No Saints around Here: A Caregiver’s Days

How Is James?

72 HOW IS JAMES? April 13 How is James?” I struggle with an answer to this simple question. If James had a cold or flu or even pneumonia, I would know what to say. “Much better, thank you,” or “His cold has turned quite nasty, but our doctor just put him on antibiotics, and he should be fine in a week or two.” If he were recovering from a broken bone, I might still be able to produce a truthfully optimistic response. But James has a chronic, progressive disease, and his Parkinson ’s never gets better. It only gets worse. Some Parkinson’s patients do find symptomatic relief from new medications, brain stimulation, or other treatments. The disease, however, continues on its relentless downward path, and it never stops. An interviewer once asked former Supreme Court Justice Sandra Day O’Connor about her husband, who was then institutionalized with Alzheimer’s. Her answer was succinct: “There is no good news with Alzheimer’s.” So it is with Parkinson’s. As I fumble for words, I remind myself that people ask me this question out of polite, kind, and sometimes loving motives. One motive is, understandably, the furtive curiosity with which we watch someone else face a decline toward death. Although we—the temporarily healthy ones—may pretend we can avoid this “ how is james? 73 path, we still want to know how someone else walks it. What is happening now? What happens next? What is the end game? How will he play it? (How will we?) Others, I sense, ask with a tinge of guilt. They are old friends of James’s who do not call orvisit because theycannot handle what has happened to the man they used to know. For these friends, I repress my own question that would make them truly uncomfortable : Why don’t you drop by sometime and see for yourself? How is James? Parkinson’s is such a complicated disease, affecting every sufferer so differently. Over the years, I have had to ask many friends about someone’s cancer. The answer—not the disease—can sometimes be straightforward: “He gets really sick from the chemo/radiation, and he is depressed” (or, sometimes, “keeping his spirits up”). If I had to describe only James’s physical symptoms, I could be straightforward too: “Still walking, with a cane or walker.” If anyone wanted to know more, I could continue , “Well, he is definitely weaker and tires easily. The tremor isn’t bad. Some trouble swallowing now, though.” Then we could move on; the subject has been covered. When I have to figure dementia into the answer, I begin to stumble. My words turn into a stutter, as I try to be brief, descriptive , and yet not melodramatic. (I’m not going to say, “Some days this breaks my heart.”) I want to avoid the word “dementia ” if possible; it terrifies my listener. So I mention confusion and some memory loss instead. I have been asked too often, “So does he still recognize you?” or “Does he know where he is?” Yes and yes. I could talk for ten or fifteen minutes, circling around the subject. I could explain that he needs some help when we watch a fast-moving DVD, but he still enjoys a carefully chosen movie. He can listen to an engrossing nonfiction audiobook that doesn’t rely on plot. Also, I could go on, James loves having an aide read to him from a half-finished memoir we once wrote together about his architectural career. It was never published, but now it serves how is james? 74 an unexpected purpose, offering a gentle springboard into a shrinking pool of memories. I could add that James occasionally wakes up frightened and disoriented. He has terrible nightmares, quite common with Parkinson ’s. He forgets quickly at times, so that I need to tell him again and again, “No, not today. Your son Frank is coming to see you tomorrow.” This refrain would sound familiar to anyone who knew someone with Alzheimer’s. Should I try to illustrate the veering between connecting and disconnecting? Today, for example. When Frank took James for a walk, Frank mentioned afterward how many dogs they’d stopped and petted. For most of his life, James had a dog. (Now, for several reasons, we have cats.) After Frank left, I settled James on the sofa for a short rest. He...