The Story of My Father (13 page)

I found the judgment painful, but I couldn’t defend myself. I tried again to express a kind of limited grief, hoping it would temper his disgust. “I know it must be awful for you, Dad. It
is
awful. And I can’t tell you how sorry I am that you had to go through it.”

“I’m not talking about myself,” he said. He seemed indignant at the suggestion. “I’m talking about little children.”

“I know, Dad, I know. But I was sympathizing with you. With your feelings.”

“That’s hardly the point.”

We talked a little longer—or I talked and he stared coldly, at me or just away from me. In the end I left without taking him for a walk, without reading to him or getting his mail or any of the things we usually did.

He was chilly to me the next few times I visited, though I’m not sure he remembered why; we didn’t speak of the fire or the children again. But then slowly—mercifully for me—his illness closed over the event or his feelings about it and he forgot my callousness. I didn’t, of course, though it was impossible for me to figure out whether there was something I could have done better or differently, some lesson I could have learned from this.

Other times it was clearer to me instantly what I’d done wrong in responding to a hallucination or a delusion, how I should have responded but hadn’t. This happened when he fell in love with Marlene.

When Dad went to Sutton Hill, he was at what they called Level Three, a ringer among other residents who truly belonged there. At Level Three you were supposed to be responsible for your own daily hygiene, for your own schedule, for your own laundry and dry cleaning, for your own life. Long before he arrived, Dad was incapable of almost all of this; but Marlene made his Level Three life possible.

I had found her through a list of aides at Sutton Hill, and from the start I held myself lucky. She was in her thirties, a big woman, strong. She had a lovely, softly pretty face, with amazingly white, clear skin. She woke Dad and got him dressed each day; she helped him to shave and to brush his teeth. She did his laundry and took his dry cleaning out. She often took a walk with him. She talked to him easily and sympathetically about her children, about his. She was corrective of his hallucinations and delusions—nothing I said could persuade her to go along with them—but she wasn’t insistent or unkind about them. She was protective of him with the nursing staff, too.

Dad often spoke of her affectionately to me, though he never mastered her name with any consistency. Over the year and a half she cared for him, she began to appear in his delusional life. And then slowly she became the focus of it. He would report to me that he’d seen her socially. They went to faculty gatherings together, or lectures, and he was pleased that others in his world liked her, that she was comfortable being among his colleagues with him, in spite of her nonacademic background.

How nice, I would say, when he talked about these events. And then I’d carefully mention her husband or her children. He didn’t seem uncomfortable with those references, nor did he seek to deny their existence. It was, I thought, like his simultaneously seeing Mother in his delusional life and knowing that she was dead. In the Alzheimer’s brain it seems there doesn’t need to be any adjustment or reconciliation between two conflicting perceived realities.

One summer day Dad and I had just sat down in his room to chat. I asked him, as I usually did, what was new.

“Oh, nothing much,” he said. And then, as though just recollecting it: “Say! I got married!” He laughed, his shy laugh of pleasure.

“Well!” I said. “Congratulations.” I laughed too, at the absurdity of all of it.

“Thanks,” he said.

“Who did you marry?” I asked.

He didn’t look offended. “Oh, you know.” He couldn’t get her name. “Arlette.”

“Oh, Marlene,” I said.

“Yes.”

“I like Marlene,” I said.

“Yes, she’s a fine person,” he said.

“So what else is new?” I asked. And we moved right along. He told me the interesting other twists and turns of the days since I’d last seen him.

I thought no more about it, though of course I should have. It had been, after all, a consistent and prolonged delusional episode—the courtship had lasted several months—with, though I hadn’t noticed at the time, a naturally progressive nature. I might have guessed, if I’d thought harder about it, that Dad would take the next logical step after his marriage.

One evening about a week later, I got a call from her. She sounded tense, embarrassed. My father, she said, had suggested that they go to bed together. “You know, have relations,” she said.

I made some noise in response.

“It didn’t really
bother
me, you know. He was very nice about it, really. And I sort of brushed it off. I told him I was there just to be his friend, you know, that it wasn’t part of our deal.” But she thought I ought to know, she said, because she’d felt she had to report it to the nursing staff. “You know, in case it happens with someone else.” She was apologetic. She didn’t like to do that, she said. She wanted me to know her loyalty was to Mr. Nichols.

I told her it was I who should apologize to her. That she’d been the center of an elaborate delusion of my father’s I should have told
her
about. That I wasn’t surprised this had happened because my father had thought he was married to her.

“Oh!” she said.

We talked. I wanted her to know how skillfully I thought she’d handled everything. We ended up laughing about it a little, and after I hung up I was more grateful than ever for Marlene’s presence in Dad’s life.

The social service worker called the next day to report the event to me. I offered my interpretation, but I sensed she felt I was just making excuses for my father. And indeed there
is
a stage some Alzheimer’s patients go through of inappropriate sexual aggressiveness; I had read about it, as I’m sure she had too. I think she felt she was describing this turn in my father’s disease to me. But I don’t think this is what it was. I think that what happened was born of genuine feeling, not illness. I don’t know what the experience of loving Marlene was like for my father—and it’s true it was a feeling he might not have had if he hadn’t been ill— but I believed then and I still believe that he did love her.

As my father’s delusional life thickened and deepened around him, it exacted a price in various ways. One was the loss of his freedom to be alone outside. I’d been pleased when we first looked at Sutton Hill that it was in an almost rural setting, and I think he found it attractive too, when he visited to look at it. There were actually fields, meadows nearly, though they were usually bordered by a stretch of suburban housing. But long walks were possible anyway. And when I first saw the groundfloor room that was to be his, I was also pleased that he had a little patio he could step out onto at any time, an outside sitting space that looked over a garden and then the sloping wooded hills beyond.

For the first months at Sutton Hill he had taken walks by himself, as he’d been used to doing in Denver, and when I came to visit we took them together. By spring, though, by the time he would have made use of the patio, he wasn’t allowed out anymore. Twice he’d stayed away too long on his walks, and the staff had to go out to find him. Another time a nurse had found him outside in the garden in the middle of the night—because, as he reported it, he’d heard a dog howling and thought it needed help. The staff felt they couldn’t risk his freedom anymore. He could take a walk with me, he could take a walk with Marlene, but the door to his patio was locked with a key, so he couldn’t even step outside alone.

Still, we did have pleasant times, pleasant walks—most often to the wildlife refuge at Great Meadows. Compensating for his lack of freedom there were all the activities at Sutton Hill, and I still signed him up for them: we’d go down to the bulletin board and I’d read the choices aloud and he’d indicate what he was interested in. From time to time he was able to take one of these lectures in, really to hear it, and report to me on what it had been about. So at this point, five or six months into his residency, it still seemed worth it to me—the schlep out, the relative inaccessibility, even the strict rules—because of what Sutton Hill offered him.

That next fall, after his return from a stay in New Hampshire with my brother, I signed him up for the symphony, a series of five Friday-afternoon concerts. Sutton Hill had a group that attended together, driven into Boston in the community van. They didn’t all sit together—everyone bought a ticket separately, as I had for Dad—and this might be a problem. But the staff agreed to make special arrangements for Dad: one of the residents consented to guide him to his seat and to meet him at intermission; then to wait for him after the performance and walk with him back to the van.

I talked ahead of time to Marlene about the series and asked her to make sure he was wearing a nice shirt and tie each time—no spots, no dribbles. For this first concert, my plan had been to call Dad an hour or two before the van left, to remind him of where he was going that day and to go over exactly what would happen once he got to Symphony Hall. But as I thought about it that morning, I reconsidered. I was never sure how real telephone conversations seemed to him, and I was worried about this event. It was a lot for him to master, in spite of all the planning and help. I decided I’d go out to talk him through the sequence in person.

He did look nice. He always dressed in a jacket and often wore a tie. But on that day Marlene had made sure he looked particularly well put together. He was wearing a herringbone tweed jacket my sister and her husband had chosen for him in Denver, and he had on dress shoes instead of the clunkier, more comfortable ones he usually wore. He seemed to know what was coming. I talked to him a little about the pieces to be performed. I was pretty sure he couldn’t understand the notion of musical
movements
in a piece of music anymore, so I advised him to wait to applaud until others had begun—pointlessly, I’m sure; I doubt my cautious father ever led the applause. I suggested, too, that he stay in his seat for the intermission—there would be a lot of confusion then, a lot of people milling around. I told him I’d call him in the evening to see how it had gone.

Through the day I was as anxious as a mother might have been about a child before his first official social engagement. But I was pleased for him, too, and hopeful about this first “off campus” event he’d attend without me.

At around six, the phone rang. It was the administrator at Sutton Hill calling to tell me that Dad had disappeared at the symphony. He never came to the lobby at intermission, and when the woman in charge of him looked for him in his seat during the second half of the program, he wasn’t there. She didn’t want to disturb anyone sitting around her, so she waited until after the concert to search for him in the lobby (perhaps he’d felt ill and stayed in the men’s room too long?) and then she notified the personnel at Symphony Hall.

They’d scoured the building completely, every dressing room, every closet, and he wasn’t there. They’d looked in the immediate environs outside. Sutton Hill was notified and the social worker there called the Boston police immediately. The van had brought the other exhausted residents home. Everyone’s best guess was that he was now wandering somewhere in Boston.

After I hung up I called the police too, with a description of my father and what he was wearing. And then I began my vigil, with a series of images playing out into nightmares in my mind before, each time, I willed them to stop.

Perhaps nothing represents more clearly the effect of Alzheimer’s disease on the mind than the activity called
wandering.
There’s a need to get going, an impulse to travel, but it’s disconnected utterly from the notion of destination. It is as though someone had snipped in two the thread that usually connects motivation with activity. Absent also is the sense of pleasurable aimlessness that is part of the
meaning
of wandering for the unafflicted. Purposiveness without purpose, directedness without direction, need without want—these are its hallmarks.

Now I imagined my father striding briskly and anonymously around Boston, a small, tweedy, academic-looking man, completely unremarkable, unnoticeable except for something a little robotic in his gait. How far could he get? How long could he go? Where would he be when he wore down, when he stopped? Who would be nearby, friend or foe?

My husband came home—it was fully dark now—and we talked quickly about who should do what. I thought it made more sense for me to stay by the phone. He volunteered to drive around looking for Dad and, in these pre-cell-phone days, check back with me from time to time.

And so he began his long tours of the various neighborhoods of Boston, tours he would still occasionally recall later with a feeling like that of déjà vu as we drove through some obscure part of town.

There is a sense in which Symphony Hall sits in a central location in Boston, with radically different environments spoking out from it. Back Bay, with its expensive elegant bowfronts and brownstones, shops, and lots of street traffic. Kenmore Square and the Boston University neighborhood, almost as busy, but grungier, petering out into the quiet residential streets of Brookline. The edge of the South End, the varied neighborhood we lived in, sometimes elegant and sedate, sometimes lively with street life, the odd wino or drug dealer. The North-eastern University and New England Conservatory section and, beyond that, Roxbury, Boston’s largest black neighborhood.

In each of these areas there were odd forlorn spots, abandoned and sometimes dangerous: the underpass by the Muddy River, the fens along Park Drive, the empty reaches of the Boston Common, the area under the Southeast Expressway near us. These were where I saw Dad in my mind, of course— confused, threatened, mugged, unconscious. And this is the kind of thing my husband imagined too as he drove up and down the streets in each area, slowly cruising, scanning pedestrian traffic, looking for a small man walking, or resting, or hurt, or dead. Every forty-five minutes or so, I’d hear the front door open and he’d call up, “Anything?” or I’d call down, “Anything?” and then he’d start out again.