‘My Father’s Brain’: Dr. Sandeep Jauhar on Alzheimer’s Caregiving

By | June 12th, 2023

New York Times bestselling author Dr. Sandeep Jauhar joins Being Patient Live Talks to discuss his latest book, My Father's Brain, and his journey as a caregiver and a doctor.

Becoming a caregiver for someone you love who is living with dementia can be an incredibly isolating experience. Even with his experience as a working physician and his brother a doctor, New York Times bestselling author Dr. Sandeep Jauhar felt like he was “flailing.” 

As the author of three award-winning books, Intern: A Doctor’s Initiation, Doctored: The Disillusionment of an American Physician, and Heart: A History, Jauhar covers health, aging, and medicine for The New York Times. In his latest book, My Father’s Brain, he shares an account of his father’s journey with Alzheimer’s alongside his own experience, understanding the disease through caring for his father. 

“I wanted to write the book that I needed to have, that I didn’t have when I was going on this journey,” Jauhar reflects, “a book that explained the history and the science of dementia, that was a personal story that sort of recapitulated the conversations and the scenes that you know, so many families go through.” Ultimately, his “hope was that it would serve as a balm for people going down this road.”

Joining Being Patient EIC Deborah Kan, Jauhar discussed this latest book and shares his experience as a son and a caregiver. Watch the full Live Talk or find a transcript of the conversation below.

Being Patient: Why did you decide to write this book?

Dr. Sandeep Jauhar: I never planned on writing a book about my father and my journey through my father’s illness. I just found that when he was diagnosed, I was just flailing. I was always very close to my father. It was very difficult to watch him decline. But you know, as a doctor, I must confess that, at least in the early stages of his illness, I didn’t really know what was happening. I went to medical school. I did a residency in Internal Medicine. I’m a cardiologist. I did rotations on the neurology wards. I’ve had many patients with dementia. But, when I was faced with the prospect of caregiving, I found that I went through all the stages that many people do: the denial, the frustration, the anger. I think a lot of it was because I was ill-informed about dementia. 

Being Patient: There was a humanity about it that hit home with me because you discussed some of your struggles and how your relationship changed with your dad. It’s the story of so many other people. One of the things you do so well is you talk about behavior and relate it back to the brain, which I love. In that sense, we have more empathy when we understand why these behaviors happen. I felt your father very much captured that. 

Jauhar: You just hit the nail on the head for my motivation for writing the book: I went through periods of frustration, mostly because I didn’t know what was going on. I didn’t initially intend to write this book, but I did intend to learn as much as I could about my father’s illness, to inform my caregiving, and to give me patience when I needed to have it when he needed me to be patient. I wrote what I think is a wrenching, personal chronicle. Everyone knows how difficult it is to care for someone with dementia, but I also wanted to write a neurological script. You know, what is going on in the brain? Why, for example, could my father not remember what he had for lunch, but he remembered the partition of India when he was a boy? What’s going on in the brain? What is memory? What does memory mean? 

I explore cultural, metaphorical, and personal meanings, family meanings, and so on. Also, the sort of neuroscience of memory was really important for me as a doctor and as a son to understand what was happening. Why did my father become emotionally volatile when he had been the most mild-mannered person? As it turns out, the amygdala, which processes emotions, is right next to the hippocampus. The hippocampus processes memory, and memory is often the first thing to go. Then, emotional volatility occurs, and then the loss of self-awareness. 

I sort of map that out as a way to tell caregivers, “Well, this is what to expect.” When you know what to expect, when you have a roadmap, you’re more likely to be patient and loving and just a better caregiver.

“When you have a roadmap, you’re more
likely to be patient, and loving,
and just a better caregiver.”

Being Patient: Your mom had Parkinson’s, and your dad later had dementia. In the book, you examine the differences between these neurological conditions. Could you tell us more about that?

Jauhar: My mother was diagnosed in about 2009, and around 2012 or 2013, she was declining. Her disease was also a brain disease, but you know Alzheimer’s is sort of the emperor of brain diseases. Her disease manifested more in motor function, motor dysfunction. She couldn’t walk. She had some cognitive decline, but it wasn’t really that palpable. She was still aware of what was going on, and her memory was relatively intact. She could, for example, remember when she bought a piece of clothing but didn’t know how to put it on.

My father’s disease was the opposite. He couldn’t remember when he had bought the suit, but he still retained some procedural memory ability to dress himself. So, their brain diseases were, in many ways, complementary as they were as people. My mother was very affable, and my father was a little bit more reserved. My mother was very sort of a contented person, and my father was always striving and very ambitious. Their disease is very different, but sort of originating from the same place, if you will. What started happening in 2012, as we knew my mother was declining, we wanted to move her and my father to New York, where my brother and I live.

This is probably a very familiar story for a lot of people. When you’re far away from your parents and their aging, you don’t know what’s going on. We didn’t really know what was going on, and my mother was not forthcoming about the fact that they were eating cereal for dinner or that my father got lost on the way home from his laboratory. If I had known that, then that would have been a red flag. 

I explored this in a book that, in America, we used to live in multigenerational homes, and there was always someone around to help out. The world has changed. You know, kids grow up and blaze their own paths, like my brother and I and my sister did. Women work outside the home. These are really good developments, but when someone is declining and needs help, that’s when you see how porous our social safety net is. Because the government provides little care, the social safety net in America is really the family. When the family is kind of splintered, and people move far away, it’s hard to care. So, we moved our parents to New York, and it became abundantly clear from the outset that my father had a real problem. 

“…When someone is declining and
needs help, that’s when you see how
porous our social safety net is.”

Being Patient: What were some of the symptoms of cognitive decline you were seeing?

Jauhar: He couldn’t remember the code to the safe that we bought for him. He was very kind of uninvolved in the move and making decisions, and he was sleeping a lot. Then he was getting lost in his new neighborhood. So, my mother, we were on a walk, and she stopped me and said, “Do you think your Dad has Alzheimer’s?”— that was the first time anyone in the family had even uttered those words. Because, you know, there is still such a stigma associated with having Alzheimer’s. We ended up taking my father to a neurologist, and he diagnosed him with mild cognitive impairment, which is sort of a pre-dementia. That’s kind of how the book starts with him getting the diagnosis and then sort of going through the very difficult journey, you know, one of the most difficult journeys I’ve ever taken.

Being Patient: One of the things that struck me as similar to my experience as a caregiver was your relationship with your siblings. You have a sister and a brother who appear throughout the book, and you’re all debating the best thing to do at certain times, which is a very normal thing in a family. How did caregiving and having those debates with your siblings change how you approached dementia care over time?

Jauhar: I wrote the book, informed by my profession as a doctor, but as a son and caregiver, and one who was flailing in many ways. So, I wanted to be deeply honest about that. One of the things that I think a lot of caregivers sort of understand intuitively, and this is where my being a doctor may have interfered with my caregiving, or my optimal caregiving, is that there’s a difference between lying to someone for your own benefit and for their benefit. Telling the truth when it causes tremendous anguish isn’t worth it. It actually doesn’t matter. 

As a doctor, I’m supposed to tell patients the truth— I don’t withhold bad news. That’s the paradigm that we operate in, in modern medicine, and I tried to apply that to my father. When he would get angry that his caregiver was being paid, I would say, “Dad, look, people who work for you need to be paid.” That would make him very angry, and he would sort of kick her out of the house. It created a lot of stress for my siblings, but I insisted. For me, telling my father the truth was like telling him, “You’re still a part of my world, that you deserve to know the truth. That’s the most dignified way I can treat you.” What I came to understand is that there’s a different conception of dignity.

That is validating someone’s reality, not causing them anguish and repeated anguish. My mother died in 2006, and he would say, “Where’s your mother?” And I would say, “Dad, Mom died. She died three years ago. And nothing we say is going to bring her back” Then he would revisit it, and he would get very, very upset, emotional. So, my brother said, “We should just tell him that mom is just not here.” I said that it didn’t make any sense. Part of it was that he was getting very paranoid at that time and thought we weren’t leveling with him about various things, like finances. I said, “Inevitably, he’s going to discover the truth, and then he’s going to distrust us even further.”

“Telling the truth when it causes
tremendous anguish isn’t worth it.”

Being Patient: How did your brother approach that? Did it work?

My brother would say things like, “Mom’s on a plane.” And he’d say, “Well, can you call her?” He said, “Dad, she’s on the plane. You can’t call someone on a plane, right?” He’d be like, “Oh, yeah, that’s fine. Make sure that you call her when she lands.” Then he would be calm. 

My brothers intuitively understood that it wasn’t worth it. It wasn’t just from the standpoint of stress. It was from the standpoint of caring. In writing the book, I traveled the world, and I interviewed a lot of caregivers. I went to a lot of support group meetings. I went to a dementia village, the Hogeweyk, in the Netherlands, and their whole kind of basis for their caregiving is based on therapeutic deception. It’s like creating this world that simulates a home, but it’s not the person’s home. When I spoke to them, I said, “Isn’t this kind of unfair? Isn’t this kind of deceptive?” My guide said, “In dementia care, you need to meet the person where they are.”

I remember Trump was the president then, and he said, “You know what? We validate Trump’s reality all the time. Why can’t we be as sympathetic to patients with dementia?” which I thought was great. I learned that my conceptions had to change to be an effective caregiver, and I traced that journey and that sort of psychological maturing in the book. 

Being Patient: What would you have done in a different way if you were to go through this journey again?

Jauhar: Because of my training or my hyperrational way of being, the paradigm that I sort of subscribe to was reality orientation. That was the paradigm that caregivers for patients with dementia had adopted back in the 50s, 60s, and 70s, and it really didn’t start changing until maybe the 1980s. Now, more people understand that validation therapy is a better way, or some people call it therapeutic deception, and I would have made that transition a lot sooner. In retrospect, I should have. Part of me just very irrationally thought that if I could get my father just to try harder, try harder to remember to concentrate, he’d be able to do some of the things that he was able to do.

So, I would scold him in a loving way, but that created a lot of stress for him. One of the things I definitely would have done differently is not try to correct him so much, not try to get him to see the error in what he was doing and kind of accept him as a person who had changed, but someone who was still my dad, and someone who I still loved. It’s hard to convey that love when you’re trying to change someone back to what they used to be

Being Patient: I want to talk a little about his last days. What was it like when he died, and what was it like afterward for you?

Jauhar: My father had a very precipitous decline, and this is not unusual in dementia. We don’t know exactly what caused the final decline. I mean, I took him out to lunch. And there was that scene when we took him, I took him to the House of Dosas, and we were walking back, and it was raining. He was still walking, and he was still eating. Then like three days later, he couldn’t get out of bed. We didn’t know what had happened. Had he developed a UTI and then developed some other infection? Did he have COVID? I didn’t know. Did he have pneumonia? So, I wanted to sort of investigate as a doctor, but my brother, who’s also a doctor, said, “What are you trying to do? What is your goal here?”

There was a lot, especially in that final chapter, of sort of disagreement and trying to figure things out together. Ultimately, we decided on hospice. I don’t really remember because it was such a difficult journey. I put some of the latter stages of his decline out of my mind. I still think of him as my dad, the one I relied on. He was such a funny guy. I would talk to him about a girl’s troubles, and he’d be like, “Don’t worry. Worry never helps. And please call me because I’ll constantly be worried.”

I remember those things more than I remember him in his decline. Maybe if the final stretch had been prolonged, it would be harder to do that. Although it was fraught with a lot of ethical challenges for me, you know, do we respect his wishes that he wrote them when he was an eminent geneticist? He said, “I don’t want any sort of extraordinary measures taken if I become very impaired.” That made sense when he was 50. He wrote those words, but then now that he’s almost 80 and he’s sitting there, he doesn’t seem that unhappy. 

You know, maybe I was unhappier than he was. Dementia, kind of like it, restricted his perspective and his, wants and needs, and ambitions in a way that almost kept him happy. At least like, in some ways, he was more content than when he was an ambitious scientist, who was trying to get the plenary talk at the big worldwide conference, or he was trying to get recognition for his scientific discoveries. 

“I still think of him as my dad,
the one I relied on.”

Being Patient: It was so relatable to me because I remember having a conversation with my mom, and she said, “If I get really bad, I don’t really want to live anymore.” But, if you asked me to describe my mom today, I’d say, “Oh, she’s content.” That definition severely changes and can’t really be applied to how you and I are today. It’s a new norm.

Jauhar: One of the big lessons I learned is that contentment and cognitive impairment aren’t necessarily exclusive. Sometimes the thing that makes us the most unhappy is the way we think about things. Toward the latter stages of my father’s life, I didn’t really see him that unhappy, I think we were unhappier that he had become this way. More than he was. I think that sort of reflects what I wrote, right in the book is this sort of hyper-cognitive prejudice that we have, especially in the West. In capitalist cultures, in general, what’s really prized is productivity, the ability to process information, and that’s sort of the centerpiece of our lives, right?

With smartphones, and social media, the constant influx of information— if you can’t process that information, if you can’t add to the conversation, then you become marginalized. I think that’s what happens a lot with dementia patients. They’re not as unhappy as we are that they can’t participate anymore in our lives.

Being Patient: Now that you’ve been through this journey, if tomorrow somebody brought their loved one who was being diagnosed with dementia, how would it change the way that you interact with them? Especially now that you’ve been through this as a doctor?

Jauhar: Most doctors don’t want to deal with end-of-life issues, and I can’t say I was any different. I’m a cardiologist, and we pride ourselves on cutting-edge technology, innovations, and therapies. I also do congestive heart failure, so I see a lot of death. But like many of my colleagues, before I went through this journey when patients would get referred to hospice or palliative care, I would step back. I would say, “Well, there’s really nothing more I can do.” What I realized, being the son of someone who’s dying, is that it was really important for me that my father’s doctor still remained engaged with our family and still sent text messages and sort of checked up on things. So, I strive to do that in my practice much more than ever. 

Being Patient: Thank you so much for sharing you and your father’s story.

Jauhar: Thank you for what you do. I mean, this is so important. It really is. Being in this world, you can never leave it, having gone through this. I just think that organizations like yours and others are just so important to provide support for people going down this journey, you know, just the road because it’s a really lonely road.

Katy Koop is a writer and theater artist based in Raleigh, NC.

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