How to be Alone

Wishful thinking? Yes, to some extent. But one of the basic features of the mind is its keenness to construct wholes out of fragmentary parts. We all have a literal blind spot in our vision where the optic nerve attaches to the retina, but our brain unfailingly registers a seamless world around us. We catch part of a word and hear the whole. We see expressive faces in floral-pattern upholstery; we constantly fill in blanks. In a similar way, I think I was inclined to interpolate across my father’s silences and mental absences and to persist in seeing him as the same old wholly whole Earl Franzen. I still needed him to be an actor in my story of myself. In my letter to my friend, I describe a morning rehearsal of the St. Louis Symphony that my mother insisted that my father and I attend so as not to waste her free tickets to it. After the first half of the session, in which the very young Midori nailed the Sibelius violin concerto, my father sprang from his seat with miserable geriatric agitation. “So,” he said, “we’ll go now.” I knew better than to ask him to sit through the Charles Ives symphony that was coming, but 1 hated him for what I took to be his philistinism. On the drive home, he had one comment about Midori and Sibelius. “I don’t understand that music,” he said. “What do they do—memorize it?”

LATER THAT SPRING, my father was diagnosed with a small, slow-growing cancer in his prostate. His doctors recommended that he not bother treating it, but he insisted on a course of radiation. With a kind of referred wisdom about his own mental state, he became terrified that something was dreadfully wrong with him: that he would not, after all, survive into his nineties. My mother, whose knee continued to bleed internally six months after her operation, had little patience with what she considered his hypochondria. In September 1991 she wrote:

I’m relieved to have Dad started on his radiation therapy & it forces him to get out of the house every day [inserted, here, a smiley face]—a big plus. He got to the point where he was so nervous, so worried, so depressed I knew he had to make some decision. Actually, being so sedentary now (content to do nothing), he has had too much time to worry & think about himself—he NEEDS distractions! … More & more I feel the greatest attributes anyone can have are (1), a positive attitude & (2), a sense of humor—wish Dad had them.

There ensued some months of relative optimism. The cancer was eradicated, my mother’s knee finally improved, and her native hopefulness returned to her letters. She reported that my father had taken first place in a game of bridge: “With his confusion cleared up & his less conservative approach to the game he is doing remarkably well & it’s about the only thing he enjoys (& can stay awake for!).” But my father’s anxiety about his health did not abate; he had stomach pains that he was convinced were caused by cancer. Gradually, the import of the story my mother was telling me migrated from the personal and the moral toward the psychiatric. “The past six months we have lost so many friends it is very unsettling—part of Dad’s nervousness & depression I’m sure,” she wrote in February 1992. The letter continued:

Dad’s internist, Dr. Rouse, has about concluded what I have felt all a long regarding Dad’s stomach discomfort (he’s ruled out all clinical possibilities). Dad is (1) terribly nervous, (2) terribly depressed & I hope Dr. Rouse will put him on an anti-depressant. I know there has to be help for this … There have been disturbing, distressing things in our lives the past year, I know that very well, but Dad’s mental condition is hurting him physically & if he won’t go for counseling (suggested by Dr. Weiss) perhaps he now will accept pills or whatever it takes for nervousness & depression.

For a while, the phrase “nervousness & depression” was a fixture of her letters. Prozac briefly seemed to lift my father’s spirits, but the effects were short-lived. Finally, in July 1992, to my surprise, he agreed to see a psychiatrist.

My father had always been supremely suspicious of psychiatry. He viewed therapy as an invasion of privacy, mental health as a matter of self-discipline, and my mother’s increasingly pointed suggestions that he “talk to someone” as acts of aggression—little lobbed grenades of blame for their unhappiness as a couple. It was a measure of his desperation that he voluntarily set foot in a psychiatrist’s office.

In October, when I stopped in St. Louis on my way to Italy, I asked him about his sessions with the doctor. He made a hopeless gesture with his hands. “He’s extremely able,” he said. “But I’m afraid he’s written me off.”

The idea of anybody writing my father off was more than I could stand. From Italy I sent the psychiatrist a three-page appeal for reconsideration, but even as I was writing it the roof was caving in at home. “Much as I dislike telling you,” my mother wrote in a letter faxed to Italy, “Dad has regressed terribly. Medicine for the urinary problem a urologist is treating in combination with medication for depression and nervousness blew his mind again and the hallucinating, etc. was terrible.” There had been a weekend with my Uncle Erv in Indiana, where my father, removed from his familiar surroundings, unleashed a night of madness that culminated in my uncle’s shouting into his face, “Earl, my God, it’s your brother, Erv, we slept in the same bed!” Back in St. Louis, my father had begun to rage against the retired lady, Mrs. Pryble, whom my mother had engaged to sit with him two mornings a week while she ran errands. He didn’t see why he needed sitting, and, even assuming that he did need sitting, he didn’t see why a stranger, rather than his wife, should be doing it. He’d become a classic “sundowner,” dozing through the day and rampaging in the wee hours.

There followed a dismal holiday visit during which my wife and I finally intervened on my mother’s behalf and put her in touch with a geriatric social worker, and my mother urged my wife and me to tire my father out so that he would sleep through the night without psychotic incident, and my father sat stone-faced by the fireplace or told grim stories of his childhood while my mother fretted about the expense, the prohibitive expense, of sessions with a social worker. But even then, as far as I can remember, nobody ever said “dementia.” In all my mother’s letters to me, the word “Alzheimer’s” appears exactly once, in reference to an old German woman I worked for as a teenager.

I REMEMBER my suspicion and annoyance, fifteen years ago, when the term “Alzheimer’s disease” was first achieving currency. It seemed to me another instance of the medicalization of human experience, the latest entry in the ever-expanding nomenclature of victimhood. To my mother’s news about my old employer I replied: “What you describe sounds like the same old Erika, only quite a bit worse, and that’s not how Alzheimer’s is supposed to work, is it? I spend a few minutes every month fretting about ordinary mental illness being trendily misdiagnosed as Alzheimer’s.”

From my current vantage, where I spend a few minutes every month fretting about what a self-righteous thirty-year-old I was, I can see my reluctance to apply the term “Alzheimer’s” to my father as a way of protecting the specificity of Earl Franzen from the generality of a nameable condition. Conditions have symptoms; symptoms point to the organic basis of everything we are. They point to the brain as meat. And, where I ought to recognize that, yes, the brain is meat, I seem instead to maintain a blind spot across which I then interpolate stories that emphasize the more soul-like aspects of the self. Seeing my afflicted father as a set of organic symptoms would invite me to understand the healthy Earl Franzen (and the healthy me) in symptomatic terms as well—to reduce our beloved personalities to finite sets of neurochemical coordinates. Who wants a story of life like that?

Even now, I feel uneasy when I gather facts about Alzheimer’s. Reading, for example, David Shenk’s book The Forgetting: Alzheimer’s: Portrait of an Epidemic, I’m reminded that when my father got lost in his own neighborhood, or forgot to flush the toilet, he was exhibiting symptoms identical to those of millions of other afflicted people. There can be comfort in having company like this, but I’m sorry to see the personal significance drained from certain mistakes of my father’s, like his confusion of my mother with her mother, which struck me at the time as singular and orphic, and from which I gleaned all manner of important new insights into my parents’ marriage. My sense of private selfhood turns out to have been illusory.

Senile dementia has been around for as long as people have had the means of recording it. While the average human life span remained short and old age was a comparative rarity, senility was considered a natural by-product of aging—perhaps the result of sclerotic cerebral arteries. The young German neuropathologist Alois Alzheimer believed he was witnessing an entirely new variety of mental illness when, in 1901, he admitted to his clinic a fifty-one-year-old woman, Auguste D., who was suffering from bizarre mood swings and severe memory loss and who, in Alzheimer’s initial examination of her, gave problematic answers to his questions:

“What is your name?”

“Auguste.”

“Last name?”

“Auguste.”

“What is your husband’s name?”

“Auguste, I think.”

When Auguste D. died in an institution, four years later, Alzheimer availed himself of recent advances in microscopy and tissue-staining and was able to discern, in slides of her brain tissue, the striking dual pathology of her disease: countless sticky-looking globs of “plaque” and countless neurons engulfed by “tangles” of neuronal fibrils. Alzheimer’s findings greatly interested his patron Emil Kraepelin, then the dean of German psychiatry, who was engaged in a fierce scientific battle with Sigmund Freud and Freud’s psycholiterary theories of mental illness. To Kraepelin, Alzheimer’s plaques and tangles provided welcome clinical support for his contention that mental illness was fundamentally organic. In his Handbook of Psychiatry he dubbed Auguste D.’s condition Morbus Alzheimer.

For six decades after Alois Alzheimer’s autopsy of Auguste D., even as breakthroughs in disease prevention and treatment were adding fifteen years to life expectancy in developed nations, Alzheimer’s continued to be viewed as a medical rarity à la Huntington’s disease. David Shenk tells the story of an American neuropathologist named Meta Naumann who, in the early fifties, autopsied the brains of 210 victims of senile dementia and found sclerotic arteries in few of them, plaques and tangles in the majority. Here was ironclad evidence that Alzheimer’s was far more common than anyone had guessed; but Naumann’s work appears to have persuaded no one. “They felt that Meta was talking nonsense,” her husband recalled.

The scientific community simply wasn’t ready to consider that senile dementia might be more than a natural consequence of aging. In the early fifties there was no self-conscious category of “seniors,” no explosion of Sun Belt retirement communities, no AARP, no Early Bird tradition at low-end restaurants; and scientific thinking reflected these social realities. Not until the seventies did conditions become ripe for a reinterpretation of senile dementia. By then, as Shenk says, “so many people were living so long that senility didn’t feel so normal or acceptable anymore.” Congress passed the Research on Aging Act in 1974, and established the National Institute on Aging, for which funding soon mushroomed. By the end of the eighties, at the crest of my annoyance with the clinical term and its sudden ubiquity, Alzheimer’s had achieved the same social and medical standing as heart disease or cancer—and had the research funding levels to show for it.

What happened with Alzheimer’s in the seventies and eighties wasn’t simply a diagnostic paradigm shift. The number of new cases really is soaring. As fewer and fewer people drop dead of heart attacks or die of infections, more and more survive to become demented. Alzheimer’s patients in nursing homes live much longer than other patients, at a cost of at least forty thousand dollars annually per patient; until they’re institutionalized, they increasingly derange the lives of family members charged with caring for them. Already, five million Americans have the disease, and the number could rise to fifteen million by 2050.

Because there’s so much money in chronic illness, drug companies are investing feverishly in proprietary Alzheimer’s research while publicly funded scientists file for patents on the side. But because the science of the disease remains cloudy (a functioning brain is not a lot more accessible than the center of the earth or the edge of the universe), nobody can be sure which avenues of research will lead to effective treatments. Overall, the feeling in the field seems to be that if you’re under fifty you can reasonably expect to be offered effective drugs for Alzheimer’s by the time you need them. Then again, twenty years ago, many cancer researchers were predicting a cure within twenty years.

David Shenk, who is comfortably under fifty, makes the case in The Forgetting that a cure for senile dementia might not be an entirely unmitigated blessing. He notes, for example, that one striking peculiarity of the disease is that its “sufferers” often suffer less and less as it progresses. Caring for an Alzheimer’s patient is gruelingly repetitious precisely because the patient himself has lost the cerebral equipment to experience anything as a repetition. Shenk quotes patients who speak of “something delicious in oblivion” and who report an enhancement of their sensory pleasures as they come to dwell in an eternal, pastless Now. If your short-term memory is shot, you don’t remember, when you stoop to smell a rose, that you’ve been stooping to smell the same rose all morning.

As the psychiatrist Barry Reisberg first observed twenty years ago, the decline of an Alzheimer’s patient mirrors in reverse the neurological development of a child. The earliest capacities a child develops—raising the head (at one to three months), smiling (two to four months), sitting up unassisted (six to ten months)—are the last capacities an Alzheimer’s patient loses. Brain development in a growing child is consolidated through a process called myelinization, wherein the axonal connections among neurons are gradually strengthened by sheathings of the fatty substance myelin. Apparently, since the last regions of the child’s brain to mature remain the least myelinated, they’re the regions most vulnerable to the insult of Alzheimer’s. The hippocampus, which processes short-term memories into long-term, is very slow to myelinize. This is why we’re unable to form permanent episodic memories before the age of three or four, and why the hippocampus is where the plaques and tangles of Alzheimer’s first appear. Hence the ghostly apparition of the middle-stage patient who continues to be able to walk and feed herself even as she remembers nothing from hour to hour. The inner child isn’t inner anymore. Neurologically speaking, we’re looking at a one-year-old.

Although Shenk tries valiantly to see a boon in the Alzheimer’s patient’s childish relief from responsibility and childlike focus on the Now, I’m mindful that becoming a baby again was the last thing my father wanted. The stories he told from his childhood in northern Minnesota were mainly (as befits a depressive’s recollections) horrible: brutal father, unfair mother, endless chores, backwoods poverty, family betrayals, hideous accidents. He told me more than once, after his retirement, that his greatest pleasure in life had been going to work as an adult in the company of other men who valued his abilities. My father was an intensely private person, and privacy for him had the connotation of keeping the shameful content of one’s interior life out of public sight. Could there have been a worse disease for him than Alzheimer’s? In its early stages, it worked to dissolve the personal connections that had saved him from the worst of his depressive isolation. In its later stages it robbed him of the sheathing of adulthood, the means to hide the child inside him. I wish he’d had a heart attack instead.

Still, shaky though Shenk’s arguments for the brighter side of Alzheimer’s may be, his core contention is harder to dismiss: senility is not merely an erasure of meaning but a source of meaning. For my mother, the losses of Alzheimer’s both amplified and reversed long-standing patterns in her marriage. My father had always refused to open himself to her, and now, increasingly, he couldn’t open himself. To my mother, he remained the same Earl Franzen napping in the den and failing to hear. She, paradoxically, was the one who slowly and surely lost her self, living with a man who mistook her for her mother, forgot every fact he’d ever known about her, and finally ceased to speak her name. He, who had always insisted on being the boss in the marriage, the maker of decisions, the adult protector of the childlike wife, now couldn’t help behaving like the child. Now the unseemly outbursts were his, not my mother’s. Now she ferried him around town the way she’d once ferried me and my brothers. Task by task, she took charge of their life. And so, although my father’s “long illness” was a crushing strain and disappointment to her, it was also an opportunity to grow slowly into an autonomy she’d never been allowed: to settle some very old scores.

As for me, once I accepted the scope of the disaster, the sheer duration of Alzheimer’s forced me into unexpectedly welcome closer contact with my mother. I learned, as I might not have otherwise, that I could seriously rely on my brothers and that they could rely on me. And, strangely, although I’d always prized my intelligence and sanity and self-consciousness, I found that watching my father lose all three made me less afraid of losing them myself. I became a little less afraid in general. A bad door opened, and I found I was able to walk through it.

THE DOOR in question was on the fourth floor of Barnes Hospital, in St. Louis. About six weeks after my wife and I had put my mother in touch with the social worker and gone back east, my oldest brother and my father’s doctors persuaded him to enter the hospital for testing. The idea was to get all the medications out of his bloodstream and see what we were dealing with underneath. My mother helped him check in and spent the afternoon settling him into his room. He was still his usual, semipresent self when she left for dinner, but that evening, at home, she began to get calls from the hospital, first from my father, who demanded that she come and remove him from “this hotel,” and then from nurses who reported that he’d become belligerent. When she returned to the hospital in the morning, she found him altogether gone—raving mad, profoundly disoriented.

I flew back to St. Louis a week later. My mother took me straight from the airport to the hospital. While she spoke to the nurses, I went to my father’s room and found him in bed, wide awake. I said hello. He made frantic shushing gestures and beckoned me to his pillow. I leaned over him and he asked me, in a husky whisper, to keep my voice down because “they” were “listening.” I asked him who “they” were. He couldn’t tell me, but his eyes rolled fearfully to scan the room, as if he’d lately seen “them” everywhere and were puzzled by “their” disappearance. When my mother appeared in the doorway, he confided to me, in an even lower whisper, “I think they’ve gotten to your mother.”

My memories of the week that followed are mainly a blur, punctuated by a couple of life-changing scenes. I went to the hospital every day and sat with my father for as many hours as I could stand. At no point did he string together two coherent sentences. The memory that appears to me most significant in hindsight is a very peculiar one. It’s lit by a dreamlike indoor twilight, it’s set in a hospital room whose orientation and cramped layout are unfamiliar from any of my other memories, and it returns to me now without any of the chronological markers that usually characterize my memories. I’m not sure it even dates from that first week I saw my father in the hospital. And yet I’m sure that I’m not remembering a dream. All memories, the neuroscientists say, are actually memories of memory, but usually they don’t feel that way. Here’s one that does. I remember remembering: my father in bed, my mother sitting beside it, me standing near the door. We’ve been having an anguished family conversation, possibly about where to move my father after his discharge from the hospital. It’s a conversation that my father, to the slight extent that he can follow it, is hating. Finally he cries out with passionate emphasis, as if he’s had enough of all the nonsense, “I have always loved your mother. Always.” And my mother buries her face in her hands and sobs.

This was the only time I ever heard my father say he loved her. I’m certain the memory is legitimate because the scene seemed to me immensely significant even at the time, and I then described it to my wife and brothers and incorporated it into the story I was telling myself about my parents. In later years, when my mother insisted that my father had never said he loved her, not even once, I asked if she remembered that time in the hospital. I repeated what he’d said, and she shook her head uncertainly. “Maybe,” she said. “Maybe he did. I don’t remember that.”

My brothers and I took turns going to St. Louis every few months. My father never failed to recognize me as someone he was happy to see. His life in a nursing home appeared to be an endless troubled dream populated by figments from his past and by his deformed and brain-damaged fellow inmates; his nurses were less like actors in the dream than like unwelcome intruders on it. Unlike many of the female inmates, who at one moment were wailing like babies and at the next moment glowing with pleasure while someone fed them ice cream, I never saw my father cry, and the pleasure he took in ice cream never ceased to look like an adult’s. He gave me significant nods and wistful smiles as he confided to me fragments of nonsense to which I nodded as if I understood. His most consistently near-coherent theme was his wish to be removed from “this hotel” and his inability to understand why he couldn’t live in a little apartment and let my mother take care of him.

For Thanksgiving that year, my mother and my wife and I checked him out of the nursing home and brought him home with a wheelchair in my Volvo station wagon. He hadn’t been in the house since he’d last been living there, ten months earlier. If my mother had been hoping for a gratifying show of pleasure from him, she was disappointed; by then, a change of venue no more impressed my father than it does a one-year-old. We sat by the fireplace and, out of unthinking, wretched habit, took pictures of a man who, if he knew nothing else, seemed full of unhappy knowledge of how dismal a subject for photographs he was. The images are awful to me now: my father listing in his wheelchair like an unstrung marionette, eyes mad and staring, mouth sagging, glasses smeared with strobe light and nearly falling off his nose; my mother’s face a mask of reasonably well-contained despair; and my wife and I flashing grotesquely strained smiles as we reach to touch my father. At the dinner table my mother spread a bath towel over my father and cut his turkey into little bites. She kept asking him if he was happy to be having Thanksgiving dinner at home. He responded with silence, shifting eyes, sometimes a faint shrug. My brothers called to wish him a happy holiday; and here, out of the blue, he mustered a smile and a hearty voice, he was able to answer simple questions, he thanked them both for calling.

This much of the evening was typically Alzheimer’s. Because children learn social skills very early, a capacity for gestures of courtesy and phrases of vague graciousness survives in many Alzheimer’s patients long after their memories are shot. It wasn’t so remarkable that my father was able to handle (sort of) my brothers’ holiday calls. But consider what happened next, after dinner, outside the nursing home. While my wife ran inside for a geri chair, my father sat beside me and studied the institutional portal that he was about to reenter. “Better not to leave,” he told me in a clear, strong voice, “than to have to come back.” This was not a vague phrase; it pertained directly to the situation at hand, and it strongly suggested an awareness of his larger plight and his connection to the past and future. He was requesting that he be spared the pain of being dragged back toward consciousness and memory. And, sure enough, on the morning after Thanksgiving, and for the remainder of our visit, he was as crazy as I ever saw him, his words a hash of random syllables, his body a big flail of agitation.