Hold my Hand - BJC Hospice

Hold my Hand
Caring for a dying loved one
Caring for a dying loved one is not easy. You may have
known the end of life has been approaching or you may
have just recently been told that your loved one’s end may
be soon. Either way, you may not feel prepared to give care.
It is normal to feel sad, afraid, helpless and even angry.
Understanding what to expect and what you can
do to increase your loved one’s comfort may help.
It is impossible to predict exactly when someone will die. As
death approaches, however, your loved one may show signs
indicating that the end of life is near. These signs may start
as early as months or weeks prior to his or her end of life.
Our lives are unique; our deaths will be unique.
For that reason, we have included common symptoms and
occurrences along with care-giving tips. Our hope is to
prepare you so that you, too, can find comfort in knowing
that what is occurring is natural. We hope to give you
confidence so you can support your loved one’s with his or
her greatest needs at this time — comfort and support.
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BJC Hospice thanks you for the opportunity to support you
on this journey. Our goal is to help you and your circle of
support provide holistic care centered around your needs
and wishes. We want to help you understand what is happening so you find it easier to know what to do. It is our
honor and privilege to hold your hand as you care for your
dying loved one.
~ The Staff of BJC Hospice
About the author
Kimberly Roderique, RN, palliative care specialist with BJC
Hospice, has the passion and commitment that is driven
by a lifetime of personal experiences that help her deeply
understand the needs of families facing end-of-life care. With the help of others on the hospice team she created
this resource for caregivers.
“I have held the hands of many patients in their last days.
Each patient and family experience has opened my eyes
and heart to the struggles of the family members who are
saying goodbye. The most difficult time in my life was
saying goodbye to my 15-year-old son, Noah. Despite my
nursing experiences and the fact that I had helped so many
through this time in their lives I, too, struggled with doubt
and wonder about how to provide care for Noah. With
support and love from the BJC Hospice team and friends
and family, we made it through. I pray this booklet will help
you make it through, too.”
~ Kimberly
“The only way to the other side, is through.” ~ Helen Keller
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Table of Contents
Near your loved one’s last months................................ Page 5
Withdrawal............................................................... Page 5
Decreased desire to eat............................................ Page 7
Hydration.................................................................. Page 9
Disorientation or confusion................................... Page 10
Talking with your loved one.................................. Page 11
Days to hours............................................................... Page 12
Energy surge........................................................... Page 12
Restlessness and confusion.................................... Page 13
Breathing and congestion...................................... Page 14
Skin color and body temperature changes............ Page 15
Blood pressure and heartbeat................................ Page 16
Unresponsiveness................................................... Page 17
The final moment........................................................ Page 18
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Near your loved one’s last month
Withdrawal
Your loved one may no longer want to participate in
activities or conversations. Words lose their importance;
touch and shared silence take on more meaning.
This time of withdrawal may be accompanied with periods
of your loved one closing his or her eyes during
conversations, not being concerned with daily routines or
world events. Sleep increases and naps become common
throughout the daytime. He or she may say “I am dying,”
“I am tired,” “I don’t want to go to the hospital anymore,” or
he or she may simply say “I am done.” Although withdrawal
is a normal, expected occurence in the dying process, if
you are concerned that your loved one’s withdrawal is
premature, ask your hospice team for guidance.
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Hold my Hand
This time of withdrawal has
a purpose. It does not mean
loved ones have stopped caring
and it does not mean they have
given up. They are showing the
greatest strength possible —
acceptance. They may even be trying to convince those
around them that they are ready for their next steps in their
life journey.
You can support them by asking them what they need at
this time. Seize opportunities for conversation or visits from
friends when your loved one expresses interest. Talk with
him or her about memories, important events from the past
and life accomplishments.
Listen to your loved one when he or she talks openly.
Be accepting of apologies given. Be accepting of advice
given to you by your loved one ­— often an attempt to
leave a legacy.
Listen and watch for non-verbal cues. A wave of the hand
may mean “I’m tired, I need to sleep now.” A hand reached
out to you may mean “I love you, I need your touch, or
thank you.” Words are becoming more difficult to form at
this time. If your loved one likes music, play music often
and quietly. Many people believe important work is being
done inside as your loved one is preparing to separate from
this world.
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Decreased desire to eat
At this time your loved one’s body no longer needs
nutrition for growth energy and forcing food can bring
discomfort from delayed digestion. This can be seen
through constipation, nausea, vomiting, cramping, bloating,
or uncontrolled diarrhea (commonly seen if your loved one
is continuing to receive nutrition through a feeding tube).
This often is the most difficult time as a caregiver. Up to
this time, you have been told to encourage nutrition.
Social togetherness and pleasure have come by sharing
meals together. Not encouraging eating seems to go against
how you have always cared for your loved one. You may
feel that you are “starving” your loved one by not
encouraging food or fluids.
Please know you are not starving your loved one.
Not eating is a natural part of the dying process.
A natural progression is usually seen. Your loved one may
say foods no longer taste good. It may become difficult to
swallow. Meats and vegetables are less desired and more
difficult to eat. Sweets are often requested. Liquids are
preferred to solids. Eventually, even soft foods and liquids
are no longer desired.
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Hold my Hand
Your loved one will receive
more strength from your acceptance and loving support
than from food.
You are allowing his or her
body and mind to travel a
natural path. You may offer a drink, a bite, suggest a food
if you feel the need to do so. Accept your loved one’s
response. You are comforting him or her by not forcing
something that can cause discomfort.
It may be helpful during this time to see the
relationship between eating and growth. As you see
in a newborn baby, our bodies were designed to
eat for growth and energy; nearing end of life this
physical growth and energy is no longer
needed. Our bodies and minds are working,
but not for physical growth. As our bodies were
designed to begin this life, we are also designed
to leave this life.
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Hydration
Your loved one may have received intravenous fluids
(IV fluids) for hydration at one time. During the last weeks,
days, or hours of life, receiving these fluids tends to cause
more discomfort. Due to the slowing of your loved one’s
body systems, these fluids will no longer go where they are
used by the body the way they did before. They will tend
to collect in extra spaces in tissues and organs. This swelling may cause shortness of breath, pain, aching, itching, or
fluid leaking out of the skin.
Hold my Hand
Not using fluids can be a
comfort. Dehydration lessens
consciousness, promotes sleepiness and diminishes pain.
Your loved one’s confusion
may increase at this time.
If he or she is alert, keep his or her mouth moist by using
lemon drops or offering small sips of water, crushed ice or
other preferred liquids.
If he or she is not alert, use mouth swabs moistened in
water or diluted mouth wash and non-petroleum based lip
balm frequently. Your loved one may clench down on the
mouth swab; simply hold it in place and allow his or her
mouth to relax before removing.
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Disorientation or confusion
Your loved one may speak about death in terms of leaving,
being in another place, or “going home” (even if in his or
her own home). He or she may also see, reach out, or talk
to a deceased person or a spiritual figure. There may be
talk about events that are unknown to others. You may see
him or her picking at bed covers or unseen things in the
air. He or she may say they are seeing objects in the room
that are not there.
These occurrences most often
Hold my Hand
seem to bring comfort to the
dying person. You can provide
support by listening and being accepting of what they are
experiencing. There is no need
to direct your loved one away
from their visions unless the visions are upsetting them. If
they are experiencing unpleasant hallucinations, the best
care to give is to rid the room of the unpleasant vision. For
example, if they are seeing people in the room that seem to
upset them, try acting the removal of the person from the
room. Attempt to assure your loved one that the person has
left. Call our hospice for support if your loved one becomes
agitated, has anxiety or is acting out.
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Talking with your loved one
At the end of life, people tend to ponder what their lives
meant, whom they have touched and what they have accomplished. They have a need to ask forgiveness, give forgiveness and leave a legacy. It has been witnessed that persons
with dementia sometimes have a time of coherence and
understanding at end of life. When the dying cannot talk,
we believe they can still hear, up to the last moments of life.
Talk about both the good and
Hold my Hand
difficult times. Help your loved
one meld the events of his or her
life together in an order that lets
him or her know how meaningful
they have been in this world. Tell
them how much you love them and that you will miss them.
Give and/or ask for forgiveness. If there are important people in your loved one’s life that cannot be near at this time,
hold the phone to his or her ear and let your loved one
hear them. If your loved one’s speech has become garbled
or difficult to understand, please know it is more important
to respond to the emotion that they are expressing than the
actual words. Some reassuring words are “I’m here,” “You
are safe,” “We are with you.”
As the last moments approach, give your loved
one permission to go when he or she is ready.
It has been found that they will stay in this world
for the benefit of those they love and may cause
a great ambivalence at this time.
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Days to hours
Energy surge or rally
There may be a short period of time, up to a day or two,
where your loved one seems to have improved. He or she
may be talkative, asking for a specific food, wanting to be
with people, and even have increased physical strength. At
first this may make you feel as if you had given up too soon
or that you misjudged what had been occurring. If your
loved one has been in the hospital and is going home with
hospice care, you may see this surge as he or she experiences the hope and security of going home. Though it can
be confusing to see your loved one with renewed vitality,
be assured you have not misjudged.
Hold my Hand
Hold my hand — Take
this opportunity to enjoy
being with your loved one,
share family memories and say
goodbye. Ask your loved one if
there are any final things he or
she would like to do or people he or she would like to talk
with. Would they like to feel the sunshine or hear a favorite song? Some families like to take pictures at this time to
create a comforting memory in later days.
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Restlessness and confusion
Many changes inside your loved one’s body may be causing
restlessness or confusion, including lack of oxygen, rising levels of unnecessary substances in the blood, or possibly pain.
Hold my Hand
Administer pain, breathing, and
anxiety medications as recommended by your hospice care team. At
this time, your loved one may no
longer be able to ask for medications; it is best to give these medications on a regular basis
to maintain comfort. Some people require higher doses of
medications at end of life than were necessary in the past.
Oxygen can sometimes be a comfort. However, if the
oxygen tubing is irritating your loved one, you can increase
his or her anxiety medication and/or remove the tubing.
Sometimes using a fan or keeping the room cool will
provide more comfort than the oxygen.
Reposition your loved one at least every one to two hours,
as needed, using pillows, stuffed animals or blankets.
Music If your loved one enjoys music, play favorite
selections to increase relaxation. Also relaxation videos and
sounds such as the ocean can be calming.
Speak with a soothing voice; repeat your name, the names
of others around, and reassure with a tender touch.
Sooth your loved one by giving a gentle hand, foot or back
massage. Applying warm or scented body lotion may also
be soothing.
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Breathing and congestion
Breathing patterns tend to become irregular. Breaths may
be rapid at 40 breaths per minute or slow to one breath per
minute and then change again. Breathing may stop for
seconds to minutes. Your loved one may sound congested
at times with a “rattling” sound. This is usually due to a
very small amount of saliva over the vocal cords.
Hold my Hand
Continue to administer
medications for comfort. There
are medications to decrease
the saliva if it appears uncomfortable to your loved one or
distressing to family members.
Turn or reposition your loved one often. Elevate the head
of the bed and turn his or her head slightly to one side with
a soft, clean towel under his or her chin. Even the slightest
movement of his or her head or upper body can help.
At this time it is no longer recommended to offer small
sips of fluids.
Administer pain, breathing and anxiety medications as
recommended by your health care team. At this time your
loved one may no longer be able to ask for medications. It
is best to give these on a regular basis to maintain comfort.
Some patients require higher doses of medications at end
of life than what they have needed in the past.
˜ 14 ˜
Skin color and body temperature changes
You will see changes due to the slowing down of your
loved ones’ circulatory system. It may be difficult or uncomfortable to see. Extremities may vary from pale, bluish or
purple to red with a rash-like appearance. This color and
pattern may “travel” to the center of his or her body. Body
temperature may fluctuate between fever and cold. There
may be a moist or clammy feeling to their skin.
Hold my Hand
Coldness — Use soft blankets
to cover extremities if your
loved one’s skin feels cold.
Do not use electric blankets.
Applying body lotion with a
gentle rhythmic touch may provide comfort. Warm the
lotion in the palm of your hand prior to massaging.
It is recommended not to raise the temperature in
your loved one’s room unless he or she is asking for
this. The warm temperature may cause increased
restlessness. If his or her temperature is fluctuating
between low and high it will be difficult to keep the
room temperature adjusted. Warmth in the room
may also cause discomfort for you and others who
are visiting or providing care, affecting your ability
to care for your loved one.
˜ 15 ˜
Warmth — Use sheets or thin covers when skin feels warm.
Cool wash clothes rubbed gently over forehead, under
arms, neck and extremities can be soothing.
If your loved has a fever and you sense they are
uncomfortable you can contact the hospice team or give
the medication you were instructed for lowering fever.
Blood pressure and heart beat
You may notice that the health care team are no longer
monitoring vital signs as frequently as they had in the past.
This is due to the fluctuating changes that occur. Vital signs
in most cases are no longer telling us valuable information
and obtaining them may cause discomfort. Although blood
pressure generally lowers, the heart beat may fluctuate
from as low as 20 beats per minute to 150 beats per minute. Higher rates are often associated with signs of pain.
˜ 16 ˜
Unresponsiveness
Your loved one may become unable to respond to his or
her environment. There may be a “glassy” look to eye and
frequent tearing, and eyes may be open but not appear to
be seeing.
We do not know at this time if
Hold my Hand
your loved one can see or if he
or she will speak again, but we
strongly feel that he or she can
hear. Others may have shared
stories with you of amazing
occurrences at end of life that
indicated that the dying person could hear. We have seen
these, too, and agree. Talk to your loved one; reassure him
or her of your presence, and say who is with you. Give
your loved one permission to go when he or she is ready.
Encourage him or her to rest. Be calm and provide a calm
environment. Continue to provide comfort and support.
Administer pain, breathing and anxiety medications as
recommended by your health care team. At this time your
loved one may no longer be able to ask for medications. It
is best to give them on a regular basis to maintain comfort.
Some patients require higher doses of medications at end
of life than what they have needed in the past.
˜ 17 ˜
The final moment
Each person dies at their right moment, whether it is alone
or surrounded by others. Some individuals may seem to
hold off, or bring on, the moment of death, such as
dying just after a close relative arrives from out-of-town.
For someone else, death may come when he or she is
alone, such as when everyone steps out of the room
momentarily. Sometimes people die at a time that feels as
if it spares certain loved ones from being there. At first you
may not recognize when this moment occurs. What appears
to be the last breath may be followed by one or more
long breaths.
Call hospice when your loved one stops breathing.
They will help you through the next steps.
You may want to call family or friends to be with you. You
may want to sit longer with your loved one and continue to
say good-bye. There is no reason to rush this. Eventually
your nurse will ask you to contact your funeral home,
if this has not previously been done.
“Hold my hand. Accept, allow, comfort. Say good bye to
the old me. Allow a new relationship to begin. Be open to
the things that may occur in the next days, months or years
that can reassure you that my spirit lives. Allow others to
comfort you now. Know that as I was born to live, I was born
to pass from this world. Your presence made a difference.”
˜ 18 ˜
Peace my heart ...
Peace, my heart, let the time for the parting be sweet.
Let it not be a death but completeness.
Let love melt into memory and pain into songs.
Let the flight through the sky end in the folding of the
wings over the nest.
Let the last touch of your hands be gentle like the flower
of the night.
Stand still, O Beautiful End, for a moment, and say your last
words in silence.
I bow to you and hold up my lamp to light you on
your way.
~ Rabindranath Tagore
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Ideas for taking care of yourself
Your role during this time can be very difficult.
You need to take care of yourself.
Following are some ideas you can start using today.
1. Breathe deeply and often. Make your tummy big like a
balloon, then blow the air out like you're blowing out
birthday candles.
2. Drink a WHOLE glass of water, several times a day.
3. Take a walk.
4. Go outside for fresh air a few times a day.
5. Keep small healthy snacks accessible.
6. Listen to music you like.
7. Talk with a friend or loved one.
8. Journal or list your thoughts, feelings, emotions or the
events around you.
9. Ask for a back rub, a foot rub, hand rub or a hug.
10. Pray or meditate.
11. Watch a movie or read a book that makes you laugh,
smile or inspires you.
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BJC Hospice — St. Louis
1935 Beltway Drive
St. Louis, MO 63114
314-872-5050
BJC Hospice — Alton
One Professional Drive
Suite 180
Alton, IL 62002
618-463-7100
BJC Hospice — Farmington
757 Weber Road
Farmington, MO 63640
573-760-8550
BJC Hospice — Sullivan
153 East Springfield Road
Sullivan, MO 63080
573-468-3630
www.bjchospice.org
BJC Hospice would like to thank the family
members and loved ones of our patients for
allowing us to care for them along their journey.
We send wishes of peace and healing.
Funding of this booklet is made possible through
family donations to BJC Hospice in honor of their loved one.
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Notes & Questions
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