by Sue Miller
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.
I struggled with myself nearly every time I visited him over how to respond, what to say, what to do. It was all the small decisions, and nearly none of the big ones, that confounded and occasionally dumbfounded me. Even now I don’t know what things I would have done differently—or how I’d do them differently if I did. My particular version of the caregiver’s dilemma, then, was one of confusion: moral confusion, emotional confusion, ethical confusion, practical confusion.
Example: a walk in the woods with Dad. I called him ahead of time at Sutton Hill early one morning, approaching this with a frisson of anxiety: I knew he often thought the phone was some sort of fire alarm or doorbell and got agitated trying to respond. Those times when he did remember how to pick up the receiver, it wasn’t unusual for him simply to hold it, having forgotten what came next; and if he successfully got to the next stage and actually lifted it to his ear, he often had it reversed, the earpiece at his mouth. So if I heard a silence on the line now after the pickup, my strategy was to bellow. Dad? Dad, hello, I’m on the phone! Hello, it’s me, Sue! Don’t hang up! Turn the phone around, Dad. Hello, Dad? hello, hello!
Sometimes it worked. This morning I had finally gotten through and told him I was coming out to visit him. He was pleased. He sounded eager.
By the time I arrived, though, about an hour later, he’d already forgotten all that and was clearly completely surprised to see me. Delighted—“Why, Sue!”—but surprised.
I suggested we go to Great Meadows, an Audubon sanctuary on the Concord River twenty minutes or so away—we’d taken walks there often—and he was enthusiastic. I helped him to change into hiking boots and we signed out and left.
We were well past the cluster of commercial civilization near Sutton Hill—the shops, the gas station, the motel—when I realized that I was going to need to pee at some point fairly soon. Stupid not to have used Dad’s lavatory, I thought. But in the past I’d noticed rustic rest rooms off the parking lot at Great Meadows. That would do, I told myself now, and we drove on, talking desultorily, catching each other up on our “news.” Mine was the same news I always delivered: how my book was coming, how my husband’s book was coming, how Ben was, where Ben was—which was, variably during these years, South America, Africa, France, or Harvard. Dad’s news was always fresh and astonishing, straight from his disordered brain. Hallucinatory visits from my long-dead mother or his parents or friends. Odd dreamlike parties or events he claimed he’d attended. I’ll hit the rest rooms as soon as we get there, I was thinking, as I took in the latest installment of his biochemical adventures.
We turned into the long wooded driveway. Through the trees, the river glittered in the sun. It was cool out, breezy: a beautiful day for a walk. We wove our way down to the gravel lot, where only one other car was parked. No one was around. The shed with the rest rooms in it stood in a clearing up a short trail from the parking area.
I pulled into a space and cut the engine. I looked over at Dad, waiting patiently, sweetly, passively as ever in the passenger seat for the next move to be indicated.
I suddenly realized that I had no idea how to handle this. If we got out of the car now and I told him to stay there while I went to the rest room, he might well forget why he was waiting in the two or three minutes it would take me to go. The reason-less impulse to wander—which I thought of roughly as a voice saying to him, “It’s time for you to get going”—might come over him, and those few minutes could be just long enough for him to get so lost in these woods that I wouldn’t be able to find him; he was still a good walker, a brisk walker.
I couldn’t risk it. I couldn’t do it. We sat there.
For a moment I considered taking him to the rest room with me. I could station him outside the stall, assuming there was a stall; or outside the door, which I could leave ajar. Stay right there, I could say, as you would say to a child. I could keep up a running conversation, calling for a steady series of responses, so I’d be warned if he took even a few steps away. But this was too crudely intimate, too undignified. Perhaps not for me, but for him.
No, here’s what it was: for my idea of him. In any case, I didn’t feel I could do it.
Then it occurred to me: I could lock him in the car!
He had enormous trouble with mechanical devices: on-off knobs, electrical outlets, handles, the telephone or radio. He was sitting there now
because he hadn’t ever mastered opening the door to my Saab—the handle was in a different place and worked differently from the handle in his old Volvo. Occasionally he’d start to fumble uselessly around, and then I would reach across and open the door for him. Or sometimes I came around and opened it for him from the outside. Most of the time he just sat there waiting for one or the other, as he was doing now.
What I was thinking was that I could say, “I’ll be back in a minute, Dad,” lock my door as I left, and come up quietly on his side and lock his too. Even if he forgot he was waiting for me, even if he heard the siren call to walk, to walk anywhere, he’d never figure out the combined problem of the handle and the door’s lock in time. And it would be for the sake of our walk, our promised morning out, that I would be doing this. For his sake too, for his safety.
But almost as soon as I had it, I dismissed this idea. I couldn’t, I just couldn’t, lock my father in. There was no activity, no pleasure I could offer him, that was worth my calculatedly relying on his incapacity.
I was furious with myself now for my stupidity. For having put us in a situation where I had to make this decision. I felt a sense of shame for even having thought of this solution, for being the kind of person who could have stopped to figure out that it would work. I felt like kicking something.
I got out. I let Dad out. We took a short hurried walk, one tenth the time we usually spent here.
Maybe he didn’t notice. Certainly he didn’t complain when I led him back to the car, when we drove away. And I don’t think he saw the roadside stand where we usually stopped and loaded up on treats for him to take back—fresh fruit, a bag of peanuts, a small square or two of homemade fudge. I hope not. Back at Sutton Hill, I used the ladies’ room, and before I said goodbye we took another walk, longer and slower, around the too-civilized, too-familiar grounds.
I still don’t know what would have been right. If I’d been a different kind of person, more straightforward, more blunt perhaps, I might have said, “I’m going to the bathroom, Dad, and I’m going to lock the car in case you forget for a minute what you’re doing here.” Sometimes, when I had to, I managed such honesty about his failings. (“Uh-oh, Dad, you forgot to zip your fly.”) More often, though, I didn’t. More often I tried to hold on to my sense of who he had been, to keep connecting to that version of Dad, even as it slowly changed and disappeared.
Why?
I suppose partly so he could hold on to it as long as possible too. Maybe just to make our time together easier, more pleasurable. But part of it may have been denial also, a kind of selfish and uncourageous wish not to have to acknowledge everything that was happening to him: Don’t make me see that, Dad. Don’t make me have to know.
In any case, today my fastidiousness for some or all of these reasons had made impossible what might have been a pleasure for him. And I couldn’t understand, I still can’t, all the elements that lay in the balance. Whether I was serving the dignity I wanted to hold on to in him—that I wanted him to hold on to— or just some misguided notion of myself, the notion that I was the sort of person who wouldn’t think of doing the very thing I’d just thought of doing.
I don’t know. But I remember feeling in the car on the way home, and telling my husband later on, that I was perhaps the worst prepared temperamentally of any of my siblings to be caring for my father as he sank into this terrible illness.
Even as my father had his own version of the Alzheimer’s death, he had his own version of the disease itself, very different from many of the ones I’d read about. He was able until very late in the course of things to present a relatively intact surface to those he was comfortable with and whose references he could follow. He held on to much of his vocabulary, though structuring it was sometimes hard. He retained his long-term memory longer than most sufferers do, so that he could connect with people from his past—and with me and my brothers and sister—until the end of his life. He retained, too, the graciousness that had always marked him. Sometimes, in fact, this became an impediment to understanding him, as he circumnavigated with great effort and invention some routine polite exchange, just because he couldn’t quite remember the normal short form for it. On a bad day, “You’re welcome,” could take several incoherent minutes.
Of course, the basic trajectory of the disease was always there, underlying all this and having its way with Dad’s brain. I could watch him from week to week and month to month take the next step, and then another, along its inevitable downward curve.
But the point is, it left some recognizable things behind, as it does with most sufferers. Things that mark one victim from the next, though it still may take someone who knew him before to recognize him. The mother of a man in my support group, for instance, held on to her characteristic stubbornness as she grew more and more ill. His exchanges with her came to consist mostly of her telling him what she would not ever ever do as he was trying to persuade her she had to do it. The group would make one suggestion or another about how to manage her, and he’d shake his head almost proudly and say, “She’ll never go for it.”
The mother of a friend of mine, always a little spacey and whimsical, grew more and more otherworldly as she descended into the disease, becoming, in effect, a gracious but slightly demented angel.
So too with my father, the disease oddly intensified—or maybe just laid bare—who he really was. Even when he was deeply gone into it, the phrases of self-effacement rose easily to his lips. “Oh, don’t bother.” “That’s too much trouble.” “You shouldn’t have to do that.” His dying itself was quiet and undemanding—no great drama, not much suffering, I believe. A kind of final self-effacement.
Still, by the time he died, he was nearly destroyed. To those around him at Sutton Hill, those who hadn’t known him before, he must have seemed sometimes a horror, sometimes a bad joke. There were times when he seemed like one or the other of these things even to me, who had known him, who loved him.
I think that for others in my family, who didn’t see him at the end, who didn’t witness his slow decline, he may live intact in memory, much as he was before his illness. I hope so. But that isn’t true for me. It was in part to exorcise my final haunting images of my father that I wanted to look at, to explain, the way he fragmented and lost himself in his illness; and who he was before it. And, as I’ve said, to talk about the way I dealt with what had happened and how it felt. But along the way, while I was working on what I hoped would be my useful memoir— reconstructing my father again for myself, imagining him whole, putting together the pieces that slowly disintegrated and broke off—I found there were still things I could learn from him, still things he could teach me, things that helped bring him home in my own memory from the faraway land of his disease.
This book is in some ways, of course, a test of my memory, of my ability to construct and reconstruct events and lives and histories. There’s an element of discomfort here for me. It isn’t just my awareness that the way I see my father may not be the way others see him; that’s inevitable. Neither is it the fear that I may get some things wrong, though I have that fear, and of course, I surely will. Rather it has to do, I think, with the variable nature of memory itself and with its role in my family, for my parents—my father and my mother—and for me.
My father was a historian, a church historian. It makes his illness a bitter irony. But the irony was there in another form even before he became ill, for he was someone who seemed to have almost no interest in his own history, his personal history. He spoke only rarely of his own memories of childhood or youth, and then never at length. And I don’t think he used his personal memories in coming to understand himself. In that sense, in the sense that we mean it in contemporary post-Freudian America, I don’t think he did understand himself. (He knew his Freud, of course. He jokingly said to me once that he was a prime example of what repression could accomplish. He was speaking, I think, both of his inability to recollect much from his early life—even, really, to think about i
t—and of his energetic, virtually nonstop professional output.)
What we knew of his history we knew mostly from his sisters and his stepmother. He seemed disconnected from it. He had no recollection, for example, of his own mother, though he was eight when she died. None. This seems extraordinary to me. Repression indeed. And he couldn’t call up any of those little incidents from childhood that my mother specialized in. I can remember once repeating a story to him that my grandmother—his stepmother—had told me: that two or three years after she’d married his widowed father, my father, a boy of thirteen or fourteen then, idly asked her one day whether she had any insanity in her family. She was startled. She said no, no, she didn’t, and asked him why he’d wanted to know. “Just wondering,” he said casually, and walked away. When I repeated this to him, he laughed in delight—as though it were utterly fresh to him; as though it were about someone else, some other wiseass early adolescent.
“But did you ask that?” I said.
And his answer was something like, Well, I suppose I must have.
“Dad!” I protested. “Did you or didn’t you?” What I wanted to know, I suppose, was whether he remembered the impulse to be that nasty, that snide.
But I never found out. Either he knew and wasn’t saying or he simply didn’t remember. I’d bet money on the second.
My mother was utterly different. She remembered everything about her past. She loved her own history, every detail of it. She suffered from it and reveled in it until the day she died. She could weep at sixty for a slight she suffered at six or sixteen. She could recollect forever the fabric and cut of a dress she wore on a triumphal evening in high school, or the compliment someone paid her in college. Or the insult.
She used her memory to define herself. It was her life and it was her weapon, sometimes her bludgeon. I remember one summer afternoon the year before she died, her haranguing my visiting grandparents, then in their eighties, poor things, about a decision they made to send her away to camp when she was twelve. She spoke of it as if it had happened the day before, as if it were an expulsion from a kind of Eden. She got teary. “It was hell!” she cried out. And I remember that in the midst of all this, as my grandfather tried to slow her down—“No doubt we made mistakes”—my grandmother, a vague smile on her lips, discreetly but deliberately reached up and turned off her hearing aid.
