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Long-Term Care

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Supported by Caring Communities
By Sue Stewart

(Page 2 of 3)

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.


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