My father's last lesson: What I learned as my dad grappled with Alzheimer's

With nearly 7 million Americans diagnosed with Alzheimer’s disease, there has been a lot of discussion about the best ways to serve elderly parents suffering from the condition. But my family’s experiences have made me think long and hard about what will happen to me when and if I find myself living as my father did – until recently.

For the first 85 years of his life, my father had a serious case of joie de vivre. He loved making sunny affirmations like “Clean livin’!” every time he nabbed a parking spot, and stood by the motto “There’s no such thing as bad candy.” His spirit animal was a chimp.

My dad’s tales of learning to fly on the sly, and the winking way he teased my no-nonsense mother — he never did buy that luxury Catamaran he claimed was in storage — taught me to be on the lookout for fun in everyday experiences, and once I’d found it, to spread it around. My dad showed me how I wanted to live.

Then, at about 86, he started repeating the same antic stories, over and over. He forgot his home security code, and the man who’d taught me how to drive had an unprecedented series of fender benders. He had less fun, and more frustration. My mother took him to a neuropsychiatrist for testing, and the results indicated that he was in the early stages of Alzheimer’s.

His journey from diagnosis to death this past December, from missing a birthday to forgetting how to use a straw, took five painful years. But as his illness advanced, he taught me another important lesson: How I don’t want to die.

From happy warrior to hapless prisoner

I felt helpless witnessing my dad’s devolution from happy warrior to hapless prisoner, trapped in a failing body that kept him alive well after his mind could find pleasure in anything. But watching his long goodbye also filled me with dread: Alzheimer’s runs in my father’s family, and the risk of developing it increases with age. I’m 67, so his recent past could be my not-that-distant future.

While some people with Alzheimer’s seem to be, in the words of a geriatrician friend of mine, “pleasantly demented,” generally going with the flow and enjoying simple pleasures like visits from grandchildren, for many others, confusion leads to irritability and acting out — not just in unfamiliar circumstances or when their hygiene is being attended to, but when they’re trying to perform routine activities like getting ready to leave the house, or finding items on the drugstore shelf. My father was one of those.

A Harvard Law grad and the former CEO of a privately-held company, he’d spent his career as a self-starter always searching for new projects. As his executive function diminished and he grew increasingly dependent on his helpmate of 65 years for everything from shaving to plumping his pillows at night, his helplessness exacerbated his lifelong tendency toward impatience.

He became terrified when, on trips to Whole Foods and CVS, my mother drifted out of his sightlines for a moment. Crowds agitated him, and attempts at walks in the park and the art museum fizzled before they even started. He fought any change in routine — sometimes physically, as when my mother tried to hire a burly health care aide to help him shower.

Perhaps this combativeness was due to changes in his brain chemistry, or because his neurological deficits made it hard for him to recognize that he was impaired. Researchers speculate that the degraded memories of some people with AD make it hard for them to update their self-image, so their sense of their own capabilities stays frozen in time.

For whatever reason, his restlessness worsened along with his frailty, and a year before he died, he did a face-plant in my parents’ carpeted bedroom and broke his collarbone. The fall precipitated a hospital stay and, because my dad could no longer stand unassisted, a subsequent move to memory care.

My mother chose a facility with a home-like setup where residents are grouped in separate units within a suburban condo development. It looked reassuringly familiar from the outside, but visitors who stepped through the front door into the living room entered another world. A dozen well-tended seniors milled aimlessly, stared vacantly at the Hallmark movie on the giant TV screen, cuddled stuffed animals or played bingo with visitors. Cries of “I want to go home!” were deflected by sympathetic but overworked staffers who knew that their default response, “Your ride’s not till later,” would be forgotten within minutes. No one, including my dad, thought of the place as home. It was a way station, and it was depressing to be there.

Over the following months, my dad started gazing into the distance, banging his fist on his thighs and angrily repeating the name of the street where he grew up, as if trying to return to the place where he’d left his true identity. Medicating him to be simultaneously calm and conscious was challenging, because chemical cocktails strong enough to soothe him tended to put him to sleep.

My mother sold her house, moved to a lovely independent living community and settled my dad into the memory care unit down the hall. But the extra space, better food and manicured gardens outside his window didn’t lift his mood. If he wasn’t asleep, he was scowling and muttering incoherently, a garbled protest against his fate.

If he had known that the end of his life was going to be like this, would he have wanted his family to medicate him with sedatives and antipsychotics to the fullest extent, even if it hastened his death? Would he have instructed us to withhold all medical interventions after, say, he could no longer feed himself? Could he have told us that turning his head away from spoon feedings would mean he wanted nourishment to stop, and palliative care to begin? There’s no way of knowing. To be honored, he would have had to have made his wishes known when he was mentally competent.

Advance directives like living wills are essential

My dad did leave a living will — a majority of Americans don’t give their loved ones any documented guidance about their end-of-life wishes — requesting that he not be intubated, put on a ventilator or resuscitated after receiving a terminal diagnosis of six months or less to live. These stipulations made sense, but they only apply to seriously ill people in their final days. Alzheimer’s disease is degenerative and irreversible, yet on average, takes three to eight years — even 20 — to kill its victims.

For most people with AD, some of those years will hold moments of joy — being present at school graduations, weddings, births, retirements. Savoring a melting sunset or a creamy panna cotta is nothing to sneer at. But having a measure of control after dementia takes hold requires planning. (Many states now have Medical Aid in Dying Laws, but physician-assisted death is only an option for the terminally ill who are of sound mind when they make the decision.)

I intend to tell my loved ones what I want face to face, on video and in a written advance directive I’ll download from my state government website or an advocacy group such as Compassion & Choices. Many of these forms present hypothetical scenarios users might not have thought of, such as whether they would want to take part in clinical trials or if, under certain circumstances, the directives should be revoked.

My father was a lifelong subscriber to the local symphony, and when he had all his faculties, had often said that life was worth living “as long as I can listen to opera.” In his final months, though, it was apparent that having “The Magic Flute” playing on the radio and listening to it, which requires an attentiveness he no longer had, are two different things.

I used to be in my father’s camp — believing that any sensual pleasure I could derive from hearing rock-and-roll or eating gelato made living worthwhile. But he showed me how those moments can’t compensate for the rest of a day’s 24 hours when they’re full of distress. I’m sorry he suffered, but I’m grateful for the lesson.

Cindy Schweich Handler is retired editor of Montclair Magazine.

This article originally appeared on NorthJersey.com: My father's last lesson: What I learned from his Alzheimer's