The Story of My Father (14 page)

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. Several 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.

And then one day he refused to return to the building when I was taking a walk with him. It was a damp, gray, mean New England day in March, and he had kept turning away from me on our stroll around the grounds, walking a little distance from me, seeming distracted, as if he heard or saw something I couldn’t. At one point he went very close to a little dropoff, a fieldstone container wall, and I panicked. I put my arm through his to try to pull him back from it, speaking to him in what I hoped was a reassuring tone. He didn’t respond to me. He was looking out at the horizon line, and his body resisted me utterly. I pulled a little harder, and he froze.

I put my arm around him, turning him physically back toward the building. Slowly I managed to ease him toward it, one painful step at a time, talking, talking steadily the whole way, a nonstop stream—the same reassuring voice I’d used with frightened or angry kids in day care. Cajoling, scolding, entreating. His body was unyielding, and my arms grew strained. My back ached. It seemed to take forever, but I finally got him inside. Things didn’t get any easier there, though. Every step down the corridor, he resisted; he pulled away. He was remarkably strong. When his eyes met mine, there was rage in them and no love, no recognition.

We were almost at the entrance to the ward when he turned violently, yanking himself toward the doorway to some offices. I pulled him back, ferociously. In a fury, he charged me, slamming himself against me. My arm bent back and I stepped away momentarily, shocked by the pain. Then I redoubled my grip. We stood looking at each other, locked in our strange embrace. Both of us were panting. He said, “You don’t know who you’re dealing with,” in a tone of such hatred, such contempt, that I nearly recoiled.

But I was angry too, simply because he’d hurt me, because he’d fought me. And I was stubbornly determined to get him back on my own.

Why? Partially, anyway, so they wouldn’t put him in restraints again or tranquilize him. But I think too that some of it was useless pride: I didn’t want to admit to the staff that he’d crossed this line with me too—that he could
not know me,
that he could be as violent with me as he sometimes was with them.

So we slowly did our hurtful dance, inching our way to the ward doors, and then down the hallway in the direction of his room. But at the doorway to the day room, I turned in with him. I felt I simply couldn’t make it any farther. My shoulder was throbbing where he’d bent my arm backward, and I knew my back was in trouble. We made our way to a cushioned bench and sat down. I think we were both exhausted; I know I was. We sat silently for a while, side by side. Our breathing slowed, I could hear it.

I watched his rageful, closed profile. Finally I spoke. I told him I knew he was very angry at me, and that I’d been angry at him too. But I felt I’d needed to bring him back where it was safe, and I’d done it because I loved him and cared about him.

He didn’t answer me. He wouldn’t look at me.

I told him I thought I should go now, that I didn’t think we could have a good visit while we were both so upset. He said nothing. I kissed him and left, letting the nurses know on my way out where he was.

Was there a lesson in any of this, anything to take away? What I saw, right or wrong—what I despairingly concluded—was that my presence didn’t matter. While perhaps sometimes it was comforting to Dad (though this time, obviously, clearly not), it didn’t and couldn’t ever change anything. This was a lesson I had to learn over and over with my father’s illness, even up to the end: that it would be progressive no matter what I did, that he would get worse no matter what I did. I think this is the hardest lesson about Alzheimer’s disease for a caregiver: you can never do enough to make a difference in the course of the disease. Hard because what we feel anyway is that we have never
done
enough. We blame ourselves. We always find ourselves deficient in devotion.
Did you visit once a week? you might
have visited twice. Oh, you visited daily? but perhaps he would have
done better if you’d kept him at home.
In the end all those judgments, those self-judgments, are pointless. The disease is inexorable, cruel. It scoffs at everything.

Still, still, we look to ourselves to have made a difference. We remember everything we didn’t do. This gets played out in painful ways in families too, when one person takes on the care-giving responsibility. Sometimes I wished my siblings would do more—as though that would have made any difference! Just as, when my father was in Denver and my sister had responsibility for him, she felt we others didn’t do enough. It is costly, emotionally, to watch someone move inevitably, step by step, into a dementing illness, and it’s hard not to want to blame someone—ourselves most of all. But it’s useless. At this point in my father’s disease, I tried to talk sense to myself. I told myself I had to realize that what I did made almost no difference to him, that aside from the momentary pleasure he took from seeing me at the start of a visit, nothing that happened between us even registered much with him anymore.

I dropped back from the daily visits. By early April I was going usually only twice a week. Then I got the first call. Was I free? Could I come right away? Dad was in a prolonged violent episode, and they thought maybe I could calm him without a struggle so they could get him tranquilized. And of course I got up, put my coat on, and drove out.

How many times did I go out in all? Five or six, over those weeks, several times from our house in the country where I’d gone to try to get some work done—a house we’d bought in part because it was only a little over an hour and a half away from Dad. My husband came with me one time, and I could feel his appalled shock at the vision of Dad that confronted us: tied down to his chair—which my husband hadn’t seen before— slow to register our presence, slow to come around from his angry terror. My husband had thought he would help me, but in the end he let me do it all: hold Dad, talk to him, untie him, sit next to him, rock him when the attendant came in to administer the shot that would release him into calm and then sleep.

Sometimes I was able to calm him myself by reading to him. Certain cadences, most often the Bible (once, oddly, Simone Weil in translation), seemed to work. Sometimes I sang. Sometimes I just held him and stroked him, as you would a frightened child who’d just waked from a nightmare.

The fantasies he had in this period were violent ones. He was being attacked. “They” were coming to get him, and he needed to arm himself in preparation. He showed me once what he would use: clothes hangers from his closet. “That’s all that’s left to me,” he said bitterly.

I didn’t know then that aggression and disruptive behavior are often signs of physical discomfort in an Alzheimer’s patient. Now that I do, I suspect my father was in pain during these episodes, but that he himself had no understanding of this in a conventional sense and certainly no way to say, “I hurt.” Instead he incorporated the pain into his delusional life. “They” were hurting him—badly. “They” needed to be fought off. And when he fought them off, “they” needed to restrain him, to tranquilize him, in order to maintain some kind of order for the sake of the other patients on Level Four.

Once—somehow, I think, sensing the truth of the matter— I did think to ask him if he hurt somewhere. He said he did.

“Where?” I said.

He couldn’t answer me.

I began to touch him. His shoulders. “Here? does it hurt here?”

He didn’t answer.

He seemed to grunt in the affirmative when I touched his belly, and I reported this to the nursing staff, but when they questioned him he was unresponsive, so we all let it go.

Even on the “good” days now, when I visited unsummoned, he was more deeply out of touch. Often he’d be in his cruising mode, sometimes carrying something—a book, a bundle of dirty clothing. His walk by now was an odd Parkinsonian shuffle, but
driven,
as though someone were pulling him forward slightly faster than he wanted to go. And of course there was the stopping to strategize about how to get around the things he imagined in his way.

He’d slow down in his lucid moments, sometimes long enough to have the start of a cordial conversation. But he couldn’t be held to that for long. Sometimes I’d lure him to his room for a while and talk with him while I could, or read, or sing. But then the other lure, the siren song of his compulsions, his anxieties, would reach him, and he’d want to move again. I’d walk with him as long as he seemed aware of me, as long as it seemed we were, in fact, walking together; but when he lost track of me, I’d tell him goodbye and leave quickly.