In the past five 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, 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.

Warren had enjoyed a 59 year marriage, a son, four grandchildren, two great-grandchildren, 41 years as employee and supervisor at Nestle, as well as clubs, music, sports and travel. He had been a resident of Fulton. All his life, 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 were lost through years of many deaths. (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 was sold, and he moved to an assisted living facility. His travels now were to five different doctors, the Wound Care Center, out-patient surgery, eye doctors. His visitors were 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 with the caring community was altered, and ultimately improved, as he agreed to a move to a newly renovated home for eight seniors in Liverpool, New York. 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 healthcare 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 eight terminally ill persons) in late August with the hospicee 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 hospicee 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.

Sue Stewart is Vice President for Operations. hospice and Palliative Care Associates in Leverpool, New York. 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