Around 2013, author and cardiologist Sandeep Jauhar started noticing some worrying changes in his father. He would forget the code to their safe; he couldn’t remember what he did the day before and would get lost driving home. Eventually, his father was diagnosed with Alzheimer’s disease. In his new book, My Father’s Brain: Life in the Shadow of Alzheimer’s (https://books.apple.com/us/book/my-fathers-brain/id1623194942), Jauhar chronicles the challenges of caring for a sick parent and explains where medicine is today when it comes to treatment for this incurable illness. Below are excerpts from Jauhar’s interview with Apple News In Conversation (https://podcasts.apple.com/us/podcast/apple-news-in-conversation/id1577591053?i=1000654352079) host Shumita Basu.
Get a transcript (https://podcasts.apple.com/us/podcast/apple-news-in-conversation/id1577591053?i=1000654352079) of this episode here (https://podcasts.apple.com/us/podcast/apple-news-in-conversation/id1577591053?i=1000654352079).
ALZHEIMER’S AND THE BRAIN
SANDEEP JAUHAR: Dementia comes from the Latin dement — loss of mentation, loss of thinking — and there are several different types. Alzheimer’s is the most common. [It] affects at least 6 million Americans, and that number will probably double or triple … in the next 10 to 20 years.
SHUMITA BASU: Can you explain what we know about what happens to the brain when you’re experiencing Alzheimer’s?
JAUHAR: Alzheimer’s typically starts in the part of the brain that is responsible for encoding memory … So when Alzheimer’s affects the hippocampus, short-term memories become obliterated. Long-term memories that the hippocampus has already placed into the cortex, they remain relatively intact … It moves [from the hippocampus] to the part of the brain that is responsible for emotional processing, called the amygdala … So, typically, memory goes, emotional balance goes, patients become more volatile. And eventually the disease spreads to the parts of the brain that are responsible for self-awareness and recognizing impairment.
Sandeep Jauhar’s father, Prem Jauhar, and mother, Raj Jauhar. Photo Credit: Jauhar family
CHALLENGES OF CARE
JAUHAR: Out of the $200 billion that we spend on dementia, Medicare funds $11 billion. The remainder is families paying out of pocket. We’re a family of doctors. We had resources to hire people to help my father. I still just cannot fathom not having the resources and shouldering the burden entirely yourself. It’s mind-boggling, because it was so hard even with the resources that we had. If you don’t have resources, it’s a nightmare.
BASU: You write a lot in this book about the sibling dynamic. I think this is going to be very familiar to a lot of people who’ve ended up in this kind of situation where you’ve got more than one siblings’ interests and opinions to keep in balance. Can you tell us a little bit about how the three of you decided to go about decision-making when it came to your dad?
“Dignity is not just telling the truth, it’s meeting [people] where they are in their own minds and in their own lives.”
—Sandeep Jauhar
JAUHAR: I didn’t want my father to go into a nursing home. That was incredibly important to me. And my siblings — my brother and sister — even though they loved my father equally, I know that, they were more realistic. They said, Look, he’s becoming very volatile. He doesn’t recognize he needs help. He’s becoming violent with his caregiver. He’s going to have to go to a memory unit. And I said, No … we’re not going to have him leave his home. And my siblings did, eventually, go along with my wish to keep my father at home.
And I capitulated too. I mean, one of the things that they felt very frustrated with me [about] was that I would always tell my father the truth, even if it upset him. I said, I don’t want to lie to him. Both because lying is not a good thing and it’s not a dignified thing to do — this was my perception, both as a doctor but also as a loving son … It took a long time for me to come around to what I think is really a commonsensical stance, which is … dignity is not just telling the truth, it’s meeting [people] where they are in their own minds and in their own lives. So eventually I came around to the white lies. I came to appreciate that lying is different when you’re doing it for your own benefit or if you’re doing it for someone else’s benefit.
SECURITY VERSUS FREEDOM
JAUHAR: I think that in this country there’s sort of these two competing forces in eldercare between maintaining security and autonomy. We tend to err on the side of security. I understand that … [But] I think most memory units in this country don’t allow for a lot of humanity in caring for patients. I went to the Netherlands to look at the dementia village, just outside of Amsterdam, called the Hogeweyk, and they have a very different conception. They say people with dementia are still human beings and we should give them basic freedoms.
“Safety and security are important, but they shouldn’t come at the cost of allowing someone to be human and to have basic freedoms.”
—Sandeep Jauhar
They utilize a kind of caregiving strategy called reminiscence therapy, where they put patients in homes that have, let’s say, cultures that the patient might be familiar with. So if someone was a farmer, they have a craftsman home, where the person is housed with people with like-minded interests. That’s a deeply human, humanistic way of being.
When I went on a tour of this facility, one of the guides said, In America, dementia patients get locked up in memory units. Here we let them wander. And people say, Well, what’s going to happen? You have a pond. They’re going to fall into a pond. But he said, Dementia patients aren’t stupid. They’re not going to climb over a fence and fall into a pond. And it’s just a different perspective. It’s that safety and security are important, but they shouldn’t come at the cost of allowing someone to be human and to have basic freedoms.
END OF LIFE WITH ALZHEIMER’S
JAUHAR: I took [my father] out for dosas [a South Indian pancake] a week before he died … This was in early March 2021, and about three, four days later, he had a precipitous decline and we didn’t know why. And I came to understand that this very often is what happens with dementia … Eventually, my father stopped eating and so we put in an IV to give him saline, just so he wouldn’t get super dehydrated, and the thought was maybe the dehydration was causing this decline. It clearly wasn’t because we gave him fluid and he didn’t get any better.
“I’m a heart-failure specialist. I deal with a lot of death. But it’s different when it’s your own parent.”
—Sandeep Jauhar
And so he was enrolled in hospice and then the big question became, Do we take out the IV and stop giving him fluid and let nature take its course? And I struggled with that, even though I agreed with the hospice. I vacillated at the end. And I didn’t want to lose him … But eventually it became clear: The hospice nurse spoke with me and really
helped me understand that if my father was able to communicate, he’d probably say,
It’s time to let go, Sandeep. It’s the end now.
It was hard. It was horribly difficult to make those final decisions. I felt totally unequipped, even as a doctor. I’m a heart-failure specialist. I deal with a lot of death. But it’s different when it’s your own parent.
