The Story of My Father (4 page)

Chapter Three

IN 1907, a German doctor in Frankfurt named Alois Alzheimer wrote an article on a mental patient of his, a woman who had died at fifty-six after a strange five-year illness.

Her first symptom had been paranoia, a suspiciousness of her own husband. Then, rapidly, that became entwined with profound memory impairment:

She could no longer orient herself in her own dwelling, dragged objects here and there and hid them, and at times, believing that people were out to murder her, started to scream loudly.

She was institutionalized. It was difficult, Alzheimer said, to examine her, she was so confused, so frightened: “She bursts into loud screams each time she is approached.” For a while she was still able to speak—at least to name objects, albeit with difficulty. Gradually, though, she declined: “General imbecility keeps progressing.” By the time of her death, he described her as “totally dulled, lying in bed with legs drawn up, incontinent.”

He performed an autopsy at the request of the director of the asylum, in part because no one could understand what had happened, what had gone wrong with this patient. What he discovered only increased the mystery. Her brain was riddled with neurofibrils, thickened and changed in a way that made them chemically unrecognizable. In places they were clustered together in what he called
thick bundles.
In addition, scattered over the entire cortex was a “peculiar substance” that he was, again, unable to recognize chemically. He felt he was looking at a new disease, a mental illness with no name.

Now we call it by
his
name, Alzheimer’s disease, and it is the dread disease of our time, particularly for those of us who are turning fifty, or sixty-five, or seventy and have escaped the
other
diseases one used to die of. It affects five million Americans and is the fourth leading cause of death among us. This is what was wrong with Dad, the answer I hadn’t known to the questions the people who cared about him kept asking me.

It was called
probable
Alzheimer’s disease in his case because at that time the only sure diagnosis was by autopsy, after death. Now we know of several genes that predispose to it, some with near certainty, so DNA testing would be a possible diagnostic tool.
Would be,
but isn’t often—first because it’s expensive; and second, because there’s a sense in which for the patient, already afflicted, it’s useless. Even now, fifteen years after Dad was diagnosed, there’s nothing to offer someone with this disease except a few palliatives.

When I heard what was wrong with Dad, I experienced a strange rush of relief, a feeling that I think was related to the sense I’d had, for some years, of being responsible for him. I’d been single when my mother died, of all four siblings I lived nearest, and he and I had wound up spending a lot of time together over the six years between her death and his diagnosis. In the summers, I had gone up to see him in New Hampshire nearly every weekend, usually stretching my visits out to three or four days. I tried to have at least one extended summer stay of several weeks or even a month with him also. He came to our house in Cambridge for at least half his holidays, and I frequently drove to New Jersey just to visit. We spoke often on the phone and wrote more often—I still have many of his letters to me. I had noticed his failing early on, but no one else in the family shared my perception. “He’s fine with
me,
” my brother would say, and I would feel accused of imagining things or of responding to Dad in a way that was somehow
responsible
for making him seem vague.

Actually, what was unique in our relationship, Dad’s and mine, was that when we were together we were usually
alone
together. Unlike my siblings, who all had spouses and multiple younger children, I had only one child, and at that stage Ben spent some of his free time with his own father and most of his summers at camp. When Dad and I saw each other, we were able to talk intimately, leisurely—about our lives, our family’s story, our work. In the years after he retired, we labored together side by side for weeks and months, each summer and fall, redoing the ruin of a house he’d bought in New Hampshire. I honestly think I saw the workings of his mind more clearly than my siblings did at that stage. Certainly I saw his oddness, when he was odd, more sharply. But even I didn’t really
want
to confront it. It came and went anyway, and so again and again I was able to argue myself out of acknowledging it.

But there came a point when I knew I had to try to do something about what I felt. I’d seen it once too often, too clearly. His friends, his last living sister, had begun to ask their questions. I felt the burden—as the one who thought something was wrong myself; as the one who seemed to be held responsible by others; and, after all, as the oldest daughter in the family, the one who saw him most—to do something.

I moved in slow motion, it must be said, given who Dad was and, probably no less, who I was.

First I tried to talk to him about it—about depression, for instance, which seemed a possible explanation. About medication. He was characteristically vague in response (he could be more effectively nonresponsive than anyone I’ve ever known), and I felt he might be telling me, in essence, that it was none of my damned business.

Maybe that was true, I don’t know. Certainly I was always able to shift quickly to thinking so, to feeling as guilty for trying to do something as for doing nothing—because while I didn’t want to be irresponsible, I didn’t want to be intrusive either. I remember writing once to his sister, my aunt Grace, that it seemed wrong to insist to Dad that he needed to have a particular
kind
of old age: as long as he was
all right,
why shouldn’t he be sad sometimes, or scatty, or even not as tidy and fastidious as he once was? When I reported to my older brother that Dad wore the same clothes over and over in New Hampshire, Bob said, “Hell,
I
wear the same clothes over and over in New Hampshire!” and I thought, Yes, yes, that was right; we’re
all
slobs up there; I was being foolish again.

But the question now was,
was
he all right? When his friends asked me that, I felt a sense of guilt that I didn’t know for certain one way or the other and that I wasn’t being aggressive enough about finding out.

Okay: shamefacedly, then, I took the next step. I poked into his medicine chest when I was visiting and made a list of the contents so I could talk to my own doctor about what they might be, what they might mean. But there was mystification here too. For instance: Dad had a medicine my doctor told me was an antidepressant. That made me hopeful that he’d gone to his doctor himself, that he’d been diagnosed, that he was being treated. For a while—perhaps six months—I relaxed. But when I checked his medicine chest again, the bottle was still at the same level, nearly full. Now, what did
that
mean? Had he been taken off the medication? Did he have something else for depression that he kept elsewhere? Had he simply forgotten to take it or decided on his own he didn’t want to, didn’t need to? That would have been exactly like him. And once again, it was impossible to find out anyway, given the kind of nonresponse he made to my direct questions.

At a later point, feeling like a snoop, a spy—a criminal, really—I actually called his doctor without his knowledge to make a plea for information. His doctor: the name on the medicine bottles.

But no, he wasn’t Dr. Nichols’s doctor anymore; he hadn’t seen him for several years. Though he had noticed some memory loss before then.

Did he know, then, who my father was seeing now?

No idea, he said.

I went back to Dad again and tried to pierce the thicket of proud (or was it only confused?) obfuscation. Finally I got another name. I called him. This man
had
seen Dad, within the year. He had prescribed some medications, yes, but he thought Dad was in good shape. He didn’t know him well enough to comment on memory loss.

I felt utterly stymied at this point. It seemed, in the end, that unless Dad was willing—or able—to talk to me honestly and openly about his health, there was almost nothing I could do.

What I
did
do, finally, was to pressure him to change his circumstances. To urge him, with my sister’s support—she was, as I’ve said, the one who listened to me, who seemed to be willing to believe there was something wrong—to move.

And now he had moved, and my sister, living ten minutes away from him, guiding him into his new life, had found him a new doctor, had insisted on starting out with thorough exams, and had given us all a diagnosis. It was real. It could be named. It was Alzheimer’s disease. And I felt my guilty relief to know it.

In my own defense, I’ll say that this was born in part of ignorance: I didn’t really know much about the disease and the details of its terrible course. And in any case, the relief was mixed, of course, with real sorrow for Dad. But the diagnosis signaled the end to the nameless anxiety that I’d felt had been mine alone for years, and for that, no matter what, I was grateful.

My father’s obituary in 1991 said that he died of Alzheimer’s disease. Of course, no one, strictly speaking, dies of Alzheimer’s disease. They die of other things, horrible things that happen to them because they
have
Alzheimer’s disease. Sherwin B. Nuland in
How We Die
lists some of the possibilities and details their agonies: starvation, because you’ve forgotten how to eat; pneumonia, because you’ve forgotten how to walk, how to sit, and your lungs suffer for that; also urinary-tract infections and septic decubitus ulcers. This last is what Dr. Alzheimer’s original patient died of, eventually—bedsores: “lying in bed with legs drawn up, incontinent . . . despite all care, [she] developed decubiti.”

My father had his own version of death-by-Alzheimer’s, and I watched it slowly overtake him without realizing what was happening, without knowing I was witnessing the approach of the end—something else to feel guilty about, since he was in my care again when he died, living forty minutes from Boston in what is called a “continuing care facility” named Sutton Hill Village. It had turned out, once he was diagnosed, that he could not go on from Denver to the ecclesiastical community he’d chosen in California; they had no arrangements for dealing with Alzheimer’s disease there. He decided that when he got to the stage in which he couldn’t live alone anymore, even with the very elaborate support systems my sister had set in place, he would come back east to live near me. I’d found Sutton Hill and we’d gone to look at it together on one of his visits to me when he was still fairly intact. And when a space opened for him in the fall of 1988, it was my sister’s turn to feel relief; to send him back to me.

I watched him, then, and tried to help him, as he moved from being a fairly functional person to a completely incompetent one. I was, as they say, “in charge” of him as he moved through some of the more humiliating and degrading stages of the disease. Part of what I want to record here is how that felt, how I reacted, certainly not using myself as a model of any sort but simply as an example.

Throughout my father’s disease, I struggled with myself to come up with the helpful response, the loving response, the ethical response. I wanted to give him as much of myself as I could. But I also wanted, of course, to have my own life. I wanted, for instance, to be able to work productively. I wanted not to let my sorrow and despair over Dad color my daily relations with my husband or my contact with my son, who was by then in college. There were many books, and I read a few, to tell me how to approach all this, and I had joined a support group of caregivers well before Dad arrived to be near me. There I heard many of the same things I’d also read: that I shouldn’t feel guilty about sometimes not liking Dad, that I should make a special effort to get out often and see friends, that I should take care of my personal needs, that I should turn to others for help, that I should revisit old hobbies and pastimes to give me a lift.

None of this seemed to connect with the feelings I had. I thought of most of it, honestly, as irrelevant at best, condescending at worst. The truth was that not even directly as advice was it apt for me. I was, in almost every sense,
lucky
as a caregiver. The strains I felt were not that Dad required too much of my time, or even—as was the case for some people in my caregivers group—that he might drain my financial resources. Dad had good care at Sutton Hill. He really
needed
very little of my time, in that sense. And he had enough money of his own to get through a very long haul with the illness—a combination of Social Security, retirement benefits from decades at two large universities, a ministerial pension, and the invested proceeds from the sale of his house.

What’s more, he wasn’t “difficult.” In everything, he wished to be as little trouble as possible. For as long as he could, he acceded to every rule made for him, complied with every restriction—and never complained.

Still, it was hard. Not just hard, it was awful. Yet my first task as I understood it was not to let Dad see I felt this way. I wanted, while I could, to make our time together lighthearted, fun, interesting, as he had always sought to make our times together when he was in charge of me. I wanted to give him respite from his awareness—diminishing awareness, to be sure—that he was ill and would only get worse. That he was, in effect, incarcerated and would never get out. That he was dying, and dying in what was to me—and to him too, I imagine—the worst way possible.