The Story of My Father

by Sue Miller

  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.

  They found him at nine-thirty or so. He’d wandered into Roxbury and sat down to rest on someone’s stoop. I don’t even know if it was a man or woman who spoke to him, but he or she knew instantly that something was wrong; my father was confused and disoriented. The person called the police and then came to sit with Dad until they arrived.

  The police asked for his ID and found in his wallet the card I’d written out for him. My name is James Nichols. I have Alzheimer’s disease. In an emergency call—and here I’d written Sutton Hill’s number and, below it, my own. Since I’d listed it first, it was Sutton Hill they had called. In turn, Sutton Hill called me and told me where he was. We agreed he’d stay the night with me and I’d drive him out the next day.

  When I telephoned the police to find out how to get to the Roxbury station house, they said they’d bring Dad to me, and so ten or fifteen minutes later a police car drove up and I ran outside. My father emerged from the backseat. He looked tired, but he seemed pleasantly surprised to see me, and we embraced. I thanked the policemen and asked about the person who’d helped Dad. They had no name, no phone number—just an anonymous good Samaritan. I took Dad inside. The next time my husband opened the door and called up, I said, “He’s here; the police found him,” trying, for Dad’s sake, to make this sound unremarkable.

  Dad really had no idea that anything was wrong in all this. He accepted that he was spending the night at my house as he’d accepted that he’d been brought to me in a police car—with equal blankness. I asked him about the symphony. It was clear he’d viewed the intermission as the end of the concert. When the music was over, he said expressionlessly, he left.

  “But where were you going, Dad?” I asked him.

  There was a momentary emptiness on his face. And then he said, “Well, I thought I’d go home, I suppose.”

  He was, of course, exhausted and hungry. He said his feet were sore, as if puzzled and amazed that this should be so. After he’d gone to bed, my husband and I sat up for a long time, talking and waiting for the adrenaline that had gotten us through the evening to ebb. And it was perhaps not surprising, but comforting anyway, for us to discover we’d each felt a similar rage when Dad was found, the same kind of rage you feel when a lost child turns up unharmed or a teenager you’ve imagined dead on the highway arrives cheerfully home three hours after curfew. In the last case in particular, of course, you can vent your anger, you can yell and weep and set draconian punishments. But part of the difficulty with Dad was his childlike obliviousness to our desperation and worry. It reminded me of a time when I was working in day care and a little boy in our group wandered off and was gone for twenty minutes or so at Harvard’s Peabody Museum. When we found him, we tried to make him understand how worried we’d been, how much trouble he’d caused, how he could not ever ever do this again. “You were lost, Ian!” we said, trying to make this sound as cataclysmic as possible.

  And he pointed out, cheerfully and logically, that of course he wasn’t lost; we knew just where to find him, didn’t we?

  The next day, after I’d taken my father back out to Sutton Hill, I telephoned a music-loving friend and offered her the remaining tickets in Dad’s Friday afternoon series. From time to time through the fall she’d call me after a concert to thank me again and to tell me about the performers and the different conductors, about the music and her pleasure in it—the very conversations I’d foolishly imagined I might be having with my father.

  His progression downhill was slow but steady, but between my efforts and Marlene’s we kept him presentable to the community on his floor most of the time. Sutton Hill itself arranged for other residents to call for him at mealtimes, to walk him down to the dining room. Still, he used up more time and caused more difficulties for the staff than the “normal” elderly around him. His confusion meant that he sometimes resisted routines. He wasn’t capable of following instructions of any kind.

  His head nurse was a sharp impatient woman who seemed to me to run her wing more for her own pleasure in order than for the patients’ benefit. She didn’t like Dad. He was messy, a monkey wrench thrown into her smooth-running machine. Severa
l times when I was visiting him, she dropped in uninvited to explain to me what he’d done now that upset the arrangement of things. He was always deferential and apologetic to her on these visits. She ignored him and spoke only to me.

  I protested this behavior, finally, to the social service worker. My points: first, that Dad’s problems shouldn’t be discussed in front of him as though he couldn’t hear; second, that my visits with Dad were not the time to discuss him in any case—I’d be willing to come in at any time to talk to the staff separately about him—and third, that the head nurse, as well as the rest of the staff, routinely entered his room without his permission— they knocked once and barged in. I thought he ought to have more privacy.

  Everyone agreed with me, about everything. The social worker even ran a special program for the staff as a result of my speaking up, on the possibility of the need for privacy among the residents—privacy to rest or to weep, even, perhaps, to have sex.

  But after this the head nurse was chillier to him than ever; Marlene said to me, more than once, “They’re so mean to him,” and I wondered then what my stepping forward on his behalf had cost him. I don’t know. He never complained. I’m not sure his isolation bothered him. But it can’t have helped.

  In part, all this resulted from Sutton Hill’s not having a separate Alzheimer’s unit where Dad’s behavior wouldn’t have been so potentially offensive or bothersome to other residents. Here it clearly was. He had no friends. I’d heard other residents speak sharply to him more than once, as though his confusion was a result of his not shaping up somehow, not trying hard enough. And there were episodes bound to offend others. He wandered upstairs once, entered another resident’s room, and lay down on her bed. When she returned and found him there, she was frightened and outraged. She felt he’d done this deliberately, that he’d had some sexual intentions toward her.

  The social service worker who called to tell me about this was easy about it, even amused, and I laughed with her on the phone. But after I’d hung up I worried about what the head nurse’s take on this would be, how she would talk about it to my father and to the other residents, how the gossip about it would further damage my father’s fragile social status.

  One day, when I came in, he was agitated. After I’d sat down, he said, with some pressure in his voice, that he needed to tell Sue something.

  I said I was Sue.

  He looked panicked. “Well, yes, I know,” he said. “But I meant the other Sue. I need to get in touch with her.”

  “Another Sue? Or Sue Miller?”

  “No, Sue Miller. I need to tell her something.”

  We went round the confused circle at least once more before I gave up trying to persuade him I was the very person he was thinking of and suggested he dictate to me whatever he needed to tell Sue, and I would see she got the message.

  He began, with long pauses between nearly every word. “Dear Sue,” he said. “I am writing to the one we know as Sue. To be in touch. . . .” I waited. “So that Sue can hear what I need to tell her. . . .”

  “Which is?” I asked, after a long moment.

  “That I need to be in touch with Sue. . . .”

  And so it went, only the need being announced, never the message, though we sat for fifteen minutes or so and I carefully wrote down each fumbling word.

  It seemed to me, thinking about it afterward, that what had happened was that his memory of me and the person he saw and recognized as me when I visited him had somehow sheared off from each other. And of course it’s true that any person you know well has multiple ways of existing in your mind. The Sues in his brain, I thought, were not all one Sue. Oddly, sadly, I also felt he was getting at something else, a deeper reality, in his confusion. For in my treatment of him, I had become another Sue—a caretaker Sue. A cheerful, dismissive Sue. A Sue who, from his perspective, was grossly insensitive to the shocking and astonishing and sometimes painful things that went on daily in his universe. A Sue who had taken his car away from him, who was inattentive when he said he needed—had to have—new glasses, when he told her his books were missing—gone, probably stolen!

  If he was altered, I thought, so was I—and strangely, in some of the very same ways he was: made bland and callous, reduced by Alzheimer’s disease.

  Chapter Nine

  WE MOVED him again, to Level Four at Sutton Hill: nursing care. In the name of helping him, we gave him a new room configuration to learn, a new hallway shape to negotiate, a new staff. All, of course, guaranteed to thicken and deepen his confusion. Perversely, too, no one had told me until the day I went in to supervise the moving of his possessions to the new space that his old familiar chairs, chairs in which he sat and dreamed for hours at a time, would need to be recovered with a fire-retardant fabric for the move to Level Four, and that his desk couldn’t come with him at all because it had sharp corners.

  Stripped of these personal elements, his new room offered little in the way of charm or comfort. The chairs Sutton Hill provided until I could get his own chairs recovered were from the day room—wood and plastic, small and rather upright. The new hospital-type bed he had now was higher than his old one, with crib sides that flipped up—not a place you could feel comfortable sitting or pass off as a kind of couch, as we had with his bed at Level Three by pushing it up against the wall and covering it with cushions. Of course he had his television—which he could no longer operate; his bookcase—with the books he couldn’t read; and his radio—which I always found tuned to soft rock when I came in, in spite of the note I taped to it asking that the staff keep it on a classical music station.

  Within days, almost literally before my eyes, the move that was to have helped him in the course of his disease accelerated it dramatically. He became radically more demented. Perhaps the worst element in all this from his perspective was the sudden disappearance of Marlene.

  I had known this would come eventually. I understood even at the time I hired her that she was underemployed, doing part-time work with Dad and a few other patients at Sutton Hill. She’d been looking all along for a real job, one with a salary and health benefits. Disastrously, she found it just now. The plan was that she’d leave the week he made the shift. So the one person he counted on daily would not be there. The woman he’d decided he loved would come to see him no longer.

  Of course, from a management perspective it worked out well. All the things Marlene had done for him—except for their walks together and her loving-kindness—would now be part of the daily routine care the institution offered at Level Four; even if she’d stayed at Sutton Hill, she would have been a smaller part of his life. But I’d hoped she’d consent to take a walk with him still, to spend perhaps a half an hour a day with him. I was sorry for him that this wouldn’t be possible.

  I tried to speak to him of the coming changes, as Marlene did. I hired another woman, Nancy, a woman Marlene recommended, to visit with him and to walk with him daily. I hoped, since he hadn’t spoken for a while of being married to Marlene, that his delusion’s intensity, and maybe even its content, had faded.

  Whether or not it had didn’t matter. In the midst of everything else about this change that was difficult, unworkable— wrong—was his bitterness and heartbreak over losing her. When I mentioned her name one day shortly after the move, he looked stricken. “She cut me dead,” he said. His mouth made a bitter line. Even after I’d defended her, even after I’d explained everything to him all over again (she’d found another job, she had to take it, she needed the money, the insurance) he shook his head sadly and said it again: “She cut me dead.”

  I kept thinking there was something I could do that would help him. I went out every day for the first few weeks he was on the new ward—as I couldn’t help but think of it. I walked him again and again around it, talking about where things were, then leading him back to his room, next to which I’d affixed a conspicuous sign with his name on it in large print. I repeatedly showed him his bathroom, the lounge, the dining room—a
different one now from the elegant space I’d sometimes joined him in for a meal. Here, in the Level Four dining room, many of the patients had to be helped to eat and there was minimal conversation, other than the kinds of words usually used to encourage infants and young children at table. I sat through exercise classes, sewing his buttons on, stitching the required labels into his underwear and socks (the laundry was done for the residents at Level Four), while he half participated at the instructor’s enthusiastic commands. I took him for walks outside in the chilly March air.

  In some ways, he responded to me as he always had. He was glad to see me. He welcomed the opportunity to chat. But his attention span had, almost overnight, shrunk dramatically. And there were other signs that things were not going well. Occasionally now when I arrived he was in restraints—in effect, tied down to one of the little chairs in his room. When I asked why, the staff spoke euphemistically. He’d gone a little wild, they’d say. He’d gotten upset. I would untie him, talking to him all the while, and he’d be fine with me.

  Sometimes I’d find him pacing the halls, often clinging oddly to the walls, or even crawling briefly, it seemed to get under something. He suddenly looked more demented too, in part because on Level Four his laundry was done for him and rough-folded, not ironed, as it was when Marlene had done it; he was rumpled and disheveled-looking. Also, the rule was that patients like Dad, who couldn’t dress themselves, had to wear a slipperlike kind of shoe, easy to get on and off. This made him look only partially dressed to me.

  He wore diapers all the time now, and even so I would find jackets or ties smeared with shit in the pile of dry cleaning I took away each week. Ties! jackets! I couldn’t—didn’t want to—imagine how this happened. Nancy reported that he often wanted to ride in a wheelchair on their “walks.” And then that he’d resisted her once physically, so that she could no longer take him outside except into the inner courtyard—mostly now they walked in the hallways.