by Sue Miller
Sometimes the hallucinations seemed painful. One of his recurring ideas, for instance, came because he missed his library, all those books he’d left behind in Denver. Within a few months of his arrival at Sutton Hill, he became convinced someone had stolen them from him, that they were locked somewhere in the basement of the building. He often asked me to come with him to find them.
Tentatively I’d say I didn’t think they were here and offer my understanding that he and my sister had sorted through and gotten rid of most of them. But this cut no ice with him, so we’d walk around the halls of Sutton Hill looking for the passageway he was certain he’d seen, the one that would take us to the chamber where the books were kept—until we would arrive, to my father’s deep confusion, at the activities room or the lounge or someone’s office or the country store. A dead end, the remembered doorway now a plastered-up wall, as in some Hitchcock film. (He wandered when I wasn’t there too, which bothered the staff, but I decided not to tell them that he was just looking for his books. I knew they’d insist to him that there was no basement and there were no books, and then he’d conclude they were “in on it”—the theft, the plot.) Sometimes he’d worry about family members, or about other residents, about bad things having happened to them.
Most often though, the hallucinations I had to accept as part of his reality were pleasant ones. I’ve mentioned earlier that my mother came to see him, as did his parents. He reported lively visits from friends. And gradually there came to be a focus to his dementia. The patterns and rhythms that had governed my scholarly father’s life asserted themselves here too—from within this time—to shape his understanding of his new circumstances: Sutton Hill became some kind of university, a university in which my father’s role was multifarious and changeable. Increasingly, when I’d ask him what he’d been doing, what was new, he’d answer that he’d been preparing a lecture. Or that he’d been to a lecture (and he did, in fact, go to some in this well-organized community—on transcendentalism, on art history— which probably reinforced the nature of his fantasies). Often he had the sense we get in dreams of being terribly late for something, or terribly unprepared, but more and more of the time now there was one specific context for this—a scholarly context. One time he told me he was supposed to lecture on Hamlet. He shook his head. Of course, he knew Hamlet, but really, to give a lecture . . . He didn’t know if he could do it. It was going to be a real chore to prepare.
He always had a lot of reading to do now to get ready for one thing or another—though in reality, of course, he couldn’t read at all any longer—and when I visited he always reported how busy he’d been. Sometimes it seemed he was the professor; sometimes more a student, doing papers, going to class. He wondered, once, when he would get a new room assignment, and I thought he must see Sutton Hill as a college, or perhaps even a kind of prep school.
One of the therapists, a woman who looked a lot like my mother, actually, and whom my father liked, spoke to me of her concern for him. He didn’t come to their exercise classes or their musical afternoons or their crafts events. When she passed his room, she always saw him alone, just sitting blankly in his chair or dozing.
I defended his behavior. I said he’d never liked crafts, that he’d never cared for swing music or Glenn Miller—that he didn’t even know who Glenn Miller was. (I didn’t tell her he’d charmed my mother early on by his unworldliness in pronouncing boogie-woogie with soft g’s—a detail I once used fictionally.) I said he’d always been relatively solitary. I told her I didn’t think she needed to worry about him, because his delusional life was unusually full and satisfying.
I told her I thought he was happy. I still think, at that time, that he was. But perhaps I shouldn’t have taken such comfort in what seemed the chance kindness of my dad’s illness at this stage. Perhaps I should have wished for him that he embrace enthusiastically the activities offered him, the reality of his situation. That he go to exercise classes, that he learn to weave or dance. Maybe if he had done those things he would have lasted longer, made more friendships of a sort, and stayed more firmly in touch with all of us too.
But I didn’t. I welcomed the sense of usefulness and purpose his delusions gave him. I was glad when he reported he’d done things—familiar Dad-like things—that I knew he hadn’t done. I lied. I went along with his mistakes. I still don’t know if this was right or wrong, but I would do it again. I would choose to have my father feel happy and competent in some parallel universe, rather than have him build something from popsicle sticks or learn line dancing or reminisce publicly—he who almost never spoke of himself or of his past.
I let him go into his delusion and didn’t push him at all into his life at Sutton Hill. I was pleased for him that he’d come home to his own self-invented university.
One afternoon, toward the end of one of my visits, my father said, “You know, one thing I haven’t figured out about this place.”
“What’s that?” I asked.
He looked puzzled. “Well, no one ever seems to graduate from here.”
I burst into laughter, so he laughed too, purely at my amusement. He had a wonderful laugh. Not the sound of it so much but its innocence, the way it seemed almost to take him by surprise, nearly to embarrass him.
That night, when I told my husband what Dad had said, he laughed too.
Encouraged, I elaborated on it. I made macabre jokes for my husband in a sardonic W. C. Fields voice: “Well, Dad, it depends on exactly what you mean by . . . graduation.” “Well, in a certain sense they all do, Dad, they all do.”
I laughed, and my husband laughed, and I know if my father had been there—my father as he was before he was ill— he would have too. He would have given himself over, with that surprised, almost startled delight, to the joke he’d made of his illness and laughed right along with us.
If Dad’s delusional life had continued in this benign way, it would have been easy for me to continue to accede to it. But as the Alzheimer’s disease was progressive, so was the nature of the delusions. Gradually there arose other, stickier dilemmas, ones I had no ready response to, instinctive or otherwise.
He was agitated when I arrived one morning. I asked him what was wrong. There’d been a fire, he told me. A bad one. The residents had all fled the building in their pajamas. (Later I would find out there was, indeed, a fire drill in the night, required occasionally by law, and, yes, the residents had gone outside and milled around on the lawn in their pajamas until the all-clear was given.)
“How awful,” I said.
“Worse than that,” he said, “there were little children killed.” He was nearly trembling, he was so upset.
I looked away. What was I to say now? Could I pretend a grief I didn’t have? Could I act as upset as he was? “Are you sure, Dad?” I finally asked.
“Of course I’m sure. I was there.”
I began to back away from this one. “You know, I don’t smell smoke. If there’d been a fire, surely there’d be some sign of it, surely we could—”
He shook his head, cutting me off. “Little children,” he said. “Dead.” He watched me steadily, waiting for me to recoil, for my eyes to fill with tears, for me to share his pain.
I couldn’t. I wouldn’t. I felt it would be wrong.
Yet I’d acted as though I believed countless others of his delusions, his hallucinations, hadn’t I? What line was I drawing here?
He waited.
I felt accused. “You know, Dad,” I said, “maybe it was a kind of nightmare you had. Sometimes they can seem so real—”
“It was no nightmare.” His lips pressed together. “There were children who died. And everyone around here acts as if they were just . . . puppies or something.”
I tried deflecting the central point. “Well, I’m sure the staff is upset too, Dad. But they have to go on running this place. Maybe they can’t allow themselves to feel it as much as you do. Maybe they’re saving their mourning for later.”
“They are not,” he said sh
arply. And he looked at me with a gaze as cold and critical as he’d ever directed at me. Clearly he believed I was as inhumane, as inhuman, as they. And worse, that I was an apologist for them, for their attitude.
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 bull
etin 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.