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Supported by a Caring Community
By Sue Stewart
(Page 2 of 2)

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 hospiceeon 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.

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