The Story of My Father

by Sue Miller

  Some of the reason he was going to Denver now was as a stopgap measure on the way to California: there was a wait list for Pilgrim Place that was two or three years long, and he had agreed with us that he needed sooner than that to be more with other people and to have more help in daily living. There was a new “elderly complex” being developed near my sister, one she and her husband had hoped his parents might move to also. We had proposed it to Dad for the interim, and he agreed.

  My sister and I were the ones in the family who had seen this as necessary; neither of my brothers felt there was a problem with Dad. And in general when I’d expressed my concern for him, she was the one of my siblings who responded. She and I had also been the ones who sorted through and distributed Mother’s possessions after she died. She and I had divided up Dad’s things this spring in anticipation of his move. She was expecting him out west in any case in the fall, after his summer in New Hampshire. It seemed natural to turn to her now, to ask her in effect to welcome him this much earlier than she’d planned, to watch out for him until he seemed all right again or until there was someone in New Hampshire—both my brothers were planning to visit him that summer—who could be, in some sense, responsible for him.

  When I called her and proposed this, she agreed instantly. Quickly we worked out a division of labor. He would come to her, and she would either send him back later on his own or bring him back, depending on how he seemed, on how completely he recovered from this episode. Over the next few days I would get to New Jersey and take care of the last details in the house, figure out what to do with his car, still in his garage there, fetch the dog, and deal with the vanished van. Done.

  The next day I presented the plan to him, mildly, casually. “Tell you what, Dad: why don’t I . . . ?”

  Dad would have none of it. He was dismissive—politely dismissive, of course—but absolute: No. No. Of course I couldn’t do all that. There was no need. He’d be on his way; the van would turn up; he’d take the bus home, or fly, and manage everything. No need to trouble myself.

  I tried several more times, but I couldn’t make a dent. At some point during the day I had my sister call him and invite him out to her house in Denver, just for a little rest after this exhausting spring. His responses to her as I heard them on my end were much the same as what he’d said to me. Oh, no, that was too much trouble. There was no need. He’d had a lovely rest at Sue’s, wouldn’t head home until he felt really restored. He couldn’t, wouldn’t, ask her to go to so much trouble.

  I suppose what I hoped was that I could wear him down eventually. In any case, I kept at it on and off through the day. It would have been funny, I think, to anyone overhearing us— each of us being so scrupulously polite to the other, bowing and scraping verbally, but each stubbornly, absolutely persistent.

  “Why don’t you think about . . . ?”

  “No, no, it’s far too much. . . .”

  “Dad, I really think you should. . . .”

  “That’s very kind, but I couldn’t. . . .”

  And so on. We were too temperamentally alike in this regard to make any progress at all.

  It became clear to me that I would need to be honest and forceful or he would never accede to me. That I would need to insist. I had never insisted on anything with my father. I don’t know that anyone had.

  The moment arrived later in the afternoon. My husband had wanted to be around for moral support when I made my move, and he was home. We were all in the kitchen, and Dad began again to say how kind we had been, how much trouble he’d caused, and how he thought certainly the next day he ought to get going.

  I said I didn’t think he ought to go to New Jersey alone. That I didn’t want him to. I thought he should go to Denver.

  My husband concurred.

  Dad pointed out that there was an awful lot to do in New Jersey. He needed to be there. He wanted to get clear of it and get up to New Hampshire for the summer.

  I told him I would handle the details in New Jersey.

  He couldn’t let me, he said.

  The back door was open, and in the silences between us we could hear the music of someone in the apartment building behind us, the voices of people next door, the wind in the trees.

  He brought up the dog again.

  I said I would get the dog; I would find a place for her until he came back east.

  He certainly couldn’t let me do that, he said. He’d been enough of a bother already. Though he was still characteristically polite, there was anger now—very contained, very submerged—in his voice.

  I took a breath. “Dad, I can’t let you go,” I said. My heart was pounding in my ears.

  “I’m afraid you have to.” He smiled a thin smile.

  “No, Dad, I can’t. You’ve been ill, really. You’ve had a kind of breakdown of some sort. . . .”

  There was a terrible silence. My husband ended it, offering his general support of me, making the argument again. Dad, as ever more willing to listen to men, nodded and seemed to consider what he was saying, but he still did not agree, did not say yes.

  He and I were sitting opposite each other at the kitchen table. I had been looking sideways while my husband talked, out the window at the blur of leaves in the late-afternoon sun. Now I focused on Dad. I leaned forward toward him. “Dad, listen. Imagine if the positions were reversed,” I said. “If I had shown up at your house, and I was exhausted and seeing things that weren’t there.” Now it was his turn to look away. “You would feel it was your responsibility, your duty, to be sure I was all right, wouldn’t you?” I waited a moment. “You would never, never let me go off alone again right away. Would you?”

  There was another long silence in which I think he saw his position clearly—and I saw it too, for the first time. He understood and we understood: we were taking the first step into his illness, whatever it was, together. We would be in charge of him now.

  It was over in a few seconds. He looked back at me, then down. “No,” he said quietly. “No, you’re right. I wouldn’t let you go.”

  The next day, my husband bought him an overnight bag, loaned him a fresh shirt, and we drove him to the airport and sent him off to Denver, a small, thin, oddly dressed elderly man, still wearing his beloved horrible hat.

  I flew to Newark airport, got a bus from there to Princeton, and then a cab from what is euphemistically called “downtown” to Dad’s house in the woods. I spent some hours there, bagging trash and odd possessions, packing up the last few things, vacuuming, cleaning the kitchen and bathrooms. It was awful to me, pathetic, to see the way he’d been living—no furniture, a mattress on the floor to sleep on, dog hairs everywhere.

  By midafternoon I’d done what I could. I got in Dad’s car and fetched his dog, Naomi, from the kennel. I drove to Connecticut and left the dog at Dad’s sister’s house there; she had offered to take her. I got home long after dark and parked the car in a willing neighbor’s driveway until my sister and Dad could pick it up.

  I spent much of the next day on the telephone. The van had turned up—at last!—and been towed to a nearby garage in western Massachusetts. I talked to the people in the rental office in New Jersey about their perhaps going up to get it for a surcharge. No deal. Finally I arranged to have it driven back down by a guy at the garage. He understood exactly how much at his mercy I was. He charged me a blackmail rate and kept me on the phone a long time. He said he loved my voice, he’d love to meet me, what did I look like, what was I wearing? I was very, very polite to him because I felt I had to be, but it seemed the final, almost laughably irrelevant unpleasantness to get through.

  On schedule, though, we left for our stay in France; Dad came back east a few weeks later with my sister and had his summer in New Hampshire.

  That fall I had a fellowship in writing at the MacDowell Colony in New Hampshire. We didn’t have phones in our studios there, so I was sitting in the public phone closet under its single bright light, the voices and laughter of the other fellows in the m
ain room only slightly muffled by its closed door, when I learned from my sister what I already knew in my heart— that Dad had been diagnosed with what is called “probable Alzheimer’s disease.”

  Chapter Three

  IN 1907, a German doctor in Frankfurt named Alois Alzheimer wrote an article on a mental patient of his, a woman who had died at fifty-six after a strange five-year illness.

  Her first symptom had been paranoia, a suspiciousness of her own husband. Then, rapidly, that became entwined with profound memory impairment:

  She could no longer orient herself in her own dwelling, dragged objects here and there and hid them, and at times, believing that people were out to murder her, started to scream loudly.

  She was institutionalized. It was difficult, Alzheimer said, to examine her, she was so confused, so frightened: “She bursts into loud screams each time she is approached.” For a while she was still able to speak—at least to name objects, albeit with difficulty. Gradually, though, she declined: “General imbecility keeps progressing.” By the time of her death, he described her as “totally dulled, lying in bed with legs drawn up, incontinent.”

  He performed an autopsy at the request of the director of the asylum, in part because no one could understand what had happened, what had gone wrong with this patient. What he discovered only increased the mystery. Her brain was riddled with neurofibrils, thickened and changed in a way that made them chemically unrecognizable. In places they were clustered together in what he called thick bundles. In addition, scattered over the entire cortex was a “peculiar substance” that he was, again, unable to recognize chemically. He felt he was looking at a new disease, a mental illness with no name.

  Now we call it by his name, Alzheimer’s disease, and it is the dread disease of our time, particularly for those of us who are turning fifty, or sixty-five, or seventy and have escaped the other diseases one used to die of. It affects five million Americans and is the fourth leading cause of death among us. This is what was wrong with Dad, the answer I hadn’t known to the questions the people who cared about him kept asking me.

  It was called probable Alzheimer’s disease in his case because at that time the only sure diagnosis was by autopsy, after death. Now we know of several genes that predispose to it, some with near certainty, so DNA testing would be a possible diagnostic tool. Would be, but isn’t often—first because it’s expensive; and second, because there’s a sense in which for the patient, already afflicted, it’s useless. Even now, fifteen years after Dad was diagnosed, there’s nothing to offer someone with this disease except a few palliatives.

  When I heard what was wrong with Dad, I experienced a strange rush of relief, a feeling that I think was related to the sense I’d had, for some years, of being responsible for him. I’d been single when my mother died, of all four siblings I lived nearest, and he and I had wound up spending a lot of time together over the six years between her death and his diagnosis. In the summers, I had gone up to see him in New Hampshire nearly every weekend, usually stretching my visits out to three or four days. I tried to have at least one extended summer stay of several weeks or even a month with him also. He came to our house in Cambridge for at least half his holidays, and I frequently drove to New Jersey just to visit. We spoke often on the phone and wrote more often—I still have many of his letters to me. I had noticed his failing early on, but no one else in the family shared my perception. “He’s fine with me,” my brother would say, and I would feel accused of imagining things or of responding to Dad in a way that was somehow responsible for making him seem vague.

  Actually, what was unique in our relationship, Dad’s and mine, was that when we were together we were usually alone together. Unlike my siblings, who all had spouses and multiple younger children, I had only one child, and at that stage Ben spent some of his free time with his own father and most of his summers at camp. When Dad and I saw each other, we were able to talk intimately, leisurely—about our lives, our family’s story, our work. In the years after he retired, we labored together side by side for weeks and months, each summer and fall, redoing the ruin of a house he’d bought in New Hampshire. I honestly think I saw the workings of his mind more clearly than my siblings did at that stage. Certainly I saw his oddness, when he was odd, more sharply. But even I didn’t really want to confront it. It came and went anyway, and so again and again I was able to argue myself out of acknowledging it.

  But there came a point when I knew I had to try to do something about what I felt. I’d seen it once too often, too clearly. His friends, his last living sister, had begun to ask their questions. I felt the burden—as the one who thought something was wrong myself; as the one who seemed to be held responsible by others; and, after all, as the oldest daughter in the family, the one who saw him most—to do something.

  I moved in slow motion, it must be said, given who Dad was and, probably no less, who I was.

  First I tried to talk to him about it—about depression, for instance, which seemed a possible explanation. About medication. He was characteristically vague in response (he could be more effectively nonresponsive than anyone I’ve ever known), and I felt he might be telling me, in essence, that it was none of my damned business.

  Maybe that was true, I don’t know. Certainly I was always able to shift quickly to thinking so, to feeling as guilty for trying to do something as for doing nothing—because while I didn’t want to be irresponsible, I didn’t want to be intrusive either. I remember writing once to his sister, my aunt Grace, that it seemed wrong to insist to Dad that he needed to have a particular kind of old age: as long as he was all right, why shouldn’t he be sad sometimes, or scatty, or even not as tidy and fastidious as he once was? When I reported to my older brother that Dad wore the same clothes over and over in New Hampshire, Bob said, “Hell, I wear the same clothes over and over in New Hampshire!” and I thought, Yes, yes, that was right; we’re all slobs up there; I was being foolish again.

  But the question now was, was he all right? When his friends asked me that, I felt a sense of guilt that I didn’t know for certain one way or the other and that I wasn’t being aggressive enough about finding out.

  Okay: shamefacedly, then, I took the next step. I poked into his medicine chest when I was visiting and made a list of the contents so I could talk to my own doctor about what they might be, what they might mean. But there was mystification here too. For instance: Dad had a medicine my doctor told me was an antidepressant. That made me hopeful that he’d gone to his doctor himself, that he’d been diagnosed, that he was being treated. For a while—perhaps six months—I relaxed. But when I checked his medicine chest again, the bottle was still at the same level, nearly full. Now, what did that mean? Had he been taken off the medication? Did he have something else for depression that he kept elsewhere? Had he simply forgotten to take it or decided on his own he didn’t want to, didn’t need to? That would have been exactly like him. And once again, it was impossible to find out anyway, given the kind of nonresponse he made to my direct questions.

  At a later point, feeling like a snoop, a spy—a criminal, really—I actually called his doctor without his knowledge to make a plea for information. His doctor: the name on the medicine bottles.

  But no, he wasn’t Dr. Nichols’s doctor anymore; he hadn’t seen him for several years. Though he had noticed some memory loss before then.

  Did he know, then, who my father was seeing now?

  No idea, he said.

  I went back to Dad again and tried to pierce the thicket of proud (or was it only confused?) obfuscation. Finally I got another name. I called him. This man had seen Dad, within the year. He had prescribed some medications, yes, but he thought Dad was in good shape. He didn’t know him well enough to comment on memory loss.

  I felt utterly stymied at this point. It seemed, in the end, that unless Dad was willing—or able—to talk to me honestly and openly about his health, there was almost nothing I could do.

  What I did do, finally
, was to pressure him to change his circumstances. To urge him, with my sister’s support—she was, as I’ve said, the one who listened to me, who seemed to be willing to believe there was something wrong—to move.

  And now he had moved, and my sister, living ten minutes away from him, guiding him into his new life, had found him a new doctor, had insisted on starting out with thorough exams, and had given us all a diagnosis. It was real. It could be named. It was Alzheimer’s disease. And I felt my guilty relief to know it.

  In my own defense, I’ll say that this was born in part of ignorance: I didn’t really know much about the disease and the details of its terrible course. And in any case, the relief was mixed, of course, with real sorrow for Dad. But the diagnosis signaled the end to the nameless anxiety that I’d felt had been mine alone for years, and for that, no matter what, I was grateful.

  My father’s obituary in 1991 said that he died of Alzheimer’s disease. Of course, no one, strictly speaking, dies of Alzheimer’s disease. They die of other things, horrible things that happen to them because they have Alzheimer’s disease. Sherwin B. Nuland in How We Die lists some of the possibilities and details their agonies: starvation, because you’ve forgotten how to eat; pneumonia, because you’ve forgotten how to walk, how to sit, and your lungs suffer for that; also urinary-tract infections and septic decubitus ulcers. This last is what Dr. Alzheimer’s original patient died of, eventually—bedsores: “lying in bed with legs drawn up, incontinent . . . despite all care, [she] developed decubiti.”