My Father’s Brain-Life in the Shadows of Alzheimer’s
Dr. Sandeep Jauhar, a cardiologist and the writer of three previous books – Intern, Doctored, and Heart-a History, has written a new book titled My Father’s Brain-Life in the Shadows of Alzheimer’s. It’s part memoir and part medical thesis about the disease that affects almost six million Americans-around one in ten people over the age of 65. That number is projected to double by 2050.
Jauhar presents an emotional and intimate account of his family’s seven-year journey alongside his father, who was diagnosed with mild cognitive impairment (MCI) in 2013. The personal memoir provides details of the changes in the brain’s function with age and as memory falters. It offers insights into dementia, and how scientists, caregivers, and an aging society reckon with a disease that cannot be cured.
Here’s his exclusive interview with India Currents.
Shalini Kathuria Narang: You wrote in the book that your father never trusted medicines or doctors.
Dr.Sandeep Jauhar: My father wanted to become a doctor but did not have the money to go to medical school. He grew up in rural Kanpur in a very impoverished environment post-partition. He was very social-minded and thought medicine was a great way to do good in this world. He ended up going into agricultural science and plant genetics.
He was always inclined that his children become doctors, but found that most doctors he interacted with, didn’t pass muster. Doctors had misdiagnosed him with several conditions. My grandmother was put on a drug by our family doctor which almost killed her.
He had the sense that doctors, even though they were in a very noble profession, didn’t measure up to the profession and to the nobility of the profession. He thought there was a lot of money-mindedness in medicine that was distasteful.
SKN: How have you changed both as a writer and a physician while writing these four books?
SJ: My first book- Intern is a memoir of my medical training. It’s a genre- the training memoir that introduces doctors to writing. I found in my experience that those wanting to write many books will start with writing about their medical training-school, residency, etc. It’s a very dramatic time in a physician’s life. There are many firsts that happen-first death, first medical prescription, the first time someone actually calls you a doctor, so there’s a lot of drama associated with that.
My next book Doctored was about my growing disillusionment with the medical profession in the United States and how it was being run in terms of money-mindedness, the business aspects of medicine that I found and I continue to find distasteful.
My third book Heart History is a history of the human heart-wonderful progress that has been made in cardiovascular medicine over the last century or so.
My Father’s Brain is a very personal book. I display my vulnerability, the vulnerability of my family, and my own shortcomings as a son and as a caregiver for someone with Alzheimer’s.
I’ve gotten to that stage as a writer where I feel that there’s no reason to hold back. Readers appreciate honesty, especially in a memoir, and I wanted to be as brutally honest as possible.
As a doctor, my writing has always been a way to clarify my thinking and helped me think through issues. This an ethical conundrum that I’ve faced as a doctor and now in this book as a caregiver, especially towards the end of my father’s life when it was unclear what path we should take in terms of following his advanced directive or not. A directive that was made when he was ostensibly a different person than he was when he was declining and on his deathbed.
Thinking about end-of-life issues that I did with this book has made me more empathetic as a physician towards end-of-life issues in medicine. Most doctors don’t want to get involved with end-of-life issues, because 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.
As a cardiologist, I saw a lot of death, but I also saw my patients would go into hospice and I would step back. I found in my experience that it’s such a painful process to go through with a family member who’s dying that doctors have a real role to play. It was really heartwarming for me to have my father’s physician text us and 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.
SKN: How has the caregiving journey changed you as a person?
SJ: Caregiving was really one of the most profound journeys I’ve taken. I didn’t know that much about dementia when I first started. I’m a doctor and trained in neurology. I spent time on the neurology wards and dealt with patients with dementia. But caring for someone with dementia is unusually difficult and challenging and it’s fraught with all sorts of problems- medical, familial, social, and ethical.
I strove in this book to address many ethical issues that I came across. For example, be straight with your family members or do you deceive them in certain ways to alleviate their anxiety or stress? I approached it as a doctor, and eventually, I came to think of it as a caregiver- something that I think caregivers intuitively feel and understand when they’re caring for someone with dementia. There were a lot of things I had to learn. I wrote the book that I didn’t have but needed when I was going through this journey.
The book is both a wrenching personal chronicle, but also about the history and science of dementia. People who read it will gain knowledge and knowledge, ultimately, is power- to care better for your loved one, and to also care better for yourself- to have less frustration and stress and impatience. It’s easier to do that when you have a roadmap for what the journey is going to be like.
SKN: Vision is always 2020 in retrospect, but are there any things that you would have done differently?
SJ: I wish I had had this book and read something like this so I knew what to expect. And, of course I have regrets. I think all caregivers do when you lose your temper and patience.
You start to treat your loved one in a sort of 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 and marginalizes them 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 and that’s true, not just for the world, but even within a family. You start to see someone as different. And it’s very hard to fight that.
One of my goals is to describe all that so that people are aware of it and can fight against that impulse and hopefully be more loving and patient.
SKN: You write about cultural nuances, connotations, and the caregiver’s expectations of you and your siblings. Would you like to elaborate?
SJ: There were so many cultural expectations. Me, my brother and my sister grew up in a very hybrid way. Our parents were very traditional Indians. They were very comfortable in the Indian culture that they grew up in and they imported some of that into the West and obviously exposed us to it. But we were exposed to American culture from friends in school, and so on. We were Americanized, but we were also still very Indian.
My parents expected that we would adopt the Indian way of thinking-hook, line, and sinker and that was not a realistic or fair expectation for children who spent most of their lives in the United States. My parents expected that my brother and I would care for them when they got older. And it was something that we accepted and we were perfectly happy to do.
But dementia and my mother’s Parkinson’s made it all that much more complicated. We tried to do the best we could and we were dutiful. We did what we could and I think in the end, we did right by our parents. But could we have done better? Yes. Could we have done more? Yes.
The caregiver who took care of my dad had certain expectations that were also culturally based. For example, as his sons, you need to visit more, you need to spend more time with him and a lot of that is true. I wish we had found more time, but we were in a very weird kind of situation where our parents had grown old. Our kids were still relatively young. And we were also spouses and doctors.
We were in this phase where we were trying to balance multiple roles and responsibilities. The hospital took a lot of time, my job as a doctor took time, and my responsibilities as a husband and a father to young kids- a tween and a teenager. And then my responsibilities as a son of a traditional Indian man were also all there in the mix.
You’re faced with this kind of nexus, you try to do the best you can. And that’s what we tried to do. And whether we met all the expectations of Indian culture is unclear. I don’t think we did. But I think that, given everything that we had to do, I think, the job we did was very acceptable.
SKN: How have your siblings responded to this book?
SJ: I’ve been writing about my family, myself, and my own shortcomings as a doctor or as a person for many years. My first book -Intern was also a very personal book. My brother played a large role in that book, as sort of my exemplar of a doctor but also as someone I was very competitive with.
My siblings are very used to my being honest about my life, and they realized that their story is really part of my story also. And they’re very accepting. So they’re actually been incredibly supportive. They wanted me to write the book. They felt that the book would be helpful to many people and would provide solace and comfort. They told me to write what I wanted to and to be honest, and that’s what I strived to do. And I think I did do that.
SKN: What are some of the changes you’d like at an institutional level?
SJ: In America, we treat people with dementia in a very subhuman way. We lock them up in memory units in nursing homes, and many people live a fairly miserable existence in that environment. I never wanted my father to go into that environment and a lot of the book is about me fighting my siblings to prevent that from happening.
They didn’t want him to go to a nursing home either, but were more pragmatic in their approach and thought that if we couldn’t keep a paid caregiver for him or if he kept kicking her out of the house, then eventually he was going to have to end up in an institution.
Fortunately, we were able to prevent that from happening. One big thing I’d like to see is a more humanistic treatment of patients with dementia, like the dementia village in the Netherlands that I wrote about where people can roam about and have a certain degree of autonomy.
In America, we prioritize safety over autonomy to the point where we lock people up in a unit so that they can’t wander and get lost. People do wander sometimes. They do 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. Elder Care is largely nonexistent and relies on families and by families, I mean really daughters. They’re the ones who take up most of the brunt of the work.
Dementia Care costs about $200 billion a year, and only 11 billion is supported by the government. The remainder 189 billion is picked up by families to the tune of roughly $80,000 per year. Most families can’t afford this.
The government really needs to do more. To make eldercare insurance cheaper, and to provide more services through Medicare. But there’s also a lot of cost when it comes to loss of economic productivity, especially for women who have to forgo careers to care for aging parents. I’d like to see some of those changes happen.
SKN: You also write about the latest treatments, medications and research in your book. Can you talk about those?
SJ: For most of the history of dementia care, there have been no effective treatments.
Recently, there have been two drugs that have been approved by the FDA that have been shown to slow cognitive decline. These are monoclonal antibodies delivered intravenously. They need to be started very early in the course.
There have definitely been some huge strides, in the last three to five years in dementia care. It’s finally been shown that removing some of the misfolded proteins called plaques can be beneficial and can slow cognitive decline. We’ve never really seen that until now.
One of the big challenges of Alzheimer’s care is that we don’t really know what causes Alzheimer’s. Some say it’s amyloid plaques and tangles or neuroinflammation, viruses, or bacterial infections leading to vascular damage. There are so many different potential causes.
So it may be that we need to address all of these different causative factors. These factors grow worse with age and that may be the reason why Alzheimer’s and dementia affect older people. There are big strides made but there’s a lot that remains to be done. When you compare dementia care with like, heart disease care, it’s just a world of difference.
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