entire bed to the level of
your waist. This will protect your back.
2. Remove all the soiled linens first, and place them in the laundry bin. If
there is a special mattress on the bed, check to see that it is dry and clean.
3. If your friend is having problems with diarrhea or incontinence, you may
want to put a piece of plastic sheeting across the middle section of the
mattress to protect it from moisture. An opened garbage bag or
incontinent pads (plastic side down) will do the trick. The bottom sheet
goes on top of the plastic cover.
4. Make the bed according to your friend’s instructions. There is no right
way to make a bed, and you should not worry about such things as
hospital corners. However, you must be sure any layers of linen your
friend will be lying on are flat and free of wrinkles. This helps prevent
skin breakdown.
5. Once you have the bottom sheet tucked in, you may want to put a draw
sheet across the middle section of the bed. This can be a regular top sheet
folded in half lengthwise. Draw sheets can protect the bottom sheet from
becoming soiled with stool or urine and will save you many hours of
bed-making and doing laundry. You can use a flannel sheet or a light
blanket as a draw sheet, but not if your friend is feverish or sweating a
lot. Draw sheets can also be used to lift your friend when she’s in bed.
6. Now you are ready to place the clean top sheet and blankets on the bed.
When tucking in the top layers, make sure you leave a little slack at the
foot of the bed so that the covers don’t pull or push down on your friend’s
feet. If you are using a foot cradle, put it in place before you add the top
layers.
7. Replace the pillowcases with fresh ones, tucking inside any loose ends.
Gently puff up the pillows and return them to the bed.
8. Return the bed to its original position and ask your friend if she would
like to go back to bed. If she is using incontinent pads, make sure a fresh
one is placed on the bottom sheets where her midsection will lie.
Making an
Occupied Bed
When it becomes necessary to change your friend’s bed while she is still in it,
the process takes a little more planning. It’s usually easiest if two people are
involved. However, you can do this procedure very well on your own.
Throughout the bed-making process, talk to your friend and let her know
what you are doing. This is particularly important when you need to move
your friend while she is in bed.
1. Collect your linens and your laundry bin and raise the bed, if possible, to
waist level.
2. With one person on each side of the bed, first remove the top sheets,
blankets and all the pillows except one that remains under your friend’s
head. Keep her covered with a loose sheet or blanket so she does not get
cold or feel exposed.
3. Loosen the bottom sheets all around the bed.
4. Gently help your friend to turn onto her side while supporting her at the
waist and shoulders. Make sure her head is resting on a pillow and that her
limbs are supported.
5. While one person holds your friend securely, the other person rolls each
layer of the bottom linens toward the centre of the bed. If your friend has
been incontinent, you will want to wash her now, then cover the soiled
linens with a towel. You should wear gloves during this procedure.
6. Place the clean bottom sheet, half rolled up lengthwise, against the
rolled-up dirty linens. Smooth out the flat half of the clean sheet and tuck
it in. Repeat this process with each bottom layer of linen you are using
(plastic sheeting, bottom sheet, draw sheet, turning sheet, incontinent
pads).
7. Move the pillow to the other side of the bed and help your friend roll over
the rolls of linen to the other side. Make sure to tell her that she will be
rolling over a bump.
8. The other person now pulls through all the dirty linens and places them in
the bin. Finish washing your friend. Then gently pull through all layers of
clean linen. Pull tightly to ensure that the bottom layers are straight and
wrinkle free, then tuck in the sheets.
9. Roll your friend onto her back or into a comfortable position and replace
her pyjamas. Replace the pillowcases and finish making the bed with a
top sheet and blankets. Position your friend so she is comfortable.
10. Replace the laundry bin and any furniture to their regular places. Wash
your hands.
Note: If you are alone when you’re making an occupied bed, use the
procedure above with the following adjustments:
•
To turn your friend onto her side, use the pull turn method described in
Section 9 of this manual. Move very slowly to make sure that she does not
roll out of bed.
•
n
After your friend has rolled over the centre bump and is resting safely on
the original side, walk to the other side and finish making the bed. Do not
try to make the bed while reaching over your friend; this could damage
your back.
Positioning someone in bed
If your friend is completely bedridden and is too weak to move or is paralyzed
or unconscious, helping her change her position in bed will become one of
your most important tasks. Long periods of immobility can lead to skin
breakdown, which is a serious problem. (See Section 6 for a detailed
discussion of bed sores.) Figure 5.1 indicates the areas of the body that are
especially prone to pressure damage.
Figure 5.1: Pressure areas on the body
Reprinted by permission of Running Press, 125 South 22nd Street, Philadelphia, PA.
from Nursing a Loved One at Home by Susan Golden. Copyright 1988 by Susan Golden.
What To Do
To avoid the problems related to constant bed rest, make sure your friend’s
position in bed is changed at least every two hours.
o Be gentle with your friend when you suggest she change her position. She
may not want to move at all. However, part of your job is to protect her
from unnecessary discomfort, so do what you can to negotiate a move. If
your friend is in pain, offer some pain medication thirty minutes before
moving your friend in bed. Use the techniques described in Section 9 to
safely move your friend.
o Each time you move her to a new position, make sure all her limbs are well
supported with pillows or folded sheets. (See figure 5.2.)
o When you turn someone on her side, make sure her limbs are reasonably
extended so the flow of blood is not restricted by kinks at the joints.
Figure 5.2: Positioning with pillows.
o If bed sores are present, you will need to take measures to avoid any
pressure on those sites. Try using pillows or rolled towels to raise the
pressure area off the bed.
o Each time you position your friend, take a few moments to check for signs
of skin breakdown. Rub all bony areas (hips, tailbone, shoulders, elbows,
knees, spine, heels) with lotion to promote circulation. Report any reddened
areas that won’t go away to the nurse or doctor.
n
Toileting
Body elimination is one of the most basic of human needs. For most of us it is
also a very private matter. The fact that someone might need help with this
process can be very embarrassing. This is particularly true for someone who is
confined to bed.
When helping your friend with her toileting needs, it is very important to
provide as much privacy as possible. Be sensitive to your friend’s need for
privacy. This will show her you have respect for her dignity. Always ask your
friend for direction.
Using the Toilet
When your friend is able to get up and go to the toilet, offer whatever
assistance she may need. Make sure the bathroom floor is dry (to prevent
slipping) and ensure that there is toilet paper handy. Make sure your friend has
proper fitting slippers, and that the path to the toilet is well lit and free of
obstacles. Stay close by and be ready to help.
o If your friend needs help with wiping-up, make sure you wash your hands
when you are finished.
o Don’t rush the event. Let your friend take as much time as she needs. If she
has trouble getting started, the sound of running water might help.
o Likewise, take your time getting back to the bedroom or to wherever your
friend wants to go. If the distance between the bathroom and the bedroom is
quite far, and your friend tires easily or is short of breath, you want to
position a chair halfway for your friend to use as a resting spot.
Raised Toilet
Seats
Commodes
Although your friend may still be able to walk to the washroom, getting on
and off a low toilet seat may be very difficult. In this case, you may want to use
a raised toilet seat that sits on top of the toilet bowl. This will decrease the
distance your friend needs to travel when getting on and off the toilet. Raised
toilet seats are usually made of plastic and may or may not come with metal
clips to hold them in place. They can be borrowed from a Home Care program
in your area or rented from a medical supplies store or the Red Cross.
Commodes are portable toilets, in the shape of a chair, that can be positioned
close to the bed of a person who is able to get up but too weak to walk to a
bathroom.
Urine and stool are collected in a removable bucket or bedpan under the seat.
Some commodes come with wheels so that you can wheel your friend into the
bathroom and right over an open toilet seat. If you use a commode with wheels
at the bedside, make sure the brakes are on when moving your friend on and off
the commode.
o Use the techniques described in Section 9 to assist your friend to the
commode. Place a roll of toilet paper within your friend’s reach and give her
some privacy.
o When your friend is finished using the commode, help her back into bed,
then empty the commode bucket or bedpan right away. Wash your hands and
return the commode to its usual place.
Urinals
Urinals are small collection bottles that are used for peeing. Most of them are
for men. They come in different shapes and sizes and are usually made of
plastic. (Some are made of metal or molded cardboard.)
o Some men are able to use the urinal lying down, while others prefer sitting
on the edge of the bed or standing up. If your friend wants to stand, make
sure you offer him support.
o Because some men like to keep the urinal close by, make sure it is emptied
and thoroughly rinsed after every use. This will help to prevent spills and
offensive odours.
o If your friend wants help using the urinal, be sure the penis is placed
directly into the urinal and that the urinal is tilted downward.
Some urinals have been designed for use by women, but few women have
reported any great success with these devices. Often, they are placed
incorrectly and leak into the bed. For this reason, most women prefer to use a
bedpan or a commode.
Bedpans
Like urinals, bedpans are made of plastic or metal and come in various shapes.
Positioning someone on a bedpan requires a little planning.
If your friend is able to move in bed, help her into a semi-sitting position so she
can push up with her arms while you slide the bedpan under her. It may be a
good idea to place an incontinent pad or towel under the bedpan to protect the
bed. Always warm the bedpan (especially if it is metal) by pouring warm water
on it then wiping it dry. Sprinkling a little talcum powder on the bedpan will
make it easier for your friend to slide off when she is finished.
o When your friend is too weak to push herself up with her arms, see if she
can raise her buttocks by bending her knees and pushing down on her heels.
Slip the bedpan under the buttocks and support your friend in a sitting
position. You can do this yourself or use pillows.
o If your friend is not able to move at all, turn her onto her side. Place the
bedpan over the buttocks just below the tailbone. While holding the bedpan
in place, roll your friend onto her back. Check to see that the bedpan is in
the right position. There should be a four- to five-inch gap at the front of the
bedpan. Help your friend into the sitting position. When she is finished,
help her onto her back. Then gently roll her to the side while removing the
bedpan. Carefully wipe your friend and if necessary clean her with warm
water and dry her thoroughly. Help her into a comfortable position, then
empty the bedpan. Wash your hands.
o Never leave someone on a bedpan for long periods of time as this may lead
to skin breakdown. If she can’t go, remove the bedpan and try again later.
o When taking a bedpan to the toilet, cover it with a towel to avoid getting
splashed as you walk.
n
Dealing with incontinence
Incontinence is the loss of bladder or bowel control. It has many causes. But
whatever the cause, losing control of body functions can be very demoralizing.
The person who is incontinent needs our compassion and support.
People who are incontinent often wet their beds or their clothing. This creates a
moist environment, which is ideal for bacterial growth. Urine and stool contain
toxic substances, which can irritate or break down the skin. There are several
things you can do to help the person who is incontinent. Here are some
suggestions.
Routines
Offer your friend assistance with going to the toilet or using the urinal or
bedpan several times throughout the day.
Make note of the times when your friend does go, and look to see if there is
any pattern. If you find one, try to stick to it and ask your friend to go at those
times.
Listen to your friend and believe her. If she says she has to go, help her, even if
you just got her off the toilet or bedpan. Assisting your friend with toileting,
even when you don’t think anything will happen, is a lot less disrupting than
having to change the bed. It’s also less frustrating for your friend.
Barrier Creams
If your friend is incontinent several times throughout the day and night, the
surrounding skin may become red and irritated no matter how diligent you are
with keeping your friend dry. In these cases, you may want to apply a barrier
cream to protect the affected area from further irritation or skin breakdown.
You can purchase these creams (such as Zincofax or Canesten) at your local
drugstore, without a prescription.
Make sure you check with your friend first, before using a barrier cream. She
may not want to have this almost paste-like cream on her body. If the cream is
irritating to your friend’s skin, stop using it right away.
Adult Diapers
Diapers can be very useful when you’re trying to deal with incontinence. They
can also play a major role in restoring some of your friend’s independence
while at the same time protecting her clothing or bed linens.
Adult diapers (such as Attends) come in different sizes and shapes. Adult-size
diapers generally wrap around the pelvis and are attached at the hips with
adhesive strips. Some do not have these strips. Others are large absorptive pads
(such as Depends) that are held in place by your friend’s underwear or with a
pair of mesh panties. Try out the different kinds, and ask your friend which
kind suits her best.
More often than not, you will be helping your friend put on the Attends while
she is in bed. Whenever possible, ask her to lift her buttocks in the air so you
can slip the Attends underneath. Before you start, make sure the plastic side
of the Attends is facing down and that the end with the adhesive strips is
facing your friend’s head. Have your friend lower her buttocks on the
Attends, then open her legs so you can pull the bottom half through the space
and up over the front of your friend’s midsection. (With males, make sure the
penis is pointing downward.) On each side of the body, place the back end of
the Attends over the front end and attach it with the adhesive strips. (Use
tape, never safety pins, if there are no strips.)
o If your friend cannot lift her buttocks, use the method described earlier for
changing an occupied bed. With each turn, position half the Attends® as
you would new sheets.
o Make sure you are using the right size of Attends. Check for a snug fit that
will prevent leakage but will not cut off circulation to the legs.
Some Attends will have a light-coloured design extending down the front
centre line. When this design changes colour or gets darker, you know the
Attends is wet and needs to be changed. However, this indicator strip does
not always work, and many people sweat inside their Attends. It’s best to
check the inside of the Attends frequently and change it as necessary.
Remember to cleanse your friend with warm water and dry her thoroughly
with each change.
Incontinent
Pads
Incontinent pads are used to absorb moisture and protect bed linens. Place the
incontinent pad, plastic side down, underneath your friend’s midsection. This
should help to collect any stool or urine that would otherwise soil the bed.
If necessary, incontinent pads can be used in place of Attends. However,
because of their shape (they are square) they do not make for a snug fit and
will probably leak. If your friend is passing large amounts of urine or stool, you
can fold an incontinent pad in thirds (plastic side facing inward) and place it
inside a diaper for extra absorbency.
•
Incontinent pads and Attends are very expensive, so use them sparingly.
Catheters
Catheters are long tubes that are inserted into a man’s penis or a woman’s
urethra extending up into the bladder. The catheter is held in place by a small
balloon of injected air or sterile water, which rests inside the bladder to keep it
from slipping out. The end of the catheter that hangs outside of the body is
connected to a long tube, which drains urine into a collection bag.
Catheters are rarely used in the home. But, should your friend have a catheter,
you will want to clean the part of the tube that extends outside of the body
every day. This helps to prevent infection of the bladder or urethra. A Home
Care nurse can instruct you on how to keep the catheter and surrounding area
clean.
When moving your friend, make sure the catheter tube remains slack. Never
pull or tug on the catheter; you may cause internal damage. When you’re
turning your friend in bed, place the drainage bag on the side of the bed toward
which you are rolling her. If you notice that some urine or other discharge is
leaking from around the sides of the catheter, report this to the doctor or Home
Care nurse as soon as possible.
The collection bag should always be kept below the level of the bladder. This
prevents urine from backing up into the bladder as gravity drains the urine into
the collection bag. The collection tubing should be free of kinks. This will
allow for a free flow of the urine that drains from the bladder. Keep the
collection bag hooked to the side of the bed. (It will come with attachments to
do this.)
o To empty the collection bag, place the draining shunt, found at the bottom
of the bag, into a collection bottle or urinal. Open the shunt clamp and let
the urine drain out of the bag. When the bag is empty, make sure you clamp
the shunt tight. The last thing you want is urine draining all over the floor.
Flush the urine down the toilet and wash your hands. Sometimes the
health-care team may want you to record the amount of urine your friend is
passing. If this is the case, make sure you measure the urine before flushing.
Check and empty the collection bag frequently. The rule of thumb is, never
let the bag become more than half full.
Condom
Catheter
The condom catheter is for men only. The catheter is applied externally to the
penis then hooked up to a drainage system.
Available in different sizes, the modified condoms are rolled over the penis and
held in place with either a velcro strap or piece of adhesive foam. A short tube
extends from the end of the condom to connect it to the drainage system.
Condom catheters must be used with care. If secured too tightly to the penis,
they can cut off circulation and cause serious problems. They should be
removed daily and the penis thoroughly cleansed. Never use the same condom
twice.
Some men will experience skin irritation from the condom. If you notice any
signs of irritation or breaks in the skin, stop using the condom immediately and
report this to the doctor or Home Care nurse.
References
Susan Golden. Nursing a loved at home: A care giver’s guide. Philadelphia: Running Press. 1988.
Mary Menair. Your handbook of basic home care. Portland, ME: Exprit de Corps. 1990.
Marg Raynard. Providing home-centred care to people with AIDS. Toronto: The Canadian Council
on Homemaker Services. 1990.
Notes
SECTION 6 l 69
Symptom Control:
Comfort Measures
n
Introduction
One of the most important things you can do for your friend is to make sure
that he is as comfortable as possible. Comfort measures aim to relieve the pain
and suffering of physical symptoms such as nausea, diarrhea, and so on. These
symptoms can be side effects of your friend’s illness or of the drugs and
treatments he is receiving. Some symptoms can be expected and may be signs
of approaching death; these are discussed in Section 16.
In Section 7 we will talk about pain and how you can help your friend deal
with it. Section 10 is about some of the psychological and emotional concerns
related to AIDS and the dying process. Understanding the mind-body
connection is very important when trying to relieve any kind of pain or
discomfort. Symptoms related to nutritional concerns such as anorexia
(decreased appetite) are discussed in Section 12. In this section we will focus
on the relief of physical symptoms through the use of comfort measures.
For those of you who have never provided hands-on care before, some of the
information in this section may seem a little overwhelming, even frightening.
Don’t underestimate your potential. You’ll be surprised with how much you
can do to help your friend. Listen to your friend, and work with him to find the
best approach to relieve his discomfort.
Not every symptom or comfort measure known to health-care science is
discussed in this section. We have focussed on those most common in AIDS
palliative care. There are numerous complementary therapies that have
provided a great deal of comfort to many persons in care. Your friend may be
using some of these therapies already or might want to look into them. Some
of these complementary therapies are discussed in Section 7. Contact your
local AIDS organization for information on complementary therapies available
in your area.
70 l SYMPTOM CONTROL: COMFORT MEASURES
•
•
•
n
How to assess your friend’s physical symptoms
Basic comfort measures
How to assist your friend with personal hygiene
Some basic assessment skills
The first step to helping your friend cope with his physical symptoms is to
know what you are looking for. Then you must determine whether the
problem is a new one or ongoing, and learn what does and doesn’t work to
relieve the discomfort.
What’s
going on?
Using the power of observation and asking questions are two of the most
effective ways to find out what is going on with your friend in terms of
physical discomfort.
Noticing any changes in your friend’s condition will give you important clues
as to whether the symptoms are new or part of ongoing problems. For
example, you might notice that your friend is vomiting more often than the last
time you cared for him, or that he is having difficulty breathing, which was
never a problem before. Reading the care team log will help in determining
whether any change has taken place.
Asking your friend if anything is wrong is critical to understanding his
physical symptoms. Simply asking, “How are you?” is a good start, but it may
be necessary to be a little more specific. Encouraging your friend to tell you
about his physical problems is important. Explain that you are there to help
make things better. Remember, people use different terms to describe their
feelings and sensations, so make sure you understand what your friend is
telling you. Be careful not to badger or nag him. Be gentle with your
questions, and offer solutions, so that your friend remains in control of his
care. The kinds of questions you ask will depend on the problem. We will give
you many examples later in this section.
There is a
problem. Now
what?
Once you and your friend have determined a physical symptom is causing
discomfort, you’ll need to decide what to do. Check the care team log and
other charts from Section 3 to see if any comfort measures have already been
recorded. Ask your friend what he believes might bring some relief. Review
the comfort measures in this section and give them a try.
When you are confronted with a new problem, it is very important that you
report it to the Home Care nurse or the doctor. They need this information to
plan their care, and they can make very useful suggestions about what you
SYMPTOM CONTROL: COMFORT MEASURES l 71
should do next. Have the care team log handy when you contact them, and be
prepared to answer some the following questions:
•
•
•
What if nothing
works?
When did the problem start?
How long has it been going on?
Does anything make it worse or better?
There is no one right way of providing comfort measures. Each person in care
will respond differently. And some symptoms may persist regardless of your
attempts to relieve them. Make sure you report this to the doctor or nurse.
In some cases, the doctor may want to have your friend admitted to hospital
for intensive symptom control. Let your friend decide whether this is a good
idea. If he wants to go to the hospital, it is important for you to understand that
this is not a sign of the care team’s failure to do its job. Some severe symptoms
are better managed in very controlled environments with lots of available
resources. And remember: the care team can go wherever your friend needs it.
In other words, if your friend goes to the hospital, the care team can go, too,
and care for him there. The care team can then return home with him again if
he is discharged or decides to leave.
Make sure the
team’s
caregiving is
consistent.
One of the most frustrating experiences for someone who is ill is to be
subjected to a series of different comfort measures that may or may not solve
the problem. Your friend needs to trust the care team and feel safe with the
care the team is giving. Being consistent with your care will help build and
maintain trust.
Once you have found a solution to a problem, it is important that you record it
in the care team log and pass the information on to the next care team member.
Be specific with your instructions so other caregivers know what you are
talking about. For example, recording the words “back rub” is not as helpful as
describing the massage in terms of exactly where, how hard, how long, in
what position, and so on.
n
Basic comfort measures
Here are some of the most common symptoms experienced by people with
AIDS. Basic comfort measures are described for each symptom.
Breathing
Problems
Dyspnea is the medical term for difficulty with breathing. The most common
symptom related to dyspnea is shortness of breath, which can be very
frightening, both to experience and observe. Breathing problems are often
associated with illnesses such as PCP (pneumocystis carinii pneumonia) and
other pneumonias, lung tumours, excess secretions (fluids) in the lungs,
asthma, weakness and anxiety. (Changes in breathing patterns associated with
approaching death are discussed in Section 16.)
What To Do
Make sure your friend rests before and after an activity (including eating). Plan
the activity and rehearse what you will do should your friend become short of
breath. Help him to move slowly and pace his activities according to his
breathing tolerance.
•
If your friend has difficulty breathing during an activity, stop the activity.
Stay calm and offer quiet reassurance while he gradually slows the rate of
his breathing. Encourage him not to hold his breath during difficult
movements.
•
Ask your friend what position helps improve his breathing. Generally, a
sitting position works best, so provide support with pillows behind his
back, or raise the head of the bed. You can help increase your friend’s lung
expansion by elevating his arms, supporting them with pillows.
•
Help your friend get to know his breathing patterns, especially when
difficulty starts up. Concentrate on slowing down the breathing by taking
breaths in through the nose and out through the mouth.
•
•
If the room is dry, consider using a humidifier, but keep the room warm.
•
Be aware of how anxiety or pain affects your friend’s breathing. Some
anti-anxiety drugs and narcotics will provide good relief. Ask the doctor
about these drugs.
•
In some cases, your friend or the doctor may feel that oxygen is required.
Oxygen can help decrease shortness of breath in those people whose lungs
can no longer move enough oxygen into the bloodstream. When the doctor
orders oxygen, make sure you are instructed by a Home Care nurse on how
to use the equipment and on when and how to order a new tank of oxygen.
Oxygen is considered a drug and should only be given as directed. Never
increase or decrease the amount of oxygen being given unless instructed to
by the doctor or nurse.
•
Oxygen is administered through a mask or through nasal prongs, two little
tubes that rest inside the nostrils. Make sure the mask fits snugly around the
Consider using a fan to move air about the room or to bring in fresh air
from an open window. A fan gently blowing onto the side of your friend’s
face may also help decrease his sensation of breathlessness.
mouth and nose, but not too tight. Frequently check the skin under the
straps that hold the mask in place, looking for signs of irritation. The same
applies for the area around the nostrils when using nasal prongs. Applying
lotion to the skin on the face or a small amount of Vaseline® around the
nostrils can help to relieve the irritation.
•
If oxygen is being used, be sure that no one, including your friend, smokes
while the oxygen is turned on. The same goes for lighting candles, etc.
Safety precautions regarding the use of oxygen will be given to you when
the oxygen is delivered to the home. Be sure to review them with all
members of the care team.
Vomiting
Vomiting is often caused by the same things that cause nausea. Certain foods
or drugs may induce vomiting; pressure on the stomach from blocked
intestines might also cause it. Some people may feel they need to vomit at
least once a day to relieve this pressure or to relieve the symptom of nausea.
Regular vomiting may be necessary. Make sure your friend does not become
dehydrated or malnourished because of regular vomiting. If your friend is
vomiting all the time, the doctor should be notified.
What To Do
Many of the drugs used to relieve nausea will also help to decrease vomiting.
Sometimes these drugs are given on a regular schedule, even at times when
your friend is not vomiting, to prevent vomiting from starting. If your friend is
vomiting fairly frequently and unable to keep pills in his stomach, these drugs
can be given rectally in a suppository form.
•
Stay close to your friend while he is vomiting and offer whatever
assistance he may need. If he is vomiting all the time, have a small kidney
dish or a bowel in reach at all times. When he is very weak and vomiting,
keep him on his side to prevent choking. Remove any soiled linens or
bowls quickly, as the smell of vomit may prolong or induce vomiting.
•
Your friend may find it helpful if you support his forehead during
vomiting. Wipe his face with a cool damp cloth during and after an episode
of vomiting. Once the vomiting has stopped, help your friend to rinse out
his mouth. Keeping the mouth clean is very important. Stomach juices are
very acidic and will cause irritation to the mouth, gums, tongue and lips. If
your friend vomits while eating, rinse out his mouth and ask him to wait
fifteen to twenty minutes before eating again.
•
Offer lots of clear fluids (not milk) to replace those that are lost with
vomiting. Gatorade is a good choice.
•
Ask your friend to sip fluids through a straw. (This helps to avoid gulping
which can make a person feel full.)
Nausea
Nausea is a nagging feeling in the stomach, which makes you feel like you
want to throw up. However, not everyone who feels nauseated will vomit.
Nausea can be caused by particular illnesses, drugs, a sensitive stomach,
constipation, the smell of certain foods or odours, sudden or jerky movements
during repositioning, emotional responses to fear, or anxiety.
What To Do
There are several anti-nausea drugs available that work in different ways. You
may want to ask the doctor to prescribe one of these drugs. If your friend is
already taking an anti-nausea medication and it isn’t working, check with the
doctor to see if another drug might be more effective. Give medications for
nausea thirty minutes before giving food, or give as directed by the
pharmacist.
•
Keep your friend quiet and free from unnecessary movement. Try reducing
external stimuli. For example, close the blinds, turn off any music or TV, or
ask visitors not to talk.
•
Try placing washcloths soaked in cool water behind the neck or on the
forehead.
•
Breathing exercises such as slow deep breaths (in through the nose and out
through the mouth) may help to alleviate nausea.
•
Keep the stomach from being empty by offering several snacks throughout
the day. Warm Jello and peppermint tea can help to reduce nausea.
•
•
Offer a couple of crackers to nibble on first thing in the morning.
•
•
Avoid liquids with meals. Save them for one hour before or after the meal.
•
Encourage your friend not to lie down flat for at least thirty minutes after
eating.
If the smell of food triggers nausea, offer your friend cold food or food at
room temperature. (Hot food has a stronger smell.) Your friend may want
to avoid being present while the food is being prepared. Use kitchen fans if
you have them.
Avoid sweet or greasy foods. Increase the intake of salty foods unless your
friend is having a problem with water retention.
•
Fever or Chills
Some people control their nausea by smoking marijuana. While this may
be difficult for some people on the care team, you need to understand that
when nausea is a major concern, your friend will want to do whatever it
takes to get rid of it. While the use of marijuana is illegal, many doctors
turn a blind eye to this practice because they know it can be very helpful.
Drugs, such as Marinol which contains THC, the active ingredient in
marijuana, can be prescribed by the physician. Many people, however, find
that smoking “grass” is much more effective.
A healthy body functions best when its temperature is maintained at a normal
level. Although this level may vary slightly from person to person, normal
body temperature is considered to be 37 degrees Celsius (98.6 degrees
Fahrenheit). A fever is a body temperature above 38 degrees C
(100 degrees F).
When the body’s metabolic rate (use of energy) increases, (for example,
during exercise) so will the body temperature. When a person is fighting an
infection, the metabolic rates increases to do the work of getting rid of the
infection. As a result, people fighting infections will have fevers. Since people
with AIDS are often fighting infections, fever is a common symptom.
Some bugs that cause infection are destroyed with an increase in body
temperature. However, people living with AIDS often have prolonged periods
of fevers that can get too high. These fevers exhaust the body and deplete its
stores of energy, which need to be replenished with food and drink.
When a fever starts, your friend may complain of chills or shivering. As the
fever progresses, he may feel hot and may have flushed skin which is warm or
moist to the touch. Fevers can last a few hours or even a few days. Some
people will “spike” a fever; that is, develop a high temperature in a short
period of time. When this happens (often at night) or when the fever breaks,
your friend may sweat a great deal.
What To Do
The first thing you should do is ask to take your friend’s temperature. You can
do this in one of three ways: by mouth with an oral thermometer; in the armpit
with an oral thermometer; or rectally with a rectal thermometer. For all three
methods make sure you first clean the thermometer and shake it gently but
firmly so the mercury falls below 35 degrees C (95 degrees F).
Oral Temperature:
Place the thermometer under your friend’s tongue and ask him to keep his
mouth closed and to breath through his nose. Keep the thermometer in place
for three minutes. Remove the thermometer, read the temperature then clean
the thermometer before returning it to its storage place. Do not use this method
if your friend has difficulty breathing, is too weak to hold the thermometer in
place or is prone to seizures.
Under the Arm:
Make sure that your friend’s armpit is dry. Place the tip of the thermometer in
the middle of his armpit and press his arm close to his body. Leave the
thermometer in place for five minutes. Open the arm, remove the thermometer
and read it. Then clean and store it.
Rectal Temperature:
Taking someone’s rectal temperature is a sensitive matter and your friend may
want only certain people to do this. Explain to your friend what you plan to do
and ask him to lie on his side. Lubricate the tip of the thermometer with a little
bit of Vaseline® or K-Y® jelly so it enters the rectum easily. Gently insert
about an inch of the thermometer into the rectum and hold it there for three
minutes. Gently remove the thermometer, read it then wipe it clean.
All Temperatures:
Whenever you take your friend’s temperature, make sure to record the reading
(including the date and time) in the care team log. A fever above 38 degrees C
(100 degrees F) should be reported to the nurse or doctor.
•
Chills can be relieved by covering your friend with warm blankets. Once
the chills are gone, remove any extra blankets to prevent unnecessary
warming.
•
Fevers can be controlled with aspirin or Tylenol. Aspirin should be avoided
if your friend has a sensitive stomach or has problems with ulcers or
bleeding. Make sure to follow the directions on the medication chart and to
make a record whenever you give your friend one of these drugs.
•
Fevers can be reduced with tepid or lukewarm sponge baths. The use of
cold water or ice water is very uncomfortable and unnecessary. When
giving your friend a sponge bath, make sure the room is warm. Some
people like to use rubbing alcohol on the skin as a method for reducing
fever, but alcohol has a tendency to dry the skin, which can lead to
irritation.
•
When your friend has a high fever, his body will release heat through the
skin. A fan will circulate the air and help his skin release heat.
•
Encourage your friend to drink as much as possible. This will help to
reduce the fever and replace body fluids lost through sweating.
If your friend is sweating a great deal, make sure to change his clothing and
bed linens so the skin is kept dry. You can place a towel behind his head or
neck to absorb sweat.
Diarrhea
Diarrhea (liquid or liquid-like stool) is the body’s way of getting rid of
something it doesn’t want in a hurry. Sometimes it is a response to stress.
Many people with AIDS have problems with diarrhea because of intestinal
infections or because of drugs they are taking. In cases where diarrhea is
severe, a person can become dehydrated in a short period of time. It’s
important to keep accurate records of how many times per day your friend has
diarrhea and approximately how much fluid was lost. Help him to replace lost
fluids by giving him lots to drink. Little squirts of diarrhea may be a sign of
constipation.
What To Do
Several drugs are available to help with diarrhea. Give them to your friend as
directed and let the doctor know when the drug doesn’t seem to be working. In
some cases, drugs will help, although they may not provide complete relief.
•
Listen to your friend and respond quickly. Diarrhea can come on quite
suddenly. Offer whatever assistance he may require, such as a commode or
bedpan, and provide as much privacy as possible.
•
After each bout of diarrhea, make sure you help wash your friend with
warm water, and make sure his skin is thoroughly dried. Diarrhea is very
irritating to the skin and can cause skin breakdown.
•
If your friend is using adult diapers, change them as soon as they are soiled.
If stool has dried onto the skin, use Vaseline to soften the stool before
gently wiping it away. You can protect the skin from stool by applying lots
of Vaseline or zinc oxide (available at the pharmacy) every time you help
clean your friend. Do not use soap when cleaning your friend, as it will dry
and irritate fragile skin.
•
Make sure your friend drinks lots of clear fluids to replace those that are
lost with severe diarrhea. Gatorade is a good way to replace fluid and
electrolytes. (Electrolytes are vital chemicals such as sodium and
potassium that are necessary for many biological functions.) Decreased
levels of electrolytes can result in serious physical and neurological
problems.
•
Avoid milk and milk products.
•
Reduce the intake of fibre but don’t stop it all together. Serve only cooked
fruits and vegetables. Cooked bananas and applesauce may help to lessen
diarrhea as well as replace important electrolytes.
•
•
Go easy on the caffeine: reduce coffee, tea, cola and chocolate intake.
Some kinds of diarrhea will smell very bad, even offensive. This may
make your friend feel embarrassed or ashamed. Be sensitive about this and
avoid dwelling on the stench. Room deodorizers, scented candles or
incense may help increase everyone’s comfort level.
Constipation
Constipation is the blockage of the bowel with stool. It may be caused by
illness, long-term use of narcotics, lack of activity, weakness, decreased fluid
intake or poor diet. Stress can also induce constipation. For example, your
friend may be hesitant to ask for help with toileting or embarrassed about
having someone present during toileting. Constipation can be very painful and
sometimes will cause nausea and a decreased appetite. If left unattended,
constipation can be life-threatening.
What To Do
Don’t let constipation persist. The best way to treat it is with prevention. Keep
track of your friend’s bowel movements. If he is eating and hasn’t had a bowel
movement in two days, contact the doctor or Home Care nurse.
•
If constipation is a problem, the doctor may want to prescribe a stool
softener or a laxative. These drugs may come in the form of a pill, liquid or
a suppository (given rectally) and should be given only as directed. Don’t
use these drugs unnecessarily, as they can be very harmful.
•
Some people with constipation do not respond to drugs or diet changes.
They might become very weak and may need an enema. An enema should
be done by the Home Care nurse.
•
When possible, try to get your friend to walk, exercise or move about in
bed. This might help move stool through the bowel.
•
Try gradually increasing the intake of whole grains: cereals, breads and
baked products.
•
Offer a variety of fruits (including prunes), vegetables and fruit juices
(including prune juice) once a day.
•
Increase fluid intake and try a hot drink with caffeine in the morning to
wake up the bowels.
•
If your friend is a smoker, having a cigarette may help to induce a bowel
movement.
Headaches
What To Do
Problems
with Sleep
(Insomnia)
What To Do
Headaches are the most common health problem in society today. They can be
caused by tension related to stress, medication side effects, infections or
tumours in the brain, or after an injury to the head or neck.
•
Drugs like Aspirin, Tylenol or Ibuprofen can be quite effective in relieving
headaches. Use these drugs only as directed.
•
Gentle massage or heat applied to the back of the upper neck (or shoulders)
can help to reduce stress and tension. Likewise, meditation or relaxation
techniques can be very effective.
•
Headaches that do not respond to these comfort measures (especially when
your friend complains of a stiff neck) should be reported to the nurse or
doctor. There may be a new infection starting up that needs medical
attention.
At some time or another, most people who are living with dying have
difficulty falling asleep or getting enough rest. Insomnia can be caused by
anxiety, fear, depression or other psychological or spiritual concerns. Physical
problems such as pain, nausea, vomiting, coughing and diarrhea may well
keep your friend awake.
Help your friend to pace his activities, with room for a natural slowing down
at the end of the day. For example, avoid increased activity in the evening.
•
Spend quiet times with your friend, listening and talking. Giving him the
opportunity to express his feelings will do much to relieve his
psychological concerns. If these concerns are related to practical issues
such as financial matters, offer suggestions aimed to resolve your friend’s
concerns. Explain that difficulties with sleep are not unusual for a very sick
person.
•
Back rubs, massage, relaxation techniques and mental imagery
(see Section 7), and warm baths are all ways of helping someone relax and
eventually fall asleep.
•
You can try gently stroking the hair and scalp while encouraging your
friend to let all his thoughts float away, leaving the head spacious and
empty. Make sure he is in a comfortable position and that he is not too cold
or warm.
•
Herbal tea or warm milk might help. From late afternoon onwards, avoid
coffee, black tea or colas which contain caffeine.
Skin Care
•
If insomnia is related to physical symptoms, do all you can to relieve them.
Discuss the problem with the Home Care nurse or the doctor. Ask your
friend what he thinks might help.
•
Some people may need medication to help them sleep or to reduce their
anxiety. If your friend wants sleeping medication, make sure the doctor is
aware of all other medications he is taking so the appropriate medication
can be ordered.
•
Confusion and agitation can cause restlessness and insomnia. Although
both may occur throughout the day and night, frequently these problems
are more pronounced at night. Certain medications other than sleeping pills
may be required to help your friend with these problems.
•
Remember, it’s okay for your friend not to go to sleep when you think he
should. He may want to read, write, listen to music or watch TV for a
while. Sometimes, people who are dying or who are very ill become
nocturnal; that is, they sleep most of the day and stay awake most of the
night. Unless this change in your friend’s biological rhythm is bothering
him, you’ll need to go along with it. Follow your friend’s lead.
Helping your friend look after his skin is probably one of the most important
comfort measures you can provide. The skin is the body’s first line of defense
against injury and infection. Once the skin is weakened, irritated or broken,
pressure sores (bed sores) can develop. These cause great discomfort, and
could become a serious threat to your friend’s health.
Who is at risk for developing pressure sores? People who are bedridden or
unable to move themselves, no longer able to control their bladder or bowels,
underweight or overweight, undernourished, or experiencing more than one
illness at a time. Many people with AIDS fall into more than one of these
categories. And because their immune systems are so weak and fragile, any
new infection related to a pressure sore could be life-threatening.
Pressure sores are caused when a part of the body is pressed continuously
against a hard surface, such as a mattress or chair. The bony parts of the body
(see figure 6.1 opposite) that support it when it is lying or sitting press harder
against the surface than other parts of the body. Continued pressure cuts off the
circulation of blood to these sites. Without blood to nourish them, skin cells
will die.
What To Do
The first sign of a pressure sore is redness on the skin. Relieving the pressure
and rubbing around the site (not directly on it) with lotion will help stimulate
blood circulation, and eventually the redness should go away.
Figure 6.1: Pressure areas on the body.
If the redness does not go away, then there has been some damage inside the
skin and it will take more time for the redness to disappear. You need to keep
pressure off this site. Apply a simple protective dressing: a Home Care nurse
will do this for you and will instruct you how to change the dressing if and
when necessary.
When you do not tend to these reddened areas, the skin can deteriorate further
until there is an open wound. In extreme cases, the skin can break down to the
point where muscle and bone are exposed. These pressure sores can be very
painful and will require complex wound dressings. A Home Care nurse will
look after these dressings. When the nurse is not there, you will need to make
sure the dressings are kept dry and clean.
Relieving pressure can be as simple as helping your friend reposition himself
in bed every two hours. (For tips on how to move him, see Section 5). Each
time you position him, check the skin, especially the pressure sites, for signs of
skin breakdown. It is also a good idea to give the skin a gentle but firm rub
each time you change his position. Using lotion or moisturizer helps to
decrease friction on the skin. Your friend may not want you to rub his skin.
Negotiate for as many rubs as possible; they are important.
•
When you’re moving your friend to a new position, make sure not to drag
him across his bed or chair. Dragging causes friction, which will tear
fragile skin. Make sure his new position does not put any pressure on red
or open areas.
•
Using special mattresses, for example air or foam, on the bed or chair can
also help protect the pressure points of the body. Make sure the linens
closest to your friend’s skin are free of wrinkles and crumbs. Do not use
donut shaped air cushions. These cushions actually cut off circulation to the
affected area and will cause problems.
•
Skin needs food to stay healthy. If the skin is already broken, your friend
may need extra calories, protein, vitamins or liquids to help his body heal.
When eating is difficult for your friend, liquid nutritional supplements such
as Ensure or Boost may help (these are available at the pharmacy).
•
Urine and stool irritate the skin and can cause it to deteriorate very quickly.
If your friend is having difficulty controlling his bladder or bowel, it is
especially important to keep his skin clean and dry. The same applies to the
person who has a fever and is sweating.
Another problem to watch out for is edema. Edema is the medical term for
swelling due to an accumulation of fluid in the tissues of the body. As fluid
builds up in the tissues, the skin is stretched and therefore becomes fragile and
prone to break down. Sometimes fluid may seep through the skin. People with
certain kinds of cancer (lymphoma, Kaposi’s sarcoma) may have severe
problems with edema. Take care to handle swollen areas gently, keep them
elevated, and report any open areas or seeping of fluid to the Home Care nurse
and the doctor. Always use two hands to move a swollen limb.
•
Mouth Care
Prevention is the key to managing pressure sores. Give your friend good
and consistent skin care, and report any problems to the doctor or Home
Care nurse.
Your friend may get mouth problems: infections that won’t go away, like
thrush, cold sores, or “dry mouth.” Dry mouth can be a side effect of drugs or
dehydration or the result of breathing through the mouth.
Careful attention to your friend’s oral hygiene will help reduce the discomfort
of oral symptoms and may increase his ability and desire to eat and drink.
What To Do
Encourage your friend to brush his teeth at least twice a day or after every
meal. If brushing is too painful then rinsing the mouth several times a day is
very important.
•
When your friend can no longer manage his oral hygiene, you will have to
do it. If your friend is very weak and bedridden, mouth care should be done
every two hours when you reposition your friend.
•
Good mouth care involves cleaning the teeth or dentures, rinsing the mouth
thoroughly, and, when necessary, applying Vaseline or lip balm to the lips
to prevent cracking. Each time you give mouth care, inspect the mouth for
signs of irritation (redness) or new mouth sores. If you notice any irritation
or mouth sores, report them to the Home Care nurse.
•
When you use a toothbrush, make sure the bristles are very soft. You could
use a baby toothbrush, or soften the bristles by pouring very hot water over
them. Brush the teeth using gentle downward strokes, starting at the
gumline. Don’t forget to clean the back teeth! Keep a towel under your
friend’s chin to keep his clothes dry. A small kidney dish or basin can be
used to collect your friend’s spit.
•
If rinsing is all your friend can manage, make sure that he is sitting up or
lying on his side. Give small amounts of water and ask your friend to swish
and spit.
•
If your friend is unable to swallow or is unconscious, you can use
moistened toothettes to give oral care. Toothettes are little swab sticks with
a small piece of sponge on the end. The swab sticks are dipped into a
rinsing solution then gently rubbed along the teeth, inside the mouth and
between the gums and cheeks. If your friend bites down on the toothette,
don’t let go of it or try to yank it out. Your friend’s mouth will relax in a
few moments and you can then remove the toothette. Some people use
glycerin swabs, which are swab sticks packaged in a glycerin solution.
However, many people complain about the awful taste.
•
Depending on the condition of your friend’s mouth, the doctor or dentist
may have ordered special medications or rinsing solutions. Be sure to
follow the medication instructions. Some preparations are meant to be
swished in the mouth then swallowed; others should be spit out, and some
applied directly to a sore or tender area. Topical solutions to relieve pain
can be applied before eating to prevent discomfort with chewing.
•
Home-prepared rinsing solutions include one cup of water mixed with a
teaspoon of either baking soda or salt. Mouthwashes that contain alcohol
should be avoided, as they have a tendency to dry the mouth.
•
If dry mouth persists after regular rinsing, sucking on hard, sugarless candy
can help to stimulate saliva production. When there is no saliva, the inside
of the mouth can be lubricated with a little bit of K-Y® jelly or sprayed
with artificial saliva preparations. (These are available at most pharmacies.)
Lubricating the mouth before a meal is also a good idea.
•
People with sore mouths should be encouraged to drink fluids or suck on
ice chips or popsicles and should avoid smoking and alcohol, both of
which can irritate the mouth and throat. However, if your friend wants a
cigarette or a drink, let him have it.
n
Personal hygiene
Looking after personal hygiene is something your friend has managed all his
life. The fact that he might need help with this can be difficult for him to
accept and a serious blow to his self-esteem. Understanding this and being
sensitive to his need for privacy and dignity are very important.
In most cases, your friend will not need a full bath every day, but the eyes,
mouth and genital areas should be kept very clean.
Bathing
If your friend is able to move and is strong enough, he should be encouraged
to bathe in the tub or shower. If getting in and out of the tub or standing for
long periods of time is difficult, put a chair on a non-slip mat in the tub or
shower for your friend to sit on. Having your friend sit in front of the sink is
also a good idea. An occupational therapist can suggest some ideas for
equipment, such as grab bars and bath stools, which make using the bathroom
a great deal safer.
Before you help your friend to the bathroom, make sure you have soap, towels
and clean clothes or pyjamas ready so you don’t have to leave your friend
alone and dripping when he is finished bathing. Also, if your friend has any
special wound dressings, wrap them with plastic bags or Saran Wrap® to keep
them dry. If the dressing gets wet it will have to be changed by the nurse.
Be sure to check the water temperature! Get your friend to test it first. If your
friend has lost some of his ability to sense temperature, test the water yourself.
Also, if there are other people in the home, let them know your friend is in the
bath or shower. We all know what happens when someone flushes the toilet or
runs a tap in the kitchen while the shower is running.
When you’re assisting your friend with bathing, pay attention to fragile skin,
any lesions (Kaposi’s sarcoma), and the feet which may be extremely tender
due to neuropathy. A rule of thumb is to wash from head to toe. Make sure all
soap or shampoo is thoroughly rinsed away. Soap left behind can irritate and
dry the skin. Using bath oils can help to prevent the skin from drying out.
If it is necessary, you may wash your friend in bed with water from a basin. It
is better to wash a small area at a time while keeping other parts of the body
covered with a flannel sheet or a large towel. The room should be warm and
free of drafts. Every once and while ask your friend if he is cold. Start at the
head and work your way down, changing the water as necessary. Make sure
you dry each part of the body very well as you go. Use a fresh basin of water
when you wash the genital area, and dry it thoroughly.
Help your friend onto his side to wash the back and rectal area. (Once the back
is washed and dried, your friend may like a back rub, with lotion. This is a
great opportunity to give skin care.) A fresh basin of water should be used to
wash the rectal area. Starting at the genital area, always stroke gently towards
the back. Be careful when washing around the anus, as this area may be very
tender due to hemorrhoids or diarrhea. Dry the area thoroughly.
Shampooing
and Hair Care
Eye Care
•
Once the bath is finished, ask your friend if he would like to use deodorant,
powder or a moisturizer. Then help him put on a clean set of clothes.
•
Assist your friend to a comfortable position. He will probably be very tired
and may want to rest after the bath.
Keeping your friend’s hair clean and tidy is an important aspect of personal
hygiene. It may also be important to your friend to look well groomed. People
who are very ill may have problems with dandruff or flaking due to a dry scalp
or other skin problems. Hair loss or thinning hair may also be a concern.
•
Daily shampooing of the hair is not recommended as this can increase
scalp dryness and irritation. Washing the hair once a week is usually
enough. Use a mild shampoo and make sure your friend’s eyes are
protected while you rinse. Rinse the hair very well; any left over shampoo
may cause dryness or itching.
•
Comb or brush the hair gently once a day following your friend’s
directions. Most of us are quite particular about how our hair looks and this
is important to our self-esteem.
•
Massaging the scalp before you comb or brush the hair helps with
circulation and can be a very soothing experience.
Special care must be given to the eyes of people who are
immunocompromised. Eye infections can be very painful and are often highly
contagious; wash your hands! Washing your friend’s eyes daily will help
prevent infections. Encourage your friend to wash his hands to avoid
spreading infections to his eyes.
Each eye should be washed separately, with a different part of the washcloth,
to prevent moving any infection from one eye to the other. Never use soap,
only warm water. Each stroke should start from the nose side and move toward
the ear side.
Sometimes discharge from the eye will dry up and form a crust, so much so that
the eyelid will be shut tight. Never try to pry the eyelid open. You can soften the
crust by placing a cloth soaked in warm water on the eye for a few minutes.
Then gently stroke the crust away and dry the eye thoroughly. Makeup can be
removed from the eyes by using a small amount of moisturizer or baby oil.
If medications have been ordered by the doctor, make sure you give them as
directed. Some medications are used to help fight infection; others to relieve
pain and discomfort.
Tears keep the eyeball moist at all times. However, some people who are
seriously ill can no longer produce tears and need to have artificial tears
dropped into their eyes. (See Section 8 for notes on administering eye-drops.)
This also applies to people who are unconscious or who sleep with their eyes
half open.
Shaving
Glasses and
Hearing Aids
Shaving can be an important part of your friend’s hygiene routine and
self-image. However, shaving may not be appropriate if he has open sores on
his face.
•
Using an electric shaver is much easier than using a razor blade, so we
recommend it. If you use a razor blade, be very careful not to nick or cut
your friend’s skin, which leaves an open area for infection. Disposable razor
blades should be disposed of in a sharps container (see Section 4). Electric
shavers should be cleaned after every use.
•
When using a razor, practise shaving someone else before shaving your
friend. If you nick or cut the skin, apply direct pressure with a small piece of
clean gauze. Wear gloves when doing this.
•
Moisturizing the skin after shaving is a good idea. Avoid using aftershaves
that contain alcohol which will dry the skin.
If your friend normally wears glasses, encourage him to keep wearing them.
Seeing the world clearly can help to keep someone oriented to the here and
now. Make sure the glasses are clean before helping your friend put them on.
Wearing contact lenses should be avoided by people who are seriously ill or
have eye infections. The Home Care nurse will be able to assist you with the
removal of contact lenses.
As with glasses, encourage your friend to wear his hearing aid. Have him
instruct you on how it works and how it fits into the ear. If you have difficulty
with the aid, tell the Home Care nurse, or get advice from a hearing
professional. Remember, hearing aids magnify all sounds, not just speech.
n
Conclusion
Now that you have some basic information on comfort measures, you’re ready
to help your friend relieve the pain and suffering of many physical symptoms
related to serious illness. Take your time when you’re providing care. Rushing
to alleviate discomfort can sometimes result in more pain instead of relief.
Listen to your friend and work with him when you’re planning and providing
care. Talk to other members on the care team, and record your caregiving in
the care team log. When in doubt, ask for help from a health-care professional
or from someone who has been part of a care team.
No matter how difficult or impossible a situation may seem, there is always
something you can do to make things better. And remember, you can do it!
References
Mount Sinai Hospital & Casey House Hospice. A Comprehensive Guide for the Care of Persons
with HIV Disease — Module 4: Palliative Care. Toronto: Authors. 1995.
Allen L. Gilford, Kate Lorig, Diana Laurent and Virginia González. Living well with HIV and
AIDS. Palo Alto: Bull Publishing Co. 1997.
Marilyn Deachman and Doris Howell. Supportive care at home: A guide for terminally ill patients
and their families. Markham, Ontario: Knoll Pharmaceuticals Canada. 1991.
Susan Golden. Nursing a loved one at home: A care giver’s guide. Philadelphia: Running Press.
1988.
Diane Krasner. The treatment and prevention of pressure sores. Baltimore: Sinai Hospital. 1988.
Marg Raynard. Providing home-centred care to people with AIDS. Toronto: The Canadian Council
on Homemaker Services. 1990.
Notes
SECTION 7 l 89
Pain
n
Introduction
This is one of the most important sections of this manual. Your goal as a care
team is to help improve the quality of your friend’s life. If your friend is
feeling pain — physical, emotional or both — there will be little you can do
to improve her quality of life until you can ease her pain or make it
manageable.
In the past ten years there have been many discoveries about pain and pain
management (the ways we can stop or reduce pain). Attitudes about pain and
medications for pain have changed drastically among health-care professionals
and the general public. Today we have a much better idea about what we can
and cannot do to relieve pain.
The purpose of this section is to give you accurate information about pain and
how pain can be managed. It should also help ease any fears you may have
about dealing with pain. But before we get into the meat of this section, two
important points need to be stressed. This first is that any approach used to
manage pain must be consistent, and part of a well-planned and structured
routine. Dealing with pain when it happens will not be successful. Second,
prevention is the key to effective pain management. Whatever you and your
friend decide to do about pain, your decisions should be based on the need to
manage the pain before it starts, or at least as soon as possible. Waiting until
pain is severe will make it harder to manage.
This section will look at:
•
•
•
•
•
•
n
Different kinds of pain
Different personal responses to pain
Recognizing and assessing pain
Managing pain with drugs
Dealing with drug side effects
Easing pain through non-drug therapies
What is pain?
Pain is the body’s signal that something is wrong. Scientific research has given
us many other, more detailed definitions of pain. Some deal with its
physiological aspects (how our bodies actually sense pain) while others try to
90 l PAIN
describe emotional and psychological responses that can affect how we feel
and experience physical pain.
Almost every detailed definition of pain includes two points that are very
important:
•
•
Pain is personal, private and unique to the person who is feeling it.
Pain is whatever a person says it is, and it exists wherever a person says it
does.
Remember these two points. They will serve you well. If the person you are
taking care of says she is feeling pain, believe it. (A little later, we’ll talk about
how you can get your friend to tell you more about her pain so you can decide
what to do to relieve it.)
Pain can be caused by many things and can be felt in different ways. But there
are two kinds of pain we need to know about: acute and chronic.
Acute Pain
Acute pain is intense and sharp, and it happens in one specific area. It may last
for only a second or for as long as a few weeks. For instance, the pain that
comes from an injury is acute pain. When we know the source of acute pain,
we can often do something to make it stop.
Acute pain usually shows itself very directly. Your friend will tell you about it,
or you may see some of the following signs:
•
•
•
•
•
•
•
Chronic Pain
Restlessness or agitation
Sweating
Rapid pulse or fast breathing
Facial grimaces clearly showing discomfort
Moaning, crying, sometimes screaming
Rubbing, cradling or guarding the place that hurts
Tense muscles, or a fear of any movement
Chronic pain is usually the result of prolonged illness. It is often described as
dull or aching, and often can’t be pinpointed to a particular part of the body.
Chronic pain can stay constant, or it can vary in intensity. Sometimes it can be
as severe as acute pain, and can leave a person so debilitated that even eating
or walking becomes intolerable.
PAIN l 91
Chronic pain can become the focus of a person’s life — the only thing she can
pay attention to. But pain does not need to rule her life. As you’ll see later,
once we know about chronic pain, we can find ways to manage it.
The signs of chronic pain are not easy to see. Over time, the body adjusts to
the pain, so blood pressure, pulse and breathing may be normal. In fact, there
are very few true, direct signs of chronic pain. Instead, emotional responses
and changes in mood can come from living with chronic pain. These responses
include:
•
•
•
•
•
•
Frustration
Depression
Anxiety
Irritability
Decreased appetite
Suicidal thoughts
You will not know your friend is in pain just by looking at her. For example,
some people with chronic pain will use laughter as a coping mechanism.
Never assume someone is not in pain.
n
Personal responses to pain
People respond to pain, acute or chronic, in very different ways. How we cope
with pain is something we learn, and our responses change through the course
of our lives. Before we look at some of the ways we can relieve pain, we need
to consider how we feel about it — both our pain and the pain of someone we
are taking care of.
Emotional Pain
The pain that comes from intense emotional or psychological suffering can be
devastating. Very often, the emotional struggles we face will affect our bodies
and will show up as physical symptoms. Relieving the physical symptoms is a
good place to start, but it may not relieve our underlying emotional suffering.
Often, we can get impatient with people who are feeling psychological or
emotional pain. We might want to say: “Just get over it!” But emotional pain is
every bit as real as physical pain.
The best way to help people deal with emotional suffering, whatever its cause,
is to give them a chance to talk about it. You don’t need a Ph.D. in psychology
to be a good listener.
In some situations, you may find that trying to talk about emotional issues with
the person you’re caring for just doesn’t work. You’ll feel uncomfortable,
92 l PAIN
unsure of whether you’re offering real help. Don’t be afraid to ask for help
from someone more experienced: other people on the care team, counsellors
from your local AIDS organization or a visiting nurse or social worker. You
can learn from them, so you’ll feel more prepared the next time your friend
needs to talk.
The Meaning
of Pain
People feel pain differently, not just because their bodies or emotions respond
differently, but because they have different notions of what pain is supposed to
mean. The ways we experience and understand pain will depend on our age
and sex, our cultural background, the pain we’ve felt before and the ways pain
has affected our lives. All these things give a particular, private meaning to the
pain a person may be feeling now.
For some people, pain may mean that disease is getting worse and death is
near. Others will say they need to feel some pain so they know they are still
alive. For these people, pain can be valuable. It tells them: “I’m still here.”
Some people think pain is a punishment for things they have done wrong. For
example, some people with AIDS think they are to blame for their illness.
They may feel they deserve pain for having used drugs, for being sexually
active or maybe for being gay. You may find it hard to accept such feelings,
but for the person in pain these associations can be very real. It will help the
person in pain to talk about this. Knowing the emotional roots of your friend’s
pain can help you figure out how to ease it.
Tolerating Pain
People will vary greatly in how much pain they can endure, and endurance can
change from minute to minute and from day to day. Many of us believe that
people can be encouraged to tolerate their pain, to “deal with it.” Often, those
who deal “better” with pain are admired, while those who don’t are looked
down on. Such an attitude can make people who are in pain afraid to say so.
They feel they should bear up and be brave. Some people, amazingly, will
deny they feel any pain at all, even while they are grimacing and clenching
their fists.
No one should have to tolerate any level of pain she doesn’t want to
tolerate. It is a mistake to encourage a person in pain to be strong, to not
complain. You need to know about that person’s pain. Otherwise, you won’t
know what to do to help ease it.
PAIN l 93
n
Assessing pain
The first step in pain management (what you will do to relieve pain) is pain
assessment (learning about the pain). This is an ongoing process. You will
need to know as much as you can about your friend’s pain at any given time.
This information will help you provide comfort, and let you know if the help
you are giving is working.
No one is more expert about pain than the person who is feeling it. As we said
before, if the person you’re caring for says she is in pain: believe it. Even if
she’s not complaining, if you see signs of pain, ask about it. Let her talk about
it so that you can learn what it feels like, what it may mean emotionally as well
as physically, and what you can do about it.
Below is a checklist of different characteristics of pain. This list can guide you
in talking to your friend about pain, and it can help you get clear information
that can be used to make decisions about how the pain can be eased.
Characteristics
of Pain
•
Location: Where on, or in, the body is the pain? Is it in one particular
place, or is it all over? You can ask: “Can you point to where the pain is? Is
it deep inside or on the surface?”
•
Onset: Have you had this pain before? When did the pain begin? An hour
ago? Yesterday? Months ago?
•
•
Frequency: How often does the pain occur?
•
Quality: What does the pain feel like? Ask your friend to describe it. Give
her examples of words to use: stabbing, burning, aching, throbbing,
piercing.
•
Intensity: How much does it hurt? It may be helpful to ask your friend to
rate the pain on a scale from zero to ten, where zero is no pain and ten is
the worst ever.
•
Precipitating factors: What could have started the pain? Was it
movement? Eating? Pressure? The way your friend was lying or sitting?
•
Alleviating factors: What makes the pain go away? Rest? Massage?
Movement?
Duration: How long does the pain last? Minutes? Hours? Does it come
and go, or is it constant?
94 l PAIN
Staying
Informed
Make note of your friend’s answers to each question about the characteristics
of her pain. Your notes will help you plan how to deal with it. And the
information will be very useful to the doctor in prescribing treatment.
It is also important to let other care team members know what you find out.
You all need to know what kind of pain your friend is feeling if you’re to
provide comfort. It’s especially important to note changes in her pain and what
she says works to relieve it. These things can change. The care team log (see
Section 3) is a good place to make note of these points regularly.
n
Managing pain with drugs
Drugs that provide relief from pain are called analgesics. There are two basic
groups of analgesics:
•
Narcotics are analgesics defined by the Canadian Narcotic Control Act as
controlled substances. They are used for moderate to severe pain. An
example is morphine. The misuse of these drugs can result in physical and
psychological dependence.
•
Non-Narcotics include both analgesics and anti-fever drugs and are
probably the most common drugs used in medicine. Aspirin and Tylenol
are examples. These drugs are most often used to relieve mild to moderate
pain and to reduce fever. Aspirin can also alleviate inflammation, and it
hinders blood clotting.
A list of the most common analgesic drugs is provided on the next page.
A doctor may prescribe other drugs that can work with analgesics to help
relieve pain:
•
Antidepressants act directly on a part of the brain that makes us less
sensitive to pain. Low doses of antidepressants will have this effect after
only a few days. Larger doses can relieve the depression that often comes
with long periods of persistent pain, but it may take several weeks at higher
doses before the drug works against depression.
•
Tranquillizers have the ability to relieve muscle tension, twitching,
spasms and some of the anxiety associated with pain. When used in
combination with some narcotics, such as morphine, tranquillizers may
reduce the severity of pain, so the dose of narcotic can be reduced.
Tranquillizers and alcohol both depress the nervous system, so they should
not be taken together.
PAIN l 95
Some Common
Pain Relieving
Drugs
For each analgesic drug listed below, the chemical name is given first,
followed in italics by some of the brand names under which the drug is sold.
Not all pain relieving drugs are listed here. New drugs are developed and
tested every year, so make sure to ask your friend’s doctor about any new
drugs that may become available. Also, note that some of these drugs are
available in different forms, such as pills, liquids, suppositories, topical skin
patches or injectables. The doctor will know what forms are available for each
drug.
Non-narcotics:
Acetylsalicylic Acid (ASA): Aspirin, Aspergum chewing gum, Entrophen,
Anacin (caffeine added), Ecotrin (coated to reduce stomach upset)
Acetaminophen: Tylenol, Atasol
Ibuprofen (non-steroidal anti-inflammatory: NSAID): Advil, Motrin
Indomethacin (NSAID): Indocin
Naproxen (NSAID): Naprosyn
Diclofenac (NSAID): Voltaren
Ketorolac (NSAID): Toradol
•
•
•
•
•
•
•
Narcotics:
Codeine phosphate or Codeine sulphate: Codeine
Codeine + Acetaminophen: Tylenol # 1, 2, 3 & 4 for example
Codeine + ASA: 222s, 252s, 292s for example
Anileridine phosphate: Leritine
Hydromorphone hydrochloride: Dilaudin
Meperidine hydrochloride: Demerol
Methadone hydrochloride: Methadone
Morphine sulphate: Morphine (Morphine IR = instant release; MS Contin
= slow release over 12 hours; Kadian = slow release over 24 hours)
Oxycodone hydrochloride: Percocet (with acetaminophen); Percodan
(with ASA)
Pantazocine hydrochloride: Talwin
Propoxyphene: Darvon
Nalbuphine: Nubain
Fentanyl: Duragesic (skin patches in various doses)
•
•
•
•
•
•
•
•
•
•
•
•
•
Addiction and
Physical
Dependence
One of the greatest misconceptions about pain management is that people who
are taking drugs for pain become addicted to them. Except in very rare cases
(so rare that they are hardly worth mentioning), this is not true. People do not
become addicted to pain medications that are used correctly. Before we
discuss this point, we need to clarify the difference between addiction and
physical dependence.
96 l PAIN
Physical dependence is the body’s need to maintain the effect of a drug. When
the drug is stopped, the body will experience symptoms of withdrawal. The
degree to which the body is physically dependent is measured by the severity
of withdrawal symptoms. No two people will experience physical dependency
or withdrawal in the same way or to the same degree. In fact, people who stop
taking narcotics correctly usually experience such mild symptoms of
withdrawal, that they go unrecognized by the person in care and health-care
professionals.
Addiction is what some people refer to as psychological dependence: a need or
compulsion to experience a drug’s psychic effect or to avoid the emotional
discomfort of its absence. Research has shown that less than one percent of
hospitalized patients receiving narcotics for pain will become addicted. Most
people stop taking the narcotics when the pain stops. Even in the case of
chronic pain and long-term narcotic use, although physical dependence might
occur, addiction is rare. Addiction to pain medications can be the result of poor
pain management or addictive behaviour. (Unfortunately, addictive behaviour
is common in people with AIDS. This is discussed in Section 10.) When they
are used properly and consistently, pain medications, including narcotics, can
restore a person’s quality of life.
Tolerance
No two people have the same response to a drug, and not all drugs work for all
people. Even when they do, not all people need the same amount of a drug.
Most people taking pain medications will gradually need a higher dose over
time. This is because the body develops a tolerance for drugs. We become
used to a drug, and it stops working as well. This is true for many drugs, not
just pain medications. With many drugs there is a maximum level that can be
taken safely. This is not true for narcotics. There is no “ceiling”; no maximum
dose. The dose of a narcotic can be increased as much as necessary to relieve
pain.
However, going suddenly from a low dose to a very high dose of a narcotic
can be deadly. Narcotics are controlled by legislation and kept under lock and
key, not just because they are potentially addictive, but because uncontrolled
use can be dangerous.
Some people will need larger doses more quickly than others, while some will
continue to do well on the same dose, or even a smaller one. Finding the right
dose takes time and depends very much on regular assessment of the person’s
level of pain. That’s why talking with your friend about pain is so important.
Doctors who are familiar with palliative care will know how to increase drug
doses appropriately. Unfortunately, some doctors have not had the opportunity
to learn about recent advances in prescribing pain medications and may be
reluctant to increase your friend’s dose. If the pain is not managed, you may
PAIN l 97
want to talk to your friend about consulting with a palliative care specialist.
Ask the doctor for a referral or call your local hospital or hospice program to
find out how you can get connected to a palliative care specialist.
Scheduling
Pain medication should be given at regular intervals around the clock.
Scheduling varies according to the drug and the dose, but drugs are usually
given every three to five hours. Too often, pain medications are ordered
“PRN,” which means: “take when required.” This is not effective pain
management. Doses taken when needed can become irregular, and pain may
break through between doses. (We talk more about breakthrough pain later.)
Most pain medications will take effect within fifteen to thirty minutes. This is
useful to know if you have to change a dressing or move a person around in
bed to change sheets, padding or diapers. Plan to do your work just after a
drug has taken effect, to reduce discomfort. (For information on administering
drugs, see Section 8.)
Breakthrough
Pain
Sometimes pain will break through even when it should be controlled by
medication. For example, a person may feel mild or even severe pain two
hours before the next scheduled dose.
Most doctors will order a certain amount of pain medication to be given when
breakthrough pain occurs. (This is a good example of a PRN prescription.)
Such orders will usually say how much of the drug to give. Don’t give more.
Overloading a person with pain medication could increase side effects of the
drug.
Substance Use
and Pain
The number of substance users, for example intravenous drug users, infected
with HIV has grown dramatically in the last few years. When a substance user,
either clean (off drugs or alcohol) or using, requires pain management, the
approach to managing pain is somewhat different:
•
Tolerance to narcotics and other analgesics is often higher than we would
normally expect. Therefore, increased doses of narcotics and shorter
intervals between doses may be required to relieve your friend’s pain.
•
The liver plays an important role in removing toxins (such as drugs) from
the body. Long periods of substance use can cause liver damage. So, when
narcotics and other drugs are being used to relieve pain and other
symptoms, careful attention must be paid to preventing liver failure. Liver
function can be monitored with blood tests.
98 l PAIN
•
Substance users may be more prone to withdrawal symptoms and/or drug
interactions as a result of their substance use history.
•
Many substance users have been through a detox (abstinence) program and
will be resistant to using narcotics, fearing they will become addicted.
Others may view the use of narcotics as a relapse into old patterns.
•
Managing pain is only one piece in the very large puzzle of issues related
to palliative care for substance users. Other issues and ways to support your
friend are discussed in Section 10.
n
Drug side effects
Many drugs cause effects other than the ones they are meant to cause. Often
these side effects are minor and temporary. In some cases they may be severe
enough that they outweigh the benefits of the drug. Here are some common
side effects of pain medications, and some of the things you can do about
them. (See also Section 6.)
Drowsiness
What To Do
When a drug is given for the first time, it may have an effect on the nervous
system and make a person sleepy. This may clear up in a few days, or it may
last as long as a week. Remember, a person may also be tired from exhaustion
and lack of sleep.
Letting your friend have a cat nap when she is sleepy is okay, but she should
be easy to arouse and able to converse — unless she is seriously ill and the
disease process prevents this.
o Wait to see if drowsiness goes away in a few days. If it doesn’t, let the
doctor know. The doctor may want to lower the dose of the drug.
Confusion
When someone is just starting to take pain medications, especially narcotics,
she may feel confused or “high.” A few people may even have hallucinations.
This is not an unusual response. It may last three or four days, until the body
has had time to adapt to the drug.
What To Do
This may be a frightening period for people taking new medication. They may
want to stop the drug. Support your friend through this period. The side effect
should pass, and the pain will be relieved.
o If confusion persists, let the doctor know. Lower doses or another drug may
be recommended. In addition, other disease processes may be causing the
confusion, and might need to be looked into.
PAIN l 99
Nausea and
Vomiting
What To Do
When first used, strong narcotics can cause queasiness or even make a person
throw up. These problems usually disappear in a few days. (Nausea and
vomiting can also be an effect of other drugs your friend is taking, or a result
of the illness.)
Encourage resting in bed for the first hour or so after taking pain medication.
o Remind your friend that pain can cause nausea and vomiting, and that,
when this is the case, the drug may help relieve it.
o If the problem persists, the doctor may prescribe anti-nausea drugs. (Drugs
such as Gravol, Stemetil, Maxeran or Zofran may work well for
nausea caused by narcotics.)
Constipation
This is a very common side effect, especially with long-term use of narcotics,
which can slow down the digestive system and let stool build up in the bowel.
This can cause great discomfort.
What To Do
Don’t let constipation persist. The best way to treat it is by preventing it. Start
early to avoid problems.
o Try to increase the amount of high fibre foods in the diet. Fresh fruit,
vegetables and bran are all helpful.
o Give your friend as much liquid as she will take. Eight glasses of water or
juice a day are not too much unless the doctor has asked your friend to
limit her fluid intake.
o Try to get your friend moving. Exercise, short walks, even moving in bed
will help move stools through the bowel.
o Try to plan bowel movements for the same time of day. A hot drink half an
hour before may help the process.
o A laxative or stool softener may need to be ordered by the doctor. Don’t
use these without consultation. They can be very harmful if they’re used
unnecessarily. Morphine will generally cause some degree of constipation.
So if your friend is taking this drug, you may want to ask the doctor to
prescribe a mild stool softener. If your friend is taking high doses of
narcotics over a long period of time, then a stool softener and/or laxative
will probably be necessary.
100 l PAIN
Dry Mouth
What To Do
Some pain medications may decrease the amount of saliva in the mouth. A dry
mouth is uncomfortable and can get irritated easily.
Encourage your friend to drink lots of liquids, especially water.
o Offer moist foods, such as fruit.
o Provide ice chips, popsicles or hard sugarless candies to suck on. Sugarless
candies are best since sugar will promote the growth of yeast (thrush) and,
thereby, add to your friend’s discomfort.
o Rinse your friend’s mouth often. Avoid commercial mouthwashes that
contain alcohol. (The alcohol will dry the mouth even more.) A good
substitute is one teaspoon of baking soda in a cup of warm water.
o Brush your friend’s teeth often.
o Keep your friend’s lips moist with Vaseline®.
n
Managing pain without drugs
There are a number of ways to relieve pain that do not involve the use of
drugs. This is not to say that drugs should be avoided. Many kinds of pain
cannot be relieved without the help of drugs. However, some forms of pain
can be relieved very effectively with non-drug therapies. Most often, a
combination of both drug and non-drug therapies will do the best job.
There are many different non-drug therapies to help manage pain. Some of
them may not be familiar to you or to the person you are caring for. Never
jump into a therapy without learning something about it first. Discuss it with
your friend to see which ideas seem most comfortable and might work best.
If you can, find someone who is familiar with the therapy you want to try.
There are many well-trained professionals using many different therapies. You
may want to get a professional to come and teach you how to do it. To find out
more about non-drug (complementary) therapies, contact your local AIDS
organization or hospice program.
Be realistic and fair when you’re trying a new therapy. Many people will hope
that a therapy will be the answer to their problems with pain. A positive
attitude is a good place to start, but building up false expectations can have
devastating effects. Both you and your friend need to take time to get used to a
new therapy. Don’t give up on the first try; unless, of course, it causes more
pain.
PAIN l 101
On the following pages you will find some of the non-drug therapies used in
pain management. You can also take a look at other comfort measures
discussed in Section 6.
Distraction
Mental Imagery
Massage
Distraction can turn a person’s attention to something other than pain. The
distraction might be something as simple as watching TV, listening to music or
reading. A combination of sensory experiences works well. For example, you
and your friend try listening to music with a strong beat and tapping your
finger and feet or rocking in a chair while looking out a window. If your friend
has a hobby or special interest, paying attention to the hobby can take her
mind off pain. Being with friends and family or spending time with a pet can
offer both distraction and comfort.
Mental imagery involves using your imagination to create mental pictures or
actions. It is like daydreaming. It can help with pain relief, and it can reduce
anxiety, relieve boredom and enhance relaxation. The imagery can be most
beneficial when you imagine the mind combatting the side effects of a
treatment or the symptoms of disease. Likewise, it can be used as a way to
distract your thoughts from the pain to a calmer, even enjoyable imaginary
place.
Rubbing a sore spot or an aching muscle is an instinctive act to promote
soothing and comfort. It is a form of massage. A massage to the back, feet,
legs or the entire body can decrease pain and increase a person’s sense of
well-being.
Massage is touch, and is thus an intimate and powerful form of
communication. It requires respect for the person’s privacy, and her physical
sensitivity. Always ask how much pressure should be used anywhere, and
what parts of the body should be avoided. Sometimes, massage, gentle
pressure and skin stimulation may work collaterally; for example, try rubbing
the left arm when the pain is in the right arm.
Cold hands are shocking and can be painful, so always warm your hands first.
The use of lotions or massage oils can make a massage feel even better. Some
of these oils are scented and can have a double effect: massage and
aromatherapy. There are many scented oils on the market today; ask your
friend if she wants to try a couple. Lotions and oils also can do wonders for
your friend’s skin, helping to keep it moist and healthy.
Many massage therapists will visit the home and will be happy to teach you
the basics of good massage therapy.
102 l PAIN
Relaxation
Relaxation can help reduce muscle tension, decrease fatigue, reduce anxiety
and make other pain relief measures work better. It takes practice, and you
may have to try several different techniques before you find the right one.
Once started, relaxation techniques should be used frequently; they should
become routine. You could start with ten to fifteen minutes twice a day.
Here is a simple exercise your friend can try:
1. Choose a comfortable position, sitting or lying down, in a quiet place. Soft
music might be helpful.
2. If you’re sitting, make sure your head and shoulders are supported. If you
are lying down, support your neck and knees with small pillows. Your
eyes may be open or closed.
3. Breathe in . . . tense your muscles . . . hold the breath and keep your
muscles tense for a few seconds . . . let go. Breathe out and let your body
go limp. Relax.
4. Try focussing your attention on particular parts of the body, tensing and
relaxing one part at a time. Start at your toes and work up toward your
head.
5. Avoid tensing your muscles if it causes pain.
Therapeutic
Touch
Therapeutic touch is like, but not the same as, the healing or helping act of
laying on of hands; there is no religious belief involved or necessary.
Therapeutic touch requires special meditative skills which are used by, or can
be learned from, trained professionals. While sitting or lying in a comfortable
position, the practitioner gently sweeps his hands a few inches above your
body, without touching it, to tune into the energy fields that radiate from your
body. With disease or illness, energy fields are blocked or become depleted.
The practitioner senses this through changes in temperature and directs life
energy into your body to restore its energy balance. During, or shortly after, a
session of therapeutic touch, you may come to feel a soothing warmth that is
very relaxing. Many people have said that one or more sessions of therapeutic
touch have done much to help relieve their pain.
Skin
Stimulation
Like massage, the application of heat, ice or pressure to the skin will stimulate
nerve endings that can compete with pain. The new sensation offers distraction
and can help block nerve signals for pain.
PAIN l 103
Transcutaneous Electrical Nerve Stimulation (TENS) uses a small batterypowered machine to send tiny electrical impulses to trigger points on the skin.
These impulses can bring several hours of pain relief after as little as five to
twenty minutes of stimulation. A massage therapist or chiropractor can give
you more information about TENS.
Acupuncture
Acupuncture, a system of therapy developed in China, has been used for
centuries. It involves the insertion of very fine sterile needles into key points
on the body that control pathways of energy (meridian lines). Inserting needles
at specific points on the body’s meridian chart can block the energy that causes
pain. It can also be done with lasers, thereby avoiding the use of needles. Like
massage therapists, many acupuncturists will visit the home.
n
Conclusion
Pain is frightening. It can take over people’s lives and leave them totally
debilitated. With recent advances in pain management and palliative care,
there is little reason why anyone should ever be in pain. However, it is
important to realize that, in rare cases, it may be impossible to relieve all of
your friend’s pain. This will be as difficult for you as it is for your friend and
will require careful attention to your psychological and emotional well-being.
To experience or witness suffering can be a profound hardship. Yet some
people grow and find new insight through their suffering by sharing their
thoughts and feelings about the experience.
Although some people with AIDS do have a lot of physical pain, more often
than not, we see the symptoms of psychological and emotional pain.
Emotional pain is as real as physical pain, and we need to deal with it daily. As
with many other things related to AIDS, fear and the pain associated with fear
can be overcome through awareness, understanding and compassion.
References
with HIV Disease - Module 4: Palliative Care. Toronto: Authors. 1995.
Canadian Cancer Society and Health and Welfare Canada. Pain relief: Information for people with
cancer and their families. Revised. Toronto: Authors. 1988.
The Victoria Hospice Society. Hospice resource manual: Medical care of the dying. Victoria:
Authors. 1990.
104 l PAIN
Notes
SECTION 8 l 105
Medications
n
Introduction
Drugs are powerful. They can do good, and they can also do harm when
poorly understood or misused. Many of us have a certain fear of drugs. They
can cause unwanted side effects. They can be abused, and abuse can lead to
addiction. It is important to treat drugs and the use of drugs with care and
respect.
As you read through this section, you will see that drugs can be an ally in
helping you provide excellent care for your friend. Many drugs are a critical
part of the care of people with HIV and AIDS. And when someone is dying,
drugs can play a pivotal role in relieving symptoms, easing pain and
promoting quality of life. It also important to remember that drugs can be most
effective when used in combination with non-drug (complementary) therapies.
The purpose of this section is to give you a better idea about drugs and how
they work, and to reduce any fears you might have about helping your friend
use them. This section has a medication chart to help you keep track of the
drugs your friend takes. Make copies of this chart, keep it in a place that is
easy to find, and make sure everyone uses it to record what drugs are taken
and when they are taken.
Not all care teams will be involved in giving medications. In fact, certain
AIDS service organizations and hospice programs have strict rules about care
team volunteers NOT giving medications. These rules need to be respected.
The fewer people involved, the better. This will reduce confusion and the
chances for error.
•
•
•
•
•
The categories of drugs
Recording, storing and disposing of drugs
The golden rules for giving drugs
Giving medications
The effects of drugs
106 l MEDICATIONS
n
The categories of drugs
There are thousands of different drugs, and they’re used in many different
ways. However, you do not have to be a pharmacist to know enough about
drugs to help your friend use them. You do need to know some of the basic
categories of drugs, how you can get them and how to make sure they are used
properly.
Prescription
Drugs
Prescription drugs are medications ordered by a doctor for a specific purpose
and purchased through a licensed pharmacy. Prescriptions are meant to control
drugs that might be dangerous if misused.
A prescription drug will always have a label giving the name and dose of the
drug, the doctor who prescribed it, the name of the person it is for and
instructions about how it should be taken. It may have other warnings about
how the drug should be used. (Some examples: “Avoid milk products.”
“Finish all this medication unless otherwise directed.”) Here are three points to
remember about prescriptions drugs:
Over the
Counter Drugs
•
Give them only to the person who is meant to get them. That’s the
person whose name is on the label. Never give them to anyone but the
person who is supposed to take them. And never take them yourself.
•
Follow the instructions. Specific doses and times are very important to
make a drug work the way it should. Warning labels, such as “Take with
food,” are often meant to help reduce the side effects of a drug, so pay
attention to them.
•
Don’t run out. You need a doctor to write a prescription or place an order
with a pharmacist. This can take time. So you should watch for supplies
getting low. When there are only three or four days’ worth of a drug left,
check with the doctor to see if the prescription is supposed to be refilled.
Drugs you can buy without a prescription are called over the counter drugs
(OTCs). Aspirin, cold remedies and products for indigestion are all OTCs.
The use of over the counter drugs is not controlled by prescription, but it is still
possible to misuse these drugs. Your friend may use many OTCs, and that’s all
right. But here are some things to remember about them:
•
Make sure the doctor knows about them. Some over the counter drugs
should not be taken with drugs a doctor might prescribe to cure infection or
relieve symptoms. Some OTCs can make a prescribed drug work less well,
or make side effects worse.
MEDICATIONS l 107
•
Natural
Preparations
Read the instructions and warnings. Over the counter drugs always have
notes on the package to tell you the recommended dose, to warn about side
effects and to say that people with particular conditions or illnesses
shouldn’t take the drug. Make sure the drug is all right for your friend and
that he isn’t taking too much.
Many people are concerned about pumping their bodies full of chemicals such
as drugs. Natural preparations have become increasingly popular as
alternatives to traditional drug therapies.
Most natural preparations are derived from plants, roots and herbs. Responses
to natural preparations vary from person to person, but for many people these
preparations cause fewer side effects and can be more effective than other
drugs. Some people have had great success using only natural preparations.
But most experience to date suggests that a thoughtful combination of
traditional and natural drug treatments is what works best.
You can find out more about natural preparations from naturopaths,
homeopaths and specialists in Chinese medicine. They will need to know what
traditional drugs your friend is taking. The doctor should also be given a list of
any natural preparations your friend decides to use.
Alcohol and
Recreational
Drugs
We use alcohol and other recreational drugs to affect our moods. This may be
an important need for someone who is dying. The person you are caring for
may have used alcohol or other drugs before, and may want to now.
Remember: the goal is to improve quality of life, and it is up to your
friend to decide what that means. Some recreational drugs may be
helpful. But, like any drug, some might react badly with prescription
medications, cause serious side effects or keep the medicine from doing its
job. This is especially true of alcohol, which can be dangerous when taken
with many prescription drugs.
Encourage honesty about recreational drug use between your friend and his
doctor. Your friend wants to feel better. The doctor can advise on what might
help that happen, and what might hurt.
108 l MEDICATIONS
n
The Medication
Chart
Recording, storing and disposing of
drugs
Keeping records of medications is very important, especially when regular
doses of pain medication are being given. A medication chart is included at the
end of this section to help you with this important task. The chart has been
designed to record medications over a 24-hour period in two ways:
Option 1:
In the space above the 24-hour chart, write the following information:
•
•
•
Drug name, dose, route, times to be given
Special instructions such as: take with food / milk, take before meals, no
alcohol, etc.
Side effects
When using Option 1, each drug gets its own chart. While this may mean you
will have several sheets, it keeps your records organized and clean. A sample
chart is included at the end of this section.
Option 2:
Do the same as in Option 1, but for two or three drugs. This can be useful for
pain medications when trying to visualize how many breakthrough doses are
required between regular doses (see Section 7).
For both options, record the date in the date column and then tick or initial
under the time(s) the drug was taken. For drugs that need to be given on a
regular schedule, it can be helpful to highlight each column corresponding
with the times the drug should be taken.
Storage
Here are some things to consider when deciding where and how to store drugs:
•
Safety. Drugs should be kept in a safe place out of the reach of children or
anyone who might take them accidentally. This includes your friend, if he
can no longer control or record his own use of these drugs.
•
Maintaining drug quality. Heat and light can change the chemical
composition of some medicines, so most drugs are best stored in a cool,
dark place. Some drugs need to be kept in the refrigerator. Make sure they
won’t freeze and that children can’t get at them. Many drugs also have an
expiry date. If a drug is too old to use, throw it away and get a fresh supply.
MEDICATIONS l 109
•
Making sure you have what you need. Remember, it might take a few
days to get a new supply of a prescription drug. You always need to know
how much you have left of any drug and how long it will last — so keep all
your stock of each drug in one place. Make sure someone is in charge of
keeping an inventory of supplies.
•
Staying organized. It is very easy to mix up drugs, especially when
someone has to take many different ones. Try to organize the way you store
drugs so it’s easy to tell which is which. Keep the medication chart nearby
for quick checking. You might try colour coding: mark each label with a
coloured dot, then put a matching dot beside the drug’s name on the
medication chart. This will help ensure you are giving the right drug. Many
pharmacies sell medication dispensers called dossettes, which can help to
organize a long list of medications to be taken. These dispensers include a
series of small compartments in which you can organize medications for
each day of the week. Some dispensers will have, for each day, several
compartments for different times of the day. Others come with alarms that
go off when a medication should be taken. Check these dispensers out and
find the one that suits your friend best.
Whatever storage or labelling system you set up, make sure everyone who has
to give drugs knows about it. They all have to be able to find drugs quickly,
tell which is which, and keep them organized.
Disposal
Expired or unneeded medications should be thrown away or returned to the
pharmacy. Do not flush these medications down the toilet.
o If you have to throw any drugs in the trash, make sure they are securely
contained so children or animals can’t get at them. You should also remove
the label or black out your friend’s name to protect his confidentiality.
n
The golden rules for giving drugs
There are five golden rules that need to be followed when you give any
medication:
•
•
•
•
•
The right drug
The right dose
The right person
The right route
The right time
110 l MEDICATIONS
The Right Drug
Many people with AIDS take a lot of drugs, and many of those drugs have
similar names. So it is important when you are giving someone a medication
to make sure it is the right drug. Check the entire name carefully.
Read the medication chart and the drug label carefully. Make sure the drug
names match. Over time, many drugs become weaker or stronger, so check the
expiry date to make sure it’s still all right to give this drug.
o Never give any drug — even an over the counter drug — that is not on
the medication chart without checking first with a nurse or doctor.
The Right Dose
Many drugs are available in different doses, that is, different amounts or
strengths. When giving a medication, make sure you are giving the amount
prescribed on the medication chart. For instance, the prescribed dose may be
500 mg, but the label on the drug says the tablets are 250 mg. In this example,
you have to give your friend two tablets to give the right dose.
o Giving more than the prescribed dose of a drug will not necessarily make it
work better or faster. Never increase or decrease the dose of a drug
unless so instructed by a doctor or nurse.
The Right
Person
This rule is important in settings where more than one person is being taken
care of. Nurses in hospitals, for example, must always make sure they are
giving the right drug to the right person.
Your care team is probably taking care of only one person at home. But if you
are caring for more than one person, always make sure to check the person’s
name on the label of the drug you are about to give.
The Right
Route
Drugs come in different forms: pills, liquids, ointments, drops, injectables, etc.
(We will discuss all these later in this section.) A drug’s form usually dictates
the route by which the drug gets into the body.
Most drugs can only be given by one route. Usually the right route is
obvious — but sometimes it is not. Some pills are meant to be put under the
tongue, not swallowed. Some ointments are dabbed inside the eyelid, not
rubbed on the skin. Drops may go in the nose or eyes or ears. Make sure you
know the right route for the drug you are giving.
Sometimes the usual route for a drug can’t be used, but the drug the person
needs may be available in a different form that can be given by a different
route. For example, a person in a coma cannot swallow pills, but there may be
MEDICATIONS l 111
a liquid form of the same drug that can be given under the tongue, in the
cheek, rectally or, as a last resort, by injection.
The Right Time
Most prescription drugs are meant to be given on a regular schedule or at a
specific time, for example: every two hours, twice a day, with meals. These
instructions will appear on the drug’s label, but should be written on the
medication chart, too.
o The safest thing to do is to give the drug as scheduled. However, when that
can’t happen or when a dose has been missed, it is all right to give a drug
up to a half hour before or after the time it was scheduled to be given.
This rule can change when it comes to certain drugs:
Pain medications:
Section 7 on Pain, will tell you more about drugs meant to relieve pain and
how often they can be given.
PRN medications:
Some drugs are prescribed “PRN.” These initials stand for pro re nata, a Latin
term used on prescription forms that means “for something when it begins”; in
other words, “take when necessary.” These drugs are usually used to treat
specific symptoms as they happen, such as fever, vomiting or anxiety.
PRN drugs must be used carefully. They have the greatest potential for being
misused or abused. Most PRN medications will come with instructions that
limit how much of the drug can be taken in a twenty-four hour period.
Excessive use can have serious side effects.
Any PRN medications your friend is taking should be listed on the medication
chart, even though they are not given on a regular schedule. Don’t forget to
record on the chart the time your friend took any PRN drug, how much and
what effect it had.
The Sixth Right
The sixth right is your friend’s right.
•
Anyone asked to take a drug has the right to know what the drug is,
what it is supposed to do and what the possible side effects might be.
It is the responsibility of doctors, nurses and pharmacists to provide this
information. Never take this role unless you have been educated by a health
professional on what drugs your friend is taking and for what reasons. If you
don’t know, say so and never guess.
112 l MEDICATIONS
Any person has the right to refuse any or all drugs. Never force anyone to take
any medication. Remember that it is your friend’s body, your friend’s life, and
that he is in charge. You can remind someone what a drug is for, you can
suggest what may happen if it’s not taken — but you cannot force it.
The best thing to do if someone refuses a drug is to try to find out why.
Perhaps it makes your friend feel sick. If it’s a pill, maybe it is too hard to
swallow. If it’s an ointment or injection, maybe it hurts too much. Try to find
out. Record the reasons on the medication chart and in the care team log, and
let the doctor or nurse know. There may be another drug, or another form of
the same drug given in a different way, that could be used instead.
Finally, it is important to ensure that your own biases about drugs and
non-drug therapies do not influence your friend when he is taking or trying
new medications or non-drug remedies. While you may want to suggest a drug
or natural preparation that has worked for you or for someone you know, be
sure your suggestion is based on fact. Once again, anything new should be
cleared first with the doctor or nurse.
n
Giving medications
Here are the different forms medications can come in, how they work and
some helpful hints on how to give them.
Oral
Medications
Oral medications include anything that goes in the mouth and is swallowed:
pills, capsules, tablets, lozenges, syrups and elixirs. Most of these are meant to
be swallowed right away. However, some oral medications, such as lozenges,
are sucked or chewed. Lozenges should not be swallowed whole.
Oral medications are absorbed in the stomach or intestines, then circulated
through the bloodstream to the rest of the body. Some oral medications will act
quickly, but not for long. Others are absorbed more slowly, take longer to act
and last longer. Generally, a pill will take effect in fifteen to thirty minutes. But
remember: how quickly any drug acts and how long it works will vary from
person to person.
How to give them
Giving medication by mouth is the safest and easiest way to get a drug into the
body. Here are the things you need to remember:
o Wash your hands before you handle the drug.
o For pills, capsules or tablets, offer a glass of water or juice to help your
friend swallow. Suggest he take a sip of fluid before taking the pill. This
MEDICATIONS l 113
will lubricate his mouth and help him swallow. Avoid milk unless you’re
told the drug should be taken with milk.
o Some pills and capsules can be very small and slippery and may be
difficult for your friend to handle. Try putting them in an egg cup (available
in the kitchen section of most stores). This will make it easier for your
friend to see the drugs and get them into his mouth.
o Help your friend sit up, or raise his head, to make swallowing easier. Never
give an oral medication to someone who is lying down. A person who
tries to swallow while lying might choke.
o If your friend cannot swallow pills, try to get the medication in a liquid
form. If a liquid form isn’t available, you can crush a pill between two
spoons, then mix it with liquid, pudding or applesauce. Always check with
a pharmacist before you crush a pill; not all medications can be crushed
and given this way. For example, medications in “slow” or “timed-release”
form cannot be crushed as they are meant to be absorbed over an extended
period of time.
o If your friend spits out the drug or vomits, try to give it again in fifteen
minutes. If that doesn’t work, ask the doctor if there is another form of the
drug, or if there is something your friend can take to help prevent vomiting.
o Some drugs are hard on the stomach. Don’t give oral medications on an
empty stomach unless that’s what the instructions say to do. Check the
labels on the package or bottle and do what they say.
o Before you record on the medication chart that an oral medication has been
taken, make sure your friend has swallowed it.
o Never try to give oral medications to someone asleep, unconscious or in a
coma.
Sublingual
Medications
How to give them
“Sublingual” means “under the tongue.” Some medications are not meant to
get as far as the stomach. They are put under the tongue, where they dissolve
and are absorbed into the bloodstream. Many sublingual medications act very
quickly. Buccal medications are medications that are placed in the inside
pocket of the cheek.
o Wash your hands first.
o If possible, ask your friend to rinse out his mouth before giving these
medications. (See mouth care in Section 6.) The drug will be absorbed
better in a clean mouth.
114 l MEDICATIONS
o Put the pill under your friend’s tongue or in the inside pocket of the cheek.
Explain that it should not be chewed, and that it has to stay under the
tongue until it is completely dissolved.
o Don’t give any fluids or food until the pill is gone.
Nosedrops
How to give them
Nosedrops go directly inside the nose, where they act on the mucous
membranes to loosen nasal congestion, reduce irritation and swelling or
relieve allergy symptoms.
o Gather the medication you need, then wash your hands.
o Help your friend lean his head back. If he’s lying down, a pillow under his
shoulders can help.
o Push up the tip of the nose and place the dropper a third of an inch into one
nostril. Squeeze the medication in. Make sure you give the right amount.
(Most droppers will come labelled, marking the amount of drug to give.)
Then do the same for the other nostril.
o Ask your friend to leave his head back for a few minutes.
o Nosedrops may cause some throat irritation, so offer your friend a sip of
fluid.
o Wash your hands.
Eyedrops and
Ointments
Some medications in liquid or ointment form go inside the eyelid to act
directly on the eyeball or be absorbed into the bloodstream. Eyedrops come in
a small bottle with an eyedropper attached to the lid, or in plastic bottles with a
tip for squeezing drops out of. Eye ointments usually come in small,
squeezeable tubes.
Eyedrops and ointments are used to soothe irritation, relieve pain, fight
infections, lubricate the eye or dilate the pupils.
How to give them
o Get the right bottle or tube and some tissues. Wash your hands.
o Ask your friend to sit or lie with his head leaning back.
o You may need to clean his eye of any crust or discharge. Using a clean,
moistened tissue, wipe gently from the inside of the eye, near the nose, to
MEDICATIONS l 115
the outside. To avoid spreading infection, use a different part of the tissue
for each stroke; and never use the same tissue for both eyes.
o Ask your friend to look up at the ceiling. Gently pull down his lower eyelid
with the fingers of one hand. If you are right-handed, use your left hand to
do this. If you are left-handed, use the right. You want your best hand free
to squeeze in the medication.
For drops:
Gently squeeze the prescribed number of drops into the lower eyelid. Do not
let the eyedropper or the tip of the bottle touch the eyelid. Ask your friend to
blink once.
For ointments:
Squeeze a thin line of ointment from the inside to the outside of the eyelid.
Ask your friend to squeeze his eye shut for a second. If necessary, you can
help with this by gently squeezing his upper and lower eyelids together.
o Do not put eyedrops or ointments directly into the tear duct. That’s the
small pore on the edge of the lower eyelid nearest the nose.
o Wash your hands when you are done.
Eardrops
Eardrops are put directly into the ear canal, where they help to treat infections,
relieve pain or dissolve wax.
How to give them
Get the medication you need, and some cotton swabs or Q-tips. Warm the
medication by rubbing the tube or bottle between your hands or by putting it in
warm water for a few minutes.
o Wash your hands.
o Ask your friend to lie flat, on his back and turn his head so the ear you need
to treat is facing upwards. You need to get at the ear canal easily. For a
child younger than three, gently pull the earlobe down and toward the back.
For anyone older, pull the side of the ear up and back.
o If there is any discharge in the ear canal, gently wipe it out with a cotton
swab. Do not push the swab into the ear canal.
o Squeeze the prescribed number of drops directly into the ear canal. Do not
let the dropper touch the ear canal.
116 l MEDICATIONS
o Ask your friend to stay still for about ten minutes; you can then treat the
other ear.
o Wash your hands when you are finished.
Suppositories
A suppository is a medication moulded into a small solid shape that can be put
into the rectum or vagina. The drug dissolves and is absorbed into the
bloodstream through the rectal or vaginal lining. This route is a useful
alternative when medications cannot be given orally.
•
How to give them
Suppositories are most often used to relieve pain, constipation, nausea,
vomiting or fever, or to treat infection.
Most suppositories are kept in the refrigerator. But you shouldn’t use one right
out of the fridge; it will be cold, and that could be uncomfortable for your
friend. Let it warm up first. To give a suppository, you will need latex gloves
and some lubricant. Collect everything you need.
o Wash your hands.
o Help your friend get into a position that will make it easy to insert the
suppository. For a rectal suppository, the best position is lying on the side,
with the upper leg bent forward. For a vaginal suppository, it may be more
comfortable for your friend to lie on his back with his knees pulled up and
spread apart.
o Put on the gloves, lubricate the suppository and tell your friend what you
are doing. Make sure he is ready before you insert the suppository.
If it is a rectal suppository, ask your friend to take a deep breath and try to
relax the muscles around the anus. (Slow, rhythmic deep breathing will help to
relax muscles.) Spread the buttocks with one hand to expose the anus. Then,
with the other hand, slide the suppository inside about two inches. This may
give your friend the urge to defecate. Ask him to hold on: the suppository
needs about ten to fifteen minutes to dissolve.
If it is a vaginal suppository, ask your friend to urinate first. Spread the lips
of the vagina with one hand. Use the forefinger of your other hand to insert the
suppository about two inches into the vagina. Use a sanitary pad for any
drainage or discharge.
o Ask your friend to lie still for ten to fifteen minutes while the suppository
dissolves.
o When you are finished, throw away your gloves and wash your hands.
MEDICATIONS l 117
Topical (Skin)
Medications
Topical medications, usually in the form of creams or ointments, are applied
directly to the skin. They act where they are applied, to treat itching, rashes,
irritation or burns, or to fight infection. But they are also absorbed through the
skin into the bloodstream, so they can affect the entire body.
Some topical medications are used when a drug needs to be absorbed over a
long period of time. These medications come in patches, which are applied
directly to the skin and left there for a prescribed period of time. A new patch
should never be applied before the first patch is removed.
Some people may be allergic to some topical medications. When a topical
cream is used for the first time, try a little bit on a small spot to see if it causes
a reaction, such as redness or swelling. Sometimes a smaller dose may help.
This does not mean using less of the cream, but getting a new prescription that
has less of the drug in it. The actual amount of drug in a cream or ointment
may be very small, maybe only one or two percent. But even small differences
can have a big effect.
Because they can be absorbed through the skin, you should always wear
latex gloves when applying topical medications. A drug that is meant to help
your friend may not be good for you.
How to give them
o Wash your hands and put on gloves.
o There may be excess medication on the skin from a previous application.
Sometimes this should be wiped away before you apply the next dose. Use
a clean tissue, then change your gloves before putting on the new
medication.
o Rub on the cream or ointment using smooth, gentle strokes in the direction
of hair growth. Make sure to put the cream only where it’s supposed to go.
Some topical medications can irritate skin that doesn’t need to be treated
with the drug.
o Try to keep the medication off clothes or bedding. Some creams will stain
fabrics.
o When you are done, remove your gloves, throw them away and wash your
hands thoroughly.
Inhalants
Inhalants are medications breathed directly into the lungs. They can be given
with hand-held inhalers (the puffers some people use to relieve an asthma
attack) or with special vaporizing machines called nebulizers. Many people
118 l MEDICATIONS
with AIDS will know about nebulizers because they have received aerosolized
pentamidine, a drug commonly used to prevent PCP pneumonia.
Drugs given by inhalation are absorbed almost right away in the lungs, and
can work quickly. But some inhalant drugs have serious side effects. They
should be used only as directed.
How to give them
If your friend is using a nebulizer to take an inhalant drug and needs your help,
make sure you understand how the machine works. (A nurse can show you.)
To use a hand-held inhaler, your friend must be alert and able to understand
and help you.
o When your friend is ready, shake the inhaler, remove the mouthpiece cover
and ask your friend to exhale.
o Hold the inhaler with the tube pointing upwards, and place the mouthpiece
one or two inches away from your friend’s mouth.
o With his mouth wide open, ask your friend to take a deep breath in while
you push down quickly on the inhaler tube. This shoots a mist of the drug
into the lungs with each inhaled breath. Repeat as directed in the
instructions.
o Replace the mouthpiece cover and put the inhaler away.
Injectables
How to give them
Injectable drugs are given by injection using a needle and syringe. Injections
are given at different places on the body, depending on the drug and what it is
meant to do. The drug is absorbed into the bloodstream from the muscle or fat
tissues where the injection is done. Injections are used when drugs cannot be
taken by mouth, when a particular drug is only available in an injection form
or when the drug has to get into the bloodstream fast.
In most cases, injections will be given by a doctor or nurse. But your friend
may need injections often, or when a medical professional is not there.
You can learn how to give injections correctly — but the point is, you must
learn. Never give an injection unless you have been taught how to do it.
You must be confident that you know what you are doing, and your friend
must share your confidence. If you’re not confident, you risk injuring the trust
you and your friend share. You could injure your friend with a bad injection or
injure yourself by accidentally sticking yourself with the needle.
The safest way to learn how to give an injection is to have a doctor, pharmacist
or nurse teach you. Nurses are generally the best bet. They have the most
MEDICATIONS l 119
experience in giving injections. If you have to give injections, talk with the
nurse about it, and make time to learn how. Also, make sure you read about
infection control in Section 4. This section will tell you about the safe storage,
handling and disposal of needles.
Some injectable medications are given through a small tube which is
connected to a butterfly needle that is inserted just below the skin and left in
place. This method allows you to give the injectable drug without having to
prick your friend with a needle each time the drug is due. A nurse will insert
these types of needles and change them every few days. In some cases the
tubing is connected to a small portable pump that sits inside a carrying case
with a shoulder strap. Pain medication, for example, can be given this way. On
some pumps, there is a button your friend can push to give himself a limited
amount of extra medication when the pain breaks through. These special
pumps are programmed and monitored by a nurse.
Intravenous
Medications
Intravenous (IV) medications are given directly into the bloodstream, using a
needle or a catheter (a tiny tube) that is put into a vein and left there. The
needle or catheter is attached to an IV set-up — a longer tube leading to a
hanging plastic bag that holds the medication. There may be special ports
along the tubing where other drugs can be injected into the IV tube. An IV
set-up might include a small electronic pump to monitor and control the flow
of the drug.
An intravenous set-up is used when medications must get into the bloodstream
fast, when a large amount of medication is needed, or to avoid repeated
injections. IV set-ups can also be used to give people fluids, extra nutrition or
blood transfusions.
You will not have to know how to connect your friend to an intravenous
set-up. A doctor or nurse must do this, and must check the set-up regularly to
make sure everything is working. You may need to know how to tell when an
IV bag is running out and how to change it. A nurse can give you instructions
on this procedure. Mostly, you will need to check that your friend is
comfortable.
The place on the body (usually an arm) where an IV needle or catheter goes
into a vein can get irritated, so this area should be securely covered by a sterile
dressing to keep it clean and to make sure that movement doesn’t disturb the
tube. Check for swelling, redness or other signs of infection frequently. Let the
nurse know if anything looks wrong. The needle or catheter may have to be
put in somewhere else.
120 l MEDICATIONS
Movement can cause an IV tube to get tangled around an arm or leg. This may
be uncomfortable and frightening. If it happens, calm your friend and gently
help him get untangled and comfortably settled again.
If an electronic pump is attached to your friend’s IV set-up, it may sometimes
beep or buzz. This can be alarming; it sounds like something is wrong. Make
sure you know what these sounds mean so you can reassure your friend about
them, and so you can respond to the machine’s signal. A nurse can explain all
this to you.
When you bathe your friend, make sure the dressing used to protect the IV
needle or catheter is well covered with either Saran Wrap® or a plastic bag.
It’s important to keep the dressing dry.
Some people with AIDS have had a special IV catheter surgically implanted
into a large vein through the chest wall. These devices are used for specific
reasons and must be treated with great care. Either a portion of the catheter
will extend out of the chest wall (Hickman catheter) or a small injection port
will be left under the skin (Portacath). In either case, the catheter or port site
must be kept very clean. Only nurses or people who have been specially
trained can give these kinds of medications.
n
The effects of drugs
Drugs have many possible effects, both physical and emotional. You should
always watch for any effects medications have on your friend, and record
significant effects on the medication chart.
Desired Action
Side Effects
The desired action of a drug is the normal, predictable effect it is supposed to
have. But other factors about us or our environment may affect the desired
action. For example, when we take aspirin for a headache, the headache is
supposed to go away. But if I am working a jackhammer and have an ulcer,
aspirin may not be enough to get rid of my headache, and it may upset my
stomach. The most important thing to remember about desired action is that
different people may respond differently to the same drug.
Many drugs will cause effects other than their desired effect. As with desired
action, side effects can differ from person to person. The side effects of some
drugs are very common, but can be reduced with other drugs or with non-drug
therapies. Some drugs are used especially for their side effects. For example,
Scopolamine is an anti-nausea drug with a side effect of drying up excess
secretions.
MEDICATIONS l 121
Side effects may be minor, or they may be serious enough that they outweigh
the benefit of the drug. Make sure you always record side effects of any
drug on the medication chart and report them to the doctor or nurse.
They will decide whether to stop the drug, reduce its dose or replace it with
something else.
Toxic Effects
Prolonged use of a drug at high doses can have toxic effects. Usually the liver
and kidneys help clean drugs out of the body, but when they are not working
well a drug may build up in the body. Too much of any foreign chemical in the
body can become poisonous and can sometimes cause death.
Drugs that are particularly toxic, such as those used in chemotherapy for
cancer, are monitored by regular blood tests that show the level of drug in the
body. These tests can tell if the dose of a drug should be reduced or increased.
It is not uncommon for people who are dying to lose a lot of weight in a short
period of time. Decreases in body weight can shorten the time it takes for a
drug to reach toxic levels in the body or increase the drug’s side effects. Watch
for weight loss in your friend and report this change to the doctor. It may be
necessary for the doctor to reduce the dose of the drug, matching it to your
friend’s body weight.
Drug Reactions
Some drugs react with each other, enhancing or cancelling out desired effects
or creating serious side effects called drug reactions.
People with HIV and AIDS often take many different drugs at the same time.
The doctor must always know about all the drugs your friend is taking.
You should never give drugs the doctor has not prescribed without the doctor’s
approval. If more than one doctor is treating your friend, make sure all of them
have a list of all the drugs being used.
Allergic
Reactions
We can be allergic to many things, including some drugs. People with AIDS
may be particularly prone to allergic reactions because their immune systems
are weakened. Substances that might not have bothered them when they were
completely healthy might now have serious effects.
Allergic reactions to drugs can vary, depending on the person and the drug.
Mild reactions include itchiness and redness of the skin, swelling of the nasal
mucous membranes (making a person feel stuffed up) and nasal drip. More
severe reactions include rashes or hives. The most serious allergic reaction is
called an anaphylactic reaction. This is the sudden swelling and constriction
of the air passages in the throat. Anaphylactic reaction is very dangerous. Air
122 l MEDICATIONS
to the lungs may be choked off completely, and blood pressure may drop,
causing anaphylactic shock. Special drugs can correct this, but a fast trip to a
hospital emergency room will be necessary (see Section 15).
Allergic reactions to drugs can happen very quickly. The moment you
suspect an allergic reaction, call the doctor. If you suspect an anaphylactic
reaction, call an ambulance first. A few minutes can make all the difference.
Where to Find
Out More
A detailed list of all the medications used in palliative care would take
volumes. You do not need to know about all of these drugs. But you may want
to find out more about the ones your friend is taking.
•
•
Section 7 gives you more details about pain-relieving drugs.
•
Section 19 (Further Reading & Resources) tells you where to get more
information about these and other medications.
Section 13 (AIDS-related Illnesses) includes a list of the most common
medications currently being used to control HIV infection and to treat the
diseases people with HIV most often get.
Your best source of information about medications is your pharmacist. Few
people realize how helpful pharmacists can be, and how much more they
know about drugs and drug reactions than some doctors or nurses.
As a care team, gather the information you need and record it in the care team
log or in notes you can attach to the most appropriate sections of this manual.
Share what you find out. You will be making the care team stronger; and that
will help the team provide the best possible care and quality of life for your
friend.
References
Project Inform. The HIV Drug Book. New York: Pocket Books. 1995.
DATE
1
AM
2
3
4
5
6
(Drug, dose, time, route, special instructions, side effects, problems)
MEDICATION RECORD FOR
7
8
9
10 11 12
PM
1
2
3
4
5
6
7
8
9
10 11 12
MEDICATIONS l 123
124 l MEDICATIONS
DATE
1
AM
2
3
4
5
6
7
8
9
10 11 12
PM
1
2
3
4
5
6
7
8
9
10 11 12
MEDICATIONS l 125
DATE
1
AM
2
3
4
5
6
7
8
9
10 11 12
PM
1
2
3
4
5
6
7
8
9
10 11 12
126 l MEDICATIONS
SECTION 9 l 127
Body Mechanics:
Lifts and Transfers
n
Introduction
The term “body mechanics” refers to the coordinated effort of muscles, bones
and the nervous system to maintain balance, posture and body alignment
during movement (lifting, bending, walking). In order to help prevent injury, it
is important to pay attention to how these systems work.
The most common injuries associated with hands-on care are back injuries,
particularly the lower back. There are many factors related to these injuries,
but the two most common causes are poor use of body mechanics and a belief
that care for the caregiver comes second to care for others.
This section provides you with some direction in how to lift and transfer your
friend safely. You can also benefit from the expertise of physical and
occupational therapists, who are skilled in the theory and use of body
mechanics. Seek their advice and have them teach you and other caregivers
about lifting and transferring.
This section covers:
•
•
•
•
•
•
The basics of body mechanics
Moving someone in bed
Moving someone from bed to chair, chair to chair, and so on
Walking
Dealing with falls
Fire safety
The importance of using proper body mechanics when lifting or transferring
someone or something cannot be stressed enough. There is no room for taking
risks that could result in injury. You must consider your own safety before
attempting to lift or move your friend.
128 l BODY MECHANICS: LIFTS AND TRANSFERS
n
Basic body mechanics
There are two important principles associated with understanding the basics of
body mechanics: know your body, and take your time.
Know Your
Body
The first and most important aspect of body mechanics is knowing your own
body and how it works with and against the force of gravity. You are the best
judge of your body’s capabilities. Muscles and bones work together every day
to support and create movement. Listen to your body and respect its
limitations.
There are three basic points you need to understand: centre of gravity, line of
balance and base of support.
•
Centre of gravity: This point is located at the middle of your body, in the
pelvic region.
•
Line of gravity: This is an imaginary line, from head to foot, that divides
your body into two equal parts.
•
Base of support: This is the space between your feet that bears the weight
of your body.
Centre
of gravity
Centre
of gravity
Line
of gravity
Line
of gravity
Figure 9.1: Correct Body Alignment When Standing
BODY MECHANICS: LIFTS AND TRANSFERS l 129
o When moving or lifting a heavy object, you can reduce the strain on your
back by keeping your line of balance close to your centre of gravity. You
can do this by bending your knees instead of your back. This keeps you
from leaning forward or backward. (Leaning moves your line of balance
away from your centre of gravity.)
o Open the distance between your feet to broaden your base of support. This
distributes the extra weight you’re bearing or lifting and decreases the
strain on your back muscles.
o Get close to the object you are moving. Make sure your centre of gravity is
as close to the object as possible. This keeps your centre of gravity in your
line of balance, and gives you the greatest potential for using muscle
power.
o Use your arm and leg muscles to do the work. These are nature’s
mechanical levers, and if you use them you can prevent unnecessary back
injuries. When you’re using your arms, keep the load close to your body:
short levers require the least amount of work. Your greatest lift power
comes with pushing rather than pulling. Use your legs and arms, not your
back, to move the object.
Take Your Time
Never rush into moving or lifting someone or something. Always take a few
moments to think about the movement before you start. Look at where you are
and where you want to go. Imagine the movement before you proceed.
o Never attempt a lift or transfer that you think you can’t do alone. Two
people are almost always better than one. If you know your back is weak or
injured, do not attempt to lift or transfer. You must think of yourself and
your back first.
o Make sure everyone involved in the lift or transfer understands the
direction and purpose of the movement. Talk it out step by step. Everyone
should count to three before the movement begins, so everyone moves at
the same time.
o Make sure any obstacles or barriers are moved out of the way. You want a
clear path during the move. Your destination should be in clear view.
o Turn with your feet, pivot or step, and avoid twisting your body.
o Always do the least amount of work to achieve your move. Have your
friend help you as much as possible.
o Stick to routines that are safe and have worked in the past. This will help
reduce the anxiety your friend may have if she is afraid of falling or being
injured.
o If the load starts to slip, go with it gently. Don’t try to save the load by
pulling on it or holding it up. If the load is your friend, let her gently fall to
the floor. Bend your knees, keep your back straight and go with the fall,
protecting your friend’s head at all times.
o If you injure yourself, seek professional help right away. Don’t wait until it
is convenient or the injury is so painful you can no longer function properly.
Back injuries need attention. The longer you wait to take care of yourself,
the greater the potential for chronic back problems.
n
Preparation
Moving someone in bed
Make sure the bed is secure and won’t move around while you are lifting or
transferring. If the bed has wheels, check to make sure the brakes are on.
o If you can, raise the bed to about your waist level. If the bed cannot be
raised, remember to bend your knees, not your back.
o If the bed has side rails, lower the side rail closest to you.
o Fold an extra sheet in half twice, to use as a turning sheet. Place the sheet
under your friend so it goes from mid-thigh to shoulder.
o Before any move, check to see that any tubes or urine bags will not be pulled
with the move.
Using One
Person
If you are moving your friend up in bed, place a pillow against the headboard.
o Face the direction of the move. Your feet should be wide apart, toes pointing
in the direction of the move. You can also place one knee on the bed to get
close to your friend.
o Place one hand flat under her shoulders, the other hand flat under her thighs.
o Have your friend bend her knees and tuck her chin on her chest.
o On the count of three, shift your weight from the back foot and knee to the
front foot, and as you shift, move your friend up in bed.
With a turning sheet - one person:
Position yourself at the head of the bed facing downward, with the knee closest
to the bed in line with your friend’s head.
o Grasp the turning sheet under her shoulders.
o Ask your friend to bend her knees and tuck in her chin.
o On the count of three, shift your weight from your knee to your back leg.
Your friend’s head and shoulders will come to rest on your thigh near the
top of the bed.
Using Two
People
Both people should face the direction of the move. You can be on the same
side of the bed, or on opposite sides.
o If you are on opposite sides of the bed: each person places one hand at
shoulder level and the other hand at waist level. If both people are on the
same side of the bed: one person places one hand at shoulder level and the
second hand at waist level; the second person places one hand at the waist
and the other at the hips.
o Ask your friend to bend her knees and tuck in her chin. On the count of
three, both care team members shift weight from back foot and knee to
front foot.
With a turning sheet — two people:
Facing the direction of the move, stand on opposite sides of the bed.
o Grasp the turning sheet close to your friend at her shoulders and hips.
o Ask your friend to bend her knees and tuck in her chin. At the count of
three, caregivers shift their weight from back foot and knee to front foot.
Figure 9.2: Moving Someone in Bed: Two People
Reprinted from Caring for family and community: personal care resource manual by Victoria AIDS Respite Care Society.
(1994), British Columbia: Victoria Respite Care Society Victoria.
Push and turn
to side position:
one person
o Help your friend move from the centre of the bed to one side. If she wants
to face to the right, she should move to the left side of the bed. This will
ensure that she ends up in the centre of the bed.
o Facing the bed on the side closest to your friend, spread your feet wide
apart with one foot ahead of the other. Place one hand under your friend’s
shoulder and the other at her hip (or grasp the turning sheet at the shoulder
and hip).
o Have your friend bend her knee closest to you and ask her to cross her
arms on her chest.
o On the count of three, shift your body weight from the back leg and knee to
the front leg, and as you do, gently push your friend onto her side. Place a
pillow behind her back to support the side lying position. Move to the other
side of the bed and make sure her bottom shoulder is pulled out a bit, to
maintain blood flow and prevent cramping. (See Section 5, “Positioning
someone in bed.”)
Sitting up on
the side of the
bed: one
person
o With the bed flat, help your friend move to the side of the bed where she
wants to sit.
o If you are using a hospital bed, raise the head of the bed or prop up your
friend with pillows.
o Face your friend and place one knee on the bed. This should be the knee
closest to her head.
o Lean forward, reach across your friend and place your hand (the one
closest to the foot of the bed) on her hip. Place your other hand behind both
shoulders.
o Gently rock your friend while counting to three, then pivot her to a sitting
position by lowering her legs over the side of the bed and lifting her head
and shoulders.
o Stay close to your friend, using your knees against her to prevent slipping.
o Take a few moments to let your friend adjust to the sitting position. Some
people might feel dizzy after sitting up.
n
Preparation
Moving from bed to chair or from one
chair to another
Have all your equipment ready for the transfer. Bed brakes are on and the
height of the bed is lowered to that of the chair (when possible). Place the chair
at the head of the bed, parallel to the bed, facing the foot.
o If using a wheelchair, make sure the brakes are on and (when possible)
remove the armrest and foot pedal close to the bed.
o Have your friend wear nonslip socks or slippers. Check to ensure that tubes
and urine bags will not be pulled with the movement.
o Make sure your own footwear is non-skid to avoid slipping.
Transfer from
bed to chair: one
person
Help your friend sit up with feet hanging over the side of the bed. Make sure
her bottom is as close to the side of the bed as possible. You want to reduce the
distance between the two positions. When possible, have your friend’s feet
resting on the floor.
o Stand in front of your friend, with one foot between her feet. Use your feet
or knees to block your friend’s feet and knees, to prevent slipping.
o With your back straight, bend your knees and lean toward your friend. Place
your arms around her lower back or you can grasp her waistband, or use a
turning sheet or towel under her hips as a transfer belt.
o Have your friend wrap her arms around your back and trunk, not around
your neck. If your friend is too weak to grasp, place her arms over your
shoulders. Her head should rest on your far shoulder so that you have a clear
view of the chair and the path of movement.
o Gently rock for momentum and count to three. In one movement, stand up
just enough to lift your friend off the bed, pivot toward the chair, and, while
bending your knees, gently lower your friend into the chair.
o Replace armrest and foot pedal.
Transfer from
chair to chair or
chair to bed:
one person
You will use the same procedure as described for a transfer from bed to chair.
Keep in mind the following:
o Chairs should be placed at right angles to each other. This may be difficult
when you’re transferring someone to a toilet, so make sure you have enough
room to pivot your friend safely.
o Minimize the distance between the two positions. Make sure your friend’s
bottom is at the edge of the chair with her feet as far back (under her
bottom) as possible.
o When moving from chair to bed, make sure you lower the height of the bed,
and check to see that all brakes are on.
Transfer with
front-and-back
lift: two persons
When transferring from bed to chair, chair to chair, or chair to bed, you may
want to use a two-person front-and-back lift.
o Designate one person to coordinate the transfer. Prepare equipment and
your friend as described above.
o One person stands behind your friend, with arms wrapped under the
armpits, grasping your friend’s forearms that are crossed on her chest. The
other person squats, with back straight, close to your friend, with one arm
under her thighs and the other under her lower legs. Hold her legs close to
her body.
o On the count of three, and together, the upper lifter moves the upper body
and the lower lifter moves the legs.
You can use one of these methods to help your friend in and out of a bathtub or
car. Think about the move before you do it, and make sure everyone involved
is clear about the move. Bathtubs are very slippery and should be set up with
hand grips with the help of an occupational therapist. Have the therapist visit
the home and teach you how to move safely in and out of the bathroom.
Moving from
Bed to Stretcher
It may take three people to safely perform this move.
The stretcher should be placed at right angles to the end of the bed. Make sure
the brakes are on for both the bed and the stretcher. The height of the stretcher
should be the same as the height of the bed or at about the height of the lifters’
waists.
o Remove any obstacles between the bed and the stretcher. You must have a
clear path to perform this transfer, as you will not be able to see your feet.
o Check to see that any tubes will be able to move with you.
o The tallest person stands at your friend’s shoulders, the second tallest at the
waist and the third person at the lower limbs. Each person takes a wide
stance, facing the bed.
o Each person places their hands and arms well under your friend’s body.
o Position your friend on the side of the bed with her arms crossed on her
chest and her chin tucked in.
o The tallest person leads the movement, but all count together.
o On the count, lifters rock your friend toward their shoulders, bringing her
onto her side wrapped in the lifters’ arms.
o Shifting weight from front to back leg, lifters take one step back, turn and
walk toward the stretcher.
o On the count of three, all lifters bend their knees and lower your friend onto
the stretcher.
Note
Another option is to place the bed and stretcher side by side and touching. Two
or three people get on the far side of the stretcher, and with a draw sheet, gently
pull your friend onto the stretcher on the count of three while remembering the
principles of body mechanics.
Figure 9.3: Moving from Bed to Stretcher
Reprinted from Fundamentals of Nursing Care by LuVerne Wolff et al. (1983) Philadelphia: J.B. Lippincott Company.
n
Falls to the floor
Falls may occur as the result of a transfer. Also, your friend might try to move
on her own when she is too weak, and fall as a result.
When Your
Friend can
Help
•
If your friend begins to fall while you are transferring her, do not resist the
fall. Go with it gently, and protect both of you from injury. Make sure to
protect your friend’s head from hitting the floor.
•
Once you reach the floor, take a few moments to calm down. Reassure
your friend and check to see that she is okay.
•
When your friend is ready, prepare to assist her into the bed or chair. It is
usually easier to go from the floor to a chair first, and then from the chair
to the bed.
•
If you find your friend on the floor, check first to see she is okay. If you
suspect she is hurt, call the doctor or an ambulance.
Method 1:
Bring a chair to where your friend is on the floor. Place the chair so that an
armrest is in your friend’s reach, then kneel beside her.
o Supporting her hips, help your friend push herself — using the chair
armrest for support — into a kneeling position, facing the chair.
o Help her to place her forearms on the chair. Then lift one of her knees and
place one foot on the floor.
o On the count of three, help your friend to push up, stand and pivot into the
chair while holding onto the armrests.
o Have your friend rest and check to see that she is okay.
Method 2:
Place a low stool or stack of cushions in front of a chair.
o Kneel to the side of your friend, facing her.
o Gently position your friend so her back is facing the stool and chair.
o Help your friend sit up. Place her hands on the stool and bend her knees.
o With a waistband, belt or towel, and on the count, lift your friend’s hips
onto the stool. Ask her to push up with her hands as you lift.
o Repeat this movement into the chair. Remember to keep your back straight
and to use the muscle power of your legs.
When Your
Friend Cannot
Help
You will probably need two people to get your friend back into a chair or into
bed.
o Use the front-and-back lift (page 134), paying special attention to bending
your knees and using your legs.
o If you are alone and cannot lift your friend by yourself, call a care team
member or the fire department to get some help.
o Until help comes, stay with your friend and keep her comfortable with a
blanket and pillows.
n
Walking
Although your friend may be able to bear weight and walk, she may also need
assistance so she doesn’t fall. Some people will be able to use a cane or
walking device; others will simply need assistance and support.
o Make sure all obstacles are out of your path. Have a chair nearby should
your friend need a rest station as she walks from one room to another.
Make sure she is wearing nonskid slippers or shoes.
o Always provide your assistance on her weaker side. You want her to use
her stronger side as much as possible.
o If she is using a cane or walking device, make sure your friend holds the
cane on the stronger side. This will keep the weight on the side that can
support it.
o To help your friend to walk, stand beside and slightly behind her, facing the
same direction she is. When necessary, remind your friend to stand tall and
to look ahead, not down at the floor.
o Your arm closest to your friend can be used to support her back at the
waist. Your other hand can stabilize her shoulder or armpit for extra
support.
o Avoid having your friend hold your hand or wrap herself around you. This
will make it difficult for you to support her should her knees buckle.
o If you have any doubt about assisting your friend alone, get another person
to help you. One person stands on either side of your friend, supporting her
as described above.
n
Fire safety
In the event of a fire, your main concern is to move everyone away from
danger. Stay calm, and move quickly and assertively.
o Call the emergency number to alert the fire department. (In many parts of
Canada, the emergency number is 911.)
o If the fire is at the bedside, remove your friend immediately. If there’s a fire
on the bed, smother it with a blanket.
o Once you have moved your friend and know that she is safe, then call the
fire department.
o If oxygen is being used, turn it OFF if you have the opportunity. (Do not
risk going near the fire to turn off oxygen. Oxygen is not flammable, nor
will it explode. It does, however, feed a fire and help it to burn.)
When You Are
Alone
Some people with AIDS are so thin and light that they can be carried, cradled
in your arms or wrapped on your back with their arms over your shoulders.
o When your friend is too heavy to be carried, and if you have no time to
wait for assistance, you will need to drag your friend away from danger.
o Grab a blanket or sheet and place it on the floor beside the bed or the chair.
Or use the bottom sheets on the bed.
o Move your friend to the side of the bed or to the edge of the chair.
o Get behind her, place your arms under her armpits and grab her forearms.
Lower her onto the blanket or bottom sheet, taking care of her head. Her
legs will follow.
o Wrap her in the blanket. Grab the blanket at the shoulders and drag your
friend to safety.
o If necessary, you may have to drag her down a staircase. It will be a bumpy
ride but far better than dealing with burns or smoke inhalation.
o Once you are both safe, stay with your friend until help arrives.
Figure 9.4: Using a Blanket to Move Someone in an Emergency
Reprinted from Le Manuel Johsnon & Johnson des premiers soins by
Stephen N. Rosenberg (1985) New York: Warner Books.
Reference
Fran Caruth and Flora Thompson. Transfer and Lifting Techniques for Extended Care. Second
Edition. Vancouver: Authors. 1985.
Notes
SECTION 10 l 141
Psychological and
Emotional Concerns
n
Introduction
Living and dying with AIDS involves coping with a wide range of complex
psychological and emotional concerns. Caring for your friend’s psychological
and emotional concerns will be very challenging. Listening and responding to
the concerns of those we care about takes energy and commitment. It also
requires some knowledge about the emotional reactions and responses that are
unique to persons with AIDS. You don’t need to be a psychologist to offer
emotional support to your friend. But you do need to be a good listener.
Offering emotional support also requires a true understanding of your
limitations as a caregiver. Be honest with yourself, and never be ashamed to
ask for help from a health-care professional. You may find yourself with
complicated issues and situations that require special skills or knowledge you
may not have. Suggesting to your friend that he consider speaking with a
counsellor may be much more helpful than trying to cope with something that
is beyond your current abilities.
Understanding the issues that confront people who are dying takes time. You
need to be open and sensitive. When listening to your friend’s concerns, be
yourself and stay relaxed. You will be surprised with how much you can help
by offering emotional support.
•
•
•
•
•
n
Loss and the experience of loss
Common emotional responses to loss
Diverse perspectives and experiences
The experience of hope
Euthanasia and assisted suicide
Loss and the experience of loss
Loss is a state of being deprived of or without something we have known and
valued. It’s a natural part of life, and it results from change, either forced,
142 l PSYCHOLOGICAL AND EMOTIONAL CONCERNS
voluntary or involuntary. All of us have experienced loss. Many of these losses
are normal life steps, such as losing baby teeth or graduating from school. With
each loss comes a change, and we must cope with that change.
Some losses are greater than others, and they change our lives so much that we
can’t seem to cope with them. We experience the strong physical and emotional
responses that are characteristic of grief and grieving. Grief is a normal and
expected response to loss. (See Section 17 for a discussion of grief and
grieving.)
Each of us will experience loss in our own way, based on our perceptions of
loss. These perceptions are based on many things, such as our values, beliefs
and attitudes, experiences with loss and grieving, and the meaning we have
given to what was lost. When we’re coping with difficult losses, it is important
to understand our own history of loss. This is especially true with loss
experienced as a result of death. Whatever the kinds of loss, how we responded
in the past will have some influence on how we cope with it in the future.
n
Common emotional responses to loss
Each individual will find his own way of coping with loss. For example, grief
and mourning are natural coping processes that help us adapt to the resulting
changes in our lives. Very often a person’s response to loss will be mixed with
reactions to the illness of AIDS and to the anticipation of dying and death. The
most common of these emotional responses is discussed below.
Fear
Fear is an emotional response to something we recognize as a threat or danger.
Fear can also be associated with something we do not understand: the unknown.
AIDS has brought us close to one of the greatest fears of all, fear of death. Most
people who are dying are afraid to die alone and abandoned, disfigured or in
pain.
Whatever the source, fear is a powerful motivator. It can move us to react or
respond to what is frightening. It can also push us away, forcing us to withdraw
from the source of our fear and this can be very isolating. In most cases,
however, fear brings anxiety, which in turn can leave a person feeling out of
control.
Anxiety
Anxiety is an uncomfortable feeling of tension or dread that occurs when we
face a nonspecific threat to our physical or psychological state. Feelings of
anxiety can be mild, moderate or severe. If not controlled, severe anxiety can
lead to panic, and this can be contagious.
PSYCHOLOGICAL AND EMOTIONAL CONCERNS l 143
People dying with AIDS are faced with many uncertainties that can result in
anxiety. Fears associated with illness, pain, discomfort and death are often
anxiety-producing. You may even feel anxious when providing care to your
friend. “Am I doing the right thing?” “Will I hurt him?” Or you might be
anxious about being alone with your friend at the time of death.
Knowing what works to relieve your friend’s anxiety is important. Ask him
what he usually does to make his anxiety go away. Try using relaxation
techniques, such as deep breathing or mental imagery. Some people may need
medication to help with their anxiety. Check with your friend’s doctor to see if
this is appropriate.
Guilt
Guilt is a common response among people with HIV infection. It is common for
a person to blame himself for getting infected or to feel guilty about infecting
others. People may blame themselves for promiscuous sexual behaviour, for not
controlling their sexual needs, or for using intravenous drugs, among other
things.
Because of Western society’s negative view of homosexuality, many gay men
and lesbians will develop feelings of guilt and self-hatred for being homosexual.
Some may associate punishment with this guilt: “I’m being punished because
I’m gay.” “I have sinned against God so I deserve this.” These feelings may be
so intense that the person will try to relieve them by hurting himself.
Many people dying with AIDS know their advancing illness will make them
quite debilitated. They feel guilty about being a burden to their loved ones.
Given traditional roles, women with AIDS may feel very guilty about being
“bad” mothers, or may fear losing custody of their children.
Guilt eats away at a person’s self-esteem, at their will to live and at their ability
to feel worthy of relationships. It is important to give all the support you can.
Focus on your friend’s abilities, promote his independence and praise his
accomplishments.
Denial
Denial is a protective defense mechanism characterized by a refusal to
acknowledge any thoughts, feelings or concerns about a difficult or painful
situation. Denial allows us to maintain control, so we can reduce our anxiety and
emotional pain and just cope with our problems.
Avoid confronting your friend with his denial head-on. This will only increase
his anxiety, and that will increase the need for denial. Instead, help your friend
to verbalize his feelings. The aim is to gently lead your friend to an awareness of
the emotions that triggered the denial.
Avoid reinforcing the denial. Agree only with the part of the denial that is
based in reality. Some people will refuse to admit they are dying, that they are
sick or that they have AIDS. These will be difficult times for you. But you
must accept that you are not responsible for making your friend accept his
dying or his diagnosis. (Few people will deny the truth all the way from
diagnosis to death.)
Anger
Anger is one of the most common emotional responses to AIDS and to the
prospect of death. The fact that a life has been drastically altered by a life
limiting prognosis is a good reason to be angry.
People with AIDS may feel anger at: the powerlessness and hopelessness that
accompany severe illness when there is no cure; the cumulative impact of loss;
the health-care system; and the negative reactions of society, family and
friends. (Besides many other things!)
Anger can be expressed in many ways, for example: abusive language or
aggressive behaviour; continual expression of negative feelings toward
selected individuals; acting out; or refusing care, food or medications.
Anger may be directed at anyone or everyone. Some people with AIDS are
angry at themselves: angry that they did not practice safer sex; angry at their
own sexuality; angry at their addiction. When you are the target of your
friend’s anger, you may feel unappreciated or rejected. Expect and accept the
anger, and try to understand where it is coming from. It is separate from your
care of your friend. The more you can tolerate your friend’s emotions without
feeling the need to fix them, the more effective you will be as a listener and
friend.
Try to tolerate your friend’s anger, but be sure to acknowledge when he has
crossed the line into abuse. Abuse may be words or actions that are
unreasonably offensive or hurtful. You can expect to take a lot as a caregiver,
but no one deserves abuse in any form.
Depression
Depression is often a response to situations of profound loss and grief. The
multiple losses of AIDS may result in cumulative grief, depleting a person’s
psychological stamina and making him vulnerable to other emotional
responses, such as anger and guilt. When a person turns his anger and guilt
inward, he gets depressed. This kind of depression is called situational and is
characterized by sadness, pessimism, despondence, hopelessness and
emptiness.
Clinical depression refers to a more complicated form of depression that
usually requires varying degrees of intervention, ranging from medication to
intensive psychotherapy. Situational depressions that are left unattended may
become further complicated and turn into clinical depression.
We all know what it’s like to feel “down in the dumps.” Some of us have lived
with depression. Often what helps most is to talk about what is making us feel
depressed. Encourage your friend to talk about his feelings, both negative and
positive. All you have to do is listen. If you find what you’re hearing is too
heavy for you to handle, tell your friend and recommend that you refer the
conversation to someone with experience, like his doctor or a social worker.
n
Multiple psychological concerns
Some people with AIDS are not only dealing with the emotional responses
discussed above, but with other multiple concerns. Some of these additional
concerns might include: a pre-existing mental health issue, an addiction,
behavioural problems related to an abusive past, etc. Whatever these concerns,
they will likely complicate your friend’s ability to cope with the psychological
and emotional concerns that come with AIDS and dying. Your friend may
need professional help to deal with this situation.
When dealing with behaviours or emotional responses that upset you, it will be
important to examine why you feel this way. Likewise, you need to explore
and understand how your attitudes might influence your feelings for your
friend and about your caregiving. When talking to your friend about your
concerns, try to convey them in a genuine and nonjudgmental way. In doing
so, you will show your friend that you respect and value him. This will help to
build trust, which is important when dealing with multiple psychological and
emotional concerns.
n
Diverse perspectives and experiences
The external, physical expression of human emotion is relatively common
among people from the same culture. For example, it’s usually quite simple for
us to note whether a person is happy or sad by looking at their facial
expression. We’re not saying you should “judge a book by its cover.” In fact,
we caution you to appreciate that while the “outside” may look familiar,
what’s going on inside varies greatly from one person to the next.
This is true for the different people who may be involved in your friend’s life
and care team. For example, a partner or spouse’s experience with the dying
process will be different from that of the person in care. The same can be said
for your friend’s family members, friends, colleagues at work, care team
volunteers, etc. The key message here is that dealing with the psychological
and emotional concerns of the dying means being open to a diverse range of
perspectives and experiences. Tables 10.1 and 10.2 list some of the more common
psycho-social considerations for HIV-positive adults, their families and friends.
Table 10.1: Psycho-social Considerations For HIV+ Adults
Age
n HIV/AIDS affects people of all ages, but many are under the age of 30:
l not well equipped to deal with crises due to limited life experience and maturity
l unable to get established in a career, perhaps still in school
l regret being unable to realize certain goals
l may have young children, and face leaving then without a parent
Stigmatization
n great stigma associated with HIV/AIDS can be very debilitating:
l moral judgments are often made on person’s lifestyle, once it is revealed that he/she
has AIDS
l people living with HIV/AIDS often reluctant to seek help until very sick
l frequently prevents development of close nurturing relationships
Disclosure
n persons living with HIV/AIDS have made various choices regarding disclosure:
l many have not wanted to be associated with the stigma, and some heterosexuals fear
being associated with gay lifestyle
l fears may include: loss of job or business, isolation for a child at school, social
loneliness
l for those who have disclosed publicly, personal tensions and reactions to dying process
are impacted by repercussions from public exposure
l for those who are homosexual or bisexual, disclosure of HIV status may evoke
memories of any bad experience they may have had with disclosing their sexual
orientation
Sexuality
n if person is gay, lesbian or bisexual, there may be many issues of acceptance by society
and family of origin:
l may feel shame or guilt
l likely dealing with stigmatization and discrimination
n women are often stigmatized for being sexual. Being HIV+ compounds this
n women with HIV/AIDS are presumed to be sex trade workers, or promiscuous
n HIV+ women who become pregnant face judgment
Intimacy
n contact, sexual or otherwise, is still needed throughout life, especially when ill or dying:
l physical contact, i.e. touching and hugging, is important and life-sustaining for many
l individual may fear passing on virus to someone they love
Roles
n the role a person plays in his/her family or network changes when that person becomes ill
and increasingly dependent on others for care:
l the adult child, once self-sufficient, may require care from family
Socioeconomics
n HIV/AIDS is financially very draining:
l many with HIV/AIDS have little or no economic security and live below the poverty line
l many need help accessing social assistance, drug cards, supportive housing
l if young, may not qualify for CPP disability insurance
l many are unemployed or working in jobs with no insurance
l traditionally, persons with hemophilia have been unable to access life insurance plans
except through work benefits
Mental/cognitive functioning
n many psychological manifestations may be encountered, both HIV related and otherwise:
l impairment is common in latter stages of HIV disease
l includes dementia, delirium, and secondary mood states (depressive syndromes and
hypomania/mania)
Aloneness
n perhaps one of the most profound issues faced by the dying person:
l complicated by stigma and isolation associated with being HIV+, gay, having abused
substances, having been a sex trade worker, having engaged in any sexual activity
Meaning
n stigmatization, isolation and marginalization often result in lack of meaning in life:
l internalizing society’s negative attitudes contributes to loss of meaning
l women who have traditionally viewed themselves as caregivers, and derived meaning
from this role, may lose this significance because of the disease
l many find meaning in past and present relationships
Denial
n may be part of their coping strategy
Losses
n in addition to prospect of losing their own life, there are massive losses: control, body
functions, body image, ability to work, mental functioning, other friends, family
connections, role:
l may feel resentment over perceived/real control in past, i.e. gay men may feel
threatened by homophobic society, sex trade workers may deal with control imposed by
clients, pimps or society
l for persons with hemophilia, introduction of home care permitted much more freedom
and spontaneity. HIV/AIDS threatens loss of newly formed autonomy and portends a
return to dependency on hospital system
Withdrawal
n a process of letting go:
l time to do some internal emotional work
l time for final preparation
l may want to be left alone
l may panic and run away
l may limit contact with loved ones
l not everyone experiences this
Dying
n for those who have focussed on living with hope for a cure, dealing with grief and final
stages of illness is complicated by approaching reality of death:
l may have witnessed deaths of many friends from AIDS
l will it be the same for me?
l may be frightened of death or afraid of the unknown. What should I prepare for/expect?
l fears of pain, disfigurement, dementia, loss of control, dependency, abandonment
l may fear punishment after death for lifestyle or sexual orientation
l what will be a “good death” for me? Am I ready?
l what business must I still take care of?
n may be facing death isolated from sources of support, i.e. traditional religion
n may face prohibitions against practising non-traditional rituals
Reprinted from Module 4: Palliative Care, Mount Sinai Hospital/Casey House Hospice, Toronto, Ontario,
1995.
Table 10.2: Psycho-social Considerations for Family and Friends
Age
n parents are dealing with a child dying ahead of them which is not the “natural order” of life
n friends are experiencing having someone their own age die
Facing living
n parents, family members and friends may themselves be infected
n HIV+ parents and partners may feel guilt at infecting another person, which impacts their
own stress and wellness levels
n for people who knowingly enter a relationship with a person living with HIV/AIDS, the
realities of the illness are usually far more devastating than imagined. The caregiver role is
heavier than anticipated, fears of being left alone and worries about disclosure are strong
n when both parents are HIV+, serious concerns and issues about ongoing care for children
include guardianship, custody, financial planning
n deep feelings of grief for an unborn child may be part of spousal mourning
n may not want to provide structure or discipline out of anticipatory grief for young child or
teen, though these are critical to child’s sense of security
n need to treat person as normally as possible, to demonstrate concern and support,
especially when helping a child deal with the situation at hand
n language barriers may impede access to care and support
n family of choice may conflict with family of origin
n may face prohibitions against practising non-traditional rituals
n may feel guilt/shame from relief that they don’t have the illness
n may envy/resent sick sibling or partner getting more attention
n may exhibit such traits as withdrawal, irritability, school problems or acting out behaviour
Disclosure
n may share information that is not complete but accurate in part
n partner may live secretly with diagnosis or be faced with possible impact on his/her job or
lifestyle
n may be reluctant to tell child of family member’s diagnosis for fear they may disclose to
others. This can have negative repercussions if they accidentally discover they themselves
or a family member are infected.
Stigmatization
n friends may be unfamiliar with HIV and/or irrationally frightened about risk of contagion
n may prevent partner or family from receiving necessary support
Sexuality
n may not be accepting or understanding of person’s sexuality
n may not be accepting of gay or lesbian partner
n may be first time they were aware of person’s sexuality, so they are dealing with that in
addition to the person dying
n if friends/family are gay or bisexual, they may be dealing with similar issues
n may open up whole new aspect in the relationship
Intimacy
n friends and family may have an irrational fear of contagion
n partner and family may need to be encouraged to cuddle and be affectionate
n space, time and privacy must be provided to support intimacy
n partner of person may have been exposed to HIV/AIDS, or person with HIV/AIDS may
already have lost a partner. Issues of sero-positivity re-emerge and death becomes an
uncomfortable reminder of what lies ahead. Re-negotiation of issues within relationships
can be problematic.
Socioecononmics
n financial burden on partner and family can be significant
n may need help to access additional supports at home
n spouse or family member may need to leave work to care for person with HIV/AIDS. Some
families can afford attendant services because of extended health care benefits, but others
cannot.
Roles
n someone may have to take over more of other person’s roles within the family, creating
additional stress caused by the person’s deterioration
n may be thrust into role of informal or primary caregiver and therefore carry a major portion
of stress
n caring for person with HIV/AIDS can put stress on friends and family members’ other roles,
i.e. work
n unaffected children may assume role of caring for another family member at a very young
age.
Aloneness
n parent of partner may feel geographically isolated in his/her caring role
n may anticipate future aloneness
n may be isolated from normal sources of support, (i.e. church, etc.)
Denial
n may fear discussion will create unmanageable anxiety and destroy defences
n may engage in “mutual pretence” wherein everyone knows the person is dying but
pretends he/she will live
n some denial originates from emphasis on “hope” and “fighting spirit” as important for
longevity
n denial may centre around how the person became infected
n too vigorous confrontation of denial can lead to alienation
Losses
n facing loss of partner
n family and friends may experience multiple losses
n refer to section on Grief, Loss and Bereavement
Mental/cognitive functioning
n may need help dealing with person’s depression and/or dementia
Withdrawal
n may feel unloved or rejected
n may feel hurt, sad, angry
n may need to withdraw as a way of separating or because they are not comfortable around
someone who is dying
Issues specific to persons living with hemophilia
n many persons with hemophilia wrestle with the irony that treatment which enabled more
freedom brought life threatening disease, leading to disillusionment, anger and mistrust of
the health care system
n in a single family with multiple individuals with hemophilia, not all may have been exposed
to HIV/AIDS. Each one may deal differently with HIV disease in psycho-social adjustment
and behaviour
n maternal guilt over passing genetic disorder is compounded for mothers who gave their
blood product to their son. Fathers may feel guilt over amount of time spent with son, or
have given blood product to son
n long term chronic condition in son(s) may have exacerbated marital issues leading to
separation/emotional distance or divorce. Prominence of HIV/AIDS magnifies these
problems. Children feel guilty if their condition affects parental marriage
n because hemophilia is a genetic disorder, many members of a nuclear or extended family
may be exposed to or already have died of HIV/AIDS
n many persons with hemophilia rely on their families during end stage illness, rather than
utilize AIDS resources like hospice care. Results in physical, emotional and financial
demands on the family
n urban and rural families have different access to hemophilia comprehensive care.
Treatment for bleeds is a major worry during palliative phase
Issues specific to the blood-transfused
n for parents of children infected via transfusion, there may be guilt over consenting to
treatment as well as anger at government and medical system. These emotions make
trust and decision-making more difficult
Palliation
n the need to maintain hope may impede move to palliation
n may feel palliation is “giving up” and carry enormous responsibility for the decision
n grief may impact coping strategies
n in the case of a child, conflicts may arise if parents are separated, divorced or one parent
has custody
n extended family may add pressure to decision making around palliation and may decide
they need to intervene
Dying
n if HIV+, then may be witnessing their own future
n survivor guilt: Why not me?
n may respond by not talking about death
n parents may be caring for their child (whether adult or child) while grieving potential loss of
that child
n caring for a dying person is a new experience for may
n parents/siblings may be alienated from person who is dying
n young siblings and children may have misconceptions about what is happening, may fear
the same thing will happen to them, may feel they “caused” this to happen
n professionals may dislocate family from primary care role
Saying good-bye and letting go
n relative youth of dying person may make this more difficult
n may be residual, unresolved issues related to anger
Reprinted from Module 4: Palliative Care, Mount Sinai Hospital/Casey House Hospice, Toronto, Ontario,
1995.
n
The experience of hope
People who are dying have certain basic needs. These include the need to
know that they won’t be abandoned, the opportunity to express themselves and
the need to hope. We’ve said a lot about the first two needs. Now, let’s look at
the experience of hope.
Hope is the ability to invest energy and vision in a reality beyond our present
sight. It is the capacity to yearn for and expect a meaning deeper and an
outcome better than the present seems to allow. Hope sustains us and holds us
together through the experience of loss and the process of grief. It is the
essence of self-care.
Throughout the dying process, your friend will need to hope for different
things at different times. Each of these hopes will be based on his current
needs and beliefs about death and dying. One such hope is the hope for a cure:
something that will remove the threat of death. This is reasonable, since few of
us want to die.
A second kind of hope may come with the acceptance that a cure will probably
not be found before the time of death. This is the hope for treatment that will
work to relieve the symptoms of pain and illness, and to ensure that mental
competency will be maintained. Everything that can be done to relieve pain
and suffering should be done to sustain your friend’s hope.
Once everything has been done to maintain his comfort, your friend may then
hope for a prolongation of life. This may mean staying alive just long enough
to celebrate a birthday or Christmas with family, or to visit an old friend who is
coming from afar. Whatever the reasons, do all you can to support and
encourage your friend with his goal.
Eventually, your friend may begin to hope for a peaceful death – a death in
which he will not be abandoned, and has a chance to express himself.
Many people will move from one hope to the next, depending on their place in
the dying process. These hopes don’t come in any particular order, and they
don’t come to everyone. Family members, friends and care team members may
experience these hopes, as well. It is important to make sure the hopes of
others are not imposed on your friend. You may want to step back and act as a
buffer between your friend and his family or loved ones. Asking people what
they are hoping for will bring feelings to the surface and provide clues about
what you can do to provide support and comfort. You may also feel it
necessary to suggest that family members seek counselling to help them
understand and cope with their feelings. Don’t forget to consider your own
feelings. You have hopes, too!
n
Euthanasia and assisted suicide
Since the first edition of this manual was released, the topics of euthanasia and
assisted suicide have received a great deal of public attention. Although
unresolved, the debate on euthanasia and assisted suicide has helped many
Canadians to think about their own mortality and what they might like in terms
of palliative care.
It’s common for people dying with AIDS to talk about ending their lives
“before the suffering becomes too great,” or for a host of other reasons. More
often than not, this topic of conversation is a hint that something else is going
on; something that needs attention. It’s okay to talk with your friend about
euthanasia or assisted suicide, but your focus should be on why he wants to
discuss the issue. Is your friend in pain, depressed, exhausted with life, etc.? It
may be important to refer your friend to a professional counsellor to assess his
concerns and discuss what can be done to alleviate them.
For some people, planning their suicide is a way of taking control over the time
of their death. Many people believe this is a “right.” Your friend may ask you
to assist him with ending his life. This will probably be difficult for you to hear.
You may even want to avoid the conversation. Remember, assisting someone
with suicide is a criminal offence in Canada and a conviction can result in a
lengthy prison sentence. Volunteers who participate in a client’s suicide not
only put themselves at risk of prosecution but also the agency with which they
are affiliated.
We need to say this again: seeking the advice and assistance of a health
professional is extremely important when supporting someone who is
contemplating ending their life. Regardless of your own personal beliefs about
the subject, you must ensure that your friend has access to the best treatment
options and counselling support available.
n
Conclusion
Supporting your friend and his loved ones cope with their feelings and concerns
about AIDS and dying requires special care and attention. The following points
will help you maintain an open and trusting relationship with your friend and
his loved ones:
•
•
•
•
•
•
References
Communicate acceptance and concern.
Encourage the expression of feelings.
Give your friend control.
Reinforce a positive self-concept and body image.
Help your friend to maintain roles and relationships as best he can.
Offer hope that is appropriate.
Mount Sinai Hospital & Casey House Hospice. Module 4: Palliative Care - A Comprehensive Guide
for the Care of Persons with HIV Disease. Toronto: Authors. 1995.
Canadian Association of Social Workers. Module 6: Psychosocial Care - A Comprehensive Guide
for the Care of Persons with HIV Disease. Ottawa: Authors. 1997.
Michael F. O’Connor & Irvin D. Yalom, Editors. Treating the Psychological Consequences of HIV.
San Francisco, CA: Jossey-Bass Publishers. 1997.
Therese Rando. Grief, Dying, and Death: Clinical Interventions for Caregivers. Champaign,
Illinois: Research Press Company. 1984.
Therese Rando. Loss and Anticipatory Grief. Lexington, MA: Lexington Books. 1986.
SECTION 11 l 153
Communication
n
Introduction
We have mentioned several times throughout this manual that communication
is the key to running a successful and supportive care team. We are primarily
concerned with the interaction between you and your friend. However, we also
need to consider communication between you and other people, such as your
friend’s family, other members of the care team and any health professionals
involved in your friend’s care.
•
•
•
•
•
•
•
n
Concepts related to a supportive relationship
Methods of communication
Communicating with someone in a coma
Other ways of communicating
Communicating with your friend’s family
Communicating with health-care professionals
Communicating with care team members
Concepts related to a supportive
relationship
All of us are involved in many different kinds of relationships. The
relationship we focus on in this manual is the supportive relationship. There
are some basic concepts that provide a solid foundation for a supportive
relationship. Those concepts are: trust, empathy, caring, love, autonomy and
advocacy.
Trust
Trust is one of the most basic and essential elements of any successful
relationship. Most of us come to develop our understanding of trust as
children, through the relationships we have with our parents, particularly our
mothers, who in most cases, help us through our first experience with illness.
Thus it is not uncommon that we look for such support when we are ill or
feeling down.
Trust is based on experience. Some people have had experiences that have
taught them not to trust. Others may generally be trusting people, but they
154 l COMMUNICATION
might distrust the health-care system. This may be based on a traumatic
experience. It is important to keep in mind that no one is completely trusting in
a new situation with a new person. Trust takes time to develop and is
reciprocal; it works both ways. You, too, will need to develop a certain level of
trust while caring for your friend.
In the context of a supportive relationship, trust results in the belief that other
individuals are capable of providing help and will do so. Consistency and
reliability are very important when you are building trust between you and
your friend. Be there when you say you will, or call to say you will be late or
unable to come. Be consistent with your caregiving, so your friend can rely on
you and know you are capable of giving help. Be honest and be fair. When
your friend asks you questions, don’t guess at the answers. If you don’t know,
say so, and seek out the answers. And respect your friend’s confidentiality.
Don’t assume you will always be able to gain the ultimate trust of the person
you are caring for or of their family. Some people will only let certain people
do certain things. Accept this and respect it. It does not mean you are not a
good caregiver. Remember, your goal is to provide care, and if that means
finding the right person to do a certain thing, then finding that person becomes
your task. Of course, when you are the only person available to provide help,
you will have to work on building trust.
Empathy
Empathy brings depth and meaning to a relationship. Empathy is the ability to
enter into the life of another person — to accurately perceive her feelings and
what those feelings mean. It is not the same as being sympathetic or feeling
sorry for someone; rather it means sharing their experience and being in tune
with their thoughts and emotions while still understanding that it is their
experience. When the sharing of emotions becomes a fusion between you and
your friend, when her experience affects you as if it were yours, then
sympathy, not empathy, is happening.
Sympathy is not a bad thing. It is real and has a place in human relationships.
But it is important to remember that in a supportive relationship, empathy will
provide you with more opportunities to be helpful. If you feel sympathy, you
share a person’s feelings and emotions, but you also share their needs, and that
makes it difficult for you to remain objective.
Empathy is a very human quality, and it takes time to develop. It is most
genuine when it evolves naturally. Imagining yourself in the shoes of your
friend is a good place to start. Sharing hopes and fears, appreciating the good
and the bad, are all examples of empathy. The trick is, while you work to
understand and share your friend’s experience, maintain an appreciation and
COMMUNICATION l 155
respect for the fact that the experience is hers. This is not to say that your
friend should be alone in the experience, rather that it belongs to her.
Coming to understand the differences between empathy and sympathy can be
one of the most rewarding experiences you will have as a caregiver. This
understanding will become a part of you and will walk with you through your
life.
Caring and
Love
Support is most effective when caring for someone goes hand in hand with
caring about them and their experience. We need to be flexible in our
understanding and acceptance of what matters to the people around us. Caring
and love are based on experiences, and our experience touches all we bring to
life.
Too often in today’s society, love and caring are interpreted in a sexual
context. Thus, the fears and stigmas associated with sex can prevent us from
expressing genuine feelings of love and caring. We hold back on these feelings
for fear that someone will get the wrong message. The point is, we have little
to fear when we find at the heart of love an unconditional acceptance of a
person as she is together with a vision of what she is capable of becoming.
This vision of becoming something may seem inappropriate for a person who
is dying. But dying is in fact living, and in the process of living with dying
there is much to be discovered and explored. No one should be denied the
experience of learning about herself or about life, regardless of her situation.
Statements like, “Don’t worry about that, it’s not important any more,” may
seem helpful in reducing stress or anxiety, but that statement is really a
dismissal of what matters and what is important to your friend. You will be
more helpful to your friend if you don’t make any assumptions about what is
important and what isn’t.
Caring and love unite us with others. They help us overcome isolation and
insecurity. We all experience love and caring in different ways and will bring
to those experiences different meanings and ways of expressing them. When
we are supporting someone, we sometimes forget that we need to let her care
for and about us. Love and caring are mutual, sharing experiences. The need to
be cared for is rarely separated from the need to care for others. It may be
difficult to let your friend care for you: but do it. It is an expression of your
respect for her as an individual and of her right and ability to express herself.
This may be the greatest expression of your love and care for her.
156 l COMMUNICATION
Autonomy and
Advocacy
We have learned through our experiences with HIV infection and AIDS that
autonomy and advocacy are critical components of care and caregiving. They
are also an important part of death and dying. The concepts of autonomy and
advocacy are often poorly understood.
Autonomy is best described as a person’s right to self-determination; that is,
the right to be in control of one’s life and the decisions that affect that life.
Living with and dying with AIDS involves a series of losses that make it very
hard to maintain a sense of autonomy. Losing control over your body, possibly
your mind, and your ability to make decisions can tear away at your sense of
being in charge of your life. It can also attack your belief that you have a right
to determine what is best for you and what your future should be.
One of your jobs as a caregiver is to help your friend maintain her autonomy.
You can build trust through empathy and caring. Respect your friend as an
individual, and provide opportunities for her to express herself.
Our health-care system has little respect for autonomy. When we enter the
health-care system for assistance, we often have to give up much of who we
are in order to get the assistance we need. Sometimes it’s almost impossible
for a person who is ill, weak or depressed to stand up for herself and for what
she needs and wants. This is where the concept of advocacy comes in.
An advocate is a committed representative of another person’s wishes. (This
should not be confused with being a legal representative, for example someone
with power of attorney.) As an advocate, you are a supportive voice for the
person you are caring for. Sometimes this involves standing up for your friend
when she can’t do it for herself, letting others know what she feels, needs or
wants. It can also mean being a silent partner in the process of obtaining and
receiving care. Just being there for your friend is one form of advocacy.
The stigmas associated with AIDS can be cruelly reflected in damaging acts of
discrimination and blatant violations of human rights. These acts often result
in powerful emotions such as anger. Sometimes a powerful anger will drive us
to stand behind our convictions. But occasionally these responses take over,
and we lose perspective. We forget that we are supposed to be an advocate.
Being an advocate can be very difficult, especially when we disagree with our
friend’s point of view. In cases like these, we have to return to the concept of
autonomy and remember that our friend’s individuality is the issue at hand, not
our personal beliefs. Knowing when you can and cannot be an advocate is
sometimes difficult to determine. There may be times when you just can’t
bring yourself to do something your friend asks you to do. Other times, you
may feel that your friend is disregarding your autonomy. Be honest when this
happens and talk about it with your friend. What you shouldn’t do is desert
COMMUNICATION l 157
your friend. If you aren’t the person to do the task, then find someone who
can. Though it may not seem clear to you, that act of finding someone else is
in itself a form of advocacy and an expression of a respect for your friend’s
autonomy.
As a final note, remember that autonomy and advocacy are critical
components to your caregiving. They need to be understood by all members of
the care team and should be consistent. Although the team’s caregiving will be
a collection of different ideas and experiences, they must all come from an
understanding of and respect for the person in care.
n
Methods of communication
It seems almost silly to try to guess how many different methods of
communication exist. The number probably equals the number of human
beings on this planet, and it will constantly change as we develop and evolve.
Therefore, we will look at the two most common ways of communicating:
verbal and non-verbal communication.
Verbal
Communication
Verbal communication involves the use of the spoken, written or signed (as
with the deaf and hearing impaired) word. Through the use of language, we
send messages that convey any number of meanings. Our use and
understanding of words and phrases will be as different as we are as
individuals. For example, people with different levels of education or life
experience often communicate quite differently. All of this is important to
remember when you are talking and listening to your friend.
Some people have developed special skills related to communication. Some
may even seem obsessed with language and the meaning of words. The
purpose of this section is not to turn you into an expert on communication.
Instead, we’d like to give you some helpful hints on how to talk and listen to
your friend. Whether talking or listening, the most important thing to be is
patient.
Talking
Here are some general things to keep in mind when talking to your friend.
Acceptance
Accept what you friend is saying, however different it may be from your
perception of what is being discussed.
Clarification
Clarify anything you don’t understand. You want to make sure you understand
what has been said and what it means. You may not immediately understand
158 l COMMUNICATION
what your friend has said, and this may be very frustrating for your friend. Be
patient and try different approaches to grasp her meaning.
Recognition
Give recognition to your friend’s point of view. This will help build trust and
confidence in the relationship. It also reflects your respect for her as a person
and your willingness to hear what she has to say.
Sharing
Offer yourself to the conversation. Share your perceptions and feelings with
your friend. Be careful, however, not to take over the conversation. Let your
friend lead the way, then join her in the direction she is taking.
Honesty
Be honest with your comments and observations, but don’t be hurtful. Think
before you say something that you suspect might trigger a reaction. There will
be times when it is better to say nothing. Also, be honest about the intent of
any questions you ask. If you need information, say so, and say why. Don’t use
tricks to get information out of your friend; that’s being deceitful and unfair.
Encouraging
Encourage, don’t push your friend to share her thoughts and feelings. This will
help you find out where your friend is, and it will provide her with an
opportunity to guide you in your caregiving. Gently lead her, so she feels she
can continue with the conversation.
Restating
Restating what your friend has said can be helpful when you are not sure you
understood what she said. It also sends a message that you are listening to her,
and it gives her an opportunity to correct something she said incorrectly.
However, don’t overdo it. Restating something over and over again can be
very annoying.
Language
In some cases you will not speak the same language as the person you are
caring for. Also, it is common that people return to the use of their original
language as they come closer to death; this may be a language you do not
speak. Make sure it’s possible for either translation or the opportunity to speak
with someone who knows the language. Sign language for the deaf or hearing
impaired is one excellent example of communicating in a language that is not
all that common.
Openings
Try different openings for conversation. You may want to start with an
observation like, “You seem cheerful today.” Asking if your friend wants to
COMMUNICATION l 159
talk is also a good way to start a conversation. Give her broad openings so she
can direct the conversation and the topic.
Closure
Don’t leave your friend hanging on the edge of a conversation that is
important to her. If you have to stop the conversation, wrap it up fairly. You
may want to summarize what has been said and then schedule a time to
continue. If the subject you are discussing is quite intense, you may want to
put a time limit on the discussion so you and your friend don’t become
exhausted by the conversation.
Listening
Making conversation can be difficult, but it usually is a lot easier to talk than
listen. Listening to your friend involves concentration and your undivided
attention. This can be hard work and should never be taken lightly.
•
Look at your friend when you are listening to her. Nothing is more
distracting or frustrating to someone who is talking than a wandering eye.
Make sure you are close enough to your friend so you can hear what she is
saying. Don’t ask her to speak up if she is weak or has a mouth full of
sores: sit closer to her.
•
Don’t interrupt your friend when she is talking to you unless you need to
have something clarified. Remain neutral while you listen. Don’t jump in
with your point of view. Hear what she says first and then decide what you
might like to add, if anything.
•
Don’t put words in your friend’s mouth. Give her time to say what she has
to say. In some cases she will need your help to find the right word. Offer
some suggestions and make sure that is what she meant to say.
•
Listen to her body, not just her voice. Your friend may be saying something
with body language that you need to listen to.
•
Make sure the atmosphere is conducive to effective communication. Turn
off a radio or television if it is distracting. Make sure you provide for
privacy when appropriate. If the conversation is important and you don’t
want to be interrupted, take the phone off the hook (with your friend’s
permission), but remember to replace it when you are finished.
n
Non-verbal communication
Actions often speak louder than words. Verbal conversation hardly ever
happens without some kind of gesture or another. Very often, gestures, facial
expressions, body position and movements will impart meanings that are more
160 l COMMUNICATION
significant than words. Verbal and non-verbal modes of communication are
interrelated. It is the non-verbal cues that add meaning to what is being said. In
some cases, non-verbal communication is the only form available.
As a person approaches death, her ability to speak diminishes and eventually
disappears. When you are caring for someone who is dying, you’ll have to
receive and interpret non-verbal messages. You will also have to communicate
with someone without using words. There are a number of ways you can
receive and give messages.
General
Appearance
Your friend’s overall appearance can tell you a lot about what is going on in
her life and with her sense of well being. You may be shocked to find your
friend in the same clothes for days, when normally she is well groomed and
pays attention to her clothes. Her interest in these things may have disappeared
because she’s feeling depressed or physically weak. However, the opposite
may also be true; a well groomed and tidy looking person is not necessarily
feeling well or in good spirits.
Facial
Expressions
The face is the most expressive part of the body and holds the greatest
potential for non-verbal communication. Look for subtle clues that reveal
particular emotions and responses. The eyes can be especially revealing.
Sometimes facial expressions can be difficult to judge, and they may even
seem to contradict what is being said. When this happens, ask your friend to
clarify what she has said, explaining that you got a different message from her
facial expression. Be careful when you do this; you don’t want her to think
you mistrust her. Pay attention to your own facial expressions. Be careful with
the messages you send to your friend.
Posture and
Gait
Your friend’s posture and the way she walks can be expressions of the way she
feels. They can also provide you with important hints on what is going on
physically with your friend. Is she in pain? Is she losing some of her
coordination? Is she getting weaker?
Hand Gestures
Hand gestures are common expressions that we all use, and they differ from
one culture to the next. They can be used to emphasize or punctuate specific
meanings or to create messages on their own. Hand gestures can be
particularly helpful when we’re trying to understand important messages about
pain or physical symptoms. “Can you show me where it hurts?”
COMMUNICATION l 161
Touch
Touch is a very personal and intimate form of communication. Touch can also
be a very therapeutic experience, and it can convey understanding better than
words or gestures. It is important to know when, and when not, to use touch as
a way of communicating with your friend. Some people will encourage you to
touch them, hold their hand or ask for a hug. Others will want you to touch or
hold them, but won’t be able to ask you to do so. Some people will not want to
be touched at all. When people do not want to be touched, and you have to
touch them to provide care, be particularly careful in how you touch them.
Always explain what you are doing and why.
Silence and
Presence
Two other intimate, less obvious forms of non-verbal communication are
silence and presence. The act of just being there, in silence, beside your friend
can convey many important messages. Most notable is the sense of security, of
not being abandoned. Sharing your friend’s experience without words or
movement can bring important meaning to your relationship.
Space and
Territoriality
Territoriality is a natural, human drive to gain, maintain and defend one’s right
to an area of space. When someone’s personal space is invaded, the intrusion
can trigger a defensive response that prevents effective communication.
Personal space is a very important thing to consider should your friend be
bedridden or have limited mobility. Her world has been reduced to a single
room or even to a bed. This has a significant effect on your friend’s privacy.
Be mindful of your friend’s personal space, and respect it. This will help her
feel at ease with you, and she will most likely be more open in communicating
with you.
n
Communicating with someone in a
coma
Coma is a profound unconscious state, and a person in that state cannot be
aroused with tactile or verbal stimuli. This does not mean that a comatose
person cannot hear your voice or feel your touch. Coma is not always
permanent; nor is it necessarily a sign that death is near. Some people will slip
in and out of a comatose state, while others will suddenly wake up. Whatever
the cause or duration of the coma, it should not keep you from communicating
with your friend.
When someone we love goes into a coma, many feelings and emotions may be
triggered within us. We can feel hurt, cut off, helpless, confused, depressed,
grief-stricken or angry. The person we once knew has changed. Her
personality and life energy have been directed inward.
162 l COMMUNICATION
To communicate with someone in a coma, you will need to be in touch with
your perceptions and inner feelings. When you can listen to and hear yourself,
you will be able to communicate with your friend. This means you must pay
attention to cues you may usually take for granted or neglect to notice.
Changes in breathing patterns, tiny movements of the eyes, facial muscles or
other parts of the body are examples of such cues. Once you are aware of these
cues, you will be able to receive and send messages to your comatose friend.
Use your intuition when you’re trying to understand and communicate with
your friend. (But be careful not to make assumptions that suit your needs.) Be
patient and be accepting.
•
Speak to your friend as you would normally. Tell her what you see and
feel. Encourage her to feel what she is feeling.
•
Use touch as a way of communicating. Place your hand gently on your
friend’s chest and let it rise and fall with each breath. Eventually your
breathing pattern will follow your friend’s and you will be better able to
sense what she is communicating, as she will with you.
•
Remember that your friend’s experience is an inward one. Don’t try to pull
her out of it. Instead, move inwardly with her and support what she has
already begun. This inward focus is a part of the dying process. For most
people, it is a necessary experience.
•
Be relaxed, be calm and be yourself. You don’t have to communicate with
your friend all the time.
n
Other ways of communicating
Communication is not limited to verbal and non-verbal methods. Many of us
will find other ways of expressing ourselves and communicating with others.
Examples include music, painting and dance. These can be powerful and
deeply expressive ways to send messages to those around us. If painting or
drawing is the best way for your friend to describe her feelings, encourage her
to do so. Be creative with your communication, and be daring when you find
difficulty with other more common ways of communicating.
Communication in today’s world has been strongly affected by advances in
technology and science. Many devices have been developed to help promote
and facilitate communication. Special telephones and other assistive devices
are good examples. An occupational therapist may be able to suggest devices
that will help you communicate with your friend.
COMMUNICATION l 163
Some Things to
Avoid
Many things we say and do come from good intentions, but sometimes they
result in hurtful consequences. Here are some of the things you should try to
avoid when communicating with your friend.
Promises
Don’t make promises you cannot keep, and don’t fill your friend with empty
reassurances and false hopes. Not following through on things will only result
in disappointment and will damage the trust she has in you and the care team
as a whole.
Making Judgments
It is important to not make judgments about what your friend says or does.
Everyone has a right to her opinion, and that right should be respected.
Making judgments can be subtle — rejecting what your friend has said; or
obvious — making stereotyped remarks or expressing outright disapproval.
Although you may feel you are not being judgmental, your responses and
actions may be interpreted as such. Challenging your friend’s opinion may
also be interpreted as a judgment of her point of view or abilities.
Probing
Probing is a technique that is sometimes used to help get to the root of a
problem. When used correctly it can be helpful, but knowing how and when to
use probing takes training. When used incorrectly, probing can be interpreted
as an invasion of privacy. Let your friend lead the conversation and make the
decision about what she wants to share with you. If she feels safe with you and
can trust you, she will let you know what’s on her mind.
Denial
Denial is a defensive mechanism we all use to protect ourselves from things
that hurt or that we don’t want to face. What we’re talking about here is your
denial as a listener. Don’t deny what your friend has said because you don’t
want to deal with her concern. Be honest with yourself and recognize your
feelings. Don’t try to avoid uncomfortable issues by changing the subject,
introducing an unrelated topic, or changing the meaning of what your friend
has said. Express your discomfort and suggest that she share her concern with
someone else. If you are the only person she chooses to confide in, you may
want to get some help in dealing with the issue.
Testing
Don’t test your friend’s abilities to find out how she is doing. This is deceiving
and unfair. Honesty is the best policy. Although testing may seem to be an
easy way to find out what’s going on, using tricks or roundabout ways to
communicate with your friend is disrespectful.
164 l COMMUNICATION
n
Communicating with your friend’s
family
While the care team’s focus is centred around the dying person, it needs to
extend to her partner and family members (biological or chosen).
Communicating with your friend’s partner and family members (parents,
children, siblings, etc.) may be a very different experience compared to the
one you share with her. Although the principles of communicating are the
same, the context is different.
In Section 10, we discuss some of the psychological and emotional
experiences of partners and family members. Reading about these
experiences will give you a good start to understanding and appreciating
what they are going through.
Make sure you take the time to offer to talk with and listen to your friend’s
partner and family. Just as it does with your friend, it will take some time for
you to build trust with these very important people in your friend’s life. You
may be surprised with how much or how little they will want to share with
you. Remember that what they share is private and should be respected with
confidentiality.
Sometimes, a partner or family member may need more support and more
time for communicating than your friend does. Do what you can to offer this
support but be careful not to leave your friend feeling abandoned or
forgotten.
Often, partners and family members will ask for help in communicating with
your friend. “I don’t know what to say.” “I’m afraid to say this or that.”
Listen carefully. Ask if they want to speak privately; go to a quiet place in the
home or outside for a walk so they can speak freely. Don’t jump in with
suggestions right away. Talking about feelings often helps people to find their
own solutions.
Experiencing the dying of a loved one brings lots of feelings, old and new, to
the surface. Some of these feelings and concerns can be complicated and
sometimes related to ongoing or unresolved conflict. While you think you
might be able to help, it’s not your role to do so. What you can do is suggest
that they speak to a social worker, counsellor or member of the clergy to help
them work things out. If they don’t like this idea, then just listen.
COMMUNICATION l 165
n
Communicating with health-care
professionals
Depending on how the care team is organized, you may need to communicate
with your friend’s doctor, nurse or another health-care professional. In some
cases, one or two people on the care team will be assigned the task of
communicating with the doctor. This is probably best since it will decrease the
possibility of giving and receiving conflicting messages. Pay attention to the
guidelines the care team has set up for dealing with health-care professionals.
Most important, take direction from your friend. Whatever your particular
situation, there are some things to keep in mind should you need to
communicate with someone in the health-care system.
•
Never forget that any decision should always rest in the hands of your
friend. Don’t let the advice you get from a professional dominate the
care team.
Knowing which health-care professional to contact for help is very important.
Think about what you need and who might be the best person to provide
assistance. Don’t rush to the doctor with every question you have. Start by
talking to your friend. Together, look at the problem carefully. This discussion
may lead you to talk to someone else. When you don’t know where to go, ask
someone on the care team or a counsellor at your local AIDS organization.
Nurses working with people living with HIV/AIDS have the broadest scope of
expertise in the health-care professions. They may be your best bet when you
are seeking where to go.
Health-care professionals are members of the helping professions. Although it
may not always seem to be the case, their interest lies in your friend’s well
being, and many of them have devoted their careers to helping others. Respect
this fact and appreciate it.
Try to be open-minded when you are communicating with a health-care
professional. She is, after all, a person as well as a professional. Don’t make
assumptions or predictions about her response to your request. No one reacts
well to someone who is clearly making judgments about her abilities or
intentions.
Appreciate the fact that most health-care professionals are working in a system
that has many problems and is undergoing fundamental change. They have
skills and knowledge they can’t use because of limited resources and funding.
This can make their job particularly frustrating, especially when they want to
help but can’t. If you express your understanding of these factors and avoid
arguments about them, you will help build a relationship that is mutually
beneficial.
166 l COMMUNICATION
Before you call or ask someone for help, try to collect as much information
about the problem as possible. The more you can tell the professional about
the problem, the easier (and sometimes the quicker) it will be to get a
response. Also, try to deal with several concerns with one call. Don’t make a
series of phone calls; you may be labelled a pest, and that might affect the
response you get.
Be clear and concise when asking for help. Identify yourself and your
relationship to your friend. You should expect to be heard and to be given a
response. Trying to get in touch with a health-care professional can be
difficult, so be prepared before you get connected. Have your questions and
concerns written down so you don’t forget anything.
Make sure you understand the advice you are given. Write it down and ask
questions before you hang up or leave the office. There needs to be a sense of
agreement between you and the professional so the plan of action can be
effective. And remember, you’ll have to relay the information to the rest of the
care team, so you will need to understand it fully.
Express any dissatisfaction or disagreement with respect. Be firm, not pushy,
when you express your position. Show that you appreciate both sides of the
story but that your concern remains with your friend’s well being. You don’t
need to make any enemies when you’re trying to get a solution to your
problem. Compromise can be helpful, but don’t let it work to your
disadvantage. If you want a second opinion, let the person who gave you the
first opinion know this.
Be serious when it is necessary, but remember that a sense of humour does
wonders to establish a good rapport. Courtesy and gratitude are almost always
appreciated, and they help build mutual respect in a relationship.
Should you find yourself at a dead-end when trying to communicate with
someone in the health-care system, get help from an advocate at your local
AIDS organization or hospice program. In the end, nothing should stop you
from getting the information or assistance you need to help your friend.
n
Communicating with care team
members
Communication is the key to creating and running a successful care team.
Share information with each other to ensure that your caregiving is consistent,
and to ensure the team responds to the needs of your friend and to the needs of
the care team itself. Here are some helpful hints on how to communicate as a
care team.
COMMUNICATION l 167
Write Things
Down
Make sure that anything important related to the caregiving of your friend is
clearly written down and kept in a common place; for example, in this manual.
Everyone on the care team should know where the information is kept and
how to record messages, important notices and so on.
Read the Care
Team Log
Stay in touch with what is going on by reading the log every time you work a
shift. Try to do this at the beginning of your shift so you don’t miss an
important notice or a change in the caregiving plan.
Hold Regular
Meetings
Do what you can to hold regular meetings with the entire care team. This is a
useful way to share information and to deal with any problems or concerns.
Meetings can also be used to receive instruction on particular caregiving tasks
or issues related to death and dying. Most important, meetings can be a forum
for providing support to one another and sharing the experience of being on a
care team.
Follow the
Basic Rules
Use the principles of talking and listening described in this section when
you’re dealing with care team members. Good communication skills apply to
everyone.
Resolve
Conflicts
Don’t let conflicts within the care team persist or go unattended; they may turn
into bigger problems. Try not to make conflicts any larger than they are. If
you’re having difficulty with one person, try first to deal with that person; you
don’t need to make it everybody’s problem. When you have difficulty
resolving a conflict, get help. Find someone who can act as an impartial
facilitator to help you resolve the conflict. There are many ways of resolving
conflict. Almost all methods involve four basic steps:
•
•
•
•
Identify the problem clearly and in the proper context.
Listen to all sides of the story from all persons involved.
Identify possible solutions and how they may be implemented.
Do what has been agreed upon to resolve the conflict.
Remember, it is not your job to resolve any conflicts your friend is having with
her partner or family members. Suggest they consider getting help from a
health professional or family counsellor.
168 l COMMUNICATION
n
Conclusion
Each and every person will communicate with another person differently. We
all find ways to send and receive messages that reflect who we are and how
we have come to learn to express ourselves. Communicating with someone
who is dying can be challenging and at times painful and frightening. But with
honest and open communication we can overcome any fears or obstacles we
might face.
References
Harry van Bommel. Choices for People Who Have a Terminal Illness. Toronto: NC Press Limited.
1989.
Madalon O’Rawe Amenta and Nancy Bohnet. Nursing care of the terminally ill. Toronto: Little,
Brown & Company. 1986.
Stan Tomandl. Coma Work and Palliative Care: An Introductory Communication Skills Manual
for Supporting People Living Near Death. Victoria, B.C.: White Bear Books. 1991.
Notes
SECTION 12 l 169
Nutrition
n
Introduction
Good nutrition is important for everyone. For someone with AIDS, a properly
balanced diet can be one of the best ways to maintain health and prevent illness.
This is also true for a dying person. Although there may be a significant
decrease in the amount or kind of food a dying person will eat, nutrition
remains vital.
There are numerous resources that provide excellent nutritional guidelines for
someone with AIDS. (Some of them are listed in Section 19.) We will not try to
say everything there is to say about nutrition. Rather, we’ll provide you with
some important hints on nutrition, feeding and food safety as they apply to the
context of palliative care.
n
Nutrition and the dying person
A person’s nutritional needs change throughout the course of their life. What
once may have been the normal requirements may no longer be appropriate for
someone who is dying. Here are some of the changes to nutritional
requirements we would expect with a dying person:
•
•
•
•
•
•
•
•
n
The amount of food a person needs and wants will decrease.
The amount of fluid a person can drink will decrease.
Wanting to stop eating and drinking is natural.
What was nutritionally correct at one stage of life may not be correct now.
In some cases, aggressive nutrition can contribute to difficulties in managing
physical symptoms.
What your friend likes is more important than what is right.
What works is not necessarily what your friend may like or what is right.
The atmosphere surrounding eating and drinking is far more important than
the quantity of food ingested.
Nutrition and the person with AIDS
We know that AIDS significantly affects all aspects of a person’s life. Nutrition
and its effects are no exception. People with AIDS often find eating difficult,
and they struggle with such problems as lack of appetite, low energy,
depression, nausea, painful swallowing, gum infections and new food allergies.
All of these influence a person’s ability to maintain a well-balanced diet.
170 l NUTRITION
Two very significant and relatively common results of AIDS are wasting
(weight loss) and gastrointestinal disorders. Both problems can be particularly
challenging when it comes to nutrition.
Weight Loss
People with HIV infection and AIDS often lose an alarming twenty percent of
their usual weight. Weight loss increases infections, damage to organs and
intolerance to therapies. Weight loss often sets off a vicious cycle of immune
deficiency, repeated infections and progressive deterioration. In the end stages
of AIDS, weight loss is almost impossible to reverse, yet some people manage
to gain weight under certain nutritional regimes and with the help of medication.
Gaining weight is usually not the primary goal of palliative care. (Care usually
focuses on preventing infections and other complications.) Ensuring high levels
of calorie and protein intake will help to maintain and repair damaged body
tissues, increase the sense of well being, and preserve remaining immune
function.
Gastrointestinal
Disorders
Several gastrointestinal disorders severely compromise the body’s ability to
absorb nutrients. As a result, malnutrition and other dietary intolerances are
common. Several infectious diseases and the medications used to treat them can
cause such problems as anorexia (decreased appetite), nausea, vomiting, fever,
oral lesions and diarrhea. All of these compromise nutrition.
Lactose
Intolerance
One very common disorder is lactose (milk products) intolerance. In most
people with AIDS, lactose intolerance is a result of malnutrition, which causes a
decrease in the production of the enzyme lactase. Lactase is found in the
intestines and is necessary for the digestion of milk products which contain
lactose. Foods containing lactose may cause problems such as abdominal
cramps, bloating or diarrhea. To avoid these problems, several milk products
with digested lactose are available and should be used. An example is
Lactaid®, a kind of milk available in many grocery stores.
n
Getting started
When you’re helping your friend with nutrition, one of the most useful things
you can do is to make a list of the foods your friend likes and doesn’t like.
You’ll find a chart in Section 3 to record this information. Be aware that the list
may change.
o Make note of any foods that cause particular problems, such as nausea,
constipation, diarrhea and so on.
o Make note of any special dietary needs or problems your friend has, such as
food allergies, lactose intolerance or difficulty with swallowing.
NUTRITION l 171
When appropriate, consult a nutritionist about your friend’s dietary needs.
(Nutritionists may be available through a Home Care program and will be glad
to visit the home.) They can provide you and your friend with a wealth of
information and advice.
o Stick to what works, but don’t be afraid to try something new.
o There are hundreds of possibilities when it comes to providing nutrition.
n
Fluids
Fluids and solid foods
Fluids provide the body with nutrition, help to flush out body waste products
and toxins, and maintain cell and skin integrity. When someone does not drink
enough, he becomes dehydrated, and dehydration can have serious side
effects. Most notably, he will become very weak; he will urinate less to
preserve body fluid, and he won’t be able to excrete waste products and toxins.
He may become confused and disoriented. His skin may become dry, thin and
prone to breaking down.
Some of the side effects of dehydration are related to a decrease or build-up of
body electrolytes. These are the organic chemicals (for example, sodium and
potassium) the body needs to perform many functions at the cellular level.
When electrolyte levels are outside their normal range, the body responds in
different ways. The most serious responses are confusion and cardiac
problems. You are not expected to know or understand everything about
human chemistry. What you need to know is that fluids should always be
readily available to your friend. Some suggestions include Gatorade® (full of
electrolytes), cranberry juice and other non caffeine drinks.
Solid Foods
Many of the nutrients (proteins, vitamins and minerals) we need are found in
solid foods. As a person comes closer to death, his ability to eat solid foods
can decrease dramatically. Also, some people with AIDS have severe mouth
and throat infections, which make chewing and swallowing extremely painful
and sometimes impossible. Solid foods may need to be mashed or pureed.
Food should be cut into small pieces and arranged attractively on the plate; try
to make it look good enough to eat! Don’t prepare large meals, but serve
several small meals throughout the day.
n
Food safety
We know that people with AIDS and people who are dying are particularly
susceptible to many infections. They are also very susceptible to food
poisoning. You can prevent food poisoning by taking special care when you
prepare food.
172 l NUTRITION
o Wash your hands and cooking utensils before, during and after preparation.
o Do not use the same cutting board for raw and cooked foods. Wash cutting
boards thoroughly with hot soapy water.
o Always wash fresh fruits and vegetables before serving or cooking them.
o Do not serve the following foods raw: meat, fish, poultry, shellfish or eggs.
(This means no fresh eggnogs or homemade Caesar salad dressing.)
o Do not use cracked eggs.
o Use only pasteurized milk and pasteurized milk products, or Lactaid®
products.
o Thaw meat in the refrigerator or microwave, not on the kitchen counter. If
you are using a microwave, be sure to keep it clean at all times. Some
kinds of bacteria will not be killed in the microwave.
o Keep hot foods hot and cold foods cold. Foods at room temperature might
spoil.
o Store leftovers in the refrigerator and throw out after three days.
o Clean up during preparation and after mealtime to reduce the risk of food
poisoning.
n
Feeding tips
Helping your friend to eat and drink may become one of the many challenges
you will face in providing care. It’s important to pay attention to atmosphere
and to understand the nature of fluids and solid foods. Also, there may be
times when you will need to physically help your friend eat and drink. Here
are some helpful hints.
Atmosphere
Eating and drinking can be a chore for a person who is weak. At mealtimes,
try to ensure that the atmosphere is as pleasant and stress-free as possible. Pay
attention to the appearance, aroma and temperature of food. Many people with
AIDS have altered senses of smell and taste: be careful not to overpower them.
Encourage your friend to tell you what works and what doesn’t work. Make
sure you assess his ability to swallow and his level of consciousness; you want
to prevent choking.
o The social aspects of food should always be remembered. Appetite is often
poor when a person eats alone. Eat with your friend, or sit with him during
the meal.
o Allow plenty of time for the meal; eating will take longer than you think.
NUTRITION l 173
o Limit the number of interruptions during the meal, and don’t assume
conversation will be necessary.
o Make the meal and the place-setting attractive. Experiment with different
foods and presentations. A pleasant atmosphere might help to boost your
friend’s appetite.
o Never force your friend to eat or drink. But don’t wait for him to ask for
food; he often will forget to eat. Offer small snacks throughout the day.
o Ask your friend how he likes his food prepared. The cooking technique
you use may have an impact on how the food tastes and smells. Your friend
may have a special way he likes certain foods prepared. Also, it may be
important to consider your friend’s religious beliefs when preparing and
presenting his food (i.e., Kosher meals, etc.).
Eating
Solid foods range from purees and puddings to meat and potatoes. Before you
serve solid foods, assess your friend’s ability to chew and swallow. If he can
swallow but cannot chew, then a puree or pudding will be most effective.
o Ensure that your friend’s head is well supported and upright when he is
eating or being fed.
o For someone who can chew, keep food pieces small so the energy required
to eat is minimal.
o If your friend prefers to or can only eat with his fingers, give him finger
foods. This will help him maintain his level of independence.
o Use bibs or large napkins when necessary. This will help keep your friend’s
clothing and bed linens clean. But ask first. Few people like to be treated
like children.
o When you are feeding your friend, use a spoon instead of a fork. This will
prevent you from accidentally stabbing your friend with a fork prong. Also,
a long-handled spoon will help you place the food far enough into the
mouth.
o Offer small spoonfuls; don’t overload the mouth. Wait until the last
spoonful is swallowed before offering the next.
o Give liquids and solids separately.
o Practice feeding with a friend or family member. Switch roles so you are
aware of both sides of the feeding experience.
o Keep a small kidney basin or bowl close by. Nausea and vomiting can
happen very suddenly. You want to be prepared.
o For tips on how to feed someone who is blind or visually impaired, see
Appendix A.
174 l NUTRITION
Drinking
Fluids include water, juice, coffee, tea, ice chips, broths and nutritional
supplements like Ensure, Boost or Essential. (There are several other
supplements on the market. A nutritionist can advise you on their uses.)
o Always raise your friend’s head when helping him to drink. Use a couple
of pillows or gently support the base of his head with your hand. It’s almost
impossible to drink when laying flat.
o Ask your friend to take small sips and not big gulps, to help prevent
choking.
o Spill-free thermos bottles or drinking cups make drinking easier when lips
no longer fit tightly around the rim of a glass. Ask your friend first if he
wants to use one of these drinking cups; they may make him feel like a
child.
o Use a straw when your friend is strong enough to suck on it.
o When your friend is especially weak but still able to swallow, you might
have greater success by using a syringe. Place the tip of the syringe into the
side of the mouth, squeeze a small amount of fluid into the mouth and ask
your friend to swallow.
o Ice chips or popsicles are excellent ways to give someone fluids, and they
help to keep the mouth moist and feeling fresh. You can make flavoured
ice chips by freezing juices in an ice cube tray.
o Some people forget to swallow, so they will need a gentle reminder.
Sometimes, softly stroking the side of the throat will help to stimulate
swallowing.
o If your friend has difficulty swallowing, fluids that are somewhat thick are
easier to swallow (milkshakes, applesauce).
n
Some solutions to nutritional
problems
Here are some suggestions that might help maximize your friend’s nutritional
intake.
No Appetite
o Serve foods your friend really loves.
o Concentrate on atmosphere; make it enjoyable, and the meal attractive.
o Experiment with food and flavours; try new combinations.
o Serve small frequent snacks.
o If appropriate, dark beer is a great appetite stimulant.
NUTRITION l 175
o Canned chicken and beef broth are very handy. They can be used as is or to
thin out a puree, and will add flavour to a meal.
Fatigue
o Take advantage of the times when your friend is feeling “up.” Depression,
feeling down or tired will decrease a person’s appetite.
o Serve smaller portions that take less energy to eat. Serve foods that are
easily digested.
Too Full
Too Fast
o Reduce meal portions and at the same time increase the caloric intake; add
extra butter to a sauce or another scoop of mayonnaise to salads or
sandwiches.
o Don’t rush a meal; offer small amounts over long periods of time.
o Try nutritional supplements such as Ensure® or Boost®; even small
amounts of these are loaded with nutrients. These nutritional supplements
usually come in different flavours and can be served at room temperature
or chilled.
Some people cannot stand the taste of nutritional supplements, so you may
want to try offering a powershake or a power-slushie instead. A powershake
is a milkshake embellished with nutritional supplements (powders available in
pharmacies and health-food stores). You can make the shake in a blender with
milk, ice cream and the nutritional powder. Lactose-free products such as
Lactaid® or Rice Dream® (a non-dairy ice cream) can also be used. Flavour
according to your friend’s direction. A powershake is a meal in a glass.
Power-slushies can be used when your friend is producing a lot of mucous
and when you want to avoid dairy products. In a blender, mix the nutritional
powder with crushed ice and fruit juice.
Nausea
o Give medications for nausea at least thirty minutes before eating.
o Offer several snacks throughout the day; keep the stomach from being
empty which can cause nausea.
o Offer a couple of crackers to nibble on first thing in the morning.
o The smell of food will often trigger nausea. Offer cooler foods, which have
less strong smells.
o Avoid liquids with meals. Save them for one hour before or after the meal.
o When cooking food, use the exhaust fan to keep the smells from reaching
your friend.
o Avoid sweet or greasy foods. Increase the intake of salty foods.
o Encourage your friend not to lie down after eating.
176 l NUTRITION
Vomiting
o Don’t let your friend continue eating after he vomits. Ask him to rinse out
his mouth and wait fifteen to twenty minutes before he eats again.
o Offer lots of clear fluids (not milk) to replace those that were lost with
vomiting.
o Ask your friend to sip fluids through a straw to avoiding filling up with
gulps.
Constipation
o Gradually increase the intake of whole grains: cereals, breads and baked
products.
o Offer a variety of fruits, vegetables and fruit juices, including prune juice and
prunes, once a day.
o Increase fluid intake and try a hot drink in the morning to wake up the
bowels.
o Try legumes such as baked beans, split pea soup or lentils.
o When possible, try to get your friend to walk or move about in bed.
Bloating
o Serve frequent, small meals.
o Keep your friend from eating just before he goes to bed.
o Avoid gas-forming foods such as carbonated drinks, beer, cabbage, broccoli,
dried beans and spicy foods.
Diarrhea
o Make sure your friend drinks lots of clear fluids. Dehydration is often a
result of severe diarrhea. Gatorade® is an excellent choice.
o Avoid milk and milk products.
o Reduce the intake of fibre, but don’t stop it all together.
o Serve only cooked fruits and vegetables.
o Go easy on the caffeine; reduce coffee, tea, cola and chocolate intake.
o Potassium is lost with diarrhea, so increase foods that are high in potassium:
bananas, potatoes (no skins), broccoli, avocados.
Heartburn
o Encourage your friend to chew his food well.
o Ask your friend to avoid lying down for two hours after he eats or keep him
sitting up in bed by supporting him with pillows.
o Avoid greasy, spicy foods; avoid sweets such as chocolate and peppermints.
Garlic, onions, alcohol and foods containing caffeine should also be avoided.
NUTRITION l 177
o Smoking may cause heartburn.
o Try using antacids three hours after a meal and at bedtime. (Liquid antacids
often taste better if they’re chilled.)
Sore Mouth,
Sore Throat
(Thrush)
Dry Mouth
o
o
o
o
o
o
o
Serve soft foods that are mashed or pureed.
Offer nutritional supplements such as Ensure® or Boost®.
Use a thick straw to make swallowing easier.
Avoid acidic juices such as orange, grapefruit and tomato juice.
Try frozen treats such as popsicles or frozen yogurt. Avoid hot foods.
Avoid spicy, crunchy foods; avoid smoking.
Avoid foods high in sugar content; sugar may increase the growth of thrush.
o Have your friend rinse his mouth before eating to help produce saliva.
Sucking on sugarless mints or sugarless candies can also help produce
saliva.
o Moisten dry foods by dipping them in liquid before eating.
o Ask the doctor to prescribe an artificial saliva spray when dryness is severe.
n
Alternative diets
Many people will praise the effectiveness of one diet over another, and there’s
no reason not to believe that what they say is true for them. What is important
to remember is that no one diet is going to perform miracles, and that different
people will respond differently to the same diet. When eating is a chore and the
thought of food is repulsive, trying different diets may be helpful, but this
should not be done without the advice of a nutritionist or a doctor. The key to
good nutrition is maintaining as balanced a diet as possible. Here are three
common alternative diets that people with AIDS have tried, followed by some
notes on alcohol and caffeine.
Yeast-free Diets
These diets aim to reduce the intake of foods that contain a yeast called
candida albicans. The theory is that toxins from candida can suppress the
immune system and cause illnesses such as thrush, headache and fatigue. Some
people say diets that are low in carbohydrates or free of yeast, sugar, fruits,
grains, nuts and milk can treat the problem.
If your friend is suffering from thrush or a yeast infection, then a low-milk,
low-carbohydrate diet may help. However, the combination of a drug therapy
and a well-balanced diet might be even more effective.
178 l NUTRITION
Macrobiotic
Diets
Macrobiotics is not only a dietary approach. It is a way of life. Macrobiotics
teaches that by changing the way you eat, you can change the way you feel.
There are many versions of macrobiotic diets. If your friend wants to try a
macrobiotic diet, make sure it allows for all major groups of food. Some of the
stricter versions of macrobiotic diets are low in calories and certain vitamins.
You should do some research when using a macrobiotic diet, and consult a
nutritionist.
Vegetarian
Diets
There are many types of vegetarians, from those who eat no animal food at all
to those who eat some animal foods. If your friend is already a vegetarian,
stick to the diet he is used to. If he wants to become a vegetarian, this is
probably not the best time to do it.
Some vegetarian diets make it very difficult to get enough protein and calories,
and protein and calories are essential to someone with AIDS who is dying.
Once again, consult with a nutritionist if a vegetarian diet is requested.
Religious and
Cultural
Considerations
Various religions and cultures have specific rules about which foods a person
can or cannot eat as well as how foods should be prepared and presented.
Make sure you are aware of any special religious or cultural needs your friend
may have with regard to food, meal preparation and eating.
Some religions require a person to fast at different times of the religious year.
While fasting at these times may be important to your friend, certain
medications he is taking might need to be taken with food. Discuss this with
your friend and negotiate a plan that works for him. A pharmacist or doctor
can tell you what kind of side effects your friend might have if he does not
take these medications with food. Remember to respect your friend’s wishes
and support him if he experiences unpleasant side effects such as stomach
upset, nausea or vomiting. (See Section 6.)
n
Alcohol
Some notes on alcohol and caffeine
There is no reason your friend shouldn’t have a drink (unless the doctor
discourages it). A drink may help your friend relax. Alcohol might increase his
appetite and add pleasure to the meal. One or two drinks a day are considered
a moderate amount.
Be mindful, however, of the effects of alcohol. Your friend may be thin and
severely wasted, and it will take much less alcohol to react with his body.
Also, make sure he is not taking any drugs that will react with alcohol. A
pharmacist can help you determine if your friend is taking any medications
that will react with or enhance the effects of alcohol. Finally, too much alcohol
consumption will reduce the amount of nutrients absorbed by the body.
NUTRITION l 179
Caffeine
Most of the caffeine we get is from coffee and tea. Smaller amounts of
caffeine are found in chocolate, cola drinks and some non prescription drugs.
A tasty, hot cup of coffee or tea can bring a great deal of pleasure, but too
much caffeine will result in the jitters, headaches, racing hearts or sleepless
nights. Cut back on caffeine if any of these problems occur.
n
Tube Feedings
Other methods of providing nutrition
In some cases, when a person cannot swallow or is in a coma, nutrition can be
given via a tube that is placed in the stomach or the intestines. The most
common form of tube feeding is a small, thin tube fed through the nose, down
the esophagus and into the stomach. (This is called a nasogastric tube.) The
tube is taped around the outside of the nose to keep it from coming out. The
short thin tube can be attached to a longer tube, which is connected to a large
bag that holds a liquid nutritional supplement. When it is mealtime, the long
tube is connected to the nose tube. Gravity or an electronic pump causes the
liquid to flow from the bag, through the tube and into the stomach.
Other kinds of tubes may be surgically implanted, into either the stomach or a
portion of the intestine. A portion of the tube hangs out of the abdomen; a
feeding tube can be connected to the tube. When not in use, the tube should be
plugged.
A nurse can instruct you on how to tube feed your friend. In some cases,
feedings will be slow and continuous. All tubing and bags should be kept
clean. A nurse can tell you how often to replace the old bag and tubing with
fresh ones. Should a nose or abdominal tube come out, remain calm; this is
not an emergency. Reassure your friend, who may become very anxious when
the tube comes out. Call the doctor and report that the tube is out.
Total Parenteral
Nutrition (TPN)
Total parenteral nutrition (hyperalimentation) is a way of providing nutrition to
the body by using a special intravenous set-up. Different solutions of basic
nutrients are prepared and administered intravenously, either continuously or
at specific times of the day. TPN in the home is common these days, and some
people with AIDS get their nutrition this way.
TPN is ordered by a physician; usually when your friend’s ability to digest or
absorb nutrients is severely compromised. Even in these circumstances, TPN
may not be appropriate. Often TPN is a temporary therapy used until your
friend is able to digest and absorb food again. The TPN set-up is looked after
by a Home Care nurse. Make sure you have the nurse teach you and your
friend about TPN. Also, when TPN is used, the doctor may order blood tests
frequently to check that the body is getting adequate nutrition.
180 l NUTRITION
n
Conclusion
There is a lot of truth in the statement, “You are what you eat.” For the person
with AIDS, proper nutrition can dramatically improve quality of life. But
malnutrition can result in serious complications that may bring suffering. An
important question is: when do you draw the line between aggressive nutritional
support and respecting the wishes of the dying person?
Eventually, most people who are dying will want to stop eating and drinking.
Deciding to respect these wishes and stop offering food and drink is a difficult
thing for anyone to do. For centuries food has been part of our healing nature,
deeply imbedded in cultural values and beliefs. We run to the bedside with
chicken soup or a special brew. Food has curing, healing powers, it’s true; but
these powers are not always appropriate.
One of the best ways to deal with this situation is to keep track of your friend’s
comfort level. When symptoms arise, deal with them in the best way you can. If
you feel a little food or drink might help, tell your friend. A sip here or a bite
there won’t prolong or hasten the dying process, but it might help to bring some
comfort. As with all other aspects of palliative care, communication is the key.
Proper nutrition will help to reduce complications and discomfort, but it will not
prevent the inevitable: death. As much as food and drink are essential to life and
can be therapeutic, they should also be enjoyed and celebrated.
References
Sheila Murphy. Healthy Eating Makes a Difference: A Food Resource Book for People Living with
HIV. Ottawa, Ontario: Canadian Hemophilia Society and Health & Welfare Canada. 1993.
Daniel Raiten. Nutrition and HIV Infection. Washington, DC: U.S. Department of Health and Human
Services, Food and Drug Administration. 1990.
Hospice King. Hospice King Manual. King City, Ontario: Author. 1984.
City of Toronto Department of Public Health. AIDS and Nutrition. brochure series, Toronto: Author.
1989.
Notes
SECTION 13 l 181
AIDS-related
Illnesses
n
Introduction
Acquired Immune Deficiency Syndrome (AIDS) can be the result of infection
with the Human Immunodeficiency Virus (HIV). HIV attacks a person’s
immune system, which is the body’s defence against illness and infection.
When someone has been diagnosed with AIDS, her immune system has
broken down to the point that she has acquired one or a group of
life-threatening illnesses, such as rare pneumoniae or cancers.
There is much hope that someday a cure will be found for HIV infection.
However, until that cure is found, some people with HIV infection will
develop AIDS. And although many people with AIDS are indeed living longer
today than they were fifteen years ago, the toll that HIV infection takes on the
body is not always preventable.
The purpose of this section is to provide you with basic information on some
of the most common illnesses related to AIDS. We will not discuss every
illness: there are far too many. We will also not discuss HIV infection and
immunology. This would involve a detailed discussion that is beyond the
scope of this manual. Suggestions on where to find this kind of information
are listed in Section 19.
In Canada, HIV infection, AIDS and AIDS-related illnesses are monitored by
the Laboratory Centre for Disease Control (LCDC). The LCDC follows much
of the work that is done at the United States’ Center for Disease Control
(CDC). These organizations have developed a list of diseases and stages of
HIV infection that are used by physicians to make a diagnosis of AIDS. These
lists group certain stages of HIV infection and related illnesses into several
categories. We have condensed these stages and illnesses into four categories:
opportunistic infections; cancers; neurological complications; and other
AIDS-related illnesses.
Each illness is briefly described followed by list of symptoms and the most
commonly used medications to treat the illness. Potential drug side effects are
not discussed in this section as there are simply too many for us to report. Bear
182 l AIDS-RELATED ILLNESSES
in mind the information provided here changes frequently. The most current
information about HIV/AIDS drugs, their side effects and many other
non-drug therapies can be obtained by contacting THE NETWORK at
1-800-263-1638.
•
•
•
•
•
•
HIV infection
Opportunistic infections
Cancers
Neurological complications
Wasting Syndrome
Women and HIV/AIDS
n
HIV infection
The Human Immunodeficiency Virus (HIV) attacks the body’s immune
system. To date, not all people infected with HIV have become ill or have
developed AIDS. Many have stayed healthy without having any symptoms
related to immune deficiency. Others had problems that went away, and some
have problems that are persistent but not life threatening.
Once inside the body, HIV can multiply or it can remain dormant for years.
What triggers dormant HIV to become activated is not yet perfectly clear, but
many hypotheses are currently being investigated. What is clear is the effect
certain drugs have on preventing HIV from multiplying, thereby reducing the
damage HIV causes to the immune system.
HIV is classified as a retrovirus. The first line of defence against HIV is
anti-retroviral (ARV) therapy. When HIV is diagnosed, a doctor will discuss
the various options related to ARV therapy. When someone starts this kind of
treatment, they usually begin with a combination of ARV drugs. Research has
shown that this is the best way to attack the virus head on.
Viral load is a term that describes the amount of virus that is in the blood. A
person’s viral load may range from “undetectable” to very high levels. Based
on the results of a viral load test, a newer kind of anti-HIV drug called a
protease inhibitor may be added to the “cocktail” of ARV drugs that a person
is taking. The addition of protease inhibitors to a person’s treatment regime
can help to reduce the viral load. However, current research has shown that not
all HIV-positive people respond to these drugs. Some have good results for a
while but then the therapeutic effect wears off. At this point, it may be time to
switch to another drug.
AIDS-RELATED ILLNESSES l 183
Anti-HIV Drugs
•
•
•
•
•
AZT (Zidovudine or Retorvir)
ddI (dideoxyinosine or Videx)
ddc (dideoxycytidine, HIVID or Zalcitabine)
3TC (Lamivudine)
d4T (Stavudine)
Protease
Inhibitors
•
•
•
•
Saquinavir (Invirase)
Indinavir (Crixivan)
Ritonavir (Norvir)
Nelfinavir (Viracept)
Although these drugs are not cures for HIV infection, they have, for some
people, worked very well at reducing HIV’s ability to attack the immune
system, and in certain cases they have helped with other AIDS-related
illnesses. However, these drugs can cause frightening side effects for some
people. Research has also shown that the virus can develop resistance to these
drugs.
When we’re dealing with any life threatening illness, it is important to
remember that drugs alone cannot help improve anyone’s condition. Looking
after one’s health with proper nutrition and rest, practising safer sex and
avoiding reinfection (with HIV as well as other infections) will greatly
improve the body’s ability to live with HIV. Avoiding other infections is
crucial. Each and every infection takes its toll on the body’s immune system.
When the immune system is vulnerable because of HIV, great care must be
taken not to enhance the problem. There is significant evidence suggesting that
repeat infections of HIV and other pathogens (bacteria, viruses, etc.), and the
stress these infections place on the immune system, can speed up the
progression of HIV infection or AIDS.
n
Opportunistic infections
The world we live in is full of bacteria and viruses that have the potential to
cause infection and make us ill. However, because most of us have healthy
immune systems, these bacteria and viruses don’t get a chance to make us ill,
even when they live inside our bodies.
When a person’s immune system has been damaged and when her body comes
in contact with certain bacteria and viruses, these pathogens may have the
opportunity to grow and multiply, thereby causing illness. These illnesses are
called opportunistic infections. As a group, these are the most common
AIDS-related illnesses we see. The following are descriptions of some of these
infections.
Candida
Albicans
(Thrush)
Thrush is the most common fungal infection we see with AIDS. It is a yeast
that infects mucous membranes in the mouth, throat, vagina and anus. It can
also infect the airways and lungs, esophagus, gastrointestinal tract and the
skin. On rare occasions, candida may enter the bloodstream and cause a
systemic (entire body) infection. Thrush can be very persistent and difficult to
treat. When it finds its way into the esophagus, eating and even breathing can
be very difficult.
Common Symptoms:
Reddened sore areas
Skin rash (warm moist areas)
Throat irritation or cough
Vaginal or anal discharge
Pain and discomfort with swallowing; difficulty swallowing
White patchy spots, which sometimes look like cottage cheese
•
•
•
•
•
•
Common Treatments:
Nystatin (Mycostatin)
Clotrimazole (Mycelex)
Ketoconazole (Nizoral)
Fluconazole (Diflucan)
Itraconazole (Sporonox)
Amphoteracin B (Fungizone)
•
•
•
•
•
•
Pneumocystis
Carinii
Pneumonia
(PCP)
PCP is caused by a protozoan parasite that lives primarily in our lungs. This
parasite is common in humans. Most people have come into contact with this
parasite before the age of four years. PCP is the most common illness in
people with AIDS, and it usually attacks only the lungs. Some people,
however, have had this infection in other parts of their bodies, for example the
lymph nodes, bone marrow, spleen and liver.
PCP often responds to treatment, and most people deal with their first
infection of PCP very well. However, some people have PCP time and again,
and with each infection a little more damage may be done to the lung tissues,
making each recovery a little more difficult. To a certain extent, PCP can be
prevented with medications. This kind of prevention is called prophylaxis.
(You may have heard a similar term used to describe condoms: prophylactics.)
Common Symptoms:
fever (often quite high), sweats
difficulty breathing (shortness of breath)
dry, unproductive cough (no phlegm or mucous)
•
•
•
First Choices for Treatment:
Septra (Trimethoprim/sulfamethoxazole)
Pentamidine (IV or aerosolized)
Mepron (atovaquone)
Dapsone
Clindamycin with primaquine
•
•
•
•
•
Prophylaxis (doses may vary):
Septra / Bactrim
Aerosolized pentamidine
Dapsone
•
•
•
Toxoplasmosis
Toxoplasmosis is caused by a protozoan pathogen called toxoplasma gondii. It
is passed to humans through contact with feces of cats that have been or are
living outdoors, from eating raw or undercooked meat and eggs, and from
drinking or eating unpasteurized milk products. It primarily affects the brain but
can be found in the lungs, eyes and internal organs. Toxoplasmosis is treatable
and preventable, so long-term drug therapy will be necessary after diagnosis.
Common Symptoms:
fever, malaise, stiff neck
dull constant headaches
sensory or personality changes
•
•
•
Less Common Symptoms of Toxoplamosis:
tremors, paralysis, seizures
confusion, disorientation
coma
•
•
•
Treatment:
Clindamycin
Azithromycin
Pyrimethamine, Sulfadiazine and folinic acid
•
•
•
Prophylaxis:
Clindamycin and sulfadiazine
Clindamycin and pyrimethamine
•
•
Cytomegalovirus
(CMV)
CMV is a member of the herpes virus family. Almost half the adult population
of developed countries (like Canada) has been infected with CMV. It is easily
spread from person to person through mucous-membrane contact (kissing, sex)
or via blood and body fluids. In people with suppressed immune systems, CMV
may infect the eyes. If not treated quickly, it can lead to blindness in a short
period of time. CMV may also affect other parts of the body. Early and
consistent treatment can help to reverse or prevent vision loss, but not all
people with AIDS and CMV respond well to these treatments.
Common Symptoms:
Eyes: decreased visual acuity, blurred vision, tunnel vision
Ears: hearing loss, altered hearing sensation
Colon: abdominal pain and diarrhea
Lungs: cough, breathing difficulties
Esophagus: burning, pain, difficulty swallowing
Nervous system: personality and behaviour changes
•
•
•
•
•
•
Treatment:
Gancyclovir
Foscarnet
Cidofovir (HPMPC)
•
•
•
Prophylaxis:
Oral Gancyclovir
Valacyclovir
•
•
Herpes Viruses
There are several herpes viruses. Those most frequently seen with AIDS are:
herpes simplex I (mouth and lips); herpes simplex II (genitals and anus); and
herpes zoster (chicken pox / shingles).
Herpes simplex I is a common infection that causes cold sores on the lips or in
the mouth. It is usually not serious, does not last long and only comes back
with a new illness or stress.
Herpes simplex II causes painful sores or blisters on the penis, vagina, anus
and genital area. It is easily spread through sexual contact when sores are
present. Herpes simplex II usually goes away with treatment. However, in
people with suppressed immune systems it can be persistent and difficult to
treat.
In adults, herpes zoster can result in either chicken pox or shingles. In the case
of shingles, the virus lives in nerve roots near the base of the spine and spreads
along nerve endings. It sometimes causes blisters and rashes on the face or
trunk of the body. These areas can be extremely painful or even numb.
Common Symptoms:
Herpes simplex I and II: painful blisters or inflamed, reddened areas at the
site of infection.
Herpes zoster: painful, blistery rash that follows the path of sensory nerves.
•
•
Treatment:
Acyclovir
Foscarnet
Famciclovir
Valacyclovir
•
•
•
•
Cryptosporidiosis
This infection is caused by a parasite (cryptosporidium) that lives in animals and
is passed to humans through their feces via contaminated food or water. The
parasite can also be passed to humans through direct contact with infected
animals. Cryptosporidiosis primarily affects the intestines and causes severe
watery diarrhea. With severe diarrhea, dehydration becomes a major concern
and should be treated with large volumes of fluids (see Section 6).
Common Symptoms:
severe watery diarrhea
abdominal cramps, flatulence
malaise
weight loss, anorexia, dehydration
•
•
•
•
Treatment:
Letrazuril
Azithromycin
Paromomycin
•
•
•
Cryptococcosis
(Cryptococcal
Meningitis)
Cryptococcosis is caused by a yeast-like fungus (cryptococcus neoformans)
contained in bird droppings. It enters the body through the lungs when we
breathe. It mostly affects the brain but can infect any organ of the body. It is
difficult to treat and in some cases will cause a serious brain infection called
cryptococcal meningitis, which can lead to death.
Common Symptoms:
fatigue
fever, malaise, nausea
headache
seizures
•
•
•
•
Usual Treatment:
Amphotericin B
Fluconazole
Itraconazole
•
•
•
Mycobacterium
Avium Complex
(MAC)
MAC is a mycobacterial infection caused by two types of bacteria:
mycobacterium avium (found in bird droppings) and mycobacterium
intracellulare (found in household dust, soil and water). We have all been
exposed to this bacterium; it is a natural environmental contaminant. In people
with healthy immune systems MAC will usually only affect the lungs, but in
people with AIDS, MAC spreads throughout the body. The MAC bacteria are
very resistant to antibiotics, and therefore the disease is difficult to treat. Many
different drugs are used together to try to relieve the symptoms associated with
MAC. Sometimes these drugs cause unwanted side effects. People with MAC
remain infective even while on drug therapy.
Common Symptoms:
Fever, night sweats
weight loss, anorexia
fatigue, weakness
diarrhea, abdominal pain
•
•
•
•
Treatment:
Clarithromycin
Azithromycin
Amikacin
Clofazimine
Rifampin
Ethambutol
Ciprofloxacin
Rifabutin
•
•
•
•
•
•
•
•
Prophylaxis:
Clarithromycin
Azithromycin
Rifabutin
•
•
•
Mycobacterium
Tuberculosis
Like MAC, tuberculosis (TB) is caused by a mycobacterium (mycobacterium
tuberculosis). Some forms of TB are contagious, that is, they can be spread
from one person to another through the air. In these cases, special precautions
are taken to prevent spreading the infection. TB usually affects the lungs, but it
can also affect the lymphatic and nervous systems of a person with AIDS. TB
may be cured with drugs when the infection is treated early. There now exists
a rarer form of TB that is resistant to the current drugs of choice. If you are
caring for someone with TB, it is a good idea to be tested for TB by your
family doctor.
Common Symptoms:
cough; fever, night sweats
weight loss, fatigue
•
•
Treatment:
Ethambutol
Isoniazid
Pyrazinamide
Rifampin
•
•
•
•
Prophylaxis:
Isoniazid
Pyridoxine
•
•
n
Cancers
About forty percent of people with AIDS will develop some kind of cancer.
The most common cancers associated with AIDS are Kaposi’s sarcoma and
certain kinds of lymphomas. An increase in the incidence of cervical cancer in
HIV-infected women has also been reported.
Kaposi’s
Sarcoma (KS)
Kaposi’s sarcoma is the most common cancer seen with AIDS. It often
appears on the skin (in the form of lesions or tumours), but KS can also appear
in the lymph nodes, mouth, gastrointestinal tract and the lungs. KS was around
before AIDS; it primarily affected older men of Jewish, African or European
descent, but this is a different illness than the KS we see with AIDS. Gay and
bisexual men with AIDS seem to be more prone to getting KS, and it is rarely
seen in women or children. KS can move slowly or very quickly. Treatment
will depend on the stage of disease and it should be noted that not all KS
lesions should be treated. In some cases, KS will also cause swelling of the
tissues (edema).
Common Symptoms:
White skin: reddish purple or bluish purple skin blotches
Dark skin: blotches are a little darker than the skin around them.
•
•
Treatment:
Chemotherapy
Alpha Interferon
Radiation therapy
•
•
•
Non Hodgkin’s
Lymphoma
(NHL)
NHL is one form of cancer that affects the lymphatic system (lymphoma).
Other lymphomas seen with AIDS are Hodgkin’s and Burkitt’s lymphoma.
Lymphomas often start as small growths found on lymph nodes (often in the
neck) or anywhere in the channels in which the lymph fluid flows. Since the
lymphatic system is connected to all parts of the body, it is not uncommon for
lymphoma to be found in the bone marrow, internal organs, gastrointestinal
tract or central nervous system. Although a life-threatening illness, lymphoma
can be treated if diagnosed early.
Common Symptoms:
enlarged lymph nodes
weight loss
fever, night sweats
•
•
•
Treatment:
Chemotherapy
Radiation therapy
•
•
Primary Central
Nervous
System (CNS)
Lymphoma
Primary CNS lymphoma usually occurs as a late complication of AIDS. It is
relatively rare, affects the brain and can be very difficult to treat. Some
treatments, such as radiation and certain drugs, may help to relieve symptoms
and prolong life.
Symptoms:
headaches
confusion, lethargy, memory loss
paralysis
changes in personality or behaviour
seizures
•
•
•
•
•
Treatment:
Radiation therapy
Chemotherapy
•
•
n
Neurological complications
Neurological complications in people with AIDS may result from
opportunistic infections, cancers, the HIV infection itself or other metabolic
states related to illness. The nervous system may also be affected by the toxic
effects of various drugs and treatments. The most common complication,
AIDS dementia complex, is discussed in Section 14.
Peripheral
Neuropathy
Little is known about peripheral neuropathy or its treatment. It has become one
of the most difficult AIDS complications to deal with. In some people with
AIDS, long-term use of ARV therapy may result in peripheral neuropathy
(pain or burning in the feet) as well as muscle weakness and deterioration.
Symptoms:
painful burning or tingling, particularly in the feet
hypersensitivity, sharp shooting pains
numbness, weakness
sensory deficits
•
•
•
•
Treatment:
Amitriptyline (+ Acupuncture)
Narcotics
Phenytoin
Carbamazepine
•
•
•
•
Progressive
Multifocal
Leukoencephal
Opathy (PML)
PML is caused by the JC papovirus. Approximately seventy percent of adults
have been infected with this virus and have developed natural immunity. In
PML, the JC virus is reactivated and attacks the cells in the brain that produce
myelin. Myelin is a substance that wraps around a nerve fibre like a protective
sheath. Over a slow and relentless progression of time, PML will remove the
sheath from the nerve fibres in the brain, causing a series of sensory and motor
problems. The disease will slowly progress until death; however, brief periods
of remission have been documented. Current treatments are usually not
effective.
Symptoms:
gait disturbances
visual loss, double vision, headache
memory loss and other cognitive disturbances
weakness and lack of coordination of the limbs
changes in ability to speak or create language
delirium
end stages: paralysis, coma
•
•
•
•
•
•
•
Treatment:
Cytosine arabinoside
•
Wasting
Syndrome
Involuntary weight loss, or wasting, is one of the most common manifestations
of HIV infection. It can occur at any stage of HIV infection but is usually most
severe in the later stages of illness. Although it is difficult to reverse, many
people with HIV infection and AIDS have had tremendous success with
reducing weight loss or gaining weight.
Chronic unintended weight loss is associated with malabsorption, which can
contribute to increased immune suppression. Absorption is the body’s ability
to take in nutrients necessary for maintaining life and health. Other factors
associated with wasting syndrome are diarrhea, reduced food intake and
altered metabolism. All these factors can be the result of one or more
AIDS-related illnesses or of HIV infection itself. Some people have used
nutritional supplements, vitamins or appetite stimulants, such as the drugs
Megace or Dronabinol, to assist with weight gain.
n
Women and HIV/AIDS
In recent years, the rate of HIV infection in women has grown (and continues
to grow) at alarming rates. Despite this growth in the rate of HIV infection,
little is known regarding the physical manifestations of HIV infection and
AIDS specific to women. Most of our AIDS knowledge is based on
observations on men. And although some progress is being made, women
continue to be under represented in AIDS-related research, such as clinical
treatment trials. Therefore, it is important that we highlight some of the known
female-specific symptoms associated with HIV infection. (Section 19 lists
readings and other resources where you can find more detailed information
about women and HIV/AIDS.)
Opportunistic
infections
Cancers
Generally, women with HIV infection or AIDS are just as likely to contract
opportunistic infections as men. However, fungal infections, particularly
vaginal yeast infections caused by candidiasis, are very common and can be
difficult to treat. PCP and other (bacterial) pneumoniae are also common and
can be more severe than those in men. Similarly, Herpes infections (all types)
in HIV-positive women tend to be more severe, last longer, and more resistant
to usual drug therapy.
Although few studies have been conducted on women with Kaposi’s sarcoma
(KS), KS is relatively rare among women. However, it has been noted that
women who are partners of bisexual men are four times more likely to develop
KS than women whose partners are not bisexual. In women, KS is generally
more aggressive than it is in men; the disease progresses more rapidly and the
prognosis is often poor. Since few research studies have been conducted, we
know very little about HIV-related lymphomas in women with AIDS. Other
gynecological cancers are discussed below.
Gynecological
Conditions
The most frequently observed gynecological conditions in women with HIV
infection or AIDS are: pelvic inflammatory disease; cervical abnormalities and
cancers; and vaginal fungal infections (see Candida in this section).
Pelvic Inflammatory Disease (PID): PID refers to infection of the upper
genital tract (uterus, fallopian tubes and ovaries). It is usually caused by
complications of sexually-transmitted diseases (e.g., chlamydia and
gonorrhea) as well as the use of intrauterine birth control devices (IUDs).
Although there is some evidence suggesting an increased incidence of PID in
women with HIV infection, the interaction between the two conditions
remains unclear.
Cervical Abnormalities and Cancers: The most common cause of cervical
abnormality is related to infection with the human papillomavirus (HPV).
HPV infection and cervical abnormality may be detected through PAP smears.
Some studies have shown that women with severe immunodeficiency as a
result of HIV infection have an increased risk for HPV infections, and,
consequently, cervical abnormalities which range from benign lesions such as
genital warts to advanced cervical cancer. Studies have shown that women
with HIV infection may be five times more likely to develop cervical cancer
than women who are HIV-negative. Similarly, cervical cancers in
HIV-positive women tend to be more severe, extensive and may hold a poorer
prognosis than those in HIV- negative women.
References
American Foundation for AIDS Research. AIDS/HIV Treatment Directory. New York: Author.
January 1997.
Project Inform. The HIV Drug Book. New York: Pocket Books. 1995.
Tobin, M.A., Chow, F.J., Bowmer, M.I., & Bally, G.A. Toronto: A Comprehensive Care Guide for
the Care of Persons with HIV Disease, Module 1: Adults — Men, Women, Adolescents. The
College of Family Physicians of Canada. September 1993.
with HIV Disease — Module 4: Palliative Care. Toronto: Authors. 1995.
Notes
SECTION 14 l 195
AIDS Dementia
Complex
n
Introduction
Of all the illnesses related to AIDS, AIDS dementia complex can be one of the
most difficult complications to cope with. Like AIDS itself, AIDS dementia
complex results in a series of losses that shatter many hopes and dreams. It
attacks and sometimes destroys a part of us we consider vital to being human:
the brain. For many of us, the fear of losing control over our mental abilities is
the thing we dread most. AIDS dementia complex affects the mind, and can
also destroy the control we have over our bodies.
This section will provide you with some insight into the difficulties that arise
from AIDS dementia complex. It will also provide you with some hints on
how to care for someone with AIDS dementia complex, and how to cope with
your own responses to this debilitating disease.
n
What is AIDS dementia complex?
AIDS dementia complex (ADC), also referred to as HIV dementia and HIV
encephalopathy, is the most common neurologic complication of HIV
infection. The link between ADC and HIV infection in the brain or the body
remains uncertain. Although most people with severe ADC will have HIV
infection in the brain, some with milder ADC will show no active HIV
infection within the brain.
Diagnosis
A diagnosis of ADC carries with it a powerful stigma: mental incompetence.
This can have a devastating impact on your friend. Being labelled as someone
who is unable to make informed decisions or manage his affairs is a profound
loss of a person’s autonomy and personal sense of control. There will be legal
and financial considerations requiring thoughtful and just attention. However,
the first and most important issue to address is whether or not ADC is indeed
the correct diagnosis. Once someone has been labelled “demented,” it’s
extremely difficult, if not impossible, to reverse the impact of such a stigma.
196 l AIDS DEMENTIA COMPLEX
Not all neurological or psychological problems that occur are the result of
AIDS dementia complex. For example, the symptoms of depression, which
are similar to those of ADC, are often attributed to dementia and left untreated.
Thus, a person might be forced to live with depression unnecessarily.
Depression can be treated with the support of a health professional.
Likewise, dementia-like symptoms may arise as a result of changes to your
friend’s metabolism. These changes can be the result of other disease
processes or reactions to the medications your friend is taking. Nutritional
deficiencies can also cause metabolic changes.
The reverse of these concerns is also true and must be considered when
looking at a diagnosis of ADC. ADC can cause or heighten certain symptoms
and behaviour changes that are related to emotions (for example: depression or
anger), or thought processes, thereby suggesting a mental health concern rather
than a symptom of ADC. Thus, the focus of care becomes your friend’s mental
health with a potential expectation that the problem(s) might be resolved with
treatment. Instead, ADC is really the problem and as it progresses, everyone
involved becomes discouraged and confused because the care plan isn’t
working.
When multiple diagnoses are involved at the same time (for example, mental
health, substance use and HIV infection) an accurate diagnosis of ADC
becomes even more difficult. Obviously, it is not your responsibility to make
the diagnosis, however, it is your responsibility to consider the stigmas that
dementia and mental health carry and to protect your friend’s confidentiality.
To label someone incompetent when they are not is a violation of their dignity
and personal autonomy.
Characteristics
of ADC
AIDS dementia complex, which may in fact represent more than one type of
disease process, is characterized by:
•
•
•
•
decreased concentration and rapidity of thought
loss of memory
loss of interest, apathy
slowness of motor movements
The list on the next page defines the symptoms of ADC as the disease
progresses. While you are reading the chart, bear in mind that it represents a
continuum of stages related to ADC, and that the differentiation between
stages may not always appear clear and easy to identify. Other symptoms and
concerns related to ADC are discussed later in this section.
AIDS DEMENTIA COMPLEX l 197
Stage O (Normal):
Normal mental and motor function
Stage 0.5 (Subclinical):
Minimal or equivocal symptoms of cognitive or motor dysfunction. In other
words, mild signs, but without impairment of work or capacity to perform
activities of daily living (ADL); gait and strength are normal.
Stage 1 (Mild):
Signs and symptoms of intellectual and motor impairment, but able to perform
all but the most demanding aspects of work or ADL; can walk without
assistance.
Stage 2 (Moderate):
Cannot work or maintain the more demanding aspects of daily life, but able to
perform basic activities of self-care; can walk, but may require a cane.
Stage 3 (Severe):
Cannot follow news or personal events; cannot sustain complex conversation;
cannot walk unassisted; slowing and clumsiness of arms.
Stage 4 (End Stage):
Nearly vegetative; very limited intellectual and social comprehension levels;
nearly or absolutely mute; paraplegic; incontinent of both bowel and bladder.
n
Treatment
At present, there exists no cure for ADC. However, some success has been
achieved at reducing symptoms and prolonging the progression of ADC with
drugs like AZT and ddI. A few people have had some success with the drug,
Peptide T. Given these limited possibilities, the focus remains on symptom
management and developing appropriate strategies for coping with ADC.
n
Common concerns with ADC
Before looking at some of the specific concerns and problems associated with
ADC, it will be helpful for you to consider the following general suggestions.
1. Once a sound diagnosis has been made, avoid denying the fact that ADC
may be present. Pretending that your friend does not have ADC when he
does will lead to many difficult problems. Likewise, do not support your
friend’s denial should he believe that ADC is not a problem. Don’t try to
force your friend to accept the presence of ADC; instead, try to focus on
his abilities and promote his independence.
2. Be informed. The more you know about ADC, the more effective you will
be at dealing with any of its problems.
3. Share your concerns. Talk to your friend. Many people with mild ADC
can help to manage the problems the disease might cause. They need to be
part of the solution so it works best for them, not just for you. Talk to
others on the care team. Share your observations and experience: working
as a team has marvellous benefits.
4. Solve your problems one at a time. Don’t tackle everything at once. Move
gently with your ideas. Try to single out things that can make life a lot
easier, and work on them. Changing small things can sometimes make a
very big difference.
5. Get enough rest. Don’t do more than you are capable of doing. Take the
time to recognize when things are getting out of hand. If you find yourself
more irritable than usual; tiring more easily than before; wanting to “get
out” of the situation, it’s probably time to take a break. Reach out for help
when you need it.
6. People with early to mid stages of ADC have good days and bad days.
This means life with ADC will be full of change. Be flexible and creative.
Use your common sense and imagination as you help your friend adapt to
the changes in his life that are the result of ADC. Accept change; don’t
fight it. If someone wants to eat with his fingers because he can’t use a
fork or spoon, give him finger foods: don’t lecture him about table
manners. Asking someone with ADC to learn new skills may be
unrealistic, frustrating and simply unfair. Look for things he can still do,
and focus on them.
7. Maintain a sense of humour. Laughter is a wonderful form of medicine. A
look to the lighter side of life will often do wonders in lifting away the
heaviness of any problems you might be facing. Your friend will probably
benefit from some humour as well; remember that he is still a person.
8. Establish an environment that provides for as much freedom as possible
while still offering the structure that many confused people need. Your
friend needs to maintain as much control as possible over his environment.
Do things the same way and at the same time each day. Keep the
surroundings reliable, simple and safe.
9. When appropriate, keep your friend active but not upset. However simple
the activity, being active will help him to feel involved and that will let
him know his life has meaning. At the same time, too much stimulation or
activity may upset him.
Memory
Problems
People with ADC may forget things quickly, and by quickly, we mean in two
seconds. Their capacity for recent, short-term memory will often diminish,
while their ability to remember things from long past might remain intact. This
has to do with the way the brain receives and stores information; it is not
something the person does deliberately.
Life becomes very frustrating and puzzling when someone can remember
events long past but has no idea what happened three minutes or two hours
ago. Things like time, people and places are often quickly forgotten. There is
much you can do to support your friend while he copes with his memory loss.
Some suggestions are listed below. You will probably think of others that will
help; share your ideas with the care team.
What To Do
People who are able to read can help you with caregiving tasks and chores if
you write out instructions. Write down names and often used phone numbers.
Should your friend be left alone in the home, make sure he has the name and
phone number of someone he can reach clearly marked in several places. If
you will be gone at mealtime, leave a reminder to eat or give your friend a
telephone call.
o Keep clocks and calendars in view to help your friend remember what time
and day it is. Mark the days off as they pass. Have your friend help you to
make simple lists of daily activities, and keep them where he can easily see
them. A regular routine is much less confusing than frequent changes.
o Make sure familiar objects (pictures, drinking glass, radio) remain in their
usual places. A tidy, uncluttered house is much less confusing, and
misplaced items will be easier to find. Some caregivers have found that
putting labels on things also helps. Content labels on cupboards and
drawers may make things easier to find. Remember to get your friend’s
permission before you start labelling everything in the house.
o As ADC progresses, your friend may lose his ability to read or to make
sense of what he reads. At this point, written reminders will only cause
more confusion. You may want to use pictures instead, for example, a
picture of a toilet on the bathroom door.
o People are often more confused at night, and total darkness can be
confusing and very frightening. Night-lights can help.
o Keep pictures of loved ones and friends close by. They may help your
friend remember who these people are and can stir pleasant memories.
However, be careful with your assumptions about these memories; they
could equally be unpleasant. Check with your friend first.
Overreacting
Brain diseases like ADC can often make people very upset, and many people
with ADC will experience rapidly changing moods. Confusion, strange
situations, noises, being asked several questions at once or being asked to do a
task that is too difficult for a person can precipitate these reactions. When a
situation overwhelms the brain of a person with ADC, he may overreact.
Your friend may blush, cry, become agitated or angry or just plain, stubborn.
Some people will deny what they are doing, or accuse others. Occasionally, a
person may strike out at those who are trying to support him. Most of the time,
these reactions are directly related to the disease process, and should not be
considered as personal attacks.
Some people with ADC may, at times, react rather violently. Sometimes, these
episodes are unpredictable and cannot be avoided. In most cases, these
episodes last only for a few seconds. When they occur, it’s best to stay away
and just let the episode pass. Do not try to stop it, and avoid getting involved.
Reacting to a violent outburst only makes it worse. Stand back and make sure
that both you and your friend are out of danger. Should your friend have
repeated episodes of violent overreacting, report them to the doctor or Home
Care nurse, describing exactly what happened and what might have
precipitated the event. They may be able to explain what is going on and what
you can do to avoid further outbursts.
All of us have the potential to overreact when bombarded with more than we
can manage. People with ADC have the same reaction to simple, everyday
experiences. However, we are not always as nice as we can be. Some of us are
at times, nasty, and need to be reminded of that.
In the case of ADC, it is extremely difficult to determine whether a reaction is
the result of illness or a characteristic of a person’s personality. Never assume
that someone has crossed the line. (There may be reasons why your friend is
reacting the way he is. Some of these reasons are discussed in Section 10.)
Coping with your friend’s reactions takes a great deal of patience and
understanding. Here are some suggestions for avoiding or lessening
overreactions.
What To Do
First and foremost, you need to accept that overreactions are not just
expressions of stubbornness or nastiness, but are a response your friend cannot
control.
o Try to stay calm and quiet. Reacting to your friend’s reaction will only
make things worse. Reassure your friend that his panic is not unusual and
that you understand his fear.
o When your friend becomes particularly agitated, remove him from the
situation in a quiet, unhurried way. The storm will usually be over as
quickly as it started. Your friend will likely forget it ever happened.
o Stick to routines and use your aids (for example, the labels) consistently.
This will help to reduce confusion and the possibility of a reaction.
o Give your friend time to respond. Wait for him. Don’t rush him. Praise him
when he does something right. Simplifying tasks will help to avert some
reactions.
o Gently holding his hand may help to calm your friend. Some people
respond to being slowly rocked. (Be careful: others will feel restrained and
be more upset.)
o Try not to express your frustration or anger to your friend; it will only
further upset him when he cannot understand your reaction. Avoid trying to
reason or argue with him when he’s upset; this will only add to the
confusion.
o You may lose your temper. When you do, take a deep breath and try to
approach the problem calmly. Your friend will probably forget your anger
much more quickly than you will. Thoughtfully examine what is
happening; try to identify the problem and consider how you can change it.
Speech and
Communication
Problems
There are two kinds of communication problems you may have with someone
who has ADC: problems your friend has making himself understood, and
problems he has understanding you.
Problems with being understood:
Some people have difficulty finding words. They may not remember the word,
or they may have difficulty pronouncing it correctly. They may substitute a
word with a similar meaning. For example, your friend may say “music thing”
for “piano.” Or he may simply describe what the thing does.
Another difficulty people may have is with communicating their thoughts.
Some people cannot communicate the whole thought but can only express a
few words in the thought, and not in full sentences. Sometimes people are able
to speak quite fluently, and although what they say at first seems to make
sense, upon reflection it may not be understood. Sometimes you can
understand what your friend is saying if you know the context of what he is
trying to say.
Sometimes there are severe language problems, and a person may remember
only a few key words, such as “no,” which he may use whether or not he
means it. Eventually, he may not be able to speak at all. This can be
devastating for caregivers. Let yourself grieve the loss of companionship.
What To Do
When your friend is having difficulty finding the right word, it may be more
helpful for you to supply it than have him search and struggle. Correcting him
may also be helpful, but if doing so upsets him, it’s best to ignore his mistakes.
o When you can’t understand your friend’s word, ask him to describe or
point to the object.
o If your friend is having difficulty expressing an idea, you may be able to
guess what he is trying to say. Ask him if you’ve guessed correctly. If you
act on an incorrect guess, you may add to his frustration. Be careful about
repeating what he says for clarification. Constant repetition can be very
annoying.
o As your friend’s ability to speak diminishes, simplify your questions.
Questions that require a simple yes or no or a nod of the head are best.
Problems with understanding others:
Many people have problems understanding what others are telling them. Too
often we may think they are being uncooperative. Also, people with ADC may
quickly forget what they did understand. For instance, when you give your
friend a careful explanation, he may forget the first part of the explanation
before you finish.
Some people have trouble understanding written information even though they
can still read letters or words. Your friend may be able to read a list of
instructions but not understand what they mean. Reading and understanding
are two different skills, and it’s not always safe to assume your friend can
understand or act upon messages he can hear or read.
What To Do
Make sure your friend hears you. Lower the pitch of your voice. A raised tone
can be a signal that you’re upset.
o Look directly at your friend when you are speaking. You want to know that
he is paying attention. If he is not, try again in a few minutes.
o Eliminate distracting noises or activities. This avoids confusion and will
help your friend sort things out.
o Use short words and short, simple sentences, yet remember that your friend
is still a person. Using baby talk is an affront to his dignity.
o Ask only one question at a time. If you repeat the question, try to repeat it
word for word. Avoid questions that are loaded with choices; use one
choice per question. A good example: “Would you like an apple?” (This is
a yes or no question.). A poor example: “Would you like an apple, a pear or
a banana?” (This is a question with too many choices.)
o Speak slowly and wait for your friend to respond. His response may be
much slower than what seems natural.
o Be careful when using nonverbal ways of communicating. People who
have difficulty understanding language often retain their ability to
understand body language. Be mindful of the messages you send with your
body; they may upset or agitate your friend.
Problems with coordination:
In some cases, a person with ADC may understand what he wants to do with
his hands and fingers, but the message just does not get through from the brain
to the fingers. The medical term for this is apraxia. An early sign of apraxia is
a change in a person’s handwriting. As ADC progresses, a person’s ability to
coordinate movement diminishes. This may happen gradually or quite
abruptly. Many people with ADC eventually have difficulty walking. This
starts with unsteadiness, and may progress to needing assistance with walking.
In later stages, people may not be able to walk or move at all.
The loss of coordination and manual skills may lead to problems with the
activities of daily living, such as bathing, dressing and eating. Some activities
may have to be given up, while others can be modified. Dialling a telephone,
for instance, may be too difficult a task, and using a push button telephone
could be a solution. The key is not to change the task, rather to simplify it.
Learning a new task altogether is much more difficult than completing an old
one that has been modified or simplified.
An occupational therapist is a professional trained in helping people to make
the best use of their motor skills. Such a therapist should be consulted and
asked to visit the home when problems with coordination become apparent.
Many techniques and devices can help with coordination problems; the
occupational therapist can show you and your friend how to use them.
Sometimes a person can do something one time and not another time. This
may be a characteristic of the ADC, and not laziness. Being hurried, watched,
tired or upset can affect a person’s ability to do things. Some people have
tremors: shaking movements of the hands and body. An occupational therapist
may be able to show you how to minimize the effects of tremors.
In the later stages of ADC, extensive loss of muscle control occurs. Your
friend may bump into things or fall down. Safety becomes your primary
concern. Muscle weakness and stiffness may also occur, so regular sessions of
exercise may be necessary. A physical therapist can help you here. Have the
therapist come to the home and show you some exercises.
What To Do
Modify, simplify and break tasks down into small, easy to follow steps. It may
help if you demonstrate the task first and gently remind your friend of each
step.
o If your friend becomes stuck in a task, gently get him going again by
moving his hand or arm. Beginning the motion seems to help the brain
remember the task.
o Keep the atmosphere relaxed. People often feel tense, worried or
embarrassed about their clumsiness, and may even try to conceal their
limitations by refusing to participate in activities.
o Should your friend become stuck when you’re helping him to walk, tell
him to walk toward a goal or object. This may help get him going again.
Problems with
the Sense
of Time
Most people have an uncanny ability for judging the passage of time. This is
one of the first losses of a person with ADC, and is usually connected to the
loss of recent memory. Your friend may repeatedly ask you what time it is or
feel that you have left him for hours when you’ve only been out of the room
for a few minutes. When a person can’t remember what happened a few
minutes ago, judging the passage of time is virtually impossible.
This loss of time sense seems to also affect the body’s internal clock, which
usually regulates the times we eat and sleep. Thus, your friend’s daily schedule
may change drastically. He may ask for a full-course meal at three in the
morning. This can be very irritating when you are trying to sleep.
Not being able to keep track of time can be worrisome to the forgetful person.
Many of us, throughout our lives, are dependent upon a regular schedule.
When we don’t have a regular schedule, or when we can’t perceive that
schedule, we might worry that we have been forgotten.
What To Do
Follow the hints about how to deal with memory loss. This might help your
friend keep track of time.
o Your friend might be able to read the clock and say, “It’s three-fifteen.”
Don’t assume he can understand what this means. Try to associate the time
with a regular routine. “It’s twelve o’clock — lunchtime.”
o Be flexible with your schedule, but don’t change routines too drastically.
Change may increase your friend’s confusion and diminish his ability to
keep track of time.
o Be prepared to make changes to your schedule when caring for your friend.
Know your limitations, but understand that little stays predictable when the
person you are caring for is forgetful.
Safety
Concerns
As ADC progresses, concerns regarding your friend’s safety may arise. For
example, your friend may forget he has left a pot cooking on the stove or a
burning cigarette unattended. He may go for a walk or out to run an errand and
forget where he is going or how to get home. He may forget to take his
medications or decide not to take them without understanding the implications.
Although rare, ADC may be the only AIDS-related problem your friend is
living with. This could mean he is fit and able to get around and in full control
of his physical capacities. However, his mental capacity is such that he
requires constant supervision. This will undoubtedly lead to conflict between
promoting your friend’s independence and protecting him from harm. The
same may be said for you and other caregivers if your friend has a tendency to
become aggressive or violent when confused.
What To Do
Do not deal with these problems alone. Get help from a health professional
with experience in caring for demented clients. Work with your friend, the
partner or spouse, family and other members of the care team to come up with
a plan that addresses the safety concerns.
o When your friend wants to go out, ask if you can go with him. Make sure
your friend always carries identification, including the name and phone
number of someone who can be called for assistance.
o It may be necessary to arrange for constant supervision. A home care nurse
can help you with this. Another option, if available, is to consider having
your friend enrolled in an adult day care program, which might help reduce
the care load on the family and the care team. This can also help with
couples where one partner has to go to work in order to pay the bills.
o Consult with an occupational therapist to assess the home for safety
hazards and make the necessary changes based on your friend’s specific
condition. Examples of safety precautions include such things as: safely
storing all medications, removing knobs from the stove when you need to
leave your friend alone, setting rules about supervised smoking, etc.
o Maintaining your friend’s safety is a primary concern. However, should
your friend question your actions or choose not to follow the plan there is
little you can do other than report this to a family member, the care team
leader and your friend’s doctor or nurse. If absolutely necessary, your
friend’s physician has the authority to take the appropriate action to protect
your friend (and others) from harm. Your struggle will be coping with the
feelings you have about what needs to be done and wanting to respect your
friend’s autonomy.
Legal and
Financial
Concerns
When a diagnosis of ADC has been made, it is important to ensure that
someone has helped your friend put his affairs in order. Hopefully, this will
happen before ADC has progressed to the point where your friend is unable to
participate in these kinds of decisions. Since the laws, regulations and
procedures regarding the processing of certain legal matters vary in
jurisdictions across Canada, we strongly suggest you seek the assistance of
someone familiar with these issues. Contact your local AIDS organization or
hospice program to find out more about who can help with the following:
o
o
o
o
o
Will
Living will or advance directives
Power of attorney (financial / legal)
Power of attorney for personal care
Appointment of a personal representative (if admitted to a psychiatric
facility)
o Trusts and joint ownership of property and assets
o Assignment of a public trustee
Ensuring that all the necessary legal safeguards are in place is part of holistic
palliative care. Although this is not your responsibility as a volunteer on a care
team, it is reasonable for you to ask whether these concerns have been
addressed. You may be able to help find someone who can help with this
important aspect of your friend’s care.
n
Caring for yourself
First, recognize that your own care is important. You will be of no use to your
friend if you are exhausted and overwhelmed.
Caring for someone who has ADC can be extraordinarily demanding and
frustrating. There may be times when you feel you can’t do anything right.
You may find yourself on edge or ready to quit. This is not unusual.
Similarly, there may be times when you feel like you are going crazy or you
lose your temper with your friend. Remember, whenever your friend does
something that upsets you, he’s probably not doing it on purpose. Also
remember, that if you lose your temper, it’s not the end of the world. We are all
human and have our limitations.
The key to survival is to take time out. Build several time-outs into your
weekly schedule. If you need to, take time out even when you are unable to
leave your friend’s home. Find a moment and a place where you can be alone
and at peace. Do whatever it takes to let go of your frustrations. Talk on the
phone or go for a walk with a friend or someone on the care team. Get help
when you need it.
You might think that if you isolate yourself from the situation, the problems
will go away; they won’t. Look at what is bothering you most and deal with
that first. Then tackle the other problems one at a time. Don’t be ashamed
about asking for help, going to a counsellor or joining a caregivers’ support
group. These resources are there to help you.
Learn to recognize warning signs in yourself that indicate outside assistance is
needed. These warning signs include:
o
o
o
o
o
o
Increasing feelings of isolation and social withdrawal
Frequent crying spells
An increase in irritability
Sleep disturbances
A reliance on tranquillizers or alcohol
A total devotion to the care of your friend to the exclusion of all other
activities.
Remember that ADC is a very difficult illness to cope with. Praise yourself
and those you work with often.
References
Canadian Psychiatric Association. Living with HIV and Dementia: A Guide for the Extended
Family (brochure). Ottawa: Author. 1992.
Family Survival Project for Brain-Impaired Adults. AIDS Dementia Complex: Training Manual.
San Francisco: Family Survival Project. 1990.
Nancy L. Mace and Peter V. Robins. The 36-Hour Day: A Family Guide to Alzheimer’s Disease,
Relating Dementing Illnesses, and Memory Loss in Later Life. Baltimore: The John Hopkins
University Press. 1981.
Notes
SECTION 15 l 209
Medical
Emergencies
n
Introduction
Your team is caring for a person who, eventually, is expected to die. This will
be hard to accept at first. But as you work together with each other and with
your friend, the idea of death will become more normal and comfortable for all
of you. It will still be sad, but it will be less frightening. What may remain
frightening is the possibility that the person you are caring for might die in an
unexpected way. Your friend may accept the idea of a peaceful death, and you
may be ready to help her through it calmly. But neither of you may be ready
for a medical emergency that could lead to sudden death.
•
•
•
•
n
Understanding what your friend expects of you in an emergency
Being prepared to deal with emergencies
Knowing what to do right away if something unexpected happens
Knowing what to do if you have to take your friend to a hospital
emergency room
Understanding what your friend wants
Some medical emergencies can be a matter of life or death. When they
happen, we automatically try to do everything possible to save the person’s
life. But this may not always be the best thing to do for someone who has
accepted the idea that death may come soon. Thoughtful consideration must be
given to how the person you are caring for wants to die.
For some people, it may be very important to die at home. They might not
want to be taken to a hospital — even in an emergency — no matter how
serious. “When my time comes,” they say, “that’s it; just let me die, whatever
the circumstances.”
Other people may fear that death will be sudden or painful. Even a person who
wants to die at home might not want to die there right now, or in great pain.
210 l MEDICAL EMERGENCIES
Few people, for instance, would choose to die from suddenly choking on food.
Death is very frightening, and it could happen when a person expects to have
more time to be with friends or family. Dying from an injury such as a fracture
or a serious fall could be a long and painful process. Many of us would prefer
to have an injury treated and the pain reduced, even if it means going to
hospital. In any case, remember that you must do what your friend says. Any
person has the right to refuse any medical treatment.
Here are some ways to make sure your care team does what your friend wants
you to do in a medical emergency:
1. Discuss the possibility of emergencies with your friend. You can ask,
“What if this happens . . . what would you like us to do?” This is best done
by someone very close to the person being cared for. The doctor may also
be involved. The doctor is most likely to know what kinds of emergencies
might occur, and has to know what your friend’s wishes are. If Home Care
nursing is involved, the nurse(s) should also be aware of your friend’s
wishes.
2. Make sure everyone on the care team knows what is expected in an
emergency. Discuss possible emergencies in your care team meetings, and
make clear what your friend wants to have happen. Record your friend’s
wishes on a sheet of paper and keep it at the front of this manual. That way
everyone will know what she wants.
3. Respect your friend’s wishes. The person you are caring for may have said
that in some situations she must be allowed to die. This may be very
difficult for you to accept. If it is, don’t be afraid to ask other care team
members for emotional support and guidance in coming to terms with
what your friend wants.
4. Be ready to defend your friend’s wishes. An emergency may happen when
a doctor or nurse is there. Since they are trained to respond immediately,
you must make sure they know and respect your friend’s wishes. If your
friend has signed a Living Will or Advance Directive, make sure the
doctor reads it and respects its instructions. Be an advocate.
5. Accept that your friend may change her mind. In the midst of a crisis, a
person who has said she doesn’t want emergency care may suddenly
decide she does. She may cry, “Help me, save me; I don’t want to die right
now.” Hear your friend, talk to her, and go with what she says at the time.
As an advocate, your responsibility is to uphold your friend’s wishes. But
in situations like these it is a good idea to contact the person who has
power of attorney for your friend. This person will have certain legal rights
to act on your friend’s behalf.
MEDICAL EMERGENCIES l 211
n
Being prepared for emergencies
Your best defence in coping with medical emergencies is to be prepared. This
means having some basic skills you could apply in any emergency situation,
and knowing specific details about how to help your friend.
Basic Skills
First Aid
Courses
Three basic skills will help you deal with any medical emergency:
•
Respect for the person needing care. In the case of your friend, this means
knowing and honouring wishes about how she does, or does not, want to
die.
•
Calmness. It is very easy to panic in the face of an emergency. This is bad
for you and your friend. It is all right to stop for a second, take a deep
breath, collect your thoughts and remember that you probably do know
what to do.
•
Knowing Universal Precautions. These are simple, standard procedures
for preventing infection. (Universal Precautions are outlined in Section 4.)
It is a good idea to take courses in first aid and CPR (cardio-pulmonary
resuscitation). They will help you in your work on this care team, and will
serve you and others well throughout your life. Your local branch of the Red
Cross or St. John’s Ambulance can tell you about such courses and let you
know how to sign up for them.
n
Seizures
What to do in specific emergencies
Seizures are fits or convulsions. They can be caused by various diseases, most
commonly epilepsy. In people with AIDS, seizures can be caused by diseases
that affect the brain. Usually, seizures are rare, because the people most likely
to have them take medications to prevent them. But for some people such
medication doesn’t work, and seizures may be common.
There are several types of seizures. The most mild are short episodes of
confusion or forgetfulness; blanking out. These kinds of seizures are
sometimes called “focal” or “petit mal” seizures. Some seizures simply cause
part of the body to move in a repeated but uncontrollable way, a twitch.
A convulsion is a very serious seizure, sometimes referred to as a “grand mal”
seizure. A person having a convulsion loses consciousness and may become
rigid or fall down. Her muscles will begin to jerk and her teeth will be tightly
clenched. Her breathing may become irregular or even stop briefly, and she
may lose bladder or bowel control.
Seizures, especially convulsions, can be dramatic and frightening, especially if
you have never seen one before. But your fears can be reduced if you know
what is happening and how to deal with it.
What To Do
Remain calm. Once a seizure has started you cannot make it stop. Seizures
will stop on their own after a few seconds or minutes.
o Protect the person from injury. If your friend is standing or sitting when a
convulsion begins, help her fall gently to the floor. Keep her head from
banging on anything. On the floor or in bed, move objects that might injure
her out of the way. Remove eyeglasses and loosen tight clothing. Do not try
to restrain her movement. Let the seizure happen.
o Make sure her breathing is not obstructed. Try to keep her on her side so
saliva can flow out of her mouth, not down the throat. Do not try to force
open the jaw or put a hard object into her mouth to keep it open. This is
dangerous. You may damage the teeth or gums, and your friend may break
whatever you use into pieces small enough to cause choking. It is also
unnecessary; your friend will not swallow her tongue.
o Stay with your friend until the seizure stops. When it does, make sure her
breathing is all right. As she regains consciousness, she may be confused or
frightened, and she likely won’t remember what happened. Speak gently
and reassuringly. Convulsions are exhausting. Your friend may have a
headache. She will be very tired, and will need rest or sleep.
o If a seizure lasts or recurs, call the doctor. A seizure should not last more
than five minutes. If it does, or if your friend does not regain consciousness
when it stops, or if another seizure starts within ten minutes, get help
immediately.
Reporting seizures:
When someone has a seizure, especially for the first time, there are a few
things the doctor will need to know in order to understand why it happened or
how to prevent seizures in the future. So take note and report to the doctor:
•
How did the seizure start? Was it after a certain activity, or an episode of
anxiety or stress?
•
•
How long did the seizure last? If you can, time the seizure.
•
How did your friend respond when the seizure was over?
How severe was the seizure? Did your friend just black out? Did the whole
body jerk, or only one part?
Preventing seizures:
The best treatment for seizures is prevention. They can usually be avoided if
medication is taken regularly. However, for a very small number of people
with AIDS, seizures can be hard to control. Here’s what you can do to help:
o Make sure medications are taken exactly as prescribed. Never change the
dose of any drug unless the doctor tells you to. And make sure not to miss a
dose.
o Report changes in weight. If your friend is losing a lot of weight, the doctor
may have to adjust the dose of a drug.
o Help your friend stay rested and calm. Stress, tension and fatigue can help
bring on seizures.
Choking
Choking happens when something, often food, gets stuck in the windpipe,
obstructing air to the lungs. We automatically try to cough the obstruction up,
out of the windpipe. But a cough usually begins by trying to take a breath in. If
the obstruction is too big, we can’t take a breath. This is very frightening. A
person who is choking can panic quickly.
When you discuss your friend’s wishes about death, you need to be especially
clear about choking. A person who is choking will not be calm enough to tell
you what she wants you to do, so you must know in advance.
What To Do
Don’t panic. You have to react calmly and quickly to help someone who is
choking.
o Ask your friend: Are you choking? Can you speak? She may clutch her
throat and try to cough out the obstruction. Don’t interfere with her attempt
to stop choking.
o If your friend cannot speak or cough, you will have to use the Heimlich
Manoeuvre to help force the obstruction out.
The Heimlich
Manoeuvre
Stand behind your friend or get behind her in bed. If she is sitting in a chair
and can’t get up, stand behind her and the chair.
Wrap your arms around her waist. Make a fist with one hand and wrap your
other hand around it. Put the thumb side of your fist in the middle of the lower
stomach just above the belly button.
Push your fist into the stomach. Use the strength of both arms to make five
quick thrusts inward and upward. You are pushing the organs in the person’s
Figure 15.1: The Heimlich Manoeuvre
abdomen up against the bottom of the lungs. This should force the air in the
lungs up into the windpipe to blow out the obstruction.
If you are unable to get behind your friend, either in bed or on the floor,
straddle your friend on your knees facing her head. Place your hands on top of
each other with palms flat. Place your flat hands on the abdomen just above
the belly button. Use the strength of both arms, with elbows straight, to make
five quick thrusts inward and upward.
If the Heimlich Manoeuvre doesn’t work after one minute, your friend will
need emergency help. Unless she has made it absolutely clear that she will not
go to hospital even if she is choking to death (this is unlikely!) you must call
right away for an ambulance. Tell the operator what is happening; help must
come fast. Go back to your friend and keep trying the Heimlich Manoeuvre
until help arrives. If your friend stops breathing, you will need to start artificial
respiration. We will not describe this technique here. The best way to learn
how to give artificial respiration is to take a course in CPR. Again, we
recommend that you consider doing this as CPR is a useful skill that everyone
should try to learn.
Preventing choking:
Choking can happen to any of us at any time. But people in the later stages of
AIDS often have problems with swallowing, so choking becomes more likely.
o You can help prevent choking by making sure that your friend’s food is
easy to swallow. (Section 12 has more on preparing and serving food to
prevent choking.)
o Remember that a person who cannot swallow at all should never be given
anything by mouth. (In Section 8 you can find out about ways to give drugs
to a person who cannot swallow.)
Falls and
Injuries
People who are in the later stages of AIDS or people with AIDS dementia
complex are usually very weak and can easily lose their balance and fall.
When a fall or injury occurs, your first reaction should be to protect your
friend and follow the decisions that arise from the questions presented at the
beginning of this section. Meanwhile, you will need to attend to your friend.
What To Do
Remain calm and reassure your friend. A fall or injury can be very frightening,
and your friend will probably be in pain.
o Ask your friend where she hurts. Check to see if she can move her limbs. If
you suspect a serious break, don’t move her, keep her from moving around.
Use a blanket to keep her warm and put a pillow under her head.
o If you are alone, call someone to come and help you. Then call the doctor
for advice. Also, follow the directions on your emergency phone number
list.
o If a trip to the emergency room is expected, leave your friend where she is
after making sure she is as comfortable as possible. The ambulance
attendants are trained to move and lift people without causing further
injury. Talk to your friend while you are waiting for help to arrive.
o When it is time to go to the hospital, make sure you have your friend’s
hospital card, any medical records you need (these should be kept at the
front of this manual), the doctor’s phone number and, when available, a
copy of your friend’s Living Will. Make sure you call a care team leader so
the team will know what has happened.
Bleeding and
Hemorrhaging
Once in a while, we all cut ourselves and bleed. The person with AIDS is no
exception. However, people who are seriously ill will sometimes bleed more
and longer than those who are healthy. If your friend cuts herself and begins to
bleed, follow these simple rules of first aid to stop the bleeding:
Cuts:
o Put on a pair of gloves.
o Apply direct pressure to the bleeding site. Use a clean piece of gauze or a
bunch of tissues to do this. If there is lots of blood and there are diapers in
the house, use one of them.
o Keep your friend flat, lying down and calm; this will help reduce the flow
of blood. When possible, elevate the bleeding site to prevent blood from
flowing into the open cut.
o Once the bleeding has stopped, apply a clean bandage to the area.
o Talk to your friend, reassure her and stay calm.
o Be very careful to dispose of any bloody tissues, or gauze. Clean the area
well.
o If the cut is large and won’t stop bleeding, call the doctor or nurse. Stitches
may be required.
Nosebleeds:
o Put on a pair of gloves.
o Apply direct pressure to your friend’s nostrils by pinching them shut.
o Ask your friend to lean forward with her head slightly tilted downward. Do
not tilt the head backwards. The bleeding should stop in a few minutes.
o After the bleeding has stopped, or if the bleeding won’t stop, call the doctor
and report what happened.
Hemorrhaging:
Hemorrhaging is excessive bleeding that is very difficult to stop. It is rare but
can happen with certain medical conditions or after a serious injury.
Hemorrhaging is a medical emergency that needs immediate attention.
Massive losses of blood can be life-threatening if they’re not treated promptly.
Very few people with AIDS hemorrhage, but some with extensive disease to
the internal organs have been known to do so. Hemorrhaging involves large
amounts of blood, so it is very important that you carefully follow Universal
Precautions (see Section 4).
Another important factor about hemorrhaging is that it can happen very
suddenly, leaving you with little time to respond.
When hemorrhaging occurs at the site of an injury — a deep cut or a
wound — follow the steps for bleeding on the previous page and call the
doctor immediately. If the doctor is unavailable, call the emergency number in
your area for assistance. When hemorrhaging is internal, blood may leave the
body from any of its orifices: the mouth, nose, ears, rectum or vagina.
Sometimes blood does not escape the body but pools inside. When this
happens, large bruises will eventually appear on the skin.
Hemorrhaging can lead to death very quickly. That is why it’s important to
know how your friend feels about medical emergencies, and what she would
expect you to do to help.
Signs of Internal Hemorrhaging:
What To Do
•
•
Your friend may complain of feeling tired or weak; she may be in pain.
•
Her skin will feel cool and clammy and her colour will turn pale and grey.
These are signs of shock, which is the body’s reaction to severe
hemorrhage and is a sign that immediate medical attention is necessary.
Her breathing may become rapid and irregular and her heart rate may
increase.
Remain calm and get your gloves.
o Call the doctor immediately, then call for help if you are alone.
o Stay with your friend. Keep her calm and motionless, and reassure her.
o If blood begins to escape from the body, for example if it oozes from the
mouth or nose, don’t try to stop it, but collect it with a towel. If your friend
begins to vomit blood, use a bowl, bucket or waste basket to collect it.
o Your friend may feel like passing out. Forcing her to stay awake will only
add to her stress and anxiety. Talk to her calmly and keep her warm with
blankets.
o Stay with her until help arrives. If she does not want any medical attention,
you will need to be with your friend until she dies.
Allergic
Reactions
Many people with AIDS develop unusual allergies to foods and drugs. For this
reason, it is very important to keep track of all the foods and drugs your friend
is allergic to. Record them on a separate sheet and keep it at the front of the
manual where it can be seen by everyone on the care team.
An allergic reaction may be mild or severe, and the signs and symptoms of an
allergic reaction will vary depending on the person and the drug or food. Mild
allergic reactions include skin irritations such as itching, reddened areas,
swelling of nasal mucous membranes and nasal drip. More severe reactions
include body rashes or hives. The most serious allergic reaction is called an
anaphylactic reaction and it needs immediate medical attention.
Signs of an Anaphylactic Reaction:
•
Your friend may complain of some mild reactions, but these will change
quickly.
•
Suddenly, your friend’s throat may start to swell, constricting the passage
of air through the windpipe. The air passages can swell so much that air
will no longer be able to pass through to the lungs. If drugs to correct this
situation are not given very soon, your friend may suffocate and die.
What To Do The moment you suspect any kind of allergic reaction, call the doctor immediately.
The doctor will tell you what to do next.
o If your friend’s throat begins to feel tight or look swollen, call an ambulance. If
your friend wants to go to the hospital, you need to get help fast.
o While you are waiting for help to arrive, stay with your friend and watch her
breathing. If she stops breathing and does not want to die this way, start
artificial respiration and don’t stop until help arrives or until she starts breathing
again.
n
When to call a doctor or the emergency
number
One of the most difficult things to decide in the event of a crisis or medical
emergency is whether to call the doctor or ambulance or other emergency services.
Most of us have learned the telephone number we dial when faced with an
emergency. (In most parts of Canada this number is 911.) However, calling the
emergency services may not always be the most appropriate thing to do. Here are
some hints on how to decide who you should contact when you need help fast:
1. Does your friend want medical attention? Whatever the crisis, you must be
aware of what she wants with regard to emergency care. Knowing her wishes
and what she expects from you will guide you through this decision.
2. Does your friend need medical attention or can you deal with the situation? Not
all emergencies require an immediate trip to the hospital emergency room. For
instance, you may be perfectly capable of dealing with a seizure, helping your
friend when she falls down. In cases like these, you will probably need an extra
pair of hands rather than an ambulance. Call for help from the care team if you
are alone, then call the doctor for further assistance and advice.
3. When something more serious happens, for instance choking, and you can’t
correct the situation with the Heimlich Manoeuvre (see page 213), and you
know your friend does not want to die this way, you will need to call
emergency services.
4. Should your friend suddenly lose consciousness or no longer respond to you in
any way, call the doctor immediately. The doctor will ask you a few questions
and then tell you what to do next. Stay with your friend and make sure she is
breathing. If her breathing stops, this may be your friend’s moment with death.
Think very carefully about whether you should start CPR or call for help. In
most cases, this will not be the thing to do. This is why you need to have a clear
understanding of how your friend wants to die. What you also need to realize
and accept is that not all people will die the way they had hoped.
5. When you’re speaking to someone on the phone during a medical emergency,
make sure you can see or hear your friend whenever possible. Also, grab the
care team manual so you have pertinent information at your fingertips. The
doctor or emergency operator will probably want to ask you some questions.
Remain calm and answer any questions clearly and concisely. Try not to
ramble. Let the person you are speaking to direct the conversation.
Remember, you need their help.
6. If you ever have any doubts about who to call, and your gut tells you that the
situation is serious, call emergency services first and then the doctor. At least
you’ll know help is on the way, and you can deal with the ambulance
attendants when they arrive at the home. Just because the ambulance comes to
the home, does not mean the attendants will have to take your friend to the
hospital. They can provide help on the scene and then leave your friend at
home if the situation stabilizes.
7. While you are waiting for the doctor or ambulance to arrive, check the care
team telephone list and call those people who should be notified. You may
also want to call someone to come and be with you while you are dealing with
the emergency. Don’t stay on the telephone too long. You want the telephone
line to be free in case the doctor or emergency service calls you back.
n
Going to the hospital: what to do
When your friend needs to go to the hospital for emergency care, remember these
helpful points:
1. Don’t let your friend go to the hospital alone. A medical emergency is a
frightening experience, and your friend should not be abandoned. Go with her
in the ambulance. If you can’t, find someone who can, or arrange to have
someone meet your friend at the hospital.
2. If you are taking your friend to the hospital yourself, and you know you have
time, call a taxi. You won’t be able to help your friend if you are driving. If
you do decide to drive, make sure you have someone with you who can look
after your friend on the way to the hospital. This is especially important if the
hospital is far away. However, when a trip to the hospital is necessary and
your friend is bed-ridden or cannot walk on her own, call an ambulance to
assist with the transport.
3. When you’re leaving for the hospital, make sure you take the following:
o The care team manual with phone numbers, medical and nursing notes and
medication lists.
o Your friend’s medical insurance card and hospital card. (Both should be
kept in the care team manual.) Your friend’s doctor’s telephone number.
The hospital staff may need it.
4. Once you get to the hospital you may be asked some questions by either the
admitting staff or the emergency room nurses and doctors. This is where the
manual may come in handy, but mostly they’ll want to know about the
problem that brought you to the emergency room.
5. Once you’ve got a spare moment, check the care team telephone list and call
those people who should be notified about your friend’s situation. This
includes your friend’s doctor.
Of course, everything you do will depend on how much time you have and
on the nature of the emergency. Don’t kick yourself if you forget something
or forget to call someone. It’s not easy to remember everything when you’re
faced with a crisis. Also, you may not have time to do all that is suggested
here, and that’s fine. Your focus should be on helping your friend and
making sure she gets the help she needs and wants.
6. Remember that once your friend is in the hospital, the staff have a legal
responsibility to address her needs at that time. You may be asked to wait in
the waiting room. Don’t insist on staying with your friend unless she wants
you to. Although you may feel anxious about what’s going on, do your best
to be helpful to the emergency room staff. In the end, this will help to ensure
your friend gets the care she needs.
References
St. John Ambulance. Guide to First Aid and CPR (revised edition). Toronto, Ontario: Random House
of Canada. 1996.
Harry van Bommel. Choice for People Who Have a Terminal Illness. Toronto: NC Press Limited.
1986.
Christine Fegan et al. AIDS patient handbook: A manual for families and care-givers of AIDS
patients in the home. San Diego, California. 1989.
Notes
SECTION 16 l 221
Death and Dying
n
Introduction
Death is a part of life. It is something we all will face some day. Being with
someone when they die reminds us of this fact and of our own thoughts and
beliefs about mortality. This can be particularly poignant for anyone on the
care team who may be living with HIV or AIDS or another life-threatening
illness. For someone who has never been with a person at the time of death,
the moment can be very frightening. While the experience will bring to surface
many deep feelings and emotions, it can be a little easier to cope with when
you know what is happening during the dying process.
In this section we discuss some of the physical aspects of death and dying. We
describe the common signs of approaching death, and suggest things you can
do to make your friend more comfortable. We also provide some guidelines on
what to do after your friend dies.
First, it is very important to understand that every death is different. No two
individuals will experience death in the same way. Some people may die very
suddenly and unexpectedly. Others will die just as predicted. Some may linger
for months. It’s important to remember that there are no timetables with death.
People usually die when they are ready, not when we think they will.
n
Signs of approaching death
Here are some of the most common physical signs of approaching death.
These signs may appear and then go away. You may see all these signs or only
a few. You may not see them until just before a person dies. You may not see
them at all.
Appetite
What To Do
Many people will lose their appetite as they approach death. Their will to eat
and drink slowly disappears, and people have difficulties with swallowing.
With less food and drink going in, people who are dying may urinate and
defecate less frequently and without any control.
Offer smaller portions of light foods and try to encourage fluid intake. Crushed
ice may be all your friend can tolerate. The ice can prevent choking when
swallowing is difficult, and it cools and refreshes the mouth
222 l DEATH AND DYING
o Give your friend only what he wants and can handle. Forcing him to eat or
drink could cause vomiting or choking.
o Remind your friend to swallow.
o Check bed and diaper for urine and feces every two hours.
Sleeping
Patterns
A dying person will often sleep more often and for longer periods of time.
When he is awake, it is often during the night. Eventually, it will be difficult to
arouse him as he slips in and out of consciousness. When he is very close to
death, it may be impossible to arouse him at all; he will be in a coma. Many
people who care for the dying believe that the senses of hearing and touch
remain until death. So remember, your friend may still be able to hear you
speak and feel your touch, even though he will not be able to respond.
What To Do
o Plan conversation for times when your friend is more wakeful and alert.
o Keep visits brief, or encourage visitors to sit quietly at the bedside.
o Continue to speak in a calm, natural way; everything you say may be
heard. Include your friend in the conversation and use his name. Don’t talk
about your friend in the third person as if he is not there.
Movement and
Senses
Most people become very weak and eventually lose the power to move their
arms and legs. Some parts of the body (very often the neck) will become quite
rigid. Other times you may notice some nervous twitching and limb
movements that seem to have no purpose. This is normal, and in most cases it
is not distressing to the dying person. In some cases, people become confused
or restless. They may see or hear things, or be unable to recognize familiar
people or surroundings.
What To Do
Support weak or rigid limbs with pillows (see page 61). Turn and reposition
your friend every two hours. Support a rigid neck with small pillows or folded
towels to keep it from becoming hyper extended.
o If your friend is confused, speak calmly and naturally. Remind him who
you are. Even when he is unconscious, explain to him what you are doing
as you provide care.
o If your friend is restless, reassure him. Avoid restraining him at all costs.
Calm and soothing music or gentle massage may ease a restless person.
DEATH AND DYING l 223
o If there is a hospital bed in the home, keep the bedside rails up when you
are out of the room. Contact the nurse or doctor if safety becomes a
concern.
o If your friend can’t see very well, keep a soft light on in the room.
n
Circulation (colour and temperature)
With less body movement and a gradual shutting down of vital body systems,
circulation throughout the body diminishes. Your friend’s skin may feel cool
and moist, starting with the hands and feet. The skin may become pale and
waxy and in some areas may look quite swollen. In other cases, the skin may
become ashen gray or yellowish in colour. Fingernails, toenails and lips may
turn blue; they’re getting less oxygen as the heart slows down.
What To Do
Use the usual amount of bedcoverings to keep your friend comfortable. If he is
unconscious, he will not be feeling cold.
o Turn and reposition him every two hours (see page 60).
o Keep his arms and legs relatively straight to help promote circulation.
Breathing
Patterns
Changes in breathing patterns are very common as death approaches. Most
people who are dying will start to take fewer breaths per minute. They may go
for long periods without taking a breathe at all. This is called apnea. These
periods of apnea are usually followed by a series of irregular and laboured
breaths. This is called Cheyne-Stoking. Your friend’s mouth, throat or lungs
may fill up with fluid, which makes the sound of his breathing very noisy and
rattled because he is no longer able to cough or get rid of saliva. Muscles in the
chest and upper abdomen may take over to facilitate the breathing process, so
it will look like he is working very hard to breathe. Likewise, you may notice
that his nostrils are flaring, opening wider to let more air in. His mouth may
stay wide open all the time. This is not painful, but natural.
What To Do
Keep your friend lying on his side, turning him every two hours. This prevents
choking from collected fluid and saliva.
o Raise the head of the bed, or raise your friend’s upper body with pillows.
This will make breathing a little easier.
o The doctor may order oxygen. Ensure the mask fits snugly around the nose
and mouth (not too tightly); or that the nasal prongs are sitting inside the
nostrils.
o The doctor may order a low dose of a narcotic, like morphine, which can
help to relax a person’s laboured breathing.
o A suctioning machine may also be ordered to help remove built-up
secretions. Only persons who have been trained can use this equipment.
o Drugs, such as Scolopamine (Transderm-V) might be used to help clear
built-up secretions. It may come as a small round patch that is applied to
the skin, or as an injection. Talk to the nurse or doctor about this.
o Mouth breathing can dry out the inside of the mouth and the lips. Gently
swab the inside of the mouth with a moistened toothette and apply
Vaseline to the lips to prevent chapping.
Eyes
What To Do
Sometimes, when people slip into a coma their eyes remain wide or partially
open. This can be an eerie sight for those attending to or sitting with the
person in care. This is natural. However, eyes that remain open can dry out
and become irritated.
o Gently squeeze a couple drops of artificial tears into each eye every two
hours. There are a number of artificial tear products available at the
pharmacy. Ask the pharmacist for drops that do not have any
preservatives in them — these chemicals can be irritating to sensitive
eyes.
o In the case of very dry eyes, the doctor may order an ointment to be
administered along the inside of the lower eyelid. However, in this
scenario, drops are usually better as ointments tend to gunk up the eye.
Pulse
Eventually, the pulse will feel weak. It may be slow or fast. Blood pressure
will gradually drop until it is almost impossible to obtain. This is a normal
process.
Death
When someone dies, his breathing may stop first while his heart goes on for
a few minutes. Some people breathe for a short period after their heart stops.
Very often, when someone dies and his muscles relax, the bladder and
bowels will empty. His eyes may remain open and be fixed in one direction,
or they may be shut and suddenly open at the moment of death.
What To Do
Stay with your friend as he dies.
o Make sure you are there for your friend, but not hanging on. Your friend
will have to die: you don’t want to make it too hard for him by trying to
keep him here. Let it be the way it is, and take the time you need to
experience the moment and the way you feel.
o You can help your friend die by giving him permission to do so. Examples
of things to say: “Just relax, everything is okay.” “Let go when you’re
ready.” “I’m fine and I’m going to be okay. You can leave me now, just let
go.”
o Once your friend has died and you feel enough time has passed, follow the
Special Instructions listed on the chart found in Section 3.
n
Being there at the time of death
People vary tremendously in their comfort with death and dying. The same
applies with the body after death. Some people will spend hours sitting beside
the body; others will not wish to see or touch the body again. On rare
occasions, some people will react with great intensity and may need support.
On the whole, people respond to the death very differently. No response is
right or wrong.
Most of us find being with someone when he dies is an extremely moving
experience. Very often it leaves us feeling numb and sometimes frightened.
These are normal reactions. People present at the time of death should be
encouraged:
Children and
Pets
•
•
To do as they feel, not as they or others think they should do.
•
To stay in the home a short time or a long time, but as long as they feel
comfortable.
•
•
To hold or touch the body, or not to touch the body at all.
To go into the room as many times as they want, or not to go into the room
at all if they do not want to.
To cry or not to cry. Just be who you are.
Many children are afraid of death. However, some children need to understand
what has happened. If their parents allow it, let them touch the body. They
often need to “reality test”; to tickle or pinch, to feel no pulse or breathing, to
feel the skin temperature. They may ask questions, and the questions should be
answered accurately at his or her level of understanding. This is an important
learning experience for a child and should be experienced with his/her parents.
If it is child that is dying, the intensity of emotions experienced can be far
greater than we might experience with the death of an adult. Parents and
siblings need to be together and to have privacy. Honour these needs as you
would for anyone else. Know that your own emotional reactions to the death
of a child may very well be stronger than you anticipate.
As with children, pets should be included in the dying process. Bring any pets
into the room and let them be a part of the care team circle. Our experience has
been that on rare occasions, the person in care is not able to let go and die until
his beloved pet is present.
Privacy, Silence
and Goodbyes
Always respect a person’s need for privacy at the time of death. This may be
particularly important for your friend’s partner, spouse, children, parents and
siblings. Some people may want to be alone with the body. Give them the
opportunity to do so. Long periods of silence are not uncommon and should be
respected. Say only what you feel, not what you think you should say. Make
sure people say their goodbyes in the way they want. Some people will need
support at this point, a hand to hold or a hug. You may need it, too. Reach out,
and let people know what you need.
n
Death-related instructions
Here are a few things you will need to do once death has occurred. There is no
hurry in doing these things. If you feel you need help with these tasks, don’t be
afraid to call someone. Spend as much time with the body as you wish. This
may be a few hours, all day or all night.
1. DO NOT CALL 911, the Police or an ambulance. They are required by
law to initiate resuscitation attempts and to transfer the body to the
hospital.
2. Do call the family doctor or doctor on call. A doctor will need to certify
the death.
3. Do call family members and friends as indicated on the telephone list in
Section 3. Remember that for some people, it will be important to see the
person dead.
4. Do call the funeral home when others have been notified and you are
ready to deal with this. There’s no need to rush in making this call. Let the
funeral home know how much time you may want to prepare the body.
n
Preparation of the body after death
There are a few things that need to be done before the body is transferred to
the funeral home. Caring for the body can be a very important task for some
people. Make sure those who wish to participate can join in. If a nurse is
present, she can help coordinate these tasks, and look after any tubes or
equipment that may be in place.
Preparation of
the Body
Be aware of any religious or spiritual rituals that should take place before you
begin preparing the body for transport to the funeral home (see the Special
Considerations chart in Section 3).
1. If the head of the bed is raised, lower it so the body remains almost flat.
Keep a pillow under the head and gently straighten out the body.
2. If the eyes remain open, you may wish to gently close them. Sometimes
people die with their mouths open. You can keep the mouth shut by
putting a rolled-up towel under the chin. This helps to keep the body
looking as peaceful as possible.
3. After the doctor has arrived and before the funeral home attendants come,
you may wish to bathe or dress the body. This can often be a very
important task for some people. Make sure those who wish to be involved
are not excluded.
4. Once the funeral home attendants arrive, discuss their procedures with
them. You may want to be involved with shrouding the body or
transferring it to the stretcher.
5. Take time to say your goodbyes before the stretcher is taken from the
home.
References
Hospice King. Hospice King Manual. King City, Ontario: Author. 1984.
Madalon O’Rawe Amenta and Nancy Bohnet. Nursing care of the terminally ill. Toronto: Little,
Brown & Company. 1986.
The Victoria Hospice Society. Hospice resource manual: Medical care of the dying. Victoria:
Authors. 1990.
Notes
SECTION 17 l 229
Grief and
Bereavement
n
Introduction
One of the most profound impacts of the AIDS epidemic has been the
experience of confronting our mortality. AIDS has forced many of us to
consider the fact that at some point in time we will no longer be. And
although many of us have something to say about our feelings toward death
and dying, most of us are probably saying how we would like to feel or how
we think we ought to feel. However, when we are dealing with people who
are dying, it is important to be honest and allow ourselves to get in touch
with our real feelings about death and dying.
The first and most important step to understanding our attitudes about death
and dying is to recognize and truly get to know our own history with loss.
Section 10 discusses loss, and you will do yourself a favour by reviewing it
before reading this section.
Once we are aware of our personal responses to loss and death, we can then
move on to helping those who are coping with grief and bereavement. In
doing so, we will learn more about ourselves; how we deal with loss and
grief, and the meaning we attach to this experience.
•
•
•
•
•
•
•
What are grief, mourning and bereavement?
Common responses to death
Responses to grief
The process of mourning
Grief and AIDS
Bereavement care
Taking care of yourself
230 l GRIEF AND BEREAVEMENT
n
Grief
What are grief, mourning and
bereavement?
Grief is a natural part of life. It is a normal and expected response to any loss,
not just death. It is the process that helps us adapt to the changes that come
with loss.
All of us grieve in our own way. Our grief is based on our perceptions of loss.
These perceptions belong to us and do not need to be validated by others.
What we feel is what we feel!
Grieving can help bring the personal and private meaning of that which was
lost to the surface. It can be a moment or a process of self-discovery that helps
us to better understand something we have not previously considered.
The process of grief takes time, often more time than we think. It touches all
aspects of our lives: physical, psychological, emotional, social, cultural and
spiritual.
Grief is hard work. It takes energy, both physical and emotional, to cope with
the changes that come with loss. It can also be painful, and at times it might
seem impossible to resolve. But peace will come.
Some people need help to grieve, to deal with old or recent losses. Unresolved
grief can lead to serious physical and psychological problems that can make
life unbearable.
Mourning
Mourning is the process we go through to undo, reshape or attach new
meaning to our connection with what we have lost. It is an introspective
process, both conscious and unconscious and helps us to deal with our grief.
Mourning can also be a cultural response to grief. There is no one style of
grief. Rather, mourning is a reaction that is socially and culturally influenced.
Thus mourning and the rituals of mourning, such as funerals and burial, are an
extension of who we are in the world and how we are connected to it.
Mourning is also something that may last forever. For example, we remember
and mourn those whom we’ve lost on special occasions (e.g., birthdays,
anniversaries, special holidays) or when we return to certain places or hear
familiar sounds, etc. There is nothing unhealthy about this. In fact, it’s an
expression of how important that person was to us and how we honour their
memory in a moment of mourning. If, however, mourning brings us back into
GRIEF AND BEREAVEMENT l 231
a place of intense grief, then there are probably some unresolved issues related
to that loss that need some attention.
Bereavement
Bereavement is the state of having suffered a loss. It involves both the
emotional and physical responses of grief as well as the tasks of mourning that
are used to cope with grief and loss.
When we speak of those who are bereft, we are talking about people who have
recently experienced a loss, are coping with grief and are going through the
mourning process.
n
Common responses to death
Although each of us experiences grief in our own way, there are some
common responses to death. Like the tides of the ocean, these responses will
come and go, lasting for different lengths of time and on their own schedule.
Rarely, do they not appear at all.
Feelings
Shock, numbness, emptiness
Indifferent to daily routines or activities
Withdrawn or explosive
Needing to review the death
•
•
•
•
Thoughts
Poor concentration, forgetfulness
Daydreaming
Anger, guilt
Denial, disbelief
Confusion, sense of “this can’t be real”
Constant thoughts about the person who has died
•
•
•
•
•
•
Body
Tight chest, palpitations
Shortness of breath
Diarrhea, constipation, vomiting
Crying, sighing
Lack of energy, weakness, rigidity
Dizziness, shivering, faintness
Restlessness
Loss of appetite, overeating
Insomnia or sleeping too much
Increased drinking and drug use
Decreased sexual drive
•
•
•
•
•
•
•
•
•
•
•
Social
Distance from others
Lack of interest in others’ activities
Unrealistic expectations
Poor judgment about relationships
•
•
•
•
Spiritual
Blaming God or life
Lack of meaning or direction in life
Wanting to die, to join the dead person
•
•
•
Problems
in Grief
Some of us have learned to deal with loss in ways that make the experience
of grief very difficult. When the process of mourning is avoided, some of the
following problems may arise:
•
•
•
•
•
•
Loneliness
Loss of self-esteem
Changes in lifestyle
Difficulty coping with loss
Conflict with family and friends
Difficulty establishing a new identity after the loss
For some people the process and work of grief is too much to bear or it takes
over our lives. When this happens, we call it “complicated grief.” The
following may indicate the presence of complicated grief and the need for
intensive counselling:
•
•
•
•
•
•
•
Complete denial
Dependency on drugs and alcohol
Severe depression that will not go away
Death wish
Chronic health problems
Major personality changes
Loss of control over decision-making
When the signs of complicated grief become apparent, support and
encouragement should be offered to help bring the person to the realization
that intensive work with a grief and bereavement counsellor may be
required. If you are that person, it may be important for you to pull away
from care team work for some time and invest your energy into getting some
counselling.
Anticipatory
Grief
Anticipatory grief refers to doing the work of grief before the actual loss has
occurred. Usually, partners, spouses, family members, friends and caregivers
are anticipating their loss due to death. Here, the work of grief has already
begun and is sometimes accomplished before death has occurred. Your loved
one may also be anticipating the loss of her life or worrying about your
anticipation of loss. Depending on the disease processes involved, your loved
one may be anticipating the loss of her sight or mental functioning. Whatever
the anticipated loss, it is important to talk about these feelings as you
experience them.
The signs of anticipatory grief include:
•
•
•
•
Depression
Heightened concern for your loved one
Rehearsal of the death
Attempts to adjust to the consequences of the death
Anticipatory grief also allows for:
•
•
•
•
n
Absorbing the reality of loss gradually over time
Finishing unfinished business (feelings, resolving conflicts ) with the
person
Beginning to change assumptions about life and identity
Making plans for the future so the plans will not be felt as betrayals of the
deceased after death
Responses to grief
For many years, grief and bereavement workers used Dr. Elizabeth
Kubler-Ross’s model to explain five stages of grief: denial, anger, bargaining,
depression and acceptance. As more people joined the field, new ideas and
theories developed and this work continues to evolve. Today, grief and
bereavement workers generally agree that the five stages of grief are better
understood as responses to grief that may or may not happen.
Shock or
Numbness
Guilt
This phase involves many of the physical symptoms described previously.
Even when death was expected and there was time to prepare for it, the reality
of death comes as a great shock. You might feel numbness all over your body
or the sensation that it is covered by a heavy cloud. For some, the death may
not seem real at first, then suddenly, out of the blue, the shock hits at full force.
Others will use denial to protect themselves from the pain of grief.
Many people feel a sense of failure after someone has died. A period of, “If
only I had done this or that.” is common. Some people will search for
forgiveness from those who are left behind, but forgiveness must come from
within. Others will feel guilt out of proportion to their responsibility, or will
feel guilty when it is not appropriate.
Anger
Anger is a common and normal reaction to death, and is usually directed at the
person who died, “How could you leave me?” However, since it is very
difficult to be angry at someone who is dead, the anger gets displaced to other
persons or things. It comes in various degrees ranging from mild irritability to
rage. Anger needs to be expressed. Otherwise, it will turn inward and cause
depression and physical problems.
Depression
Depression is a natural response related to the feelings of great sadness and
loneliness that come with the death of a friend or loved one. It is a difficult
time, and one that needs to be experienced. It can be even more difficult when
those around us expect us to get over it, “Life must go on.” “You must pull
yourself together for your children.” Grieving takes time; don’t rush the
process.
Resolution
Resolution is the process of accepting our loss and integrating that loss into
our life so we can remember our loved one with joy rather than deep pain.
Once we have resolved our grief, we can move on to develop relationships
with others.
Remember, these phases of grief do not have to happen in any particular order,
and that they will come and go. There are good times and bad times. Some of
the difficult times to look out for are the first anniversaries of your loved one’s
death, birthday and other special events or holidays. During these difficult
times, it is important to remember that, despite society’s negative attitudes
about death and dying, grief and mourning do not represent any sign of
weakness, failure or lack of faith.
n
The process of mourning
We’ve said that mourning is the process we go through to cope with our grief.
Unlike the phases of grief, however, mourning generally seems to follow a
progressive path from accepting the reality of the loss to a comfort with
reinvesting energy in new relationships.
Accepting the
Reality of Loss
The first task of mourning is to face the reality that our friend is dead. The
purpose is to move us out of shock, disbelief or denial. We can face the reality
of death by talking about the dead person, how she died, the funeral, burial or
memorial service. Some people will need to see the person dead in order to
believe it is true. However, this is not always possible, so talking about the
circumstances surrounding the death will be helpful.
Experiencing
the Pain of Grief
It is virtually impossible to lose someone you have been deeply attached to
without experiencing some level of pain. All of us who are bereft will
experience pain in different ways and in different intensities. We need to feel
this pain and know that someday it will pass. Sometimes it can be easier to
express our pain to someone who knew the person who died. Those who
choose not to work through the pain of grief may find themselves with
difficult physical or psychological problems. Feelings of shock, anger, guilt
and depression may need to be expressed before the pain of grief can be felt.
Adjusting to an
Environment in
which a Loved
One is Missing
Understanding the role that the person who died played in our life is the first
step toward adjustment. Very often we are not aware of these roles until after
our friend is dead. Sometimes it becomes necessary to take on the roles that
were formerly performed by the person who died (e.g., an income provider,
parent, caregiver of another, etc.) People who do not recognize the role of the
person who died often promote their own helplessness.
Withdrawing
Emotional
Energy and
Reinvesting it in
Another
Relationship
Many of us have great difficulty letting go of our emotional attachment to the
person who died. We may feel that in doing so we are dishonouring the
memory of our loved one. Some of us are frightened with the prospect of
investing our emotions in another relationship, because it, too, might end with
loss. This is especially true now that AIDS is in the world.
This task is often the most difficult to accomplish because it means letting go
of the past and moving on with life and new relationships. Often people who
get stuck at this point later realize that, in some way, their life stopped at the
moment of loss.
n
Grief and AIDS
Although we have said several times that grief is a natural response to any
loss, there are indeed some unique factors associated with grief and AIDS.
Fear is the reason these factors exist and is reflected in our societal attitudes
about sex, death, certain behaviours and marginalized communities. These
attitudes shape the way society responds to concerns and issues that are
traditionally taboo in our western culture. The impact on people living with
HIV and AIDS and on those who care for them can add complex dimensions
to their grief, mourning and bereavement.
Multiple Losses
The epidemiology of AIDS and HIV infection has clearly left its mark on
certain groups and communities. In terms of numbers, gay and bisexual men
were hit hardest by the HIV epidemic. To date, no other group in Western
society has experienced more death and loss related to AIDS than the gay
community. This must be acknowledged when we are considering the needs of
those who are bereaved and who are connected to the gay community.
Because of AIDS, the experience of dealing with multiple losses and
cumulative grief is far too common in the gay community. Many people have
lost all of their friends. Others have lost several partners. Some families have
had several family members die with AIDS. For many, the result is grief
overload.
When a person is grieving multiple losses, there are differences in the patterns
of grief. These differences are based not on the number of deaths but on the
number of changes in the person’s life. This experience of coping with
extensive change often leads to a loss of sense of self. Thus, before a person
can begin to grieve the loss of others in the more usual pattern, she must focus
on herself and struggle to find new meaning in a world of multiple loss and
change.
As the epidemiology of HIV and AIDS continues to evolve, we are beginning
to see the experience of multiple loss and cumulative grief in other
communities such as women, intravenous drug users and Aboriginals. For
most of us, our experience with loss and grief in these communities is very
limited. This limitation, in the face of such rapid growth in the magnitude of
loss, can leave us feeling quite helpless in our role as caregivers. And even
though the number of AIDS-related deaths in the gay community may be
going through a period of decrease due to new treatment options, we may be
unable to catch our breath as the numbers of deaths in other vulnerable
communities begins to rise. Communities will continue to experience multiple
loss, so we must bear this in mind as we commit ourselves to caring for those
who are dying.
Communities in
Grief
The multiple losses that are associated with the AIDS epidemic have threaded
grief into the living fabric of several communities and cultural groups. For
example, members of the gay community mourn what sometimes feels like the
death of their whole culture. This process of mourning comes at a time when
gay culture is just beginning to blossom and be recognized. Our large urban
centres mourn the deaths of hundreds of intravenous drug users, their partners
and children. Aboriginal communities face the eradication of entire family
bloodlines as HIV moves on and off reserves. More and more, families are
coping with more than one family member being infected. The majority of our
palliative care services are based on western (white) models of health and
medicine and have some way to go to appreciate the diverse cultural and
religious beliefs of Canada’s many nonwhite communities.
The point is that living with grief has become a characteristic of community
life for numerous facets of society. As a result, traditional values and beliefs
related to death, dying and grief are being questioned. This process of change
will influence our experience with grief, mourning and bereavement.
Phobias
Society’s attitudes around the taboos we’ve already mentioned have been
expressed in the form of numerous phobias (fears or aversions): homophobia,
AIDSphobia and the fear of drug users (viewed by many as criminals) are just
a few. These phobias have served to target, falsely, these and other
marginalized communities as the cause of AIDS. This assignment of blame
can be a powerful negative when dealing with grief. For example, some
homosexuals have experienced internalized homophobia: feeling shame and
self-hatred for being homosexual. They may see AIDS as a punishment for
being gay. And the same can be said for drug users, sex trade workers, etc.
These feelings of shame and self-hatred can lead to depression and
complicated patterns of grief.
Although legislative advances are being made with regard to same-sex
relationships, society’s attitudes continue to negate homosexual partnerships.
This reality can result in disputes over wills and insurance claims, lack of
permission to participate in funerals, and the rejection of requests for
bereavement leave. All of these invalidate the grief experience and make it
profoundly difficult for those who are bereaved to move forward with their
grief and mourning.
Secrecy
Fear of
Contagion
Phobias have caused many individuals to keep the cause of a friend’s death
secret. If we are afraid to talk about the death to family, friends and employers,
we may experience an actual or superficial denial of death. This may lead to
isolation and a delayed grief response which may in turn impact on their
ability to meet the rigours of day-to-day living.
The partners of those who have died with AIDS may worry about contracting
AIDS as a result of the relationship. Partners who are HIV seropositive may
fear that the stressors of grief will further compromise their immune status or
even result in a diagnosis of AIDS. Lack of information about HIV
transmission may leave family members and friends fearful of contagion or
anxious about their own health. Just imagine how these feelings might impact
on one’s grief or create a sense of anticipatory loss.
n
Bereavement care
Bereavement care begins at the time of loss and continues with ongoing
outreach through the first year of bereavement. It requires a commitment to
“checking-in” regularly with the those who are bereaved, giving them a
chance to talk about how they are doing, monitoring their progress and
assessing whether or not they need additional help or support.
Caring for
Those Who Are
Bereaved
Understanding your own losses and personal attitudes toward them is the first
important step to helping those who are bereaved. If you are aware of your
own feelings, especially your feelings of helplessness, you can be more
realistic about what you can offer in terms of support.
o When you can, be there for those who are bereaved. Shortly after the
funeral and burial are over, people seem to disappear, and the bereaved are
often left alone. But this is when they need support. When you are with
them, be present; open yourself to let them in and share their pain.
o Encourage the bereaved to feel what they feel and to talk about their
feelings. Talking about feelings does not create them: sadness, anger, guilt,
hopelessness are already there. Take the time to listen to others talk about
their grief. Listen with acceptance. Don’t judge what the loss means to
them.
o Asking gentle questions about the death and mentioning the name of the
person who died can help people to start talking. Some may talk to distract
themselves from their feelings. Moments of silence can help bring feelings
to the surface.
o Offer time and encouragement rather than advice. People often realize for
themselves what it is they need to do.
o Read about grief and mourning. This will help guide you through your
discussions with people who are bereaved.
o Some people feel it is important not to get too involved, to eventually bow
out of the grieving circle. For some this may be important, but the healing
process is facilitated by the expression of emotion. As you develop trust in
grief as a healthy process, you will feel comfortable with expressing
emotion, and this confidence will be communicated to others.
Taking Care of
Yourself
One of the most frequent and potentially hazardous outcomes of the care team
experience has been the extent to which volunteers throw themselves into this
work. No matter how much training is provided and how many reminders are
given, self-care usually gets pushed aside by the majority of AIDS caregivers.
Regardless of your relationship to the person in care, it is unlikely that you will
walk away from a care team experience feeling nothing after a death. Don’t
forget about yourself and your own grief. You have a right to experience and
work through your loss. And you don’t have to push it completely aside in
order to still be open and available to those who are also bereaved.
o Accept the fact that you need to grieve and to feel your feelings. It’s okay to
cry and to let your feelings out.
o Talk about your feelings to someone you are comfortable with; someone who
is a good listener. Talk with this person often.
o Take your time in resuming your regular activities. Be patient with yourself
when you are confused or forgetful.
o Look after yourself physically. Eat well, exercise, and gets lots of rest. Do
something nice for yourself each day.
o Deal with guilt. If necessary, get help.
o Explore your understanding of the meanings of life and death, and let this be
a process of growth.
o Don’t isolate yourself. Meet with old friends and talk about your loss.
o Postpone major decisions until you feel comfortable with your grief and have
moved toward a sense of resolution.
o Get help if you need it. Visit with a counsellor or join a support group where
you can share your feelings with others in a similar situation.
n
Conclusion
Grief, like birth and death, is a universal experience. It is not an illness that
needs to be cured or a disability that needs constant repair. Grief is a human
process of restoration that, daily, keeps us in check with our deepest responses to
life’s ongoing losses and change. Grief helps us to free ourselves of sorrow so
we can celebrate and enjoy life.
References
Mount Sinai Hospital and Casey House Hospice. A Comprehensive Guide for the Care of Persons
with HIV Disease - Module 4: Palliative Care. Toronto: Authors. 1995.
Kairos House. Some Thoughts About Grief. (Unpublished manuscript). San Francisco, CA: Author.
Elizabeth Kubler-Ross. On Death and Dying. London: Collier-MacMillan Ltd. 1969.
Therese Rando. Grief, Dying, and Death: Clinical Interventions for Caregivers. Champaign, Illinois:
Research Press Company. 1984.
Therese Rando. Loss and Anticipatory Grief. Lexington, MA: Lexington Books. 1986.
The Victoria Hospice Society. Hospice Resource Manual: Medical care of the dying. Victoria:
Authors. 1990.
J. William Worden. Grief Counselling and Grief Therapy: A Handbook for the Mental Health
Practitioner. New York: Springer Publishing Co. 1982.
Notes
SECTION 18 l 241
After Death
n
Introduction
Families and care teams need to remember that caregiving continues after the
death of a loved one. At this stage, our focus turns to supporting those who are
left behind and bereaved. Support may involve spending time with the
bereaved and listening to them express their feelings of grief. It may also
involve practical assistance in the areas of planning a funeral or memorial
service, closing down an apartment or home, distributing personal effects and
belongings, finding a new home for a pet, etc.
In Section 16 we offer some practical suggestions concerning what to do with
the body at the time of death. Section 17 addresses the issues of grief,
mourning and bereavement. The purpose of this section is to provide some
direction on practical matters that need to be addressed after your friend has
died.
•
•
•
•
•
n
Funerals and memorial services
Legal and financial matters
Closing down someone’s home
Distributing personal belongings
Taking care of the care team
Funerals and memorial services
Although slightly different, funerals and memorial services are rituals that:
celebrate the life of someone who has died; perform religious rituals or
spiritual traditions; and provide a time and place for loved ones and friends to
gather, share their grief and support each another.
Funerals usually take place a few days after death and involve the presence of
the body in a casket (coffin) or as ashes in an urn (following cremation).
Sometimes cremation occurs after the funeral. Funerals may be held in a place
of worship, such as a church, temple, mosque or synagogue. They may also
take place in the chapel of a funeral home or cemetery, in someone’s home or
even outdoors. When a large number of people are expected to attend, funerals
should take place in venues large enough to accommodate everyone, such as a
community hall or public auditorium.
242 l AFTER DEATH
Some religions have strict rules about funeral rites, burial procedures and
whether the body should or cannot be cremated. It may be important to observe
these rites.
Memorial or remembrance services traditionally do not involve the presence of
the body and may be held any time after death. Sometimes more than one
service is held, for example, different services in different cities. A memorial
service does not usually involve the same degree of attention to religious rites
as a funeral, but this is not to say that religion has no place at a memorial
service. The service is based on what your friend and his loved ones have
planned.
n
Planning the service
It is helpful when your friend articulates his wishes for a funeral or memorial
service before he dies. Some people plan their own funerals in great detail and
have them recorded in their will. Often, these plans are discussed with a funeral
director, religious or spiritual leader and the executor1 of the will. Sometimes,
the plan is to have nothing done at all, except for an immediate burial or
cremation. When no plans are in place, partners and family members will need
to decide what to do.
Here are some things to consider. Don’t feel that you have to follow any or all
of the suggestions on this list.
o Type of service: Funeral, memorial service, burial only, etc.
o Place: Where should the service take place? This may depend on the type
of service you want to hold, for example, a church funeral. Is the place large
enough, easy to get to, etc.?
o Date and time: When should the service take place and at what time? Do
you need to hold the service right away due to religious rites? Or can you
wait a couple of days to give people advance notice or to allow time for
family and friends to arrive from out of town?
o Obituary notice: A funeral director can help you arrange for an obituary
notice to be placed in the newspaper(s). You don’t have to follow the
“standards” of obituary notices. Say what you want, how you want. Your
friend may have prepared his own obituary notice. Obituaries can announce
1. Note: This term is used in the Common Law. The Civil Code term is “liquidator”. For more
information on the various provisions of Common Law and the Civil Code, see the section
entitled “Legal and financial matters”.
AFTER DEATH l 243
the date, time and location of the service and information such as “in lieu of
flowers, a donation to ....... would be appreciated.”
o Make lists: Make a list of who needs to be informed of your friend’s death
and call these people to advise them of the service plans. You may also
want certain people to participate in the service, so get in touch with these
people first.
o Flowers: Traditionally, flower arrangements are sent as condolences or to
decorate the church or hall. You will need a plan for what to do with
flowers after the service. Should they go to family, friends, neighbours, the
hospital, hospice or local AIDS organization?
o Program: Once you have planned the service program, you will need to
have it prepared for distribution at the service. Funeral homes can help with
this, but many people like to be creative with this aspect of service
planning. A picture of your friend may be included or perhaps a favourite
poem or verse. Make sure you print or photocopy enough copies. Many
people like to keep a service program as a memento of the service and in
remembrance of their loved one or friend. People who are unable to attend
the service often appreciate receiving a copy in the mail.
o Hospitality: You may need to arrange accommodations and meals for
family and friends who are coming from out of town. Child care may also
need to be arranged. Coordinate pickups at the airport, train or bus station.
o Visitation or wake: You may want to hold a wake before the service where
friends can gather to support each another, offer condolences to the family
and celebrate your friend’s life. A more formal version of a wake is a
visitation at the funeral home prior to the funeral or memorial service. A
visitation can provide those who are unable to attend the funeral with an
opportunity to meet with the bereaved and perhaps view the casket.
o Pallbearers: If a coffin is part of the service, you may want to select
pallbearers and notify them.
o Burial plans: Part of planning the service may include arranging the burial.
See burial options below and make the appropriate arrangements.
o Reception: A reception may be planned for after the service or burial.
Generally, refreshments are served. What would you like to serve and who
will take care of it? A caterer, family and friends, or church group?
244 l AFTER DEATH
n
Sample service program
In the event that your friend did not plan his funeral or memorial service or left
only a few wishes to follow, it will be up to those left behind to plan the service
program. Here are some things you might like to consider.
o Instrumental music: It is nice to have quiet music playing while people
gather for the service. It helps to set the mood, providing a reflective space
for people to prepare themselves for the service. When selecting the type of
music to play, begin with pieces your friend enjoyed.
o Singing: Singing hymns or songs can be a wonderful way to involve those
who are attending the service. Solo performances by friends or invited
performers can also be worked into the program. Selecting your friend’s
favourite hymns or songs will have special meaning. Explain the
significance of your choices in the program or in a brief introduction.
o Religious rites: If certain religious rites are to be followed, you will need to
work with the presiding religious or spiritual leader to plan these
components of the service. Members of the family of friends may be asked
to participate at certain moments during the service.
o Prayers: Special prayers may be selected or written especially for the
service. These prayers can be read by anyone and at different times
throughout the service.
o Eulogy: You may want one or two people to deliver a eulogy honouring the
life of your friend. There are no rules about what should be said.
Sometimes, people write their own eulogies and ask someone close to them
to read it at their service.
o Reminiscences: Some services include a time for those in attendance to
stand up and share reminiscences about your friend. These may be planned,
left open to those who wish to speak or both.
o Visual materials: A picture of your friend may be placed near the coffin or
urn or at the entrance where the service is being held. Candles could be
available for people to light as their own special offering of remembrance.
A book of remembrance may be available for family and friends to write a
few words either before or after the service. This book will become a
meaningful memorial for the family. Slides or videos have also been used
as visual aids accompanied by a eulogy or some music.
AFTER DEATH l 245
o Silence: A moment of silence might be included to offer those in
attendance an opportunity to reflect, meditate or offer personal prayers
during the service.
o Readings: Special readings may be offered as part of the service. These
might be scripture readings, poems or whatever is most appropriate and
meaningful. Telegrams or letters from people unable to attend may also be
read at the service.
o Procession: At the end of the service, the partner and family may wish to
leave their seats first and gather at the back of the church or hall. This
gives them a chance to prepare to greet people leaving the service who
may wish to offer their condolences and support.
o After the service: The program should include a short note about any
plans for burial or a reception following the service.
n
Burial
Burial (interment) may follow immediately after the funeral service or at
some other convenient date and time. If burial involves a coffin, it usually
occurs right after the funeral. The family may wish to designate burial as
private. Sometimes the coffin is sent to a crematorium where the body is
cremated followed by a burial of the ashes, or commendation to a
columbarium (a sort of mausoleum that has spaces for several urns).
Cremation is usually much cheaper than coffin burial but these costs vary
from cemetery to cemetery. Should a body need to be transported to another
city or country, the funeral director can help you make the necessary
arrangements.
Certain jurisdictions have bylaws governing burial and disposal of ashes.
Your funeral director can advise you of these rules. For instance, some cities
have rules that restrict disposal. (Quite frankly, if it’s a private affair, who’s
going to know the difference.)
Another aspect of planning the burial includes selecting the grave site and
ordering a gravestone or foot stone. The same applies to the placement of
ashes in a columbarium. The cost of gravestones varies and is usually directly
related to the size, style and type of stone. This is a personal matter and may
have been planned before death. Some families have grave plots or
mausoleums in cemeteries so the grave, or foot stone, will look similar to
those of other family members. Gravestones can be pre-ordered and ready at
the grave at the time of burial. More often, however, they are delivered to the
grave at a later date. The placement of a gravestone can become an important
part of the grieving process and often represents the final goodbye. A small
gathering or special service is sometimes arranged for this occasion.
246 l AFTER DEATH
n
Costs
There are costs associated with funerals, memorial services, cremation, burial
and grave preparation. Additional fees (sometimes optional) may also be
charged for grave maintenance, such as grass cutting, seasonal flowers, etc.
In some cases, funeral and burial costs have been prepaid through special plans
with funerals homes, memorial societies, funeral insurance plans, etc. Any
costs over and above the conditions of the prepaid plan will have to be covered
by the estate. Sometimes, a person’s will states that all funeral costs should
come directly from the estate.
When there is no estate, or if the person dies while receiving social assistance
or other benefits, government social services may cover funeral and burial
costs up to a certain limit. These limits are low compared to the cost of funerals
and burials. Government-paid funerals are administered through the public
trustee’s office (see Public Trustee below). Sometimes, families and friends
will pitch in to cover these costs. However arranged, the executor will have to
play a role in making decisions about what the estate can afford.
n
Legal and financial matters
There are several legal and financial matters that need to be taken care of when
someone dies. How these matters are managed will depend a great deal on
whether a will was prepared before death.
The following paragraphs offer general explanations about provisions under
Common Law (used in all of provinces except Quebec) and )the Civil Code of
Quebec. These explanations are intended as a rule of thumb only. You should
consult a lawyer or another professional before making a decision.
WhenThere
Is No Will
When someone dies without a will, the Office of the Public Trustee becomes
the executor of the estate. However, a spouse, child or other heir can apply to
the Court to be appointed executor of the estate. When the executors or
beneficiaries of a will cannot or will not act to settle the estate, the Public
Trustee will be appointed to take over as executor. A person can appoint the
Public Trustee as executor in their will.
In Quebec
When someone dies intestate (i.e., without leaving a will), the heirs are
responsible for liquidating the estate. They must appoint a liquidator in keeping
with the provisions of the Civil Code. If people have no will or heirs, their
property is managed for ten years by the Public Curator who then disposes of it
AFTER DEATH l 247
as deemed appropriate. This time period is intended to allow possible heirs to
come forward.
When There
Is a Will
There is no law that states a person must have a will. However, writing a will
can help ensure that your wishes about inheritance are respected. When
preparing a will, you will need to appoint an executor. The executor is
responsible for carrying out the instructions stated in your will (i.e., settling
your estate). Generally, you should appoint someone you trust and who you
think will outlive you. You should also appoint someone as backup or
coexecutor.
Each province has its own basic guidelines regarding how to prepare and
notarize a will (make it legal). You can obtain a copy of these guidelines
through the Office of the Public Trustee or your provincial law society.
Likewise, there are countless resources available in libraries and bookstores
that address wills and estate planning. Seeking legal advice is a good idea, but
costly. Many financial institutions (e.g., banks, trust companies, credit unions,
etc.) have estate planning divisions that can help.
There are three important things to remember when writing a will:
1. Just do it. Not only will it protect the inheritance, but it can help prevent (or
reduce) conflict between beneficiaries.
2. Be specific and clear. The more detail you provide, the easier it will be for
the executor to settle your estate.
3. Make sure your executor, family member or friend knows your funeral and
burial wishes. People often include this information in their will, which can
help when settling funeral and burial costs. However, wills are generally
read after the funeral, so people need to know what your wishes are before
the reading of the will. It’s a good idea to record these details in a separate
document.
Other legal matters that need to be taken care of before death may include
updating documents that describe joint tenancy or joint ownership of assets,
such as bank accounts and property. Assets in joint tenancy do not form part of
the estate. Review and update insurance policies or retirement investment
plans. Usually, these plans do not form part of the estate because you appoint a
beneficiary in the policy or plan.
In Quebec
There is no law that requires people to have a will. However, writing a will
can help ensure that your wishes about inheritance are respected. When
preparing a will, you will need to appoint an estate liquidator. The liquidator is
248 l AFTER DEATH
responsible for carrying out the instructions stated in your will. Generally, you
should appoint someone you trust and who you think will outlive you. You
should also appoint a backup liquidator.
In Quebec, there are three types of will: a notarial will, which is drafted by a
notary; a witnessed will, which can be written by mechanical means and signed
by the testator and two witnesses; and a hand-written will, which requires no
witnesses. Only the notarial will is considered an authentic instrument. If your
friend has left a notarial will, the estate can be liquidated immediately. If any
other type of will is left, the document must go through the probate process
before further action is taken (see heading, “Probate” below).
You can obtain brochures on wills and estate planning from Communication
Québec. Bookstores and libraries are another good source of information.
However, check where the book was written to ensure that the information it
contains applies to Quebec. It is a good idea and relatively inexpensive to
consult a notary when drafting a will. Many financial institutions (i.e., banks,
trust companies, credit unions) offer estate planning services.
n
Financial documents
Your executor should know where all financial and insurance documents are
kept (i.e., in the home or in a safety deposit box). The same applies for any
active utility, credit card, loans or other payable accounts. At the time of death,
the executor will need to assess the total debt of the estate and make the
necessary arrangements for payment of outstanding accounts. Some of these
accounts may have insurance clauses that will cover the debt. If there will be a
delay in meeting payments, consult with creditors and ask for more time before
the payments are due.
As with debt, the executor will need to assess total income. This means looking
into retirement investments, insurance and employee benefits, life insurance,
social security death benefits, union and fraternal benefits, protection through a
credit union, etc. When reviewing these sources of income and death benefits,
check to find out if there will be survivor income from these sources.
n
Probate
Probate is a court procedure that verifies a will and clears title to property
inherited through a will or under certain laws. Probate proceedings provide an
orderly inheritance process, but may be costly and time consuming (sometimes
a year or more). Generally, assets are frozen until a will has gone through the
probate process. A lawyer or estate management professional can help an
executor manage pressing financial obligations during the waiting period.
Once again, there will be costs related to using these professional services.
AFTER DEATH l 249
In Quebec
Probate is a court procedure that verifies a will and clears title to property
inherited through a will or under certain laws. Unless one of the heirs
challenges the will, probate takes one or two months and is not very expensive.
Generally, assets are frozen until a will has gone through the probate process.
A lawyer or estate management professional can help a liquidator manage
pressing financial obligations during the waiting period. These services are not
free of charge.
If your friend has left a notarial will, the liquidator can begin to administer the
estate immediately. However, any other type of will is subject to the probate
process prior to liquidating the estate. (For more information on the different
types of will, see the section “When There Is a Will - In Quebec”).
The keys to managing the legal and financial matters of an estate are: be
careful, go slow, and seek the advice of someone who is experienced in these
matters or is a trusted business advisor.
n
Closing someone’s home
The first thing to do is to find out whether your friend rented or owned his
home or apartment. If rented, the executor needs to review the lease and
discuss lease termination with the landlord (or perhaps a lease transfer to
someone else per the terms of a pre-death agreement). When death occurs
close to the end of the month, a decision will need to be made whether to get
everything out before the end of the month or to pay rent for one additional
month — to “buy” some time to take care of your friend’s personal belongings.
If there is money in the estate to do this or someone is able to cover the rent for
an additional month, this may be a good idea. Rushing through the process of
taking care of your friend’s belongings might result in decisions that you may
regret.
If the home, condo or apartment was owned or co-owned by your friend, the
executor will need to follow the terms and conditions outlined in the mortgage,
deed of ownership, etc. It may be as simple as a co-owner continuing to live
there while the appropriate paperwork is completed to reassign ownership of
the dwelling. The same procedures should be followed for other dwellings,
such as a summer cottage. When dealing with ownership issues and mortgages,
it is important to seek professional advice from a lawyer and/or financial
institution estate manager and, perhaps, a realtor.
Based on the decisions regarding what to do with the home or apartment, the
executor will need to get in touch with various utility companies, such as
hydro, telephone, cable, the city (water and property taxes), etc. Dates for
termination of services and terms for closing accounts will need to be arranged.
250 l AFTER DEATH
It may be necessary to contact the landlord or condo manager to arrange access
to the dwelling and to make provisions for someone to stay in the apartment
while the household is being dissolved. Ask about access to any storage facility
in the building. Surprisingly, people often forget to inquire whether a storage
locker was used. The contents of these lockers will need to be included in the
disposition of personal belongings.
n
Distributing personal belongings
Taking care of your friend’s personal belongings can be painful, especially for
partners and family members. Unless there is a reason to get this job done
quickly, there’s no need to rush. Take your time. Begin the work only when
you are ready. The process of going through your friend’s clothes, drawers and
cupboards will probably stir up strong feelings or painful emotions. Some
people like to do this work alone; others need the company and support of
someone close.
It is often helpful for a small group of people, including the executor of your
friend’s estate, to get together to assess how much work needs to be done. The
executor will know what needs to be taken care of first or what might have to
wait until the will goes through probate.
Any pets that are left behind must be looked after right away. Did your friend
make arrangements for someone to take care of the pet after his death or leave
instructions on what should be done? Some people leave instructions for a pet
to be euthanised after their death. Others hope a new home can be found.
Check first with family and friends to see if anyone wants to welcome the pet
into their home. If no one comes forward, you may want to post a notice in the
community or contact the Humane Society for suggestions on what to do.
Hopefully, your friend has left a list of “directives” to instruct the executor
what to give, and to whom. This is a list of special items or family heirlooms
that have particular meaning to certain people and your friend. This list may or
may not be included in the will. Legally, the executor does not have to follow
the list of directives, but having the list can help resolve conflict between
family and friends.
It may be important to add people and items to the list of directives after your
friend’s death — to identify special mementos that people may request, or
which you feel are appropriate matches, although not on the list of directives.
Don’t feel pressured to give anything away until you’re ready. Take the time;
you need to make sure that the request is appropriate. Ask these people to wait.
If you’re not sure what to do, speak to other people — the executor, for
example — and get a second opinion. Once something is gone, it’s generally
very hard to get it back.
AFTER DEATH l 251
What To Do
It would take several pages to specifically suggest what you might do with
your friend’s personal belongings. Instead, here are some ideas on how to get
the job done and some helpful resources. Before anything leaves the home,
make sure you consult with the executor of your friend’s estate. It may be
necessary to sell certain items in order to generate revenue to reconcile the
estate (pay off debts, etc.).
o Perishables: First, deal with perishables, such as food items in the
refrigerator, freezer or cupboards. Water and care for plants until you’ve
found a new home for them.
o Personal documents: These items include financial statements, insurance
policies, bills, personal letters, diaries, work-related documents, photo
albums, etc. It’s a good idea to go through these items at a separate time.
Should you want to do this at a later date, collect these items first and store
them in a safe place so they won’t not get lost in the cleanup or viewed by
others who shouldn’t see them. The executor will need access to some of
these documents in order to begin the process of settling the estate (see
legal and financial matters above).
o Medical equipment: Arrange to return any medical equipment that was on
loan. If you’re not sure who owns it, ask the Home Care nurse or someone
else on the care team. If the equipment was purchased, then it could be
given to someone else who needs it, donated to your local AIDS
organization, hospice or the Red Cross or sold for estate revenue.
o Drugs and supplies: Left over drugs can be taken to a pharmacy for
disposal. Don’t flush them down the toilet. However, in some cities, there
may be a system in place where drugs can be given to an AIDS
organization, doctor or other service that will get them to someone who
really needs them. DO NOT DO THIS YOURSELF or give the drugs to
someone on the care team. You could get into problems for “trafficking.”
Caregiving and other medical supplies may be donated to your local AIDS
organization or hospice. If purchased, it may be possible to return them for
a refund, but this is difficult to do unless the supplies remain securely
packaged.
o Clothing and linens: Many people will consider certain items of clothing
as a memento of your friend. Put these special clothing items aside. The rest
can be sold in a garage sale or donated to a local organization. The same
applies to bed, bath and table linens.
o Kitchen items: These items can be given away or sold in a garage sale.
Certain appliances may still hold significant value so it will be important to
252 l AFTER DEATH
consult with the executor before disposing of these items. The same rule
applies to special china, crystal, flatware and silver.
o Furniture: Dealing with furniture can be a chore — especially large items,
such as pianos and bookcases. Furniture, TVs, stereo systems, etc. may be
given away, sold or donated. Special care should be given to antiques or
family heirlooms. It may be necessary to have these pieces appraised for
their value before a decision is made on what to do with them. Consult with
the executor.
o Art: Paintings, prints, photographs, sculpture, objets d’art and other
collectibles may hold special meaning for certain people as well as
represent a significant dollar value. Great care must be taken when
distributing these items. If not directed for distribution (for example, to an
individual, gallery or organization), the executor should be consulted. These
items could be sent out for auction or sold privately, with sale proceeds
going to the estate or designated charities.
o Books and music: Some people have large collections of books and music
(CDs, tapes, albums, videos, etc.). Some books are family heirlooms or
special editions that hold great sentimental and/or dollar value. Treat these
with care. Books and music items also make excellent mementos for family
and friends. These items can be given away, sold or donated to various
libraries or organizations, based on the subject matter.
o Vehicles: Cars, vans, trailers, boats, etc. may be listed as directives to
family or friends or even an organization. Whatever the case, given away or
sold, there is some paperwork involved when transferring ownership of a
vehicle and its license. This should be handled by the executor and in
accordance with provincial regulations.
The list goes on and on. Once everything that has been directed for distribution
is given away, the remaining items in the household can be donated or sold
through an auction house, private sale (newspaper listing) or at a garage sale.
Should you decide to hold a garage sale, get as much help as you can. Choose
people you trust who may not have been as close to your friend as you were. It
will be difficult for you to see your friend’s belongings sold and you may need
to take several breaks from the sale. You may not want to be there at all. The
executor will need to set the rules on how to manage sales, since the revenues
will probably need to go through the estate.
AFTER DEATH l 253
n
Taking care of the care team
Throughout this manual we have addressed the need for individual caregivers,
and care teams as a whole, to care for themselves and each other. While it is
essential to do this while your friend is alive, it is equally important to do it
after his death. As discussed in Section 17, care team volunteers are not
exempt from the experiences of grief and bereavement.
Once the funeral or memorial service has taken place and before life moves
forward with new experiences and relationships, make sure the care team takes
the time to meet and “debrief” about the experience of caring for your friend.
Meet as often as necessary to work through your feelings, reactions and what
you learned through the care team experience. Honour yourselves and the care
you provided. Celebrate the moments of joy you experienced and appreciate
the lessons you learned, no matter how difficult.
It is important to do this simply because you may not be asked to be involved
in any of the activities described in this section. Sometimes, the connection
you had with your friend’s partner, family and friends suddenly disappears. It
may be too difficult for them to maintain the relationship at this time. While
that can be hard to deal with, remember, you have each other and those who
support you in your life. Reach out to them, hold them up and let them do the
same for you. Regardless of the outcomes after death, you were part of a
process that honoured the dignity of another person. In whatever way, you
helped your friend take control of his living with dying and his death. This is a
gift of the highest order and will remain with you for the rest of your life.
References
Ernest Morgan. Dealing Creatively with Death. A Manual of Death Education and Simple Burial.
Bayside, NY: Barclay House. 1990.
Paul Kent Froman. After You Say Goodbye: When someone you love dies of AIDS. San Francisco,
CA: Chronicle Books. 1992.
254 l AFTER DEATH
Notes
SECTION 19 l 255
Further Reading
& Resources
n
Introduction
Before reading this section, remember, your most important resource is you.
Many of us often underestimate our abilities and capacity to learn. All of us
have tremendous potential and in more ways than we can imagine. Believe in
yourself, in what you know and in what you can do. More often than not, you
will be surprised with how much you can handle and how much you can
understand.
It would be virtually impossible to list every potential resource that may help
you in your work on a care team. Instead, this section is intended to inform you
about some of the information that is out there while, at the same time, point
you in a direction where you can find more. Many new resources will be
developed after this manual is printed. Don’t forget the value of the care team
log as a primary resource. This is where you will find loads of important
information about what works and what doesn’t work with respect to caring for
your friend. Read it often and remember that what you record in the log will be
read by other members on the care team.
Add to this section as you see fit. Attach photocopies of articles or resources
that you have found helpful. Build this section to meet your needs and those of
your friend. Share your discoveries with the care team.
n
Community-based AIDS organizations
Since the beginning of the HIV epidemic, the number of community-based
AIDS organizations across Canada has grown significantly. Most urban centres
now have several AIDS organizations and many rural communities now have
an AIDS organization as well. The services and programs provided by these
organizations will vary a great deal. However, even though an AIDS
organization may not be able to provide you with the service(s) you need, most
of them should be able to help you find the information or assistance you’re
looking for.
256 l FURTHER READING & RESOURCES
To find out more about the AIDS organization(s) closest to you, contact the
Canadian AIDS Society at (613) 230-3580 or on the Internet at
http://www.cdnaids.ca.
n
Human resources
Although most of the resources listed in this section are in print form,
remember that people can be useful resources, too. In fact, many answers to
your questions can be found through communicating with another person.
Most health-care professionals experienced in palliative care and AIDS will be
more than happy to talk with you. USE THESE PEOPLE. Likewise, there may
be members on your care team who have been on a care team before. Talk to
them and find out how they have coped with problems or difficult situations in
the past. What has worked for someone else may be helpful to you or to your
friend. And when it is not, there is a great deal else for you to try. Be clear with
your questions and be honest about what you don’t know or don’t understand.
n
How to access professional help
In Section 2 (Getting Started), we mentioned the use of professional
health-care services such as Home Care. Because these services will differ
from province to province and, sometimes, from community to community, we
are not able to discuss them all. However, here are some hints on how to access
these services in your area.
1. Should you and your friend feel that professional help is required to meet
her caregiving needs, discuss the issue with her family doctor. In most
cases, the doctor can help you decide which professionals should be
consulted and how to access them. However, you should know that not all
doctors are fully aware of the vast range of services that may be available.
2. Another way to access professional help is through contact with staff at a
hospital outpatient or community-based clinic (where your friend may
have been or is a patient), or at your local community-based AIDS
organization. Here, again, hooking up with Home Care or other services
can be arranged.
3. You can also connect your friend to professional help through direct
contact with a provincial or municipal Home Care agency. These services
are usually listed in the Blue Pages (provincial or municipal sections) of
your telephone book under the general heading, “Health.” Your local
public health unit should be able to steer you in the right direction. Do not
be surprised if it takes several phone calls before you are connected with
someone who can help you with your needs.
FURTHER READING & RESOURCES l 257
4. Many communities across Canada have special hospice programs which
provide either institutional or home-based hospice care. These programs
can provide professional advice and/or services related to palliative care.
Some of these programs have trained volunteer pools which may be a
useful resource to the care team. Your local AIDS organization, public
health unit or Home Care program will know about these services and how
to contact them.
5. Should your friend have a group or private insurance plan with extended
health-care benefits (e.g., private duty nursing), check the policy to make
sure you are aware of how to arrange for these services and how they will
be paid for. Some policies will require a co-payment; others will pay for
services in full. In most cases, there will be financial limits to the amount
of services you can book. Private nursing agencies are listed in the Yellow
Pages. When checking these services out, be sure to ask whether or not
they have experience with caring for people who are dying with AIDS.
Also check with your local AIDS organization to discover if they can
recommend a private nursing agency with a good “track record” in
HIV/AIDS home care.
6. If your friend is receiving some form of income assistance (either federal,
provincial or municipal), you should contact your friend’s assistance
worker to find out how professional services can be arranged and whether
or not the income assistance program will cover the costs.
n
Libraries and bookstores
Various resources on HIV/AIDS and on death and dying may be available
through your local public library. The library staff may also know where else
you can find this kind of information. Your local AIDS organization or public
health unit may have a library. Some churches and funeral homes may also
have small collections of books and pamphlets that you can sign out for use at
home.
Many books on HIV/AIDS and on death and dying are available for purchase
in bookstores. Specialty bookstores are usually your best bet when looking for
this kind of information. Gay and lesbian, religious, and health-related
bookstores often carry a wide range of titles related to HIV/AIDS and coping
with death and dying. Many university bookstores carry excellent reference
books on HIV/AIDS and palliative care, however, these books are usually very
technical in nature and expensive to buy.
n
The Internet
For those of you with access to a computer and modem, accessing information
electronically can be a convenient and efficient way to find answers to your
questions. Today there are hundreds of HIV/AIDS-related sites on the
worldwide web. When using the Internet to find information, pay careful
attention to the source of the information you have found. Is it a credible and
well-known organization? Is the information current and up-to-date? Does the
author of the information provide a source or is it an opinion? Given that the
Internet provides you with access to information from anywhere in the world
and that the amount of information available on the “www” is massive, you
need to be cautious with how you use the information you find. A good rule of
thumb is to stick to sites that are close to home such as Canadian and US sites.
The best information site in Canada is run by the Community AIDS
Treatment Information Exchange at http://www.catie.ca or call
1-800-263-1638. Although most of the information provided by CATIE relates
to treatment, the site has links to many other useful sites in both English and
French.
The National AIDS Clearinghouse of the Canadian Public Health
Association holds a vast library of resources, some of which are available for
distribution at the cost of postage and handling. To browse through the
Clearinghouse catalogue, visit http://cpha.ca/cpha/ch/ch.html or call
(613) 725-3434.
n
The
Comprehensive
Care Guide
Reading and resources
In collaboration with various AIDS agencies and professional associations, the
AIDS, Care, Treatment and Support Program of Health Canada has produced a
series of modules as part of the Comprehensive Guide for the Care of Persons
with HIV Disease. Copies of these modules in English or French are available
through the National AIDS Clearinghouse, (613) 725-3434.
Module 1:
Module 2:
Module 3:
Module 4:
Module 5:
Module 6:
Module 7:
Adults — Men, Women and Adolescents
Infants, Children and Youth
Nursing Care
Palliative Care
Managing Your Health: A Guide for People Living with HIV
or AIDS
Psychosocial Care
Rehabilitation Services for People Living with HIV/AIDS
(In press)
Care for Asian
Canadians
In collaboration with Health Canada and the AIDS Committee of Toronto,
Asian Community AIDS Services (Toronto) has recently published Caring
Together: An AIDS Care Team Manual for Asian Canadians. Adapted from
Living with Dying — Dying at Home, Caring Together effectively addresses
the needs of AIDS care teams involved with the care of the dying in Asian
communities in Canada. This manual is available, through the National AIDS
Clearinghouse, in Chinese, Vietnamese and Tagalog.
n
Caregiving at
Home
Selected readings
AIDS Care at Home: A Guide for Caregivers, Loved Ones, and People with
AIDS. Judith Greif & Beth Ann Golden (1994) New York: Wiley.
The AIDS Caregiver’s Handbook. Ted Eidson, Ed. (1993) Second edition. New
York: St. Martin’s Press.
Our Neighbors as Ourselves: A Guide for Neighbors Helping Neighbors who
live with HIV/AIDS and The Ripple Effect. Carole Grant-White (1993)
Herndon, VA: Acropolis Books.
Share the Care: How to Organize a Group to Care for Someone Who is
Seriously Ill. Cappy Capossela & Sheila Warnock (1995) New York: Fireside.
Handle with Care: A Handbook for Care Teams Serving People with AIDS.
Ronald H. Sunderland & Earl E. Shelp. (1990) Nashville: Abingdon Press.
Taking Care: A Guide for Caregivers: Care in the Home for People Living with
HIV or AIDS. Carol Nicholson (1992) Thunder Bay: AIDS Committee of
Thunder Bay.
The 36-Hour Day: A Family Guide to Alzheimer’s Disease, Relating
Dementing Illnesses, and Memory Loss in Later Life. Nancy L. Mace & Peter
V. Robins (1981) Baltimore, MD: The John Hopkins University Press.
Caring for a Loved One with AIDS: The Experiences of Families, Lovers and
Friends. Marie Annette Brown & Gail M. Powell-Cope (1992) Seattle, WA:
University of Washington School of Nursing.
Twelve Weeks in Spring. June Callwood (1986) Toronto: Lester & Orpen
Dennys.
Dying at Home: A Family Guide for Caregiving. Andrea Sankar (1991)
Baltimore, MD: The John Hopkins University Press.
Coming Home: A Guide to Dying at Home with Dignity. Deborah Duda (1987)
New York: Aurora Press.
Caring for the Dying: A Guide for Caregivers in Home and Hospital. Beverly
Hall (1988) Toronto: Anglican Book Centre.
Nutrition
Healthy Eating Makes a Difference: A Food Resource Book for People Living
with HIV. Sheila Murphy (1993) Canadian Hemophilia Society and Health &
Welfare Canada. (Available through the National AIDS Clearinghouse. A great
resource for recipes!)
Positive Nutrition for HIV Infection and AIDS. Stacey J. Bell & R. Armour
Forse (1996) Minneapolis, Minn: Chronimed Publishing.
Positive Cooking: Cooking for people living with HIV. Lisa McMillan, Jill
Jarvie & Janet Brauer (1997) Garden City Park, NY: Avery Publishing Group.
Cooking for Life: A Guide to Nutrition and Food Safety for the HIV-positive
Community. Robert H. Lehmann (1997) New York: Dell Publishing.
EAT UP: Nutrition advice and food ideas for people living with HIV and AIDS.
Charlie Smigelski (1996) Boston, MA: Tufts University School of Medicine.
Psychological
and Emotional
Concerns
Taking Care of Your Self: HIV and Self-Care. Michael A. Lindsay, Stanley K.
Fevens & David G. Gee (1996) Halifax: AIDS Coalition of Nova Scotia.
A Crisis of Meaning: How Gay Men are Making Sense of AIDS. Steven
Schwartzberg (1996) New York: Oxford University Press.
Fear and AIDS/HIV: Empathy and Communication. Suzanne Lego (1994)
Albany, NY: Delmar Publishers.
The Impact of AIDS: Psychological and Social Aspects of HIV Infection. Jose
Catalan, Lorraine Sherr & Barbara Hedge, Eds. (1997) Amsterdam: Harwood
Academic Publishers.
HIV Mental Health for the 21st Century. Mark G. Winiarski (1997) New York:
New York University Press.
Treating the Psychological Consequences of HIV. Michael F. O’Connor, Ed.
(1997) San Francisco, CA: Jossey-Bass Publishers.
I Don’t Know What to Say — How to Help & Support Someone Who is Dying.
Robert Buckman (1988) Toronto: Key Porter Books Ltd.
Voices That Care: Stories and Encouragements for People with AIDS/HIV and
Those Who Love Them. Neal Hitchens (1992) Los Angeles: Lowell House.
The Caregivers Journey: When You Love Someone with AIDS. Mel Pohl et al.
(1991) New York: Harper Collins.
AIDS, Sharing the Pain: A Guide for Caregivers. Bill Kirpatrick (1990) New
York: The Pilgram Press.
Emotional First-AID Manual: A Practical Resource for Caregivers, Volunteers
and Professionals. John Stewart (1988) Vancouver: Canadian Mental Health
Association.
Let Me Decide. Dr. William Molloy (1988) Penguin Books.
AIDS-related
Illnesses
AIDS/HIV Treatment Directory. American Foundation for AIDS Research
(Updated at least annually) New York: Author. Tel: (212) 682-7440 E-mail:
[email protected]
Managing Your Health: A Guide for People Living with HIV or AIDS. Brent
Patterson & Francis Robichaud, Eds. (1996) Toronto: The Community AIDS
Treatment Information Exchange & The Toronto People with AIDS
Foundation.
Living Well with HIV & AIDS. Allen L. Gilford, Kate Lorig, Diana Laurent &
Virginia González (1997) Palo Alto, CA: Bull Publishing Company.
The Guide to Living with HIV Infection. John G. Bartlett & Ann K. Finkbeiner
(1996) Baltimore, MD: John Hopkins University Press.
Complementary
Therapies
Alternative Health Care: The Canadian Directory. Bonni L. Harden & Craig
R. Harden (1997) Toronto: Noble Ages Publishing Ltd.
Alternative Medicine: The Definitive Guide. The Burton Goldberg Group &
James Strohecker. Exec. Ed. (1994) Puyallup, WA: Future Medicine
Publishing.
A Comprehensive Guide to Chinese Herbal Medicine. Ze-lin Chen & Mei-fang
Chen (1992) Long Beach, CA: Oriental Healing Arts Institute.
Staying Healthy with HIV: A Guide to Alternative and Complementary
Therapies. David Baker & Richard Copeland (1993) Hayward, CA: Author.
Death,
Dying, Grief,
Bereavement
Grief and AIDS. Lorraine Sherr, Ed. (1995) Chichester, UK: John Wiley &
Sons.
A Loving Testimony: Remembering Loved Ones Lost to AIDS. Leslie Newman,
Ed. (1995) Freedom, CA: The Crossing Press.
Heavenly Hurts: Surviving AIDS Related Deaths and Losses. Sandra Jacoby
Klein (1998) Amityville, NY: Baywood Publishing.
The Mourning Handbook. Helen Fitzgerald. (1995) Toronto: Simon &
Schuster.
Timely Death: What We Can Expect and What We Need to Know. Anne
Mullins (1997) Toronto: Vintage.
How to Go on Living When Someone You Love Dies. Therese A., Rando
(1991) New York: Bantam Books.
Finding Your Way: Grieving the Death of Your Child. Joanne Chekryn Reimer
& Betty Davies (1995) Vancouver: Canuck Place.
AIDS: The Ultimate Challenge. Elizabeth Kubler-Ross (1987) New York:
MacMillan Publishing.
On Dying with Dignity. Patrick Francis Sheehy (1981) New York: Pinnacle.
Living with Dying: A Guide for Relatives and Friends. Glen W. Davidson
(1990) Minneapolis: Augsberg Fortress.
Just Hold Me While I Cry. Bobbie Stasey (1993) Elysian Hills.
After You Say Goodbye: When Someone You Love Dies of AIDS. Paul Kent
Froman (1992) San Francisco: Chronicle Books.
Letting Go with Love — The Grieving Process. Nancy O’Connor (1989). New
York: Bantam Books.
The Grieving Recovery Handbook — A Step by Step Program for Moving
Beyond Loss. John W. James & Frank Cherry (1990) New York: Harper &
Row.
Spirituality
AIDS, Ethics & Religion: Embracing a World of Suffering. Kenneth R.
Overberg, Ed. (1994) Maryknoll, NY: Orbis Books.
Rituals for Living and Dying: From Life’s Wounds to Spiritual Awakening.
D. Feinstein & P. Mayo (1990) San Francisco, CA: Harper.
Final Gifts. M Callanan & P. Kelly (1992) New York: Poseidon Press.
Death Dreams. K. Kramer (1993) New York: Paulist Press.
For Those We Love: A Spiritual Perspective on AIDS. AIDS Ministry Program
— The Archdiocese of St. Paul (1990 - 2nd edition) Minneapolis: Pilgrim
Press.
Serenity. Paul Reed (1990 - Second edition) Berkeley, CA: Celestial Arts.
AIDS: The Spiritual Dilemma. John E. Fortunato (1987) NY: Harper & Row.
Women and
AIDS
In some large cities across Canada, there are AIDS organizations that
specifically address issues of concern related to women and HIV/AIDS. These
groups can be useful sources of information when planning care for women
with AIDS. They can also help to direct you to professionals who are
experienced with HIV/AIDS care for women. Again, contact your local AIDS
organization, or the one closest to your area, for information on how to get
hooked up with these special groups.
Inventory of Materials Available for Women Living with HIV and AIDS.
National Women and HIV Project (1995) Edmonton: Canadian AIDS Society.
Positively Sexual Women: A Resource for Women Living with HIV/AIDS.
Karen Colterjohn & National Women and HIV Project (1997) Ottawa:
Canadian AIDS Society.
Taking Care of Our Health: A Study of Women Living with HIV/AIDS and the
Treatments They Use. Laurette Levy, Ron Foley & Sarah Forer (1994) Toronto:
Voices of Positive Women.
Vamps, Virgins and Victims: How can women fight AIDS? Robin Gorna (1996)
London: Cassell.
Women and AIDS: Coping and Care. Ann O’Leary & Loretta Sweet Jemmott Eds. (1996) New York: Plenum Press.
Women and AIDS: A Practical Guide for Those Who Help Others. Bonnie
Lester (1989) New York: Continuum.
Women, Children and HIV/AIDS. Felissa L. Cohen & Jerry D. Durham, editors
(1993) New York: Springer Publishing Co.
Children and
AIDS
For information on how to care for children with AIDS and their families,
contact your local children’s hospital to inquire about special programs. Your
local AIDS group may also know who to contact as well as have other
resources you can use.
Morning Light: An Educational Storybook for Children and their Caregivers
about HIV/AIDS and Saying Goodbye. Margaret Merrifield & Heather Collins
(1995) Toronto: Stoddart.
My Dad Has AIDS. Alexander, Earl and Sheila Rudin and Pam Sejkora (1996)
Minneapolis, Minn.: Fairview Press.
What’s A Virus Anyway? The Kids Book About AIDS. David Fassler and Kelly
McQueen (1990) Burlington, VT: Waterfront Books.
Uncle Paul has AIDS. Nott, Phil and Sally Heinrich (1994) Australia: Little
Genn Publications.
HIV/AIDS and Child Care: Fact Book. Barbara Kaiser & Judy Sklar
Rasminsky (1995) Ottawa: Canadian Child Care Federation.
Learning by Heart: AIDS and School Children in American Communities.
David L. Kirp (1989) New Brunswick: Rutgers University Press.
Women, Children and HIV/AIDS. Felissa L. Cohen & Jerry D. Durham, editors
(1993) New York: Springer Publishing Co.
Notes
APPENDIX A l 265
Caring for the
Visually Impaired
The principles of palliative care remain the same when you are caring for
someone who is blind or visually impaired. How you provide your care,
however, will depend on your friend’s degree of visual impairment and on his
experience with vision loss.
Some people with AIDS lose part or all of their sight as a result of an illness,
for example CMV retinitis. For some, this loss is gradual and can be delayed
by special medications and treatments. Others do not respond to these drugs
well, and they may lose their sight very rapidly. Whatever the cause, losing
one’s sight can be a traumatic and devastating experience. Understanding what
this loss means to your friend is crucial if you want to offer him compassionate
care rather than pity.
Remember to consider the history of your friend’s visual impairment. People
who were blind or visually impaired at birth will respond to you and your care
very differently than those who have lost all or part of their sight later in life
through injury or illness. These people will have learned and developed ways
of coping with their visual impairment. Get to know these ways of coping, and
follow your friend’s direction. Should he be coping with a recent loss of sight,
you will probably need to deal with much more than practical concerns related
to visual impairment.
The key to providing care to someone who is blind or visually impaired is to
focus on his abilities rather than his disability. Understanding what the loss of
vision means to your friend, encouraging him to be as independent as possible
and providing for his safety are the most important things to do. Listed below
are some specific guidelines to caring for someone who is visually impaired or
blind. For more information contact your local branch of the Canadian
National Institute for the Blind.
What To Do
Treat blind or visually impaired persons as you would anyone else. They do the
same things you do but they sometimes use different techniques.
If you are not sure how much your friend can see, ask! Not all blind or visually
impaired people have total loss of sight or live in total darkness. Many people
266 l CARING FOR THE VISUALLY IMPAIRED
who are visually impaired see in varying degrees: from light perception to the
ability to read large print with a magnifier. Others may be able to read signs
and see objects from a distance; but be unaware of obstacles directly in front of
them because of their restricted field of vision.
Some people with vision impairment are very sensitive to light and will need to
wear sunglasses when going outdoors or will ask you to keep the lights dim in
the home. Others have the opposite need, that is to keep the lights on so that
they can make the most of the vision they have, i.e., negotiating shadows.
o Speak to a blind or visually impaired person in a normal tone of voice. You
don’t need to shout. Identify yourself and let him know you are addressing
him by using his name or touching his arm. Be sure to tell him when you
are leaving.
o When you’re out walking, let a blind or visually impaired person take your
arm. Pulling him by the hand is awkward and confusing.
o Do not hesitate to use the words “see,” “look,” or “read.” Blind or visually
impaired persons use these words as often as anyone else.
o When necessary, help your friend to become familiar with his room by
describing the position of the furniture, windows, bedside table and what is
on it, and so on.
o Once your friend is oriented to his surroundings, do not move any furniture
or other articles without informing him of the change. Whenever possible,
do not leave cleaning materials or other potential hazards (wheelchairs,
walkers, laundry hampers) in your friend’s travel path.
o Describe your friend’s surroundings, whether it is the view from a window,
an interesting incident on television or the layout of an unfamiliar room.
Point out helpful details: “The door pulls towards us on the left.” “We are
approaching the staircase that goes up.”
o Describe all your caregiving procedures clearly. Explain them before you
start and then again while you are doing them. Give directions clearly and
accurately. Pointing or using phrases such as “over there” will be of no
assistance.
o When serving your friend a meal, offer your assistance by telling him what
is on the plate and where. (It’s often helpful to use a clock analogy here: for
example, “Peas are at three o’clock, meat at twelve.”) Ask your friend if he
would like you to help with cutting his meat.
CARING FOR THE VISUALLY IMPAIRED l 267
o Never distract a dog guiding a blind person. That dog is responsible for the
safety of the blind person, and such interference could lead to unnecessary
tragedy.
o Avoid the impulse to rush to a blind person’s aid. If you are not sure
whether he needs your assistance, ask.
o Remember, when you meet a blind or visually impaired person: the key
word is person, not blind.
Reference
The Canadian National Institute for the Blind (National Office), 1929 Bayview Avenue, Toronto,
Ontario M4G 3E8; Tel: (416) 486-2500.
268 l CARING FOR THE VISUALLY IMPAIRED
Notes
APPENDIX B l 269
Caring for the
Deaf, Deafened &
Hard of Hearing
There is no single approach to caring for people who are deaf, deafened or hard
of hearing. Each person has a preferred communication mode, and even that
will change as illness progresses. The writers have chosen to look at the basic
issues and refrain from prescribing any one approach that could give caregivers
the false impression that they have all the answers regarding what is needed to
care for a deaf friend or family member.
In the experience of the Deaf Outreach Project in Toronto, the care team for a
deaf person needs to be made up of other deaf people. These people could be
deaf volunteers, deaf professionals, family members and friends. The issues
that will be dealt with are different from anything that you may have to handle
in a hearing world. Deaf people who are educated in HIV/AIDS are best suited
to serve on a care team for a deaf person.
These are the issues that the care team will need to address when a deaf,
deafened or hard of hearing person is dying and wants a care team:
•
•
•
•
•
•
culture
accessibility
peer support
communication
qualified interpreters
eye contact
If you have questions or concerns about setting up a care team for a deaf,
deafened or hard of hearing person, talk to a deaf issues professional or contact
a deaf persons’ AIDS resource group.
270 l CARING FOR THE DEAF, DEAFENED & HARD OF HEARING
For more information, please refer to the following resources:
Making Space for PHAs. Jim Young (1997) Ottawa: AIDS Committee of
Ottawa. A manual for setting up and operating a drop-in centre for persons
living with HIV/AIDS.
Hooking Up to Social Services. Eric Mykhalovskiy and George W. Smith
(1994) Toronto: Community AIDS Treatment Information Exchange. A report
on the barriers people living with HIV/AIDS face when accessing social
services.
Me HIV+ . . . What Do? A Guide for Deaf People Living with HIV Disease.
Daniel D. Warthling with Sylvia J. López, M.S. (1997) Austin, TX: AIDS
Services of Austin.
HIV/AIDS & Disability: Building Partnerships. AIDS & Disability Action
Project of the BC Coalition of People with Disabilities (1994) Vancouver: BC
Coalition of People with Disabilities. A handbook to promote partnerships
between the HIV/AIDS and disability communities in Canada.
Taking Responsibility: Training the Educators. National AIDS Education
Training Seminar for the Deaf Community (1992) Hollywood, CA: AIDS
Education/Services for the Deaf.
Working with Deaf and Hard of Hearing Patients: A Guide for Medical
Professionals. D.E.A.F., Incorporated, Allston, MA.
Few organizations in Canada address issues related to AIDS and deafness.
Here are two:
Coalition sida des sourds du Québec (CSSQ)
1301 Sherbrooke Street East
Montreal, QC H2L 1M3
TTY/TDD: (800) 855-0511
Tel.: (514) 521-1780; Fax: (514) 521-1137
Deaf Outreach Project
400 - 399 Church Street
Toronto, ON M5B 2J6
TTY/TDD: (416) 340-8122
Tel.: (416) 340-8484 ext. 238; Fax: (416) 340-8224
CARING FOR THE DEAF, DEAFENED & HARD OF HEARING l 271
Notes

Living with Dying, Dying at Home

Transcription

Similar documents

Babies born from HIV/AIDS positive mothers

B U CA I

Full Text

- Malaysian AIDS Council

Press Release - African Union

Archived Field Experiences Aarti Agarwal, HIV

Reach Out brochure - Reach Out Nkokonjeru Parish Reach Out

English - Women In Europe

the e