Sandeep Jauhar

I found this memoir to be insightful, despairing, sad, strong, and heartbreaking. Jauhur chronicles his father's battle against Alzheimer's, and all the difficulties that come with the diagnosis in America--namely costs. The struggle to find, provide, and afford appropriate care is incredibly difficult; adding in laws about decision-making, power of attorney, control of finances, and driving; as well as the attempts to wander and refusal to eat that commonly occur at some stage of the show more disease.

As doctors, Jauhur and his brother both thought they knew the medical system, but even they were overwhelmed. They were fortunate to have well-paying jobs and parents who had their affairs in order--and they and their sister were largely on the same page about care. They had money, they lucked out with a fabulous caregiver--and still they struggled emotionally and practically.

Sprinkled throughout the book Jauhar includes chapters about Alzheimer's disease itself. The history and understanding of it, diagnoses and treatments. These chapters got a little too science-y for me, but they were still interesting. I found this book to be well put together, with history, memories, events, frustrations, and so forth very well balanced to create a book that is a memoir, a history, and a warning.

Jauhar did his own narration, and it was very good. show less

This deeply moving and often heartbreaking book describes the author’s experiences of caring for a parent with dementia, starting from the first signs that something was wrong with his memory, told from the standpoint of a physician who realizes that his experience as a cardiologist and expertise in consulting the medical literature are of little help in caring for and relating to his father and his siblings, whose opinions about what should be done for their father were often at odds with show more his own.

Dr Prem Jauhar was born into extreme poverty in India, but he overcame numerous obstacles there and in the United States to become a highly respected agronomist at North Dakota State University. At the time of his retirement in 2014 he was already showing signs of memory loss, but he was a proud man who refused to admit that his symptoms were anything other than normal age related changes. In keeping with the culture he grew up in, he and his wife moved to Long Island to be close to their two sons, who were both practicing physicians there. Prem’s wife, who was afflicted with Parkinson’s disease, convinced Sandeep to take him to see her neurologist, who diagnosed Prem with mild cognitive impairment, which is often a precursor to Alzheimer’s and other dementias. Instead of accepting this diagnosis Prem, never am easy going man, became progressively more irascible with his beloved wife, the innumerable caregivers who his sons hired to help both parents, and his children. Frequent crises at home took a great toll on Sandeep and his older brother Rajiv, along with their sister Suneeta, and Sandeep frequently butted heads with his siblings about what ideally should be done for both parents.

Prem’s condition progressively worsened, in keeping with the expected course of Alzheimer’s disease, and Sandeep describes those final days with him, as the siblings differed but eventually agreed on the best way to ensure that their father was comfortable in his final hours.

"My Father’s Brain" is filled with interesting historical information about Alzheimer’s disease; however, what sets it apart is the honesty with which Sandeep expresses his struggles and frustrations with his father and the disease process, which I could easily identify with as the primary caregiver of a mother with dementia, and that combination elevates this book above others I’ve read about this terrible condition. show less

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 show more 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. show less

Sandeep Jauhar has been fascinated by the heart since he was a small boy. Lucky for him that he has been able to pursue a career as a highly trained cardiologist. And lucky for us that he is able to write. This book is a relatively small volume and the writing begins rather simply. As the book progresses he subtly introduces more complex, thought provoking ideas.

History and culture imbue the human heart with a great deal of metaphoric and physical significance. To many it embodies the seat show more of emotion, the core of the soul, and it is the linchpin between life and death. Because of the heart's physical vulnerability, medical treatment was largely unexplored until the end of the 19th century. Dr. Jauhar chronicles the history of experimental and clinical cardiology with details of the (mostly) men who doggedly challenged physiological frontiers, sometimes to the point of their own demise.

The central part of the book looks at the heart as a complex machine, with each chapter focusing on aspects of that machine: as a pump, a generator, wiring, etc. The writing is clear and accessible to a layperson. His goal is to foster understanding in the general public and he does that well. He takes us step wise through the development of the clinical understanding of those aspects of the heart and the treatments derived from that understanding.

Woven through the narrative is the author's family history of heart disease and the impact those events on him and his family. Human emotion and the heart is a secondary theme throughout the book and he ends the book on that chord. After many years of clinical practice during rapid advances in surgical and pharmacological treatment of the heart, the author opines that we are at the point of diminishing returns in those areas. Perhaps the next great advances in the prevention and treatment of heart disease will come from our ability as a species to address the psychological, social, and political roots that lead to promoting the health and well being of our hearts. show less