'My Father's Brain' memoir explores the effect of Alzheimer's disease

Published May 9, 2023 at 9:20 AM EDT

The cover of "My Father's Brain: Life in the Shadow of Alzheimer's." (Courtesy of Farrar, Straus and Giroux)

Here & Now‘s Deepa Fernandes speaks with author and cardiologist Sandeep Jauhar about his new book “My Father’s Brain: Life in the Shadow of Alzheimer’s.” It intertwines information about the disease and how it’s treated with his own family’s story of coping when his father developed Alzheimer’s.

Book excerpt: ‘My Father’s Brain: Life in the Shadow of Alzheimer’s’

By Sandeep Jauhar

Introduction: They Used to Call Me Topper

We were sitting in the waiting room of the same neurology practice that was treating my mother’s Parkinson’s disease when my father asked me, perhaps for the third time, “Why am I here?”

“Because your memory is getting worse,” I answered.

“My memory is fine,” he replied. Any lapses, he had been insisting, were normal for a man of his age.

“So what did you have for lunch?” I asked, staring ahead.

He thought for a moment, then sniffed defiantly as my point came across. “Well, no one can remember everything,” he muttered.

He and my mother had moved to Long Island, where my brother and I lived, several months earlier. Since their arrival, I had come to suspect that his symptoms were not the usual age-related cognitive changes, even if he kept saying they were. For example, he had always been careful with his money, a consequence of an impoverished childhood, but now he was bouncing checks. He was booking hotel and flight reservations but neglecting to cancel them—something my older brother, Rajiv, discovered only after he began to monitor my father’s bank accounts. Nearly every week he was sending cash to random charities in response to generic emailed or televised appeals. “Two fifty here, hundred there,” Rajiv said. “Not that much, but I’m not sure he knows what he’s doing.” When we voiced our concerns, my father said it was his money and that he would spend it the way he wanted.

So, despite nearly four decades of medical experience between us, my brother and I decided our father needed the attention of a specialist. As cardiologists, we understood diseases of the heart. My father’s problems, we realized, were on a different plane.

For his part, my father seemed unconcerned. Memory loss, to him, was an inevitable consequence of aging. In the sixth century BC, the Greek philosopher Pythagoras of Samos divided the life cycle into five distinct stages, the last two of which he designated the senium, a period of decline and decay of the human body and mental faculties “to which, very fortunately, few of the human species arrive, [as] the system returns to the imbecility of the first epoch of infancy.” In his casual fatalism, Pythagoras had a fellow traveler in my father.

I had been asking him, “How do you think your memory is?”—foolishly hoping that if he could at least recognize the problem, he might try harder to overcome it.

“My memory is fine,” he would say.

“But you are always forgetting things.”

“Everybody forgets, Son,” he would assure me. “It happens with everyone.”

The irony here was that my father had once hated the prospect of losing his faculties, even when there was little reason for him to fear such a thing. I remember standing in Riverside Park on a wintry day about ten years earlier, when I was still living in New York City, yelling at him on the phone for stopping his blood pressure medications again. Though a respected scientist, he had never trusted drugs (or doctors) to keep him well.

“Do you want to end up with a stroke?” I blared into the phone after he told me his systolic blood pressure was still hovering around 160 or higher (greater than 140 is considered hypertension) on the rare occasions that he checked it. “You won’t be able to work.”

“I’d rather be dead,” he replied, before agreeing to restart the medications.

Yet now here he was, sitting amid vinyl chairs and potted plants, nonchalantly sipping free coffee from the Keurig machine as we sat and waited for his name to be called. He asked me, again, how he could become an organ donor. Once again, I gave him the response he did not want to hear: that because of his advanced age, the options were limited.

“Come on, Sandeep,” he implored. “I have wonderful organs!”

“We’ll look into it,” I said, not wanting to discuss his organs in the waiting room.

“Just tell me where I can get a donor card.” He stood up, picking up his briefcase. “I will ask here.”

“Sit down,” I hissed as people began to stare. “You can’t tell random people you want to donate your organs. Like you asked that lady at the front desk, ‘Do you know any widows I can give money to?’”

“I didn’t.”

“You did! That is not how things work. You have to go through the proper channels.”

“You are not telling me the proper channels.”

“Fine, so we’ll look it up. But Dad, come on, you’re seventy-six years old.”

Obviously disappointed, he began to say something, but then we heard his name, Prem Jauhar, called out. I quickly stood up and patted him on the shoulder to follow me. Dr. Marc Gordon was ready to see us.

I had first recognized something was amiss only four months earlier, when I’d flown to North Dakota, where my parents then lived, to attend my father’s retirement party.

This article was originally published on WBUR.org.