Cardiologist Dr. Sandeep Jauhar has written an emotional and intimate account of his family’s seven-year journey from his father’s diagnosis of mild cognitive impairment to the end of his father’s life. “My Father’s Brain: Life in the Shadow of Alzheimer’s” is part memoir and part medical thesis, with an inquiry into why the human brain degenerates with age and what we can do about it. Writer Shalini Narang spoke with him about his book and his experience.
You wrote that your father never trusted medicines or doctors.
My father wanted to become a doctor but did not have the money to go to medical school. He was social-minded and thought medicine was a great way to do good. He wanted his children to become doctors. He had the sense that doctors, even though they were in a very noble profession, didn’t measure up to the profession. He thought money-mindedness in medicine to be distasteful. He did agricultural science and plant genetics.
What made you write “My Father’s Brain: Life in the Shadow of Alzheimer’s”?
“My Father’s Brain” is about my and my family’s vulnerability and shortcomings as a son and a caregiver for someone with Alzheimer’s. My writing has been a way to clarify my thinking and to think through issues, [such as the] ethical conundrum that I’ve faced as a doctor and a caregiver, especially towards the end of my father’s life when it was unclear the path we should take in terms of following his advanced directive, [which] was made when he was ostensibly a different person than when he was declining and on his deathbed.
How did the experience change you as a physician?
Thinking about end-of-life issues have made me more empathetic as a physician. As physicians, we’re trying to solve problems, and when someone enters hospice care, we’re explicitly stating that there’s no longer any curative intent. It’s all palliative and most doctors step away at that point. I did too.
It was heartwarming for me to have my father’s physician check up on us and see how he and we were doing. I’m more inclined to engage with patients’ families near the end of life than I used to be.
How did the caregiving journey change you as a person?
It was one of the most profound journeys I’ve taken. Caring for someone with dementia is unusually difficult and challenging and it’s fraught with all sorts of problems – medical, familial, social, and ethical – for example, [whether] to be straight with your family members or deceive them to alleviate their anxiety and stress.
I approached it as a doctor, and eventually came to think of it as a caregiver. I wrote the book that I didn’t have but needed when I was going through this journey. People who read it will gain knowledge, and knowledge is power – to care better for your loved one, and to also care better for yourself, to have less frustration and stress and impatience.
In retrospect, are there any things that you would have done differently?
I have regrets. All caregivers do, [like] when you lose your temper and patience and treat your loved one in a dehumanized way. My father was fully human, but there were aspects when his cognition deteriorated, and his personality changed. He seemingly turned into a different person, and that was very difficult to cope with. The impulse to treat someone with dementia as different marginalizes them. It is a symptom of our hyper-cognitive capitalist culture where we value productivity. When people can no longer be productive, we tend to look down on them.
Related: Five Reasons Alzheimer’s Caregiving Is Challenging
Would you elaborate on cultural nuances and expectations?
There were many cultural expectations. Me and my siblings grew up in a hybrid way. Our parents were very traditional Indian, comfortable in the culture that they grew up in and exposed us to it. But we were exposed to American culture, too. My parents expected that we would adopt the Indian way of thinking. My parents expected that my brother and I would care for them when they got older. We happily accepted that responsibility. But dementia and my mother’s Parkinson’s made it much more complicated. We were dutiful and tried to do the best we could. In the end, we did right by our parents. But could we have done better and more? Yes.
I wish we found more time. When our parents had grown old, our kids were still young. We were also spouses and doctors trying to balance multiple roles and responsibilities. We tried to do the best we could. I don’t think we met all the cultural expectations.
Are there any changes you would suggest at an institutional level?
I’d like to see more humanistic treatment of patients with dementia, like the dementia village in the Netherlands where people can roam about and have a certain degree of autonomy. In America, we prioritize safety over autonomy, locking people up in a unit so that they can’t wander and get lost. People do wander sometimes and get lost in the dementia village, but there are always people around to help them get home.
Caring for someone with dementia is a full-time job and it’s also incredibly taxing financially. We fortunately had resources. I can’t imagine how hard it is for someone who doesn’t have resources. The government needs to provide more for eldercare in this country. Eldercare is largely non-existent and relies on families, mostly daughters. There’s a lot of cost when it comes to loss of economic productivity, especially for women who forgo careers to care for aging parents.
“My Father’s Brain: Life in the Shadow of Alzheimer’s”
by Sandeep Jauhar
Farrar, Straus and Giroux, 2023
Interview has been trimmed for space.