My Father's Brain: Life in the Shadow of Alzheimer's
“Sandeep Jauhar is an author and physician who writes about the brain while caring deeply about the heart.”
“I knew the end was coming. All these moments together—the lunches and walks, the memories he’d neglected to transfer before it was too late, stories of when I was too young to form and retain my own memories—were going to be lost, like the ripples on a pond.”
What if you looked over your shoulder and there was nothing there? We construct our lives out of memories and dreams—an uneasy compromise between things that have happened and things we hope might occur. We cannot live our lives backward, but without a past and memories our present lives have no meaning.
Sandeep Jauhar has written the difficult memoir, the one consisting of vanishing memories. My Father’s Brain: Life in the Shadow of Alzheimer’s is about his relationship with his 76-year-old father, Prem Jauhar. It’s also a book about science and medicine. Sandeep Jauhar is a cardiologist who guides the reader through a journey that results in a better understanding of how the brain works. This search for knowledge is also guided by his love for his father.
Dementia is an ugly illness. It can slowly be detected by a change in a person’s surroundings. Early in his book Sandeep Jauhar writes: “I had not been in my parents’ home since the previous summer, but I observed right away that most of the house did not appear lived in. Soap dispensers were empty and lightbulbs needed to be replaced.”
Cognitive troubles can create mood swings and eventually a family must make the decision to have the person they love tested even while fearing what might be diagnosed. Neurologists are often the bearers of bad news.
The number of American adults that might have Alzheimer’s or related dementias has reached six million.
Jauhar’s book is not only about how the brain works, it’s also about the difficult and challenging task of caretaking. Taking care of a sick and elderly parent can make one susceptible to depression as well as dealing with new logistics and costs. Jauhar is critical of our eldercare system. Every reader should be.
In My Father’s Brain, Jauhar examines this “thing” we call memory. His writing is technical and at times a hard hat should be worn while reading. Yet the author shares his fears that what is happening to his father might one day happen to him. He shares these fears while his mother is being robbed of her life by Parkinson’s.
“As my father’s memory declined, so did my mother’s movement and balance. Her disease progressed side by side with his, just as her life had for fifty years.”
In Chapter 6, titled, “It seems we are dealing here with a special illness,” we find Jauhar providing historical information about the battle against Alzheimer’s. He writes about the research of the brain during the 19th century and how it provided the foundation for the medical contribution Alois Alzheimer would begin working on around 1901. Alzheimer’s can affect many different brain regions. A loss of brain function can lead to pneumonia, other infections, and even the loss of the ability to swallow.
One finds the personal meeting the medical in My Father’s Brain. In Part II: Scars, the second section of the memoir, Jauhar begins by writing about how his father is handling grief and the loss of his wife after 50 years of marriage. Here is a man trying to hold onto memories while slowly losing the ability to remember. In his writing Jauhar mixes tenderness with sadness. He mentions the spreading of his mother’ ashes off the coast of Long Island while his father watches the ritual. One wonders at this point which direction the memoir will take for father as well as son.
Aging even without dementia is a time for letting go. In the second section of My Father’s Brain we find Jauhar downsizing his parents’ home. Now he must sort through items that bring back memories after he has lost his mother and his father is struggling to remember. Finding an assisted living for a loved one comes with a price. It’s very expensive.
In Chapter 9, Jauhar happens to be in the Netherlands giving a book talk when he decides to use the trip to visit a nursing home outside of Amsterdam. Reading about The Hogeweyk in the small town of Weesp will give one a new degree of hope that there are better ways to take care of our elders. At The Hogeweyk they practice what is called therapeutic deception.
It’s a way of adjusting and dealing with dementia the way it is. It’s acknowledging where a person is without passing judgment. Upon leaving, Leo (one of the founders of Hogeweyk) says to Jauhar, “Trump lives in his own reality, and we have come to accept it. Why can’t we be as patient and accommodating with demented patients?”
Should one lie to a person suffering from Alzheimer’s? If one can’t determine what the truth is or remember what it is, is it wrong to be dishonest with that person? What happens when the person who is ill becomes violent and combative with their caretaker? Jauhar’s honesty is what makes his memoir a book to share with others. In the United States, one out of six men and women who have dementia live in a nursing facility. Jauhar’s has to decide when he will have to move his father into one. Sadly we might all one day be confronted with this responsibility; knowing it is coming doesn’t make it any easier to accept.
Jauhar decides to keep his father in his own home. His family is blessed by the care provided by Harwinder, a lifetime family friend. She will be there until there is eventually the need for hospice care. Jauhar asks, “Who are we, as doctors, sons, or caregivers, to decide which truths someone can handle?”
This is a question not just for the person battling Alzheimer’s but for all of us who in our wellness now know this wellness one day will come to an end. Sometimes we pick up a memoir not to read about someone’s life but to better understand our own.
Sandeep Jauhar is an author and physician who writes about the brain while caring deeply about the heart.