My Father’s Brain by Dr Sandeep Jauhar is all heart. And, it has nothing to do with the fact that he is a cardiologist. The book―his fourth―is a deeply affecting and heartbreaking memoir, detailing his father’s descent into Alzheimer’s and how he and his family came to terms with it―grudgingly at first and with grace in the end. Jauhar’s father, Prem, was a world-class plant geneticist who started losing his mind and eventually himself in the last seven years of his life. To see a loved one become a shadow of their former self and care for them as they decline is not easy. It comes with denial, frustration, resentment, guilt, helplessness and more. And, Jauhar lays bare all these emotions as they are―raw and unvarnished. His writing is honest, and brave. The book is as informative as it is emotional. Even as he struggles to cope with his father’s disease, he delves into the science behind it. The Jauhars’ experience is unique yet universal―there are more than 55 million people with dementia the world over, as per the World Health Organization, with 60 per cent from middle- and low-income countries. As our lifespan increases, so will the cases. That means most of us either know or will know people with dementia. This book gives a glimpse of what that really means for your loved one and you. Excerpts:
One day during my parents’ first winter on Long Island, a few weeks after the visit to Dr. Gordon, my father and I went for a walk. The sun was shining brightly that day, fluorescing off the white drifts to either side of us. The snow had come early that year; it was now melting into a kind of grayish honeycomb along the footpath. Cars in driveways were blanketed in frost. Pellets of road salt crackled under our shoes.
“You tripped here, remember?” I said, pointing to where the sidewalk was jutting up.
My father nodded. He remained a handsome man, with his meticulously trimmed salt-and-pepper mustache, appearing twenty years younger than his age. That afternoon he was wearing a red sweater under his bomber jacket. A green cap with earmuffs covered his head. “I was running,” he recalled of the brief stumble that fortunately had not resulted in injury. (He had been walking.) “It was dark.”
“You must not go out when it’s dark,” I admonished. “I’ve told you before.”
“I should go with Pia,” he said, laughing. “When will you bring her?”
“I brought her last weekend.”
“No,” he cried.
“I did.”
“Well, you should bring her more often. She’s a lovely child.”
I told him I would. I didn’t have the heart to tell him that his beloved granddaughter rarely wanted to visit anymore.
He stopped to blow his nose with his fingers, leaving a string of snot on the wet snow. “Come on, let’s go back,” he said. We had walked about a block.
“You don’t want to walk some more?”
“No, I’m tired,” he said, turning around. Then, as if on cue, the tape rewound. “So, when will you bring Pia?”
★★★
As our conversation during that walk revealed, my father’s most troubling symptom that winter was short-term memory loss. But, I began to wonder, what exactly is memory? How is it encoded in the brain, and what causes it to deteriorate in dementia?
These weren’t just academic questions to me. As a doctor, but also as my father’s son, I felt compelled to explore these questions in part by digging into the science of brain degeneration. Understanding my father’s condition at a deeper level, I hoped, would help me make sense of what he was going through, and what we as a family might expect in the months and years ahead. At the same time, I believed that confronting his memory loss would help me cope with the emotional and practical dilemmas that arise when someone you love becomes a different sort of person. I would investigate broadly, from deep questions such as what makes us who we are and how to honor my father’s wishes for his future self to more specific matters such as the utility of medications and the existence of novel therapies and caregiving strategies. Knowledge, I believed, would give me insight, a deeper sense of the situation, but also empathy (though this didn’t always work out as planned). In the coming years, it would be when my father’s behavior seemed random, incomprehensible, with no purpose or blueprint, that I was most frustrated as a caregiver. Thus, acquiring knowledge of the science and history of his condition not only illuminated his needs but allowed me to take better care of myself, too.
★★★
At the podium, my father and the chancellor shook hands, and my father graciously received an engraved plaque. My hand on his shoulder, I then guided him back to our table, appreciating the grateful nods of staff and other patrons along the way. I sat down with a huge sigh of relief. I had been so worried about how my father would handle the whole affair; fortunately it had passed without any major mishaps.
But then, with his part of the ceremony over, my father decided it was time to leave. It was almost two o’clock, and he wanted to go home to take a nap.
Past perfect: The Jauhars.
“We’ll leave in a few minutes,” I whispered. “Just let them finish.”
“I am tired, Sandeep,” he said loudly as another name was called. “I did not want to come for so long.”
“Please, Dad,” I said under my breath. “It doesn’t look good if we get up now. We’ll leave in a few minutes when it’s all over.”
He thought about this for a moment. By now people were giving us sideways glances. “Then I will take a taxi,” he said, making to get up.
I tugged at the sleeve of his jacket. “Please, Dad,” I hissed through clenched teeth. “I work here. Just give it a few more minutes.” Then, my chest filling with contempt for him, I said, “Where are you going to get a taxi? You don’t even know where you are.”
He stared at me, perhaps considering what I had just said, or maybe because he felt humiliated. I am not sure. Then he sat down as it dawned on him that his was not a viable plan.
As the ceremony continued, I looked blankly across the room, shaken from having spoken to my father so bluntly (and in public). I noticed a line of Mylar balloons tied to a banister behind the podium, and a short snippet of a memory began to play in my mind. I am seven years old. There is my father, bursting through the front door of our apartment in New Delhi, carrying a helium balloon. Before he can even sit down, I grab the balloon, run outside to the front of our flat, and let it go. It quickly sails up out of my reach as I jump for it in panic. With his long arms outstretched, my father whisks the ribbon out of the air before it floats away and hands it back to me.
Even as the flickering movie played, I heard him say again, “Let’s go, Sandeep, I am tired.” No remembrance or resentment: the Etch A Sketch had already been wiped clean. Again I tried to negotiate with him―and I did manage to keep him sitting for a few more minutes―but there was no denying him that afternoon. “Come on, Dad,” I said, finally standing up, trying to avoid the sympathetic glances of the patrician grandmother sitting next to us. “Let’s go home.” We left through a side exit.
We did not speak to each other on the way home. When I pulled into his driveway, the sun was shining again. Tiny rain puddles now reflected a bright blue sky.
“Thank you for coming, Sanja,” he said, opening the car door. I could tell he knew that I was still upset.
“It was nothing, Dad,” I muttered, just wanting to leave.
“No, it was a lot,” he said. “I am glad you took me. You are a good son.”
I felt a warm flush. Despite the years apart, a kind word from him still made me feel good. “I’ll come again tomorrow,” I said.
“What time?”
“I don’t know. After work. Maybe we can go for a coffee.”
He stepped out of the car in his gray suit, looking every bit the academic he had once been. “I am not fond of coffee,” he said, before closing the door. “But I am fond of seeing you.”
★★★
Human brains are modular. Just as large companies build regional plants to minimize transportation costs, the brain has evolved a collection of specialized units to serve distinct functions such as vision, language, spatial reasoning, and, of course, memory.
In it together: Sandeep Jauhar with father Prem and mother Raj.
There, in a curved ridge of tissue in this man’s medial temporal lobe, was a hippocampus, composed of several cell layers folded together like a cinnamon roll. It was withered and atrophic―at least so we were told; I had not seen enough normal ones to be able to tell for myself. As neuroscientists learned from Henry Molaison, the hippocampus and its surrounding structures are responsible for the encoding of long-term memories. Damage to these structures in the early stages of Alzheimer’s disease explains the anterograde amnesia―the inability to form new memories―that is a hallmark of the disorder (and that my father was now exhibiting). The predominant signaling chemical in the hippocampus is called acetylcholine, which is why pro-acetylcholine drugs such as Aricept are used to treat the failing memories of Alzheimer’s patients (though with only modest effect).
Hardly a centimeter from the hippocampus was an almond-shaped structure called the amygdala, which regulates emotional responses like fear. The fact that fear and memory structures reside so close to one another is no accident: we must remember what should be feared to ensure our safety and survival. The hippocampus actually goes into a hyperactive state after extreme fear kicks in, rendering certain memories―the topography of a mole on an assailant’s cheek, for example―in vivid detail, though other information, such as the layout of the room where an attack took place, may be lost. Such spotty encoding must be kept in mind when we are faced with the often-incomplete recollections of victims of violent crime.
★★★
Of course I would still acknowledge his remarks, but I rarely responded to or valued what he said―and then only if the remarks had the sheen of normalcy, like his comments on the buffoonery of a certain Republican candidate for president in 2016. If they were strange or idiosyncratic, they―meaning he―would be ignored. He would tell me old family stories, but I would find them unfunny or irrelevant and chide him or hurry him along. No doubt I made him feel worse, lonelier than he already was―not on purpose, of course, but it hardly mattered. Once he was labeled as having a brain disease―a label corroborated by my unforgiving interpretations of his conversation―he became to me a minor character in our family, a miniaturized version of his former self, isolated and condemned to ever-shrinking boundaries, as I stared sadly at him from outside the cage.
A similar thing happened with my mother. Once she started hallucinating―a consequence of her Parkinson’s (or perhaps the drugs she was taking to treat it)―my siblings and I were inclined to interpret almost all her actions and feelings through the prism of her disease. The social psychologist Tom Kitwood has termed such behavior “malignant social psychology.” It is a form of depersonalization. Even my mother’s being sad or withdrawn because she could no longer walk properly or because my father was continually fighting with her aides was construed by us (and by her doctors) as evidence of failing neurological processes, not as a reasonable human response to difficult and frustrating circumstances. During those years I was writing a book about the heart in which a central theme was the detrimental effects of psychosocial stress on human health. Yet when it came to my parents, my thinking regressed to a model of disease in which their conditions were purely consequences of cellular pathology. Our parents were constrained and marginalized not just by their diseases but also by our response to them.
Excerpted with permission from Penguin Random House.
My Father’s Brain: Understanding Life in the Shadow of Alzheimer’s
By Dr Sandeep Jauhar
Published by Penguin Random House
Price Rs699; pages 356