More than six million Americans have Alzheimer’s disease, and that number will more than double to 12.7 million by 2050, according to the Alzheimer’s Association.
What’s often overlooked in this tally is the caregivers and family members who take care of these patients and loved ones, and the toll it takes on them.
In “My Father’s Brain: Life in the shadows of Alzheimer’s,” Sandeep Jauhar, a cardiologist, chronicles the experience of seeing his father, a renowned scientist, succumb to Alzheimer’s disease. At the same time as his father suffered from Alzheimer’s, Jauhar also lost his mother to Parkinson’s disease.
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In this memoir, Jauhar talks about his struggles seeing his father’s decline and understanding the disease and his family’s efforts to work together to oversee care. While Jauhar sees a cure for Alzheimer’s as decades away, he said the focus now must be on the caregivers and the humane treatment of those suffering from the disease.
In this book, Jauhar wrote what he wished he could have had during the experience – an honest road map to the decline and a blueprint for the disease’s progression.
Q. Was writing this book healing or traumatic for you to write?
A. It was difficult to revisit some of it. My father’s illness was the most difficult journey I’ve ever taken. There were worthwhile experiences and particularly fraught experiences. There were complicated family moments and ethical conundrums. I felt I was in very uncharted waters. There wasn’t a book that would show me the way. I was most frustrated when I didn’t know what was happening. I wrote the book I needed.
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Q. There’s a role reversal in caring for a parent. Your dad had expectations of you. Did that feel fair?
A. There was a cultural component, being of South Asian background. The social safety net there is having sons. My father made it really clear it was my brother and my responsibility to care for them. I grew up in the U.S., so there was some conflict there – what we were used to, being part of American culture, and what our parents were saying back at the family unit. My parents tried to import Indian values into U.S. culture. It was not the perfect solution. I wasn’t resentful. I can’t say we pulled it off effortlessly. I certainly have regrets.
Q. Can you talk about those regrets or what you would do differently, looking back?
A. You can’t go through this experience without having regrets. I have regrets I wasn’t as patient with my father. Even as a doctor, I didn’t know at times what was going on. So much about dementia and caregiving I didn’t know. The lessons I learned came too late. I felt it was always important to tell the truth, even if it caused distress and anguish. My siblings had different views. But I had always leveled with him. I was telling him the truth that mom died. My brother had a different idea and would say ‘Mom’s not here right now.’ That attitude my brother had was validation therapy – validate their reality and let them think a spouse is still alive. I used an older form of care called reality orientation – where you bring them back to reality. My brother was right and I was wrong. It’s not right to hurt someone who is so in anguish. I came to a more expansive view of dignity – meeting them where they are, validating their perspective. I regret I didn’t resort to white lies earlier.
Q. His irrational behavior at times must have been hard to see compared to his career as a scientist and your career as a doctor – where rational thought is so important. How hard was that to reconcile?
A. I’m the son of a father who had been a world-class scientist. It was really difficult. We kind of minimized him and who he was. I think we are gripped by hyper-cognitive prejudice that people who don’t think clearly are lesser. He was not overtly mocked, but maybe looked at as someone who had become like a child. It was very difficult. We pride ourselves on thinking rationally. It’s hard to deal with the person the way they are.
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Q. What mix of emotions – relief, sadness, panic – did you experience when he died and his struggle was over?
A. There was conflict there. One of the ethical challenges was he had an advance directive that said no extraordinary measure should be used to keep him alive. As he progressed in dementia, he didn’t seem unhappy. Basic things, like eating ice cream, seemed to make him happy. It was very difficult to decide when someone doesn’t have a quality of life. Do you look at it from the perspective of a scientist publishing in scientific journals or someone with dementia who seems not unhappy. Enrolling him in hospice was very difficult. My brother and sister wanted to follow his advance directive. But for me, I struggled that the person in front of me who never said ‘I don’t want to be alive.’ We really grappled with that. It was a big source of conflict. He did get hospice and morphine and passed away. Afterward, I missed him a lot. But I did experience some relief that this journey was over. I missed him as my father, but it was a relief not to see him in a state like that.
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Q. How did it affect your relationship with your siblings and how is that relationship now?
A. There were ups and downs. It was a roller coaster. My brother and sister discussed putting him in a nursing facility and I resisted it. These kinds of issues can tear families apart. My older brother said ‘we need to go with the weakest link’ and said ‘I don’t want to tear our family apart.’ No one, in the end, felt resentful that they hadn’t been listened to. We emerged closer from all of this.
Q. How did it change you as a person and as a doctor in terms of your views of life and dying?
A. As a heart-failure specialist, I see lots of dying. But this has absolutely changed me. I would kind of withdraw when people were dying and think that was all palliative care’s area. But really, that is a time when families need their doctor. I found it comforting when my father’s primary care physician reached out and checked on how he and we were doing. Most doctors don’t like to deal with death. But it’s during the dying process that doctors can be the most caring.
Personally, it was a really difficult journey. It was really difficult to see my father go through that. I don’t want my children to ever see me in that state. It was very painful and very difficult. I don’t think I would want to burden my children with that kind of experience. I would look toward some type of physician-assisted suicide to have a graceful exit without going through the loss of dignity that comes from Alzheimer’s. My father and I were very alike. My fear was that what was happening to him would happen to me.
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Q. Former first lady Rosalynn Carter has dementia and the numbers of cases are growing nationally as people live longer. When do you think there will be a rally cry or outrage over Alzheimer’s?
A. We’re already entering a new era where there are now drugs that can stave off cognitive decline. There are drugs – lecanemab and donanemab—that have shown some progress. There are side effects. But I’m guardedly optimistic that these drugs will be refined and improved upon. A lot more needs to be done. But before drugs are available, the focus has to be on human caregiving. We can’t rely on the pharmaceutical companies to cure the disease in the next decade or two. We have to focus on the human, caregiving side.
Q. For all the families and caretakers that are dealing with Alzheimer’s or will be dealing with this, do you have any tips or lessons for them to take to heart?
A. We need to be aware we live in a hyper-cognitive culture. We marginalize dementia. And loneliness can worsen dementia. We often marginalize patients. We need to learn how to treat dementia patients more humanely. They are still the same people – they have the same habits, predilections that remain. They’re not entirely different people. The government needs to step up and play a bigger role. Families go bankrupt trying to care for family members. Women, especially, give up careers to care for family members. This is not good for people or the economy.