The Story of My Father

by Sue Miller

  Why should this have been?

  It happened because the part of his brain whose function was to transfer new information into memory, the hippocampus, was being destroyed by Alzheimer’s disease. New names, new skills—how to open the door on my car, for instance, or how to work the remote controls for a television—these couldn’t be retained for more than a few days because they couldn’t get past the hippocampus into permanent “storage” in other parts of the brain.

  He began to have trouble, too, with ordinary nouns, and his speech became more and more riddled with substitutions. And of course it turns out there’s a place in the brain specific to nouns, to naming things. Typically, when this region is damaged, the person sounds much the same, his rhythms of speech are intact, but he uses pronouns instead of nouns, and generic words or categories instead of instances. When my brother and his son and his son’s beautiful Latina fiancée visited Dad one day, he remembered the visit to report to me and he remembered them, but he said Bob and Marc had come to call with “a Chinese man.”

  Sometimes he’d substitute the name of part of something for the whole. I remember my confusion when he was trying to tell me something was wrong with his rocking chair, because he kept calling it “the cloth” or “the weaving.” When he finally retrieved the color correctly—“the green weaving”—I suddenly recognized that the reference was to his old Victorian rocker with the worn green velvet cover.

  Categories and names of relationships flummoxed him. When a polite, mentally intact resident asked, “Oh, is this your daughter?” he answered, “No, I’m his . . . mother.”

  Still, he had my name. He could remember my mother by her name. And he could remember her—not always whether she was dead or alive, but her—her being, her essence. Stories about her, or about others who had been dear to him, could still light his face and make him laugh. I took pride in this. “He never didn’t know me,” I say now when people say it must have been terrible. And that is almost true. There were seconds or minutes one time when he seemed not to know who I was, but he always greeted me warmly when I first arrived; he always understood, in the first flood of pleasure, our relation to each other. I knew other people whose parent or spouse had lost this part of memory nearer the beginning of the illness. I knew how painful, how isolating that was, and my gratitude that this part of his brain was left to Dad—to all of us—was deep.

  The visual pathways in his brain began to fail. The first thing to go had been his ability to read, to connect those symbols on the page with a meaning—though he could still pick out words separately, evidence that the problem was not purely with his eyesight. Still, it was his eyesight he blamed, and it was with his eyesight that he wanted help. He had had cataracts removed while he was in Denver, and in fact one cornea had by now clouded a little again, so I took him to the eye doctor for that; we drove to the hospital in Concord one day and I watched as Dad sat forward in the darkened room, his chin resting on a stabilizer, and the laser quickly, magically, cleared that eye again.

  But it didn’t give him back what he had imagined it would—his ability to read and, beyond that, probably, some old sense of himself. He went on asking me, each time I visited, to take him for another appointment to the eye doctor, to get him a new prescription, a new pair of glasses, and I continued to put him off. As time went by he grew irritated at my slowness to respond to his need, at my indifference, as he must have seen it, to his dilemma.

  And so finally, unable to bear that, I scheduled another appointment. I asked the doctor ahead of time to try to help my father understand that new glasses wouldn’t help. And because he was a doctor, because he was a man, my father listened to him, and for a few days remembered: There was something organically wrong, but it wasn’t with his eyes, it was with the messages between his eyes and his brain. And then he forgot and began to agitate again for another doctor’s appointment.

  Increasingly now, too, he misunderstood—“misread”—the visual. Oliver Sacks has written about our way of seeing as being learned; and scientists have begun to understand that, if certain visual synapses—electrical connections between nerve cells in the various visual systems of the brain—aren’t formed and “exercised,” built up, by a certain age, they can’t be developed later. Sacks speaks of a blind patient whose sight was given to him surgically in middle age who never learned “how” to see certain things.

  And now I watched my father as those synapses stopped working in his brain, as he “unlearned” seeing. Shadows became for him not the absence of light but dark objects, as perhaps they appear to infants and little children. Their presence was inexplicable and disturbing to him. His own shadow underfoot on a sunny day, for instance, was often an irritant, a strange black animal dogging him. He would sometimes kick or swat at it as we walked along.

  In the later stages of his illness, he stopped “seeing” food on the left side of his plate. At first everyone worried about his appetite, because he was growing so thin anyway. But then an attendant noticed the pattern. He was pleased and excited to report to me that if he simply rotated Dad’s plate a half circle, he’d soldier on and clear off the whole thing.

  Some “hallucinations” may have been simply mistakes. I thought for a while that his seeing a bull in the yard outside his window was hallucinatory until I noticed in the Victorian iron bench out there two curving back pieces like horns and, below those, a pair of floral motifs that looked like eyes. Just a misreading of what was there, then, not purely an invention.

  Sometimes it wasn’t clear what was going on. One day, as we were leaving his room, he gestured at his bathrobe, hanging from a hook. “Dave Swift,” he said, and laughed. “He’s been standing there all day.” And I looked at the bathrobe, hung there like a tall, skinny man in plaid, skinnier than my Uncle Dave but not by all that much, and I laughed too. But thinking about it later, I couldn’t figure out whether this was a mistake or a joke, a misreading or a hallucination. Who could say what was going on in what part of the brain?

  And what were the impediments he saw late in his illness that caused him to tiptoe so carefully over something I couldn’t see, or to get down on the floor and crawl around it? Simple disturbances in his visual pathways, in the way he saw something real? or internally elicited disturbances that led him to invent something where there was nothing—to hallucinate?

  Of course, he had delusions too. When we were visiting one day, he told my husband that there was an underground railroad at Sutton Hill. My husband laughed, thinking that Dad was making a joke about his wish to escape. But later in the day Dad soberly pointed out to him the spot where the train pulled in. And Marlene reported to me that she found him at this spot more than once, that he told her he was waiting for the train.

  Oddly, this seems not unconnected to the intention of the design of Sutton Hill. The shops and the bank, post office, and grocery store were all arrayed along what was called Main Street, an indoor walkway with an old-fashioned clock tower at one end. All had whimsical storefronts. Why not give Main Street a railroad station in your imagination too?

  Sometimes the delusions were painful, like the one about my sister being abducted by terrorists. I tried to reassure him that time; I reported that I’d spoken to her and she was safe in Denver. But he couldn’t be comforted. He persisted. He found me, I think, hard-hearted in the face of his certainty that she was in mortal danger. Finally I called my sister to ask her to get in touch with him herself and tell him she was all right.

  Sometimes the delusions were pleasant. He told me about wild, elaborate gatherings with other residents. They were putting on a play together. They’d had a kind of combined lawn and pajama party. Sometimes he would have heard an old friend, often someone long dead, lecture or preach. Sometimes he’d see Mother. I came to feel that these were the residue of dreams, dreams that seemed no less real to him than the fractured reality he had to live through each day and so, in his interpretation, became a part of that reality.

  Not al
l Alzheimer’s patients have hallucinations and delusions; the estimates vary wildly in the literature from 30 to 60 or 70 percent. For those who don’t, the course of the disease is simply progressive cognitive deterioration. But when they are present, they too are traceable to conditions in quite specific parts of the brain and probably also to failures within networks linking certain areas.

  Hallucinations and delusions in AD patients are born in the same areas of the brain in which schizophrenics are also disturbed —primarily those areas responsible for receiving visual and auditory signals. But the nature of the Alzheimer’s hallucinations and delusions is generally different from those of the schizophrenic. More often, schizophrenics see themselves at the center of the delusion. They are being persecuted, they are being abducted by terrorists or monitored by the CIA. In any case, they are the main actors in the drama. The Alzheimer’s patient is more likely to stand to the side, as Dad did at this stage of his delusions. More likely to report that others around him are doing bizarre things or that someone else is in trouble or danger. More often he has been just a witness, as we so often are in dream life, to the strange misadventures and tragedies around him.

  And oddly, though the presence of hallucinations and delusions is correlated with a more rapidly advancing version of Alzheimer’s and some researchers are inclined therefore to see it as a subset of AD, most experts believe that there is less cortical damage, less ventricular enlargement, in the hallucinating or delusional patient at this stage of the disease. It is as though the patient needs more cortex to develop and elaborate the hallucinatory or delusional ideas.

  I knew neither of those facts at the time. I’m grateful, of course, not to have known the first, that these symptoms are associated with a quicker arrival at what is euphemistically called the “cognitive end point” of the disease. But if I’d known the second fact—that these symptoms may indicate more cortex—I’m sure I would have taken pride in it. Why is he so crazy? Ha! Because he’s got more brain left.

  This is how we are, after all, watching the people we love disappear. This is what is left to us; this is the comfort we can take. “He was never violent.” “She always loved being with the children.” “She’s just as stubborn as ever.” I took pride in my father’s always recognizing me, as I was proud that he retained his graciousness, that he always said to Marlene—and, later, his other caretaker, Nancy—“It was grand to see you” when he’d run into them in the hallways. I was even proud when he had an elaborate delusion about the Civil War near the end of his life and mistook my foot for Antietam. Who but Dad? I thought. Who but Dad?

  Whatever the remotely personal characteristic that seems to have escaped the disease, we seize on it. Whatever idiosyncratic neuronal patterns still fire, still express something laid down with care and attention and love years earlier—this is important, and we cling to it. He’s not just an Alzheimer’s victim. He’s still, somehow, himself. He’s managed to hold on, to outwit this disease, in this one or two or three ways.

  But of course, I knew better. Outwitting the disease isn’t possible. It wasn’t owing to his character or depth of attachment to people that Dad remembered us. It was what the disease spared while it destroyed something else. He could have stopped recognizing us earlier and forgone the delusions. He could have dropped verbs—there is a part of the brain specific to verbs—and been stuck with a list of nouns to repeat without much skill at connecting them by actions. It was the disease that determined what would go first and what would be left, not vice versa.

  I remember talking about him with an old friend of mine, someone who’d known Dad too, years before. By then, near his death, Dad was occasionally violent, and I recounted that to this friend.

  He shook his head. “Isn’t it strange,” he said, “that under that gentle, sweet exterior there should be all that violence?”

  A different model, this one: Freudian. One that saw the constraint of the superego eaten away by the disease, and the elemental core, the uncontrolled center, the id, as still remaining, unbuffered. The violent Dad who was secretly always there, emerging now that he’d lost control of himself.

  No, I said. No, that’s not the way it worked. It was his brain, not a theoretical construct in his mind, that was being destroyed. He was organically a different person. I was trying to be pleasant and conversational, but I remember feeling a real anger, even a contempt, for my friend in his misunderstanding.

  Yet I indulged myself—didn’t I?—in the correlate belief: that the good stuff he retained, he retained because of who he was: because of the fineness, the excellence, of who he was. And that was just as much a superstition, a fiction, but one I didn’t wish to shake. And I didn’t ask myself to shake it, though I did know it was a fiction. “He never didn’t know me,” I said proudly. “Up to the end, he knew me.”

  Technically, importantly, this was true. But there were several times when his gaze at me went blank, momentarily, though he’d known who I was seconds before. And one of the times he was violent with me, when I was struggling physically with him to bring him inside after a walk and he didn’t want to come—the last outside walk we took—he looked at me with hatred and contempt and I think he didn’t know me at all. I hope not, actually. I hope he did think I was someone else.

  But even the last time I visited him when he was conscious, he recognized me at first.

  When I came into his room, he was standing by his crib bed, gripping its rails with white-knuckled intensity and staring fixedly at something he was seeing on his blanket. He was slightly bent at this point, a gentle Parkinsonian curve to his back. I spoke to him, but he didn’t seem to hear me. I went over and touched him, I swung my head just under his face and looked up at him, smiling.

  “Hi, Dad,” I said.

  He started. “Why, Susie!” he said, calling me by my little-girl name. And it seemed that he was actually seeing me as a little girl in that moment, his smile was so delighted, his voice so light and glad.

  He knew me. I clung to that, to those happy moments at the start of each visit—before I denied what he knew to be true. Before I failed to respond humanely to what he reported as calamity. Before I told him what I could not or would not do for him today—take him to the doctor, find his books, get his car back. Before he said, as he did at least every other time I got up to leave, “Say . . . are you driving? I was wondering if, maybe, you could give me a lift home.”

  Chapter Six

  LISTEN SOMETIME to the way people speak of others’ deaths, of their dying. It’s full of judgment—censure here, praise there. What we all approve of, what we like in a death, is the dignified old person, still relatively intact physically and all there mentally, who carefully puts his clothes away one night, goes to bed, and never wakes up. We like someone who doesn’t suffer terribly and make us watch that suffering. Who has all his marbles till the day he goes, who just doesn’t get up one day. “That’s the way to do it,” we say, as though praising a canny decision.

  Susan Sontag, in Illness as Metaphor, writes about the phenomenon of blaming people for their illnesses:

  With the modern diseases (once TB, now cancer), the romantic idea that the disease expresses the character is invariably extended to assert that the character causes the disease—because it has not expressed itself. Passion moves inward, striking and blighting the deepest cellular recesses. . . . Such preposterous and dangerous views manage to put the onus of the disease on the patient.

  I felt this kind of judgment on Dad in his fellow residents at Sutton Hill. He always lived among the general population there (no such thing as an Alzheimer’s ward yet, just that short time ago!) and I could sense their recoiling from him. Annie, one of his nurses, funny and loving but indiscreet to the core, confirmed it for me—the irritation and contempt his neighbors felt for him. “Those old ladies,” she said, shaking her head, full of her own judgment. “They act like you get to choose the way you go.”

  I was sorry Annie told me this, but I
wasn’t surprised. The fact was, of course, that I recognized my own judgments in theirs. I even recognized Dad’s judgments. I remembered he’d said, years earlier, of the wife of an old acquaintance who had Alzheimer’s disease, “I hear she’s completely ga-ga now.” The tone was mocking, not kind—surely the same kind of thing, in the same kind of voice, that his neighbors said about him now. That I had said about wacky old people, too, and felt about them. Until my own father turned wacky.

  I think, until I lived through my father’s dying, that I thought death finished a person’s story, that it was part of the narrative arc of someone’s life and made a kind of final sense of it. The deaths I’d known until then—and there hadn’t been many, my family was so long-lived—had misled me in this regard. I thought you earned a certain kind of death. That my grandparents were still alive and wholly themselves because of who they were somehow; because of how they’d lived. And my mother! Well, hadn’t she had the very death she would have wished? In an evening dress, at a party, drinking, smoking, after a day of pleasure and deep, satisfying excitement?

  In 1979, my mother was sixty years old, two years older than I am as I write this. She was full of intellectual curiosity, full of energy and life, full of ego and emotion, full of herself. My father had a sabbatical that year, starting in the fall, which coincided with his retirement as academic dean from Princeton Theological Seminary, where he’d gone when he left the University of Chicago—from now on he would just teach church history. My parents decided they’d rent their house out and come to live in Cambridge, near me, for that semester.

  I had mixed feelings about this, feelings that centered, of course, on her. Would she drop by constantly? Would she want to see me all the time? More accurately, Would she eat me alive? I was especially worried because 1979 marked a time of change for me in my writing life, and I was afraid her needs would somehow interrupt that life.