A doctor reflects on the challenges of caring for a parent with Alzheimer's
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. It seems like most people know someone who has Alzheimer's or another form of dementia - a grandparent, parent, spouse, partner, friend. For my guest, Dr. Sandeep Jauhar. It was his father who had Alzheimer's. It was also his mother, who had a form of dementia caused by Parkinson's disease. Dr. Jauhar's memoir, "My Father's Brain," is about witnessing his parents' dementia from his perspective as a doctor, a son, sibling and caregiver. There were several times Dr. Jauhar, his sister and his brother, who is also a doctor, disagreed about the best treatment for their parents, including when the time was right for hospice and when to let their father go.
Dr. Jauhar also writes about his quest to understand his father's brain and the brains of other patients afflicted with dementia. He says dementia remains the only chronic and widespread medical scourge for which there are no effective treatments. Dr. Jauhar is the director of the heart failure program at Long Island Jewish Medical Center. He was born in India and immigrated to the U.S with his family when he was 8. They were allowed in under a new immigration law under the category of scientists and academics of exceptional ability. His father was a scientist who ran a wheat genetics lab and was a fellow of the American Association for the Advancement of Science.
Sandeep Jauhar welcome to FRESH AIR. It's great to have you back again. And it's a book I think will help a lot of people. Alzheimer's isn't just a memory disease. In its final stage, it leads to death. Can you explain why?
SANDEEP JAUHAR: Well, Alzheimer's ravages the brain, as you know. I mean, it causes degeneration in many different parts of the brain. And one of the goals for me in understanding my father's journey, and my journey through my father's illness, was to understand what exactly happens in the brain, because, you know, as a caregiver, the times I was most frustrated was when my father seemed to behave in ways that were, you know, just totally irrational or just sort of evaded my understanding, my comprehension.
So one of the things that I learned, you know, is that Alzheimer's tends to affect at the beginning the hippocampus, which is the area of the brain that is associated with the retention of current experiences. Basically, it's the part of the brain that creates long-term memories. And that was really what the initial symptom was in my father, and a lot of patients with Alzheimer's, is that he couldn't recall what he'd had for lunch, or he couldn't recall what he'd done that day. And so, yes, Alzheimer's is really often thought to be a disease of memory. But, you know, as the disease progresses away from the hippocampus, it affects, for example, the amygdala, which is right next to the hippocampus, which is the area of the brain that is involved in processing emotions. So people with Alzheimer's, dementia often get very emotionally labile, or they become upset over circumstances out of proportion to the actual event.
And then, eventually, the disease affects the cortex, and it affects judgment and self-awareness. So one of the aspects of my journey that I try to convey in the book is what exactly happens in the brain and how caregivers can understand what's happening to their loved one through this sort of understanding. And the point of it is to try to, you know, develop, I guess, patience. You know, one of the things I regret the most is that, you know, though I'm a doctor, I really didn't understand dementia. I didn't really understand Alzheimer's.
GROSS: What were the first signs you noticed that your father was having cognitive problems?
JAUHAR: It happened fairly early on - I mean, before we knew that he had a disease. I'd say probably back in maybe 2012, he would call me and say that, you know, people at work wanted him to publish two papers a year, two scientific papers a year. And I said, OK, Dad, that's not a problem for you. He had published hundreds of papers in some of the top journals in the world. And so I said, you know, that's fine, Dad, you know? But he just felt very insecure about it. And he started spending a lot of time in in his lab and seemingly wasn't getting anything done. And that was probably the beginning.
But, you know, I was living far away. My brother and I lived in New York. My parents lived in Fargo, N.D. So that distance sort of made it hard for us to really follow what was going on. And I only found out later that things were happening that were red flags. You know, my father lost his way home from his laboratory, a lab he'd been going to for 20 years. He lost his way home. You know, he just started having a harder time sort of being himself. So I would say that was probably a couple of years before he moved to Long Island to live closer to me and my brother.
GROSS: When you tried to point out to your father that he was having memory problems and cognition problems, he kept excusing it and denying it. How would he deny it? And apparently that's actually a symptom of dementia, is that you don't know that you're not yourself, and you...
GROSS: ...Deny it.
JAUHAR: Right. So I think there are a couple of things. One is that I think a lot of people think that developing memory problems is normal. And so when I would tell him, Dad, you know, look, do you remember what you had for lunch? And he'd say, no, but you can't remember everything. And I think a lot of people, you know, really today and even through the ages have this sense that as you get older, memory declines. And it does. But there's a difference between sort of normal, age-related, you know, memory changes where you sort of forget the name of someone or you forget where you put your keys, and what my father was experiencing, which was much more dramatic and sort of malignant.
And you're right. There is a part of the brain that Alzheimer's does affect in the frontal and parietal lobes, which is what's responsible for self-awareness, a sense that something is wrong. And when those areas are affected, people lose that sense of, well, you know, I am impaired. So your understanding or your comprehension of the disease is affected by the disease itself, sort of on a meta sort of level. And that's exactly what happened to my father. I'd say very early on, he knew there was something wrong. I mean, he did move to Long Island, but as his disease progressed, he became more and more unaware of how much it was affecting him.
GROSS: So you made sure your father had a cognitive test, and it showed that he had mild cognitive impairment. What does that mean? Was the doctor able to do anything for it besides saying mild cognitive impairment?
JAUHAR: It's interesting, you know, when he gave me that diagnosis, you know, even as a doctor, I didn't really know what it meant. I'm a cardiologist. And, of course, I knew a little bit about dementia. I had learned about it in medical school. But I didn't know what MCI was - mild cognitive impairment. But it's a sort of pre-dementia. And, you know, he said, look, you know, your dad took this mini mental status exam. He got, I think it was, like, 23 or 25 points out of 30, depending on how the neurologist decided to score it. And so he's got some mild changes, and it may very well be Alzheimer's. We don't know. But I'm going to put him on some medicines to sort of bolster his memory because it was really a sort of what he called MCI of the amnestic type, which is just, you know, that it's primarily affecting his memory.
And that's really what the main problem was at the beginning. So he said I'm going to put him on some Aricept. I said, OK, that's fine. But Aricept is like Tylenol for arthritis. It doesn't change the disease process. It just sort of mitigates some of the symptoms. And so my father started taking it, but, you know, his memory deterioration progressed.
GROSS: There are no good medications for Alzheimer's because researchers don't even know the cause. I mean, there's theories. There are theories that have been debunked. Talk a little bit about why there aren't good medications yet.
JAUHAR: You know, Alzheimer's really remains a mystery. You know, I write in the book about how Alois Alzheimer, who was a psychiatrist, you know, first sort of discovered the underlying - what he thought were the underlying brain changes associated with Alzheimer's, basically plaques which are accumulations of misfolded proteins and tangles, which are also pathological changes, you know, inside neurons also associated with misfolded proteins. And so he thought plaques and tangles were what caused Alzheimer's. And this was a sort of paradigm that persisted through to the modern age. And so doctors, scientists tried to develop anti-amyloid drugs that would sort of rid the brain of these amyloid plaques, and the thought was, well, if that were to happen, that cognition would improve. But most amyloid drugs haven't worked.
Now, the one sort of exception which has come about relatively recently is a monoclonal antibody called lecanemab, which - the results were recently published that showed that there was some mild improvement in deterioration, if that makes sense. So there is a sort of deterioration from Alzheimer's, and the deterioration slowed in patients who got lecanemab. But they had to get it very early before they had, you know, major sort of brain deterioration.
So at this point, we don't know is it just plaques and tangles, or are plaques and tangles just a marker of some other process like inflammation, which has been shown to result in increases in the density of plaques and tangles? So is it neuroinflammation? Is it plaques and tangles? Is it viral infections? There are studies that show that brains with Alzheimer's have been infected with herpes viruses. So that sort of raises a whole new question of could antibiotics be helpful in the mitigation treatment of Alzheimer's? So at this point, we don't really know the answers. And it's very frustrating because so many millions of people are affected by this disease, and we still don't really know what causes it.
GROSS: Well, let me reintroduce you here. If you're just joining us, my guest is Dr. Sandeep Jauhar. His new memoir is called "My Father's Brain." We'll be back after a short break. This is FRESH AIR.
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GROSS: This is FRESH AIR. Let's get back to my interview with Dr. Sandeep Jauhar, author of the new memoir "My Father's Brain: Life In The Shadow Of Alzheimer's." It's about how Alzheimer's transformed his father and their relationship. It's also about what researchers know so far about Alzheimer's.
One of the issues you had with your father is, you know, in addition to memory lapses, he became disagreeable, argumentative, argumentative and disagreeable with you. And you write, I loved him, cared for him and hated him, too. I want you to talk about the hated him too part.
JAUHAR: Yeah, it was really, really hard. You know, my father and I always had a very close relationship. He was always, you know, a very serious guy, but he didn't really have much of a temper. And Alzheimer's really brought out certain aspects of his personality that were just very, very hard to take, very, very hard to understand. And, you know, sort of rolled up in that was that he didn't really understand what he was doing. He didn't have the awareness. So he would, like, verbally abuse his caregiver, a live-in aide that we hired. And I'd say, Dad, you made her cry again. What are you doing? He's like, well, w**** is not a dirty word.
GROSS: He called her a two-bit w****.
JAUHAR: Yeah. You know, he - I mean, he sometimes became violent. I mean, he threw orange juice in her face. He tried to hit her with, you know, a hanger. I mean, you know, this was not him, and dealing with his outbursts - and I would say this was sort of before I really understood the kind of, let's say, physiology of Alzheimer's. I mean, we were sort of in the thick of it, and I was just beginning to learn about the effects on the frontal and parietal lobes and how it affected awareness. But, you know, when he would sort of do some of these things, I thought he was just, like, putting me on. I was like, Dad - you know, he was my brilliant father, and he was acting in such an unreasonable way. And I just - I had a very hard time coping with it. And so, yeah, I loved him. You know, I wanted him to get better. I knew he wouldn't because the disease wins in the end. But yeah, I mean, I loved him, but there were times when I hated him too.
GROSS: Because your father eventually started losing so much memory and so much sense of who he was, you and your siblings found yourselves sometimes just ignoring him if you were all, say, at the table together.
GROSS: And you felt really bad about that. I mean, there were times, too, that you were in the middle of a conversation or an argument with him that was important, that was not finished yet, but you had to go and show up at the hospital. You had patients waiting for you. So that kind of decision about how to break away - I mean, at that point, you can't be patient. Like, you have a responsibility to your patients, you know, to the people who are sick, who - you're their doctor, you're their cardiologist. So how would you reconcile that?
JAUHAR: It was a balancing act every single day. You know, how much time do I spend with my father? How much time do I spend at work? And I'm not alone in that, you know. There are - what? - 15 to 20 million family caregivers for elderly people, many of whom have dementia. And, you know, a lot of them are also working, trying to make their careers, trying to keep up with their families, their children, and really taking care of someone with dementia honestly is a full-time job.
If you don't have the resources to pay for someone to help, and the government really provides very little help, then you have to do it yourself. And it can really affect your relationships with other people, with your colleagues, with family members. So it was a constant balancing act for me and for my brother, who's also a physician. So we would, like, stagger our call schedules, our hospital call schedules, so that someone could be, you know, around him or with him on the weekends, you know. But it was just a constant sort of compromise.
GROSS: How many years did your father need a caregiver before he died?
JAUHAR: Well, I would say five. Five, yeah, but before that, my mother, who was declining from Parkinson's - she had caregivers who really weren't there for my father. But after she died in 2016, then her last caregiver just stayed on and took care of my father. And that was for five years.
GROSS: So even though you and your siblings made major decisions with consensus, did you divide up responsibilities for caregiving? Like, was one of you looking after finances and another being the lead person in coordinating the caregiving or being more physically present with your father?
JAUHAR: Yeah, yeah. All those things - I mean, we were lucky that we were three siblings. And there's so much work to be done, and we really divided up the tasks. So my sister lived in Minneapolis, so my brother and I really were tasked with the - sort of the most of the caregiving. But whenever my sister would visit, she would, like, you know, take care of my mother, bathe her and so on.
My brother took care of finances and sort of the house repairs, you know, keeping - making sure that there was someone coming to mow the lawn and, you know, paying the bills and so on. And I think for me, you know, because my father and I were so similar in many ways growing up, and we were close, that I think I used to spend more time with him, you know, just sort of visiting and kind of sitting with him. And so - and that was an equally important part of caregiving, is just spending time, you know, with the person who's suffering.
GROSS: Well, we need to take another break here. So let me reintroduce you. If you're just joining us, my guest is Dr. Sandeep Jauhar. His new memoir is called "My Father's Brain." Dr. Jauhar is a cardiologist, but he tried to understand what was going on with his father's Alzheimer's, both on a personal level and on a scientific level. We'll be back after a short break. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with Dr. Sandeep Jauhar, author of the new memoir "My Father's Brain: Life In The Shadow Of Alzheimer's." It's about how Alzheimer's transformed his father and their relationship. It's also about what researchers know so far about Alzheimer's, its causes, its impact on the brain and why there is not yet an effective treatment. Dr. Jauhar is a cardiologist who directs the heart failure program at Long Island Jewish Medical Center.
One of the issues you had to deal with - and your siblings because you have two siblings had to deal with it, too - is if your father was delusional, whether it meant thinking he could do something that he couldn't or thinking that the caregiver was actually stealing his money or, you know, was a whore or whatever, you had to decide whether to go along with his delusions because you couldn't really shake them, you know, or try to convince him, no, you're wrong. It's dangerous for you to do that. Here's why you can't do that anymore. And I think it's fair to say that you and your siblings often disagreed about what the best approach to that was. Can you talk about where you stood on that and how, if at all, your perception of what to do changed over time?
JAUHAR: Yeah. I mean, this is a debate that all caregivers have, you know, caring for family members with dementia is how much do you tell the truth? I came from it initially from the perspective of a doctor who had been trained in sort of the modern system where you don't act paternalistic. You don't withhold bad news from patients. You care with patients, not care for patients so much. You know, it's just - it's a new way of thinking. And I was trained in that way of thinking. But with my father, it was very hard to sort of persist in that stance. At first, I just wanted to be straight with him. No, Dad, your caregiver, Harwinder, is getting paid. And no matter how much you don't want to pay her, we have to pay her because that's what you do in the world. You pay someone who's working for you. And for me, some of it was I just wanted to maintain connections with my father. I - it was just - I felt it was a way to uphold his dignity is to just be truthful with him and say, look, this is how things are, even if it upset him.
But my siblings had a different approach. They said, look, the truth isn't worth it. Telling him the truth isn't worth it if it upsets him. And so we had this struggle, and our struggle as caregivers really mirrored a larger struggle that has been going on in the dementia caregiving world for several decades, which is, you know, how much should you be truthful and orient patients with dementia to reality, your reality, the reality that you see, that most people see, or how much do you sort of validate their perspective and, you know, accept it and don't try to argue with them? And some would say, how much do you just lie and say, look, you know, like, Harwinder is not getting paid. She's going to work for free, you know...
GROSS: Which is what you ended up doing eventually.
JAUHAR: I did. I did. Because, you know, in the end, I realized that it just wasn't worth it.
GROSS: Well, the goal was to make it possible for her to stay without your father accusing her of things. And the only way to do that was to say, oh, she's working for free. So, you know, that lie enabled him to have care and enabled the caregiver to stay without feeling as threatened.
JAUHAR: Right. Right. So, you know, you have to - I came to eventually understand. And this may be just common sense for a lot of caregivers, but for me as a doctor sort of trained in a certain way of thinking, it took longer. But are you lying for your own benefit or are you lying for the benefit of the person you're caring for? And eventually, I reconciled myself with not telling the truth to my father because I realized it was to help him. Because if his caregiver left, I mean, the reality was that he was going to end up in a locked memory unit, and I didn't want that. I fought against that till the bitter, bitter end. And he never went to a dementia unit. We managed to keep him at home for, you know, the entirety of his decline, which is something I really wanted, but it involved lies of omission.
GROSS: You have two siblings, a brother and a sister, and there were times when you strenuously disagreed about what kind of assistance your father needed and when he needed it. And so, like, the first threshold for assistance is like, when was it time to get a caregiver? And then it was like, should it be a caregiver or should it be assisted living? What was the agreement that you had with your siblings about how a decision would finally be made? Did you all have to finally agree on the action to take?
JAUHAR: Yeah. I mean, my elder brother had sort of this policy - he said, look, we have to have consensus over these big decisions. So he and my sister decided that once the caregiver left, that my father had to go into a, you know, in a nursing home or assisted living. And my sister was out looking and sort of scouting out local assisted living places. But I was always very resistant to that. I didn't want to see my father in a place like that. So that kind of disagreement sort of continued where I was kind of the odd man out.
Eventually, when my father got very, very sick and he was placed in hospice, there was a question of whether to continue giving, you know, IV fluids because he wasn't swallowing anymore. And that was really, really important to me. And my brother and sister disagreed. And my brother ended up saying at one point, we're going to go with the weakest link, meaning I was the weakest link. And - but, you know, he said, I think rightly, that families break down over these kinds of issues. And, you know, he had seen it in his own family. And so he didn't want that to happen with us. So he wanted us to have consensus.
GROSS: Let's talk about the disagreement about IV fluids at the end, when he was in hospice. First of all, it was a home hospice or a hospice institution?
JAUHAR: It was at home.
GROSS: So the question was to continue giving him IV fluids, which would prolong his life, because if you don't have fluid - if you're not eating and you don't have fluids, the fluids will prolong your life. And I think your brother and sister felt like it's past the point where you should prolong your father's life. You're just prolonging his suffering. The hospice nurse agreed with your siblings, but you wanted to continue the IV and maybe even explore the possibility of antibiotics and further blood tests. Why did you want to keep doing that despite your siblings and the hospice nurse thinking that was a bad idea?
JAUHAR: I think there were a couple of reasons. I mean, one is I didn't want to lose my father. You know, I wanted him to stay on this earth, you know, for as long as possible, even in the state he was in. But I think the larger issue was that I didn't know what he wanted. You know, he had expressed in a sort of advance-directive letter he'd written to my brother that if we become very impaired - he used - thinking about him and my mother - we don't want any sort of extraordinary means to keep us alive. And my brother focused on that. He said that was our father's wish. And this is a man who would look at us and say, what are you doing? Like, I am defecating in the bed. This is not who I am. This is not what I want to be. And I understood that perspective. But for me, like my father looked like he was trying to hold on...
GROSS: At the end...
JAUHAR: At the end.
GROSS: ...In hospice.
JAUHAR: You know, his perceptions, or my perception of what he thought was meaningful, changed. You know, when he wrote that letter, that advanced directive, he was a well-known, world-class scientist running a genetics lab. Obviously, he didn't want to end up, you know, bed bound or, you know? But his - as his brain sort of shrank, so did his perspective about what constituted a meaningful life.
I mean, I would take him out to lunch, and he would look genuinely joyful at times. You know, he enjoyed eating ice cream. He enjoyed spending time with his caregiver, whom he eventually grew to love. You know, he liked listening to Nusrat Fateh Ali Khan. You know, there were things that he enjoyed. And my argument with my siblings was that that was his wish back then. But how can we, you know, deprive him of a chance to live when he's - when it's not clear what he wants now?
GROSS: By the time he was in hospice, though, what was he capable of?
JAUHAR: I mean, I took him out to lunch just four days before we enrolled him in hospice. He just took a tremendous downturn. It was very, very quick. And I didn't know what caused it. And for me, that was very frustrating as a doctor. You know, what's the genesis of this decline? You know, does he have an infection? Well, then we could give him antibiotics. Does he have - did he have COVID? Well, you know - like - was it just - did he pick up a cold when we were out in the rain? What is it? And I wanted to sort of investigate.
And my brother's attitude was, what are you trying to save him for? You know, he's declined so much. And the hospice nurse also felt the same way. You know, she said that, you know, you should respect his wishes when he was able to express them 'cause he can't express them now.
GROSS: Let's take another break here, and then there's more I want to talk with you about. If you're just joining us, my guest is Dr. Sandeep Jauhar. His new memoir is called "My Father's Brain." We'll be back after a short break. This is FRESH AIR.
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GROSS: This is FRESH AIR. Let's get back to my interview with Dr. Sandeep Jauhar, author of the new memoir "My Father's Brain: Life In The Shadow Of Alzheimer's." It's about how Alzheimer's transformed his father and their relationship. Dr. Jauhar is a cardiologist who directs the heart failure program at Long Island Jewish Medical Center. Did you feel at all a sense of relief when your father died, that his struggle was over, that your struggles with him were over?
JAUHAR: I did. I did. You know, it was very difficult. It was a very difficult struggle. Watching him go through that was the most difficult thing I've ever been through. It's the hardest journey I've ever taken. And as much as I fought it, fought his dying, when it was over, yeah, there was a sense of relief.
GROSS: Do you think the ordeal with your father - and with your mother, who had Parkinson's - changed you as a doctor? You have many terminal patients.
JAUHAR: Yeah. I mean, I think I'm more there. I'm more with the patients now than I, maybe, used to be. I have more sympathy for the struggles at the end of life, the sort of emotional struggles. You know, before I went through this experience, I would see a lot of death. But, you know, for me, sort of the end of life was more like, well, you know, let's put the patient on dobutamine or norepinephrine. And let's adjust this drip. And let's make sure they're covered with antibiotics. Or let's talk about terminal extubation. I mean, it was all - it was about the mechanics. And, you know, I think now I realize how difficult it is for family members. So I have - you know, I think I spend more time with patients and family members near the end of death. And having gone through this experience, I realize how hard just - even just the cessation of the patient's bodily processes. It just - it's - they're so resistant to being stopped. And as a family member, watching it is just profoundly difficult. So I think I just have a better understanding of that.
GROSS: Yeah. When your father was near death and you and your siblings were trying to figure out whether to respect his DNR, his living will that said he didn't want any extreme measures used to save his life, you wanted to investigate further what could be the cause of his decline. You wanted him to hold on longer. Do you have a DNR? And have you rewritten it since your father's death? And have you rethought how seriously you want someone to take it? If, for instance, like your father, you ended up with dementia and the quality of your life had changed, your ability to remember had changed, but you still seem to be able to find some joy in life, like, how do you know how you're going to feel? And how do you express your concerns in a living will or a DNR?
JAUHAR: Do I have a written DNR? No. I probably should. And...
GROSS: How come you don't?
JAUHAR: I don't know. I still feel like death is a ways away. But I think what I do have is, after having gone through this experience with my father, is I've expressed to the people closest to me that if I decline like him, frankly, I would want a, probably, physician-assisted suicide.
GROSS: Do you not want your children to have to be caregivers?
JAUHAR: No. You know, it involves so much difficulty and pain and sacrifice that, you know, I don't want that. You know, my parents grew up in a culture where sons took care of aging parents. And it's just part of the culture of, you know, sort of Indian, South Asian culture. But, yeah, I don't want that. I mean, it's almost a trope of sorts, but I don't want to be a burden to my family.
GROSS: Well, Dr. Jauhar, I want to thank you so much for talking with us and for sharing your story with us. You've been through a lot. And thank you for telling us about it.
JAUHAR: Thank you so much, Terry. It was great being with you.
GROSS: Dr. Sandeep Jauhar is the author of the new memoir "My Father's Brain: Life In The Shadow Of Alzheimer's." Dr. Jauhar is a cardiologist and the director of the Heart Failure program at Long Island Jewish Medical Center. After we take a short break, John Powers will review the new film "How To Blow Up A Pipeline." It's a political thriller about eco-sabotage. This is FRESH AIR.
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