Sunday, July 27, 2008

Sacred space in red flannel

In the past several months I've gotten to visit some patients who are receiving hospice care at home with relatives as their principal caregivers. I have seen some caregiving that is so exquisite, so tender, that even remembering brings me to tears. There was one man who was wearing his favorite blue striped pajamas along with a pair of shoes that were meant for serious walking. He was hours from death and not really responding to voices. His family told me he'd wanted those shoes on earlier in the day. "We don't know why," they said. "But he wanted them, so we put them on him, and he seemed to like that." His room was quiet, softly lit, comfortable in temperature, and the most restful place you can imagine. Friends as well as family would come and sit silently with him for a while, and his old dog wandered in and out. The love in the room was palpable, and so was the peace. The family had wanted a prayer and a blessing for him before he died, and that's why I got to meet them. I think his blessing had come, time and again, in the love with which he was cared for.

Another patient was tucked up in flowered nighties, amid a riot of flowered sheets and pillowcases. Her bed was placed so that she could look out into the garden if she liked. The room was full of family pictures and treasures. The caregiver and the patient were delighted to have days to simply be together. "I know the sheets don't match," said the caregiver. "But she likes flowers, and I found everything I could that had flowers on it." The effect was simply joyful.

Recently I visited a home where the patient, who had had dementia for some years, was dying. (She died the next day.) Her family had cared for her at home all those years and now were preparing for her death. Her caregiver had dressed her in soft, old, comfortable flannel, and all the sheets and pillowcases that touched her were also flannel. The caregiver told me she wanted only soft things to touch the patient, so that nothing would rub or chafe at her skin or cause her distress. Red flannel, blue flannel, flowered flannel, all washed and soft and arranged very lovingly around her. The room, again, was softly lit and quiet. Family members took turns sitting beside their loved one, whispering to her, stroking her hair, holding her hand. She looked as comfortable as a person can look and as peaceful as a person can look, and even though she'd had dementia for a long time, it was clear that her family members adored her and were focused, in their care, on who she was, what she liked, what she needed.

Each of these families was concerned that they do caring "right." In each case, the patient looked so comfortable and so peaceful that a piece of me wished I could crawl in beside them and rest with them. Not every family can do this, but the families of these patients had found a way to make caring an act of love, acknowledgment, and even joy. The dying time, in each home, was a special time to "fuss over" the patients for the last days, to accommodate their whims or to respond to their special likes or simply to cherish and comfort a beloved body by surrounding it in softness. Homely things--a pair of shoes, a flowered pillowcase, a soft red flannel sheet--seemed imbued with sacredness because of the tenderness with which they were offered. There was absolutely nothing on earth that anyone could suggest to any of these families to improve their care. The patients were blessed in their surroundings, and I was renewed, and deeply humbled, at the sight of "family" at its very best.


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