In the past several years,
hospice of CNY has expanded its mission to include palliative care,
and has broadened its partnership with hospitals, nursing homes, and
other community organizations whose focus also includes end of life
care.
During this same time, an
80-year-young Warren Stewart, my father-in-law, was beginning a
different kind of partnership with a community of caring people.
Through a system of care already in place, he was offered options
for end of life care that would ultimately support him and his
family through his death.
A 59 year marriage, a son, 4
grandchildren, 2 great grandchildren, 41 years as employee and
supervisor at Nestle – clubs, music, sports and travel. All his
life, he had been a resident of Fulton. His safe and comfortable
community would eventually become small and more narrow as he
focused his diminished energy on his own aging and chronic illness.
In 1996 I watched him watch his
wife die of a chronic illness in a hospital, fully resuscitated on
machines. He never recovered from her death, nor did he change his
belief that he should have “done more” to keep her alive.
His friendships would be lost
through years of many deaths (as we later found his memories of
those friends, journaled, with pasted obituaries, punctuated with
“good friend”, “like a brother”, “God bring you comfort”). His home
would be sold, with a move to an assisted living facility. His
travels now were to five different doctors, the Wound Care Center,
out-patient surgery, eye doctors. His visitors would be family, and
home care nurses twice a day (they brought him pie). His constant
companions were grief, a darkened room and his television.
A year ago, his relationship to
the caring community was altered, and ultimately improved, as he
agreed to a move to a newly renovated home for eight seniors in
Liverpool. At “The House at 807” he made new friends, he bought new
clothes and furniture, he tried new food and ate three huge meals a
day. He took drives with family, he entertained at holidays, and
last November he decided against the aggressive treatment
recommended by his physician for yet another newly-diagnosed
disease.
Warren had done his advance
planning. A health care proxy had been in place for years, and he
agreed to at-home Do Not Resuscitate order. He became weakened and
in May, after two hospitalizations and visits from another home care
agency, still determined not to pursue curative treatment, defeated
in body but not in spirit, he consented to receive hospice care at
home.
Without much conversation, he
allowed new “strangers” from “the community” into his home and his
life. One by one the entire hospice team entered his room at 807:
nurses and social workers, a sports-loving chaplain, a volunteer,
on-call nurses, a nurse for daily dressing changes. Companies
delivering oxygen, a wheelchair, a life line, medications.
Private-hire help got him through a “spell.” Through it all, he
never talked about hospice or dying or death. He was tied up with
living.
At the end of a tough summer, as
I watched Bill Moyers’ four-part PBS series on dying, read the Time
magazine article on end of life care and listened to my co-workers
from hospice on local TV promoting community end of life care, I was
disappointed and felt betrayed by my own romantic notions about what
the end of life should be. Where, I wondered, was the growth and
meaning at the end of life that hospice workers often speak of? In
all the time by my father-in-law’s bedside, I never heard those five
phrases that hospice physician Ira Byock suggests dying people and
their families need to say to one another: Forgive me. I forgive
you. Thank you. I Love you. Good-bye. Where were those special
dinners with everyone looking clean and well rested, holding hands”?
I clung to a notion of how things should be for him and for me. It
should be different. I never expressed this to him, but sat by,
always waiting for that end of life miracle.
He had to leave the house at 807
and knowingly accept a final move to Francis House (a residence for
8 terminally ill persons) in late August with the hospice team in
tow. He graciously again made new friends with their staff and
wonderful caring volunteers. He praised their food and ate seconds;
he allowed a wheelchair trip to the garden. He reminisced with
everyone who eagerly listened, he watched TV, he slept during the
day and night. When we visited the only thing he wanted was for me
to hand him his razor. He shaved a lot! I visited with volunteers at
Francis House who had previously been a part of my life and who were
now a part of his. Warren questioned but allowed a student aide to
take three hours to bathe him. He took phone calls from family, as a
Baptist he openly received the daily visits and prayers of three
Sisters of St. Francis. In a semi-responsive state close to death he
inquired about the hospice chaplain’s golf game. He asked for a
chocolate cannoli.
He swore and raged at his
condition and he fought dying, He could no longer walk or sit in a
chair or get dressed. His dentures fell out, he lost 60 pounds. His
dressing changes were torture. There was blood, there were unusual
smells. He was agitated, in pain and angry. Warren knew what he was
choosing when he decided against active treatment. His spiritual
beliefs and prayers comforted him about a future with God and the
reunion with his beloved wife. But he hadn’t chosen dying and he
hated it.
I accepted the role of caregiver
as my responsibility to him and it was my privilege to assist the
caregivers at Francis House and the hospice team. It wasn’t pretty,
or easy. Vacations were cancelled, activities suspended. It was hard
and tiring with moments of weepiness and indignity.
Warren never said good-bye, but
finally the miracle I awaited was there. What I found was simple. It
wasn’t about me. It was about Warren. He was living his life as he
defined it. I was simply, yet profoundly, a part of his “journey”.
My job was to be me. To be me with him. And I am more alive because
of it. He had made his own decisions, graciously connected with the
people providing his care, and died in a way consistent with his
living. To the end, he was a part of our community, and the
community was always there and ready for him.
As a Social Worker and hospice
administrator, Sue Stewart has worked to forge new links in the
support system available to people in failing health in this
community. Recently, in caring for her own father-in-law, she
witnessed the workings of that system first-hand.
Subscribe to our weekly e-newsletter
