No Saints around Here: A Caregiver’s Days

The Long Passage

170 THE LONG PASSAGE March 24 When I wrote this, the end seemed very near. Months, not weeks, lay ahead. Iremember another tunnel. Almost fifty years ago, when I was a summer-school student in London, I discovered the beauty of ballet. Clutching a standing room ticket on the uppermost tier of the Royal Opera House in Covent Garden, I was enthralled by the dancers of Swan Lake floating far below. Although I could not see their faces, I could hear every note of Tchaikovsky’s haunting music. When I left that night, I was in a trance. I descended into the Underground and turned into a dimly lit tunnel that seemed deserted. I was alone, but I was not in the least afraid. Then I heard a faint strain of music, gradually growing stronger as I walked farther. Rounding a corner, I saw a man standing next to the wall and holding a violin. An upturned hat on the pavement held a few scattered shillings. He looked away, somewhere in the distance, as he played, with piercing tenderness, the recurring theme from Swan Lake. As I continued down that darkened tunnel, the music seemed to follow me. It filled the passage like a message, a moment of the long passage 171 remembering, until it gradually died away into a whisper and disappeared entirely when I reached the platform where I would wait for the next train. But I kept hearing it, wafting through my mind, all the way back through the London summer night to my well-lit dormitory room. During the past ten days, I have been thinking about that night. I remember how the melody echoed in the London Underground . I am in a dimly lit passage now, and oh, how I wish I could hear an echo of that music. Last week, after a particularly difficult night, James fell into an almost unshakable sleep. He slept day and night for almost four days. Each day he awoke briefly—or my aide and I woke him—for a little nourishment, a drink of water, using the bedside commode. But then all he wanted was to go back to sleep. He slept with his mouth open, breathing heavily and steadily. Mary, our trusted and empathetic hospice nurse, came to visit. “This is a significant change,” she said. “He even looks different.” After four days, James woke up. Since then, he has slept very little during the day. He naps for short periods. Some days he will watch a little television or pore over a page from a magazine. He may lie quietly and listen to music. He talks a little. Other days he wants to get out of bed and then in again, because he doesn’t know what to do. If he is agitated at night, he gets a small dose of Ativan. Over the past year, he has had brief episodes of dementia when he wonders where home is. One night he cried out in distress , “I want to go home! Why can’t I go home?” I find this cry excruciating. “Weeks,” said Mary on her last visit. “Not months, no, no. Weeks.” But of course she doesn’t really know. Parkinson’s is a cunning beast, and James’s will to live is extraordinary. So we are walking through a dark passage, like that Underground tunnel. It twists and turns, and I have no idea how long it is. Everything about dying is mysterious to me. the long passage 172 During each day, I send James’s aide upstairs and sit by his bed for a while. I reminisce about this or that or describe how I’ve just been swimming or walking or grocery shopping. If he is halfasleep and peaceful, I stroke his forehead and try to speak carefully chosen words of comfort. Sometimes he will bring out a single word in reply, hoarse, coming from a great distance. James does not want to talk about dying, even now, and I respect his decision. So I tell him how much I love him and what our life together has meant to me. I feel no urgency about this, because he has heard it all before, again and again. Thirteen years ago, just before Christmas, James and I landed together in a hospital. It was a freakish and awful coincidence. We had returned a few days before from two chilly if...