My father had Alzheimer's. He was diagnosed in 1992, after my mother and I began to get worried about his failing memory, increasing loss for words, and decreasing ability to concentrate. It took a few years for the doctors to make a final diagnosis because Alzheimer's Disease then could only be positively determined after death by an autopsy; while the patient was still alive, a diagnosis of Alzheimer's could only be made by eliminating all other possible causes for the symptoms. We were pretty sure what was happening, being ignorant of any other reasons for Dad's impairments, but confirmation was slow in coming. At the same time, if the verdict was what we feared, we knew that there’d be no cure and that Dad's condition would only get worse.
No one really knows what Alzheimer's is like without seeing it first hand. Knowing as much, I guess, as anyone who’d paid attention to general news reports, we thought we were prepared for what was coming. We were wrong. Alzheimer's affects not only the afflicted person, but everyone around him. The closer you are to someone with the disease, the more profoundly you’re touched. We were not prepared. I was not prepared.
Intellectually, I knew what Alzheimer's did. I knew my father would slowly lose all his mental faculties. I knew that eventually he’d be unable to care for himself. I knew about the incontinence. Intellectually, I knew. Viscerally, I had no idea.
My father was a man for whom the designation "intellectual" was coined. (On the wall of his office, Dad had two signs he had the company’s letterer make for him. Both were mock-Latin translations of contemporary quotations he liked. One read Illegitimi Non Carborundum: “Don’t Let the Bastards Grind You Down.” But the other was the one I thought was most appropriate to him: Via Ovicipitum Dura Est. It was a line attributed to former Illinois Governor Adlai Stevenson, the Democratic presidential candidate in 1952 and ’56: “The Way of the Egghead Is Hard.” I’ve remembered those two little cardboard signs for about half a century.) Dad experienced the world through his mind. His work had been performed with his mind: logic was his province; words were his tools. (My mother is the emotional partner. I, unfortunately, inherited bits of both, which gives me a sort of emotional MPD. It was useful as an actor, though.) His pleasures were of the mind: reading, art (they owned a small gallery for several years), film (he was an executive in a small movie theater corporation before joining the Foreign Service as a cultural diplomat in the 1960s), theater, and travel. As a child, I knew that Dad could never simply answer a question. He lectured. Discoursed, really. History and politics were his special fields; trips through France, Spain, or Germany with my parents when I was a teenager were experiences in living history. He knew not only facts and dates, but the rationales and causes of events. Most remarkably, he understood the connections—not only between contemporaneous incidents but between the distant incident and current events.
When my brother and I were little, we often used to sit around the dinner table and Dad would lead us, amidst peals of laughter, in the continuing invention of a fantasy history of our ancestors, the royal family of the Grand Duchy of Corpakernia. Somewhere in a mythical Eastern Europe was a monarchy headed by Sophie the Scratchy (“She was an itchy bitch,” my dad would always note)—and there was a made-up language that went along with the history, too. As director of a USIS Amerika Haus, little cultural propaganda outlets in Germany in the '60s, one assignment was a particular pleasure. He was giving a series of lectures on the American Civil War—a special interest of Dad's—to German students. It was our private joke that during the series he debated whether he should let the North or the South win in the end.
When I was in college and my dad came for a visit, he’d regale my fraternity brothers with stories of the old days—the late 1930s—at the school. Dad was an alumnus of both the same college to which I went and the frat to which I belonged. He and Mom would come for dinner or perhaps afterwards and when the brothers gathered in the Chapter Room for a smoke and maybe a drink, he’d light his pipe and quietly start to reminisce. Gradually, Mom and I would be alone on a couch while everyone else was gathered around Dad, listening—no one else really talked, except maybe to ask a question which would start Dad off on another anecdote—as he would recount the unrecorded history of the pre-war years and the humorous and embarrassing tales of our predecessors. I was never sure whether to be mad at him or proud, but after his first trip to the campus, whenever the brothers heard he was coming for a visit, they wanted to be sure he’d stop in. As if he could have resisted!
When I was in grad school in the early ‘80s, one of my profs was Brooks McNamara, an expert in American popular entertainment. When Brooks learned that Dad had worked in the company that had owned the Howard and Lincoln Theatres in Washington, two important venues on the Chitlin’ Circuit, he wanted my dad to record an oral history of the African-American vaudeville days after World War II. My father immediately agreed and I have no doubt that they would have been wonderful tapes. Dad had been a natural raconteur, especially when it came to history, and I’ve always regretted that we—I—didn't follow up on that fast enough. A few years later, all those memories were lost to the Alzheimer’s.
Working with his hands was not a strong talent. Dad used to joke that after changing a light bulb, he’d have parts left over. Though he’d buy every gadget and tool that came out, and he delighted in browsing in a hardware store, he never had a home shop, never built a piece of furniture, never worked on his car. Dad lived through his intellect. (He did have visceral pleasures, too: wine—he was a true oenophile—and food among them. He also played golf well and tennis passably—and continued to do both until the Alzheimer’s made it impossible. When my family lived in Germany, we used to take skiing vacations and Dad, my brother, and I would spend all day on the slopes while Mom enjoyed the après-ski activities.)
By 1995, that was all gone for him. I don't think he had any notion of what was happening to him anymore, though of course, I couldn't be certain. He no longer responded to anything, but no one knew whether nothing was getting in, or whether something was getting in but he just couldn't express a reaction. It was almost impossible to know what he understood anymore. A year earlier, however, he clearly did know.
My family was on a visit to Dad's sister and brother-in-law at their vacation home on Martha’s Vineyard. One afternoon, my father and my Uncle Herbert took a walk along the bluff that was their backyard. Herb asked Dad, who’d recently undergone some testing at NIH, if the results held any promise. "I hope so," Herb reported Dad saying; "I sure can't go on like this." A year later, my father probably couldn’t formulate such a thought, and certainly couldn’t communicate it.
My father’s condition got progressively worse. Mother tried to cope at home, taking care of him herself at first as his memory began to fail. She brought in home health aids during the day when Dad got too difficult for her to manage on her own. He became obstreperous and even inadvertently violent. My mom’s a tiny lady and although my dad’s not a big man, he was bigger than she and when she helped him to bed, the bath, the toilet, or the dinner table, he sometimes didn’t understand what was happening and fought her. This is common for Alzheimer’s sufferers—dementia is often accompanied by paranoia—but it became impossible for Mom to deal with it by herself. Dad also wandered off sometimes in the apartment building where they lived, roaming the halls of the rather large building. Because he’d doze off during the day, he often didn’t sleep through the night, keeping Mom up. Once or twice, he slipped in the bathroom and Mom, as small as she is, couldn’t get him up when he couldn’t or wouldn’t help her.
My folks and I had always spoken by phone Sunday mornings, but when Dad got so sick that my mother was under a lot of stress, I started calling mid-week, too, so I could check up on her and to provide some small distraction. I also started to plan to move to Washington, fearing that Dad’s deterioration would sink my mother as well. Once when I was in Washington on an extended visit—I’d begun going down as often as I could and staying as long as I could to try to relieve Mom of the burden Dad’s illness was imposing on her—when he had a real crisis. He fell in the bathroom during the night and Mom couldn’t get him up without my help. Dad was obviously completely disoriented and agitated now, far beyond just a little lost. It was evident Mom couldn’t care for him at home. We took him to his doctor the next morning and the doctor immediately admitted him to a psych ward at a District hospital for evaluation and emergency care. (Alzheimer’s isn’t really a psychiatric illness—it’s a medical condition with a physiological cause—but psychiatric wards are often the only ones equipped to handle patients with dementia, especially on an emergency basis.) While Dad was being examined and evaluated, Mom and I saw a specialist in finding long-term care for patients like Dad and making all the necessary arrangements—sort of the medical-care equivalent of a travel agent. It was apparent now that my father had to go into a nursing home; if not, Mom would end up as demented as he. My mother resisted briefly, but the need was so clear by now that we agreed to follow the expert’s recommendation. We got Dad a bed in a nursing home for the next day. He was eventually set up in a home in suburban Rockville, Maryland.
I abandoned my plans to move to Washington since it was no longer necessary for me to be instantly at hand. I continued to travel down often, lugging my work with me and setting up on a card table in my mother’s bedroom. (When Dad moved into the nursing facility, Mom took a smaller apartment in the same building. She lost several extra rooms, including the spare bedroom that was mine when I visited and the study that had served as Dad’s office.) Mom visited Dad every day, usually from lunch through dinner so she could help feed him. (Alzheimer’s sufferers eventually forget how to chew and swallow and put themselves in danger of choking on chunks of food or drowning from liquids inhaled instead of swallowed. They have to be fed carefully in a specially prescribed regimen to help prevent these accidents from happening.) When I was in town, we spent most of the day with Dad; I’d bring Thespis, my little dog, to the home with me—he was very welcome by both the staff and the other patients—and we’d sit on the screened porch or take a walk through the suburban neighborhood nearby.
Dad began having frequent bouts of pneumonia and had to be hospitalized in Gaithersburg, a little further out in exurban Maryland, several times in the last year at the home. This was aspiration pneumonia, which results from inhaling food or liquids (beverages or even the patient’s own fluids) into the lungs. The doctors said it was common for people with Alzheimer's, and that it would continue until they can't stop it. Each case would get worse, they said, and eventually they wouldn't be able to treat it. The best the hospital could do was get Dad's temperature down and his lungs cleared so he didn't cough up so much phlegm, then he was returned to the nursing home. A few days or a week later, he’d have to go back again. He had to be watched to see that he didn’t inhale his own fluids—there was a vacuum tube by his bed—but the attendants weren’t always so vigilant, and he could still aspirate his own mucus, particularly in his sleep.
Dad was in the hospital most of the time I was in Washington over the 1995-96 holidays, having gone in the day before I drove down and then released for about three days between Christmas and New Years before he was back again. There was a blizzard in Washington over the holidays and I got stuck in town because of the snow; my mom and I couldn't even get out of her apartment building for three days because the main road in front hadn't been cleared. Dad was discharged the day after I returned to New York, but went back in again on the evening of 21 January. He had a temperature of 109 and it looked like it might be the last time. Mom even began making final arrangements, but he seemed to come out of it again. (The hospital was under instructions to do nothing but make Dad comfortable and relieve his pain, but he seemed to be fighting to live—though only God knows why in his condition.) Nevertheless, every time the phone rang, I expected it to be my mother calling to tell me to come back. She wouldn't let me come down while Dad seemed to be recovering. She didn't want me to "interrupt my work." Meanwhile, she went to the hospital every day and sat with him.
After 20 December ‘95, Dad didn’t stay out of the hospital for more than a week before going back in. At the end of January ‘96, Dad went back to the hospital with pneumonia again, this time a severe case and Mom knew it would be his last unless he were treated with extraordinary measures. We decided that would be wrong and Dad was moved to a hospice in town on Thursday, 1 February, so he could be made comfortable and pain-free. His last bout of pneumonia lasted two weeks, the last five days of which he spent in the Washington hospice, essentially asleep the whole time. I had gone to Washington the day Dad went into the hospice and my mother, Thespis, and I stayed with him all day long each day. He died peacefully of pneumonia at 2 a.m. on Tuesday, the 6th—one month to the day after my parents 50th anniversary.
According to Dad’s wishes, there was no funeral, but we held a memorial service on the following Wednesday. I stayed in Washington with my mother while family and friends came to mourn and offer condolences—a sort of very reformed form of shiva. Mom drove back to New York with me on Tuesday, 13 February, and she stayed for a day, rushing back under the threat of another blizzard. It was the first time in the year-and-a-half since Dad went to the nursing home that she could leave Washington and (were it not for the threatening snowstorm) not have to worry about hurrying back or feeling guilty that she wasn’t spending time with Dad every day. For a year-and-a-half, Mom hadn't had much time to do anything but visit with Dad and see to his care. And, of course, neither of us had gone anywhere except when I'd gone to Washington to stay with her or she'd come to New York for a day or so to visit me or to New Jersey for some family event or other.
It wasn't so much my father’s death that was traumatic; it was his dying. Alzheimer's is certainly one of the most horrible ways to go—for everyone involved. Long before the end, Dad had stopped recognizing any of us. The disease had left him no longer the dad I’d loved and the man I’d always found interesting for 49 years. I knew my father was dying long before he passed away, and I figured it'd be a relief, considering the devastation of Alzheimer's—but it knocked me for a loop even so. You're never really prepared, apparently, even when you think you should be. I still miss him every day, even 14 years after he died. A week doesn’t go by that I don’t think of a line he used to say or an expression he used to use. Just the things he lost even before he finally passed from my life.
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