Dr. Sandeep Jauhar’s ambitious and eccentric father, Prem, grew up poor. He was eight years old when, during Partition, his family fled what is now Pakistan for India. Living for a time in wretched border camps where some family members died, they eventually settled in an area south of New Delhi, their home a one-room flat with no electricity or running water. Evidently an excellent student, Prem conscientiously did his homework under the streetlights. His mother later sold her jewelry to pay the tuition and necessary bribes for him to attend university. In the 1970s, he entered the US under the category “scientists of exceptional ability,” bringing his wife and children with him. A world-class geneticist, he ran a lab at the University of North Dakota for many years, working well into his seventies.

Before his retirement in 2014, however, there were indications that all was not as it should be. In 2012, the university instituted a requirement for faculty to publish two papers per year. Prem had 100 peer-reviewed papers to his name and in the past would probably have thought nothing of writing a couple more; now he chafed at the idea. He was also staying late at the lab to complete work, and his housekeeper later told Sandeep that Prem had gotten lost on the way home from work one night. A former neighbour phoned to express concern about Prem’s financial judgement. A few months later and now retired, the man who’d always been so careful with money was bouncing cheques, sending cash to random charities, and getting lost on Long Island where he’d relocated with Sandeep’s mother to be close to their sons. An easier, more sensible move to Minneapolis, where their daughter and her family lived, would never have occurred to the senior Jauhars. In traditional Indian families, elderly parents look to their sons for assistance. Rajiv, the eldest, and Sandeep lived in New Jersey. These were fully Americanized children. Growing up, they’d had a fraught relationship with their father, especially over drinking and dating. A sense of familial duty had been diluted, and they had been eager to get away.

Both cardiologists, Rajiv and Sandeep knew plenty about the heart; the brain, not so much. Their parents’ conditions would change that. Their mother was quite disabled by Parkinson’s disease and soon required an aide, and their father’s cognition was in fairly rapid decline. An appointment with a neurologist in November 2014 brought him a diagnosis of mild cognitive impairment. This condition affects one in five elderly adults. Twenty percent of those diagnosed with MCI go on to develop dementia. Prem Jauhar would be one of them. For close to seven years, Sandeep, the son most like him in temperament, would encourage, plead with, and threaten his parent. He writes that he loved him, cared for him, and hated him, too. Trying to retain his own memory of his father, he “eventually came to know more about him—who he was, his likes and dislikes—than . . [Prem] knew about himself. That was a strange responsibility to carry.” The author says he reminded everyone that his father was more than his disease, but he also intimates more than once that he failed him.

In an effort to understand what was happening to Prem, Sandeep read widely—not only the medical literature, but also works related to the subject by sociologists, anthropologists, philosophers, and ethicists. He has expertly distilled this information and judiciously inserted it into the often moving story of his father’s decline (and his mother’s too). He tells about conflicts with his siblings over their father’s care. Principled Sandeep feels that out of respect, Prem deserves to be told the truth, his delusions corrected. Rajiv and Suneeta are far more pragmatic, willing to go with the flow, employ “therapeutic deception,” and allow their father his distorted versions of reality. Anything to avoid unproductive upsets and arguments. After their mother dies, there’s conflict between the three over placing their dad in a long-term-care facility. Knowing Prem would be assigned to a locked ward, Sandeep is opposed to the idea. Luckily, the family finds a gem of an Indian care giver, Harwinder, who takes a lot of abuse—verbal and physical—from Prem. He becomes sufficiently agitated and violent at times that a psychiatrist experiments with a range of psychoactive drugs to stabilize his mood. Harwinder comes to regard her charge as a father and perhaps has as much say as his children when it comes to end-of-life decisions.

Some may not appreciate the informational material woven into the memoir, but I really valued it. Among the many topics the author addresses are:

1. the plight of (unpaid) family caregivers—i.e., the emotional and financial cost of caring for a family member with dementia in the US. Jauhar says a typical family spends $80,000 USD annually for care for their loved one with Alzheimer’s disease;

2. how memory works and the important role of the hippocampus, which is typically the first part of the brain to be affected by Alzheimer’s;

3. the history of Alzheimer’s disease. Significantly, only in the 1970s was a consensus reached that this disease and senile dementia were one and the same thing. In the early twentieth century, Dr. Alois Alzheimer’s first patient, Auguste Deter, was still relatively young—50– when she became seriously ill: deluded, disoriented, and amnesiac. She died at age 55. For many years after, Alzheimer’s was considered a rare disease, striking those in middle age. It’s now known that the early- or young-onset form accounts for only 1% to 2% of total Alzheimer’s cases.

4. what’s going on in the brain. Most have heard about the beta amyloid protein plaques and the tangles of tau protein that destroy neurons, but the cause of Alzheimer’s still hasn’t been determined. The disease may be owing to inflammation. Recent evidence suggests that overactive immune cells in the brain, microglia, play a role. Bacteria that cause gum disease and herpes viruses also appear to be implicated in plaque build-up.

5. the personhood of the Alzheimer’s patient. Most definitions of personhood, going back to David Hume and John Locke, are very cogno-centric. According to Locke, a person is a “thinking, intelligent being, that has reason and reflection, and considers itself, the same thinking thing, in different times and places.” Jauhar notes that some modern philosophers have extended this idea. Derek Parfit, for example, has observed: “a person can cease to exist some time before his heart stops beating” and, under such circumstances, “we have no moral reason to help his heart go on beating, or to refrain from preventing this.” Peter Singer concurs, opining that euthanizing “neurologically devastated infants or adults with advanced dementia is no great moral transgression.” On the other hand, social psychologist Tom Kitwood expresses views which clearly resonate for the author. Connections, interactions, and relationships give life meaning. “Human beings,” Kitwood writes, “exist not only in an inward world but also in a public space.”

I appreciate Jauhar’s efforts to bring his experience with his father into the “public space.” I found My Father’s Brain a rich and rewarding read that is not without intense poignancy.

Happy to highlight this new release in “Lived Experience,” a round-up of new and notable memoir and autobiography in the Books section of Zoomer magazine for April. (see column and mini-review at link)

I just happened to stumble across this book while perusing netgalley one evening and I think I felt compelled to request it because while not only does the topic of Alzheimer’s and dementia fascinate me, but my own family is currently experiencing the mental decline due to dementia of a very beloved family member.

I believe dementia is one of the absolute worst things to inflict an otherwise healthy individual. It’s heartbreaking, infuriating, and gives you a feeling of utter helplessness. I don’t wish this disease among my worst enemy. Jauhar’s account of supporting his parents through his father’s mental decline was such a raw and honest telling and he didn’t sugar coat anything. Especially not how he personally struggled so much with accepting his father’s situation and just how stubborn he was in facing the reality of it all.

Jahaur is a not only a writer, but he’s also a physician (a renowned cardiologist) so he does a great job of weaving in scientific data and information on Alzheimer’s disease amongst his own personal experience.

Overall, this was a quick read and perfect for anyone wanting to read a bit more on Alzheimer’s while also getting an intimate story of the toll this disease takes on everyone involved.

Thanks to Netgalley for a digital copy for review. All thoughts my own.

My Father’s Brain by Sandeep Jauhar is a personal memoir that explores the effects of Alzheimer’s disease on the individual and the family. As a physician-writer, Jauhar is well-positioned to weave together the narrative history of Alzheimer’s disease and dementia with his own experience as a son and caregiver.

One of the refreshing elements of this book is Jauhar’s honesty, sparing nothing in his portrayal of his father’s illness. There are two parts to his honesty - the first is the portrayal of the insidious and relentless progression of Alzheimer’s disease on his father. This is in contrast to many popular portrayals of Alzheimer’s disease, which can gloss over elements like toileting and inappropriate behaviors that can be seen as shameful. Jauhar helps us recognize and normalize these signs as part of dementia, In separating these elements of disease from the person, I felt this actually helps maintain his father’s dignity more than an attempt to avoid discussing these.

The second part of his honesty is in readily admitting his own faults and blindspots as he comes to term with the diagnosis and how it changes his father. Despite his privileged position as someone who is both medically-trained and well-off financially, Jauhar shows how unprepared he is for the all-consuming work of caregiving. He gives us permission and grace to experience the same conflicting emotions he experiences as part of the long grieving process that comes with the life-changing diagnosis of Alzheimer’s disease and the constant loss that comes afterwards.

Increasingly, our society is recognizing the effects of Alzheimer’s disease on an entire generation, but literary treatments of this illness are only starting to emerge. My Father’s Brain is both medically accurate and poignantly and sensitively written - the first of many texts I’ve read that has done so. It can be an emotionally difficult read, but I recommend to all who are interested in this subject.

Thanks to @fsgbooks for the eARC via @netgalley. For further reading, I also recommend The End of Alzheimer’s by Jason Karlawish.

This is among my most painful reads of the year. A heart-wrenching account of how Sandeep Jauhar, his brother and sister try their best to cope with their dad’s descent into Alzheimer’s.

Sandeep Jauhar is a cardiologist, and so is his brother Rajiv. Their dad is a proficient plant geneticist who has contributed significantly to research with several publications to his credit. He migrated from India to the US, doing well in his profession largely, though he has had a few professional grudges. Since Sandeep & Rajiv practice in New York, they get their parents to move closer to them in Long Island in 2014. Sandeep’s mother is diagnosed with Parkinson’s first, and gradually her movements become limited. They also notice that their dad is getting to be forgetful and realize he has Alzheimer’s. They find there is very little they can do as the symptoms become progressively worse. Sandeep’s mother passes away first and this seems to accelerate his dad’s deterioration. The brothers and their sister Suneeta try to maintain their dad’s independence by appointing a help Harwinder who will stay with him most of the time. Sandeep does wonder if the individualistic culture in the US (as opposed to the more family social culture in India – though that is also changing) coupled with the tragedy of his mother’s demise accelerated his dad’s progression. There is evidence that loneliness is generally a setback for mental illness. In a few years the symptoms are quite severe, though he does recognise his children right till the end (though in one instance he blurts that Sandeep is probably a nephew). The sons try to keep their dad engaged with walks, drives and lunch/dinner outings to places he liked such as the ‘House of Dosas’. By 2021, there is nothing more they can do.

The book is largely about how the family tried to cope with their parents’ illnesses, and makes for very painful reading. Despite being in the medical profession, the brothers realize there is no worthwhile cure to reverse the disease once it sets in, and find themselves lost on what to do. Sandeep visits a community setup in Netherlands specifically for people with dementia. As the incidences of Alzheimer’s are spiralling, possibly more such facilities will become common. There is a lot of frustration as their dad gets more forgetful, confused and increasingly disoriented. They debate whether assisted living would be better but conclude that would be tough as well, and their dad would most likely resist it strongly. There is some brief background material around the disease and treatment options recommended generally.

The tone is very frank, the descriptions detailed, and toll the disease takes on everybody including near and dear ones really hits you.

While the search for a pill to cure the disease has so far not met with much success, I recommend the book “The End of Alzheimer’s” by Dale Bredesen, which has a lot of sensible advice on lifestyle, diet and supplements.

My rating: 4.25 / 5.