No Saints around Here: A Caregiver’s Days

Through the Hospice Door

132 THROUGH THE HOSPICE DOOR December 23 Ialways knew the door was there. Years ago, watching a friend slowly wither and die from ovarian cancer, I saw how peaceful she felt in her own bedroom, supported by hospice, as family , friends, and caregivers quietly came and went, talking to her, holding her hand, tending her. As Parkinson’s gripped James ever more tightly, I hoped I too could care for him at home until the end, and I knew a hospice program might make that possible. Although James and I are not yet at the absolute end—I also know as I write this that lightning could strike before I finish my sentence—I can make no binding promise, either to him or to myself , that I can keep him out of a hospital. But I can hope. That is why I have now entered James in the Fairview hospice program. The night I returned three months ago from my mad dash to London, I realized in a flash that I urgently needed to make changes in James’s living arrangements. The next morning I called Eben, our family doctor and dear friend, who said he would come to see us on Sunday, just a few days away. He and I sat alone in the upstairs bedroom while an aide stayed with James in the living room. Eben warned me—as would the hospice staff—that the course of Parkinson’s was one of the most difficult diseases for anyone to predict. Still, having watched James’s decline very through the hospice door 133 closely, he also felt that hospice would now be a valuable resource for us. He said he would send in a referral the next day and also talk to the hospice’s medical director. Our first week of hospice care was something of a blur, filled with comings and goings, meeting the various members of our hospice team, discussing, note taking, completing forms. But almost immediately I could sense some of my burden shift a little . On our kitchen window, where I stick Post-its, I printed out my new instructions: “do not call 911. always call hospice first.” I underlined the hospice phone number with bold red ink. In my first conversation with Mary, our hospice nurse, I had asked nervously about how hospice would help care for James in case something happened. Such as, I said—my uppermost worry—a fall? A broken hip? Mary looked closely at me. “Well,” she said carefully, “you would have two choices. You can call 911. An ambulance will come and take him to the hospital for major surgery. Then he would enter rehab, although, with his balance problems, he might never walk again.” She paused. “Or,” she said, “you call us. We would come immediately and make sure James was comfortable.” We were both silent for a moment. I thought of James’s increasing dementia, his frailty, his need for reassurance, his eightyfour years. “I understand,” I said. I knew what choice I would make. James would not go to the hospital. (Later, as I was talking to Eben, he said flatly, “James would probably never even make it through the operation.”) Then I asked Mary about, for instance, pneumonia. “Right now,” she said, “we would treat it with oral antibiotics.” I heard the message in “right now.” I understood that too. Soon after we entered the hospice program, I had a startling example of what a help this would be. Because Fairview raises private money for its hospital foundation, its Medicare-based hospice can provide several extras, like occasional visits from a through the hospice door 134 massage therapist or a music therapist and—this is huge—free delivery of medications. Two weeks after signing up, on a late Friday afternoon, I had an unexpected bulletin from Martha, who called me to James’s room. “I think James has a bladder infection,” she said. (He had never before had one in his life.) All day, she said, he had been complaining about burning during urination. “Perhaps,” Martha went on, “since Mary is coming today for her weekly visit, she might have a sterile container. We could get a clean catch. Then you could arrange for a test.” A “clean catch” would not be a simple or easy solution. Once, months ago, in Eben’s office, James had been quite unable to provide such a...