The Forgetting Page 8

  Four centuries later, Cordell Annesleys could be found in every city of the world. “My sister-in-law visited for a few days while my mother-in-law was in the hospital,” reported Sally D., from Logansport, Indiana. “When I went over to mow the lawn, I found she had rearranged the china cabinet. A lot of stuff was not there. I suppose we should take an inventory of everything in the house, so when the time comes, we can see what has walked away during the interim. We should not have to do this.”

  Longer lives and the proliferation of Alzheimer’s were colliding with yet another modern circumstance—the scattering of families. As if there were not enough layers of sadness already, the disease too often also became a wedge, driving already fractured families further apart. “Things are going from bad to worse here,” said Jean B. from Lexington, Massachusetts. “I just got a letter from my sister’s law firm about the estate and having to inventory everything in this house. First, they said everything here is Dad’s, conveniently ignoring the fact that Ashley and I brought things here and have acquired things subsequently. It also said I was ‘staying with’ Dad—which has a far different connotation than ‘taking care of’ Dad—like I am here mooching off him because of some deficiency in my own life.”

  Though they lived a thousand miles apart, Sally and Jean were able to find and support each other, and hundreds of other caregivers scattered throughout the world, via the Alzheimer List, on the Internet at http://www.adrc.wustl.edu/alzheimer. A virtual support group created by the Alzheimer’s Disease Research Center at Washington University in St. Louis in 1994, the list helped more than a thousand caregivers, social workers, clinicians, and researchers form a community through E-mail dispatches. Discussions ranged from whether/how to tell already demented loved ones about their disease, to appropriate dosage levels of medications, to which air fresheners best remove the smell of human feces from a room. For pixels on a screen, the talk was surprisingly warm and intimate.

  13 Aug 2000

  From: Carla Flaherty

  Subject: Visiting Dad at Primrose

  Thank you Kathy, Geri, Michelle, Eveline, and Connie for your responses to my sad visits with Dad. You are all, as always, a great help and gave me good thoughts—which made Friday’s visit much easier on me.

  Yes—two of you mentioned this—what I REALLY want is for Dad to come back for a minute and say, “Hey, you did good, kiddo. I know you didn’t want this, and I didn’t either, but you did the best you could and I’m satisfied with it.” Getting clear that I wanted the impossible made it easier. So I will tell myself these things instead. And pick pears for Dad, knowing I HAVE done the best I could.

  Luck & hope,

  Carla

  Perhaps the Internet was the perfect medium for Alzheimer’s caregivers: millions of them sprinkled across the earth, stuck in their homes taking care of their loved ones, rarely able to break away. Then, with little warning, a free moment popped up in the early afternoon or the middle of the night. Down the stairs in a cluttered basement office, a screen and keyboard provided the connection to countless others with similar concerns.

  At 2:30 A.M., Diane wrote in from San Diego with a question about her mother’s sleeplessness. At 9:00 A.M., a response came from Jerry in Spokane. He patiently recalled his own experience with “sundowning,” passing on the array of tactics and tools used, and assuring her that the night restlessness would eventually pass.

  Nina from Adrian, Michigan, needed some advice on how to handle her mother’s stubborn refusal to allow a nurse into the home. Geri from Minneapolis piped in: She had been through exactly the same thing with her husband, and explained the legal Catch-22: If Nina’s mother was already so impaired that she couldn’t take care of herself, she was probably also too impaired to give Nina legal authority to make key decisions on her behalf If so, Nina would have to ask a judge to declare her mother incompetent (the modern equivalent of the Elizabethan “lunatic”).

  Focused exchanges like this continued twenty-four hours a day, in a never-ending swap of empathy, camaraderie, and advice. After several years and some 14 million words, the group had covered a lot of ground: room monitors, mini-strokes, drug trials, spending sprees, wandering, day care, power of attorney, stages of grieving, assisted living, door knob covers, incontinence, corporate insensitivity, family reunions, caregiver’s depression, sadness, terror, relief, betrayal, even attempted murder. Hanging over all the painful details like a wide porch roof was a rich poignancy, a sense that these family members had been tested and dredged for all their depth of feeling. Here were people in the throes of a slow, horrible loss, aggravating and draining, and yet many seemed to be experiencing the fullness of life in a way that made me as a distant observer feel perversely envious. No one in this group seemed dead to the world, stuck in old habits, numb and sleepwalking through daily chores. These people were buzzing with life.

  Following their conversations, I realized that while medical science gives us many tools for staying alive, it cannot help us with the art of living—or dying. Life, in its precious transience, is something we can only define on our own terms. With Alzheimer’s disease, the caregiver’s challenge is to escape the medical confines of disease and to assemble a new humanity in the loss.

  One realization that popped up over and over again on the List, for example, was the importance of not forcing “reality” onto someone living with Alzheimer’s. “During the early years,” recalled Rolfe S. from Fairfield, Vermont, “I tried to have Phyllis live life the … ‘normal’ … way—my way or our pre-Alzheimer’s way of life. It did not work. When I corrected her or tried to ‘normalize’ her she became agitated, which in turn agitated me and made life hell. She was unhappy. I was unhappy.

  “I finally realized that whatever I said or did to correct her made no difference. I realized that life would be easier if I let her do what she wanted (within safety limits). I no longer scolded her but thanked her for bringing the frying pan into the bathroom. After that, life changed very much for the good. She is happy but still declining. I am happy and have adjusted to my new ‘life.’ It will change some day but if it doesn’t, so be it. Enjoy life as best you can.”

  Over the years, List participants had discussed it all, it seemed. But there were still occasional surprises. In late February 1999, an extraordinary dispatch came in from Morris Friedell, a quiet, bushy-bearded, tweed-coated sociologist from Southern California.

  “I first subscribed to this list because of my mother’s probable Alzheimer’s,” Morris wrote. “A neurologist and a neuropsychologist told me my own forgetfulness was probably benign aging plus Caregiver’s Dementia. Unfortunately, another neurologist, with the help of an MRI, a PET, and a qEEG, diagnosed me as having Alzheimer’s myself.”

  A patient—on the List? This was something new. The community was well-versed in talking about Alzheimer’s sufferers, not to them.

  And that was only half the surprise.

  Morris had not come to kvetch. He was no helpless Lear, flailing about, but part of the new class of Alzheimer’s sufferers, diagnosed so early as to still be able to speak for themselves, to eloquently describe their experience, and to champion their rights. More than that, even, Morris wanted to talk about rehabilitation.

  Not long before, this fifty-nine-year-old college professor had been planning his early retirement, hoping to read and write books free from the commitments of teaching. Then memory troubles intervened. During his final year with students, he began to have trouble remembering what his students said in class. Later, he couldn’t remember a conversation he’d just had with his mother. At the neuropsychologist’s office, he couldn’t tell the doctor about a movie he’d seen just the night before. They ran the usual tests. He got a perfect score on the MMSE. On the brain scans, he didn’t fare so well.

  The diagnosis hit Morris like an ice bath. At a decidedly un-elderly age, his “mid-life” was suddenly very late-life. He was now on a slow but certain trajectory toward forgetting and death. In the tur
moil, his on-and-off relationship with a girlfriend fizzled out. He was home alone with his books and his dreary thoughts.

  At the University of California at Santa Barbara, Morris taught a course called “Human Dignity” and had written his own book on the subject. He crafted a career out of interpreting authors like Viktor Frankl, Martin Buber, and Elie Wiesel. In a superstitious way, Morris hoped that teaching about human suffering might give him a personal bye. “I now see,” Morris wrote after his diagnosis, “I thought that teaching this stuff meant, magically, that I’d die by being run over by a truck and never have to face a dramatic challenge to my own human dignity. Oh, well.”

  His teaching did not shield him from personal tragedy, but it did, evidently, prepare him for it. “For a couple of weeks after the MRI I was struggling with clinical depression. Fortunately, the advice helpful to cancer victims and prisoners-of-war worked for me: Control what you can control, communicate—express your feelings, look death in the face, find meaningful life-tasks and do them, search out and challenge dysfunctional negative thoughts.”

  Frankl’s Man’s Search for Meaning was central to Morris’s work. Before being taken prisoner by the Nazis, Frankl wrote extensively about the human ability to retain dignity under extreme conditions. Then, in the concentration camp, he faced the ultimate personal test of his own ideas. Now, after years of studying him, Morris was echoing Frankl’s life. In the freezing, foodless, lice-ridden barracks of Auschwitz, Frankl survived and maintained his dignity. Morris wondered if he could do the same as he was thrown into the dark cave of forgetting.

  Just the act of wondering got him off to a good start. What pulled Morris out of his depression was his ability, intellectually, to see how he could retain his essential humanity even as his disease inevitably progressed. “I … meditate on an essential core of human connection I can cleave to,” he wrote on his Internet home page. “Buddhism identifies three basic interpersonal emotions that even young children enjoy but have great spiritual value. One is compassion. This is the core of human feeling.

  “Elie Wiesel wrote, ‘You suffer, therefore I am.’ It is gratifying to read about the response to distress of the eighteen-to twenty-four-month-old child: ‘patting the head, fetching a toy, offering verbal expressions of sympathy, finding an adult to help, and so forth.’ When I deteriorate to this level, I too can keep my compassion, and hence my humanity.”

  Morris did soon regain his emotional balance, and began to forge a new life for himself. He turned back to his books, and to the outside world through his computer, found a new community of people who shared a direct interest in his disease, and bravely opened up a spigot to let his feelings pour out into open view. “There is pain in forgetfulness,” he wrote, “but sometimes there is something delicious in oblivion. Recently I spent some time with the three-year-old grandson of a friend of mine. He has Down’s syndrome. I could enjoy sharing with him his friendly little non-verbal world in a way that I never could have before. Not only was my aphasia not a problem—it was like the absence of street noise so I could better savor the music.”

  Something delicious in oblivion. Could Morris help bridge the widening chasm between the optimistic world of science and the despairing world of sufferers? He knew full well that, as a disease, Alzheimer’s is degenerative and incurable. He chose instead to face it as a human condition. In his own forgetting, Morris wanted to find meaning, and hope.

  PART II

  MIDDLE STAGE

  Chapter 7

  FUMBLING FOR THE NAME OF MY WIFE

  On November 12, 1879, two years after he never quite heard, never quite understood, and then entirely forgot Mark Twain’s tale of the three famous tramps, Ralph Waldo Emerson, age seventy-six, gave a lecture at the home of Harvard Divinity School professor C. C. Everett. Though Emerson’s dementia had steadily progressed over the decade, and he had not written an original lecture in four years, he still occasionally read aloud from old works.

  On this particular night, the aging Transcendentalist made a sharply ironic choice of material. Of all things, he read from his twenty-two-year-old essay, “Memory.” “Without it,” Emerson intoned, “all life and thought were an unrelated succession. As gravity holds matter from flying off into space, so memory gives stability to knowledge; it is the cohesion which keeps things from falling into a lump or flowing in wave.…

  “Memory performs the impossible for man by the strength of his divine arms; holds together past and present, beholding both, existing in both, abides in the flowing, and gives continuity and dignity to human life. It holds us to our family, to our friends. Hereby a home is possible; hereby only a new fact has value.”

  How poignant, and how awful, that as Emerson read aloud these evocative words, his own memory was broken. Much like H.M., he could form no new memories at all. His life from moment to moment was an unrelated succession. There was no more continuity except that provided for him by friends and family. At this particular reading, his daughter and caregiver Ellen stood by as a sort of Seeing Eye memory guide. He continually looked up at her to be sure he did not repeat words or sentences.

  This was not just an exercise in caution. Without her help, Emerson had recently lost his place many times in lectures, skipped or repeated sentences, and even reread entire pages over again without noticing. In at least one public reading, he had stopped suddenly in the middle of his material and stood silently at the lectern, oblivious. “His words are either not all written or not well remembered,” ran a typically disappointed review of these years from the New Brunswick Daily Times. “… He shows a want of fluency in language, and frequently descends to a tone even fainter than the conversational, and a manner unpleasantly hesitant.”

  We will never know for sure, of course, whether Emerson was beset with what we now call “Alzheimer’s disease.” No one bothered to look at the folds of his brain after he died, and if they had they would not have been able to discern anything as detailed as plaques and tangles. Alois Alzheimer was, at the time of Emerson’s decline, still a raucous Bavarian youth. Franz Nissl had not yet invented his important tissue stains. Emil Kraepelin had not proposed his radical ideas about autotoxins and organic brain diseases.

  We do know from the voluminous record of the details of his life that Emerson had a slow, progressive dementia that in every way appears consistent with the course of typical Alzheimer’s disease (albeit on the slower side of the average progression). His illness crept in over time and engendered a slow, almost imperceptible decline. For several years after the trouble first appeared, he was able to hold on to his essential self and treat the memory impairments as disabilities to be worked around, not necessarily any more severe than a broken leg requiring crutches or a wheelchair.

  But by the mid-1870s, according to the description of biographer Phillips Russell, Emerson (in his early seventies) had passed into what we now refer to loosely as the middle stages of the disease: “He lived in an internal quietude not to be shattered even by the loudest noises. Outlines and edges were no longer perceptible, and he dwelt in a dreamlike mist which hid from his vision everything that was not intimate and immediately recognizable.…

  “His love for reading continued, but words ceased to have any intrinsic meaning, and books were sought only for their general tone or flavor. Personality disappeared from all names, and when he sometimes took down from his shelves his own books they possessed a novelty for him exactly like that he would have found in the works of an unknown author. One day when his daughter entered his study, she found him reading very intently in one of his own books. His face revealed his pleasure, and looking up at her, he exclaimed, ‘Why, these things are really very good.’”

  Because his progression was so slow, Emerson was aware of his deficits for many years. For all of the imperceptible, incremental declines over the months and years in Alzheimer’s, one meaningful way to view the disease is as a two-stage disorder: the awareness stage and the postawareness stage. Regardless of when (
or whether) the actual diagnosis takes place, the sufferer is usually aware for several years that something is not quite right. He knows that he is forgetting. Then, at a certain point, usually years into the disease, he no longer knows.

  For a long while, Emerson certainly knew. Even before others perceived any symptoms at all, in fact, he shocked his friends and family in 1866 (age sixty-three) with a very personal announcement of his imminent decline in the poem “Terminus.”

  TERMINUS

  It is time to be old,

  To take in sail:—

  The god of bounds,

  Who sets to seas a shore,

  Come to me in his fatal rounds,

  And said: “No more!

  No farther shoot

  Thy broad ambitious branches, and thy root.

  Fancy departs: no more invent,

  Contract thy firmament

  To compass of a tent.

  There’s not enough for this and that,

  Make thy option which of two;

  Economize the failing river,

  Not the less revere the Giver,

  Leave the many and hold the few.

  Timely wise accept the terms,

  Soften the fall with wary foot;

  A little while

  Still plan and smile,

  And—fault of novel germs—

  Mature the Unfallen fruit.…”

  As the bird trims her to the gale,

  I trim myself to the storm of time,

  I man the rudder, reef the sail,

  Obey the voice at eve obeyed at prime:

  “Lowly faithful, banish fear,