Bailey-Boushay House Homefront Newsletter

homefront
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Bailey-Boushay House
Making the Most
of Every Day
Compassionate end-of-life care for
people with degenerative nerve disease
(see story inside)
Jonathan Buehler spent four months on
the waiting list to get into Bailey-Boushay.
Specialized end-of-life care helped him
feel safe, comfortable and engaged
in a stimulating community.
J
Making the Most of Every Day
onathan Buehler’s room at Bailey-Boushay House had
eye-catching art on every wall — a framed portrait of
Kramer from the Seinfeld TV series, a historic photo of
baseball great Babe Ruth, an aerial photograph of
mountainous Afghanistan, and colorful drawings by his
favorite artists — his three young daughters.
It was a vibrant space, reflecting the personality, passions
and humor of its 37-year-old resident.
“I try to look at the bright side,” he said.
“Jonathan became very interested in our process of caring for
people,” says Bailey-Boushay’s executive director Brian
Knowles. “He even wanted us to add ALS to the Bailey-Boushay
House mission statement.”
Whenever there are available beds, they are offered to people
with degenerative nerve disease for the safe and supportive
end-of-life care they and their families deserve.
“It’s the right work to do,” Brian says, “and no one else is doing
it. Those are exactly the same reasons Bailey-Boushay was
created for people with AIDS.”
Filling an unmet community need
Jonathan’s idea to raise ALS awareness echoes the spirit of
Diane, one of the first residents with ALS in 2007.
“It’s thanks to her unflagging advocacy that Bailey-Boushay is
the only nursing home in Washington state that actively seeks
patients with ALS,” Brian says.
ALS is a progressive, incurable disease that breaks down tissues
in the nervous system. As patients lose the ability to control
and use muscles, they become immobile and totally dependent
on others. Eventually they struggle to talk, swallow and even
breathe. Yet their minds remain as active and perceptive
as ever.
An eagerness to share stories
By last October, giving an interview was hard work for Jonathan.
But using a gaze-controlled talking machine with assistance
from his wife, he was clearly game to tell his story.
When they met, Jonathan was 18 and Emily 16. The Kramer
portrait was Emily’s first Christmas gift to Jonathan. (“It always
makes him laugh,” she said.)
The Buehler children
— big sister Briana
and twins Kaylin and
Kiera — were welcome
visitors at BaileyBoushay. This family
portrait was taken
a week before
Christmas 2014.
That resiliency buoyed him in 2013 when he learned he had
amyotrophic lateral sclerosis (ALS), commonly known as
Lou Gehrig’s disease. The same attitude helped him accept —
and make the most of — coming to Bailey-Boushay for end-oflife care.
Jonathan died on Jan. 6, 2015, after eight months as a member
of the Bailey-Boushay community.
The BBH commitment to ALS care
About a quarter of the residents in Bailey-Boushay’s 35-bed
nursing home have ALS, Huntington’s disease, muscular
dystrophy or multiple sclerosis.
Baseball was Jonathan’s all-time favorite sport. A lifelong
Chicago White Sox fan, Jonathan couldn’t resist using the
nickname for his hometown’s other team: “I love the Flubs, too.”
His smile got even bigger when talking about raising eight-yearold Briana and three-year-old twins Kaylin and Kiera.
The story of a young, strong family
Jonathan was a stay-at-home dad with Briana. She started
kindergarten early, at age 4, “because I worked with her,” he
said with pride. When their twins were born prematurely, both
parents lived at the hospital with them for a month. The girls
thrived.
The family soon moved to Washington state for better schools
and a better job market. The plan worked: Jonathan was offered
his dream job in retail sales management.
that cause pain and distress,” says massage therapist Bill Ames.
“Massage can offer relief. It’s pleasant and it helps people feel
better and relax.”
Then ALS turned their world upside down.
Jonathan teased therapeutic harpist Lyn Miletich by asking her
to play Korn’s heavy metal.
Finding a safe haven
“After 18 years as a couple, we’ve been through everything
together,” Emily said. “He would rather be living with us. But
Bailey-Boushay gives him the quality of life that I couldn’t give
him at home.”
Relieved of the caregiver role, Emily felt safer and could spend
quality time with Jonathan. “Bailey-Boushay takes charge and
coordinates all his care so I don’t have to. They are very supportive and keep me in the loop,” she said.
“And I love having a Seattle address,” Jonathan chimed in,
making Emily chuckle. “It’s true,” she said, “he always said he
wanted to live in a big city.”
Comfort in body, mind, and spirit
Jonathan particularly enjoyed the addition of massage therapy
and therapeutic harp music in 2014, which makes daily life
better for residents with ALS.
“ALS is a nerve disorder with specific range-of-motion issues
About a quarter of the residents in Bailey-Boushay’s
35-bed nursing home have ALS, Huntington’s
disease, muscular dystrophy or multiple sclerosis.
What she actually plays is ethereal (harp music is wordless by
default), ancient music to calm anxiety and discomfort, ease
pain, and help people rest and relax. Once, she and the massage
therapist worked together for Jonathan. “He was in heaven!”
remembers Lyn.
On his last day, Jonathan asked Lyn to play for him. She visited
three times during her shift.
“It is such an honor and privilege,” Lyn says, “to play for someone close to the time of transition.” Later that night Jonathan
died with Emily at his side.
Bringing Communities Together:
Outpatient Program Support from the Washington Women’s Foundation
L
ast month, Bailey-Boushay House (BBH) was delighted
to host several members of the Washington Women’s
Foundation as they toured the house and new kitchen.
Washington Women’s
Foundation members
(left to right) Sue
Eastgard; Jennifer Sik;
Barbara Fielden; and
Brian Knowles, executive
director, in the newly
remodeled kitchen.
The Washington Women’s Foundation is a tremendous supporter of Bailey-Boushay House, providing significant funding
through a Pooled Fund Grant for the Outpatient Programs of
Medication Management and Nutrition Services.
Established in 1995 by Colleen Willoughby and four other
women, the Washington Women’s Foundation’s vision is to
change the course of women’s philanthropy through the power
of collective giving. The member-based organization has grown
to more than 500 members. Their pooled and individual
donations provide more than $1 million for Washington state
non-profits each year.
The Pooled Fund Grant supporting the Medication Management
and Nutrition Services programs helped cover uncompensated
prescription costs, development of individual medication
plans, medication counseling services and nutritious hot meals
for clients. BBH is the only resource of its kind in Washington
state and without funding for these critical community services,
already marginalized HIV/AIDS patients would have nowhere
to go to get the specialized care they need. The generosity of
the Washington Women’s Foundation members has helped to
keep this line of service open to our community and BBH is
thankful for that partnership.
homefront
Editor ................................................................................Kara Talbott
Contributors .......................................................................Ellie David
Graphic Design ............................................................. Dean Driskell
Photography........................................................Paul Joseph Brown
Homefront is published by the Virginia Mason Foundation.
For placement of stories or information of community interest,
please contact: Bailey-Boushay House, 2720 East Madison St.,
Seattle, WA 98112, (206) 322-5300, Bailey-Boushay.org.
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in admissions, services or employment on the basis of age, disability, national
origin, sex, sexual orientation or any other basis prohibited by local, state, or
federal law. These laws include, but are not necessarily limited to, Section
504 of the Rehabilitation Act of 1973, the Civil Rights Act, the Americans
With Disabilities Act, the Washington State Laws Against Discrimination,
and the City of Seattle’s Anti-Discrimination Ordinances.
Printed on recycled paper. Copyright 2015.
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Thank you
Mark your
calendar
to the following organizations for their recent gifts of $1,000 or more:
Thursday, March 5
Comedy Night at Julia’s on Broadway
Tuesday, May 5
Bailey-Boushay House is
excited to be part of one of
the biggest days of philanthropy — The Seattle
Foundation’s GiveBIG Day.
Learn more at seattlefoundation.org/GiveBIG
Sunday, June 28
Pride Parade
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Alaska Air Group, Inc.
American Endowment Foundation
Andrew Will Winery
Bailey-Boushay House Volunteers
Boeing Employee Individual Giving Program
Cairncross & Hempelmann PS
Costco Wholesale
Fidelity Charitable Gift Fund
First Choice Health Network, Inc.
Glass Distillery
Group Health
Keith & Mary Kay McCaw Family Foundation
Kelley-Ross Pharmacy
KING 5 Television
KPMG LLP
MAC AIDS Fund
MediCleanse Linen Service
Microsoft Matching Gifts Program
Morgan Stanley Wealth Management
Office Depot
OpenSquare
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Premera Blue Cross
Pride Foundation
Prime Electric, Inc.
SAFECO Corporation
Sasco
Seattle Police Employees Charity Fund
Sound Community Bank
Tesla Motors Seattle
TGB Architects
The Kasin Family Foundation
The Seattle Foundation
Towers Watson
Truist
United Airlines
United Way of King County
VECA Electric & Technologies
Washington Dental Service
Wells Fargo Foundation
Westlake Associates, Inc.
Willamette Dental Group