My Father’s Brain

Title: My Father’s Brain – Life in the Shadow of Alzheimer’s
Author: Sandeep Jauhar
Publisher: Penguin Viking, 2023 (First)
ISBN: 9780670097913
Pages: 238

The mind is the single organ that makes an individual. Located in the brain – or you can take it to be the brain itself – it runs the software that animates a person. Without it, he turns into a vegetative state. Alzheimer’s disease is the most dreaded illness that afflicts this vital organ. An affected person loses memory first and then bodily functions in a gradually degenerating spiral from which no cure has been found yet. And it is fairly commonplace too, as evidenced by the increasing life expectancy all over the world. By the middle of this century, 100 million people would be affected by this malady all over the world, trailing only to heart disease and cancer. The resulting condition called dementia is actually more feared than cancer. In fact, it is deemed more terrible than death itself. This book presents a first-hand experience of an Indian medical doctor settled in the US, when his scientist father developed the disease and died around seven years after its detection. It is the painful story of the irreversible descent to death, punctuated by several episodes of strife and an undignified existence. An unhappy trait of the disease is that a patient can continue indefinitely on provision of nourishment intravenously even long after he has lost the ability even to sit up straight. Sandeep Jauhar is a cardiologist of Indian origin settled in the US. He is the author of many acclaimed books on medical topics. He writes regularly for the opinion section of the New York Times.

Being a physician himself, the author understood the problems his father was facing right from pathology even though the knowledge helped very little in giving care to a person who was losing the moorings that tied him to family and society. Jauhar provides an easily comprehensible description of what was happening in the brain when Alzheimer’s takes over. The hippocampus and its associated structures responsible for processing short- and long-term memories are often the first structures damaged in Alzheimer’s which is why they often cannot remember recent events like what they ate for lunch though they may retain memories from childhood or early adulthood. As the disease worsens, memory is completely obliterated and the person enters a state of perpetual present and unable to remember anything that can relate them to a family member or intimate friend. Apart from loss of memory, it leads one incapable of normal thought or to feel empathy to others. Alzheimer’s unravels the brain almost exactly in the reverse order as it develops from birth. Initially, patients can no longer walk unaided. Then they cannot sit up without assistance. Next they lose the ability to smile. Finally, they cannot even hold up their own heads. The author also presents a gruesome side effect of the symptoms. Amygdala, which is responsible for the processing of emotions, is only a few millimetres away from the hippocampus. Disease in the latter quickly travels to the former. So, often amnesia coexists with emotional outbursts out of proportion to the events that triggered them. Hence, lies and deception may be a shortcut to navigating such fraught moments. Anyway, they cannot remember what was said a few minutes earlier. The author discouraged this option at first, but slowly saw the logic and fell in line with his other siblings and caregivers.

The book presents a short primer on development of the awareness of old-age dementia as a physical process. It describes the studies of Alois Alzheimer in the early decades of the last century. He found that senile plaques of the beta-amyloid protein were getting deposited in brain tissues. The disease was first described in a middle-aged patient and it was thought it differed from normal, senile dementia. This outlook was changed by the 1970s and both were proved to be one and the same disease. Writing from the US, Jauhar observes it to be the fourth most fatal disease among elderly Americans. Former President Ronald Reagan was also a victim of it whose cognitive difficulties began to be evident in the last few years of his presidency. Dementia remains the only chronic and widespread medical scourge for which there are no effective treatments. What the patient gets today has changed little from what Alzheimer was able to offer his patients in 1901.

Having a close relative with Alzheimer’s disease is an excruciating experience, probably more for the caregivers than the patient himself. This is made all the more worse if the offspring have their own reasons in slackening care for their parents. This includes dwindling time, growing responsibilities at work, social commitment or perhaps insufficient inclination too. Presence of hallucinations or delusions in the patient increases the risk of disability, institutionalization and death. As the disease spreads to more areas of the brain such as hypothalamus, they will lose the sense of hot and cold and may wear woollen cloths in summer leading to other complications like dehydration. Even though the disease cannot be cured, the author suggests some methods by which its onset can be delayed. Higher social interactions such as relationships, environment and family support may lessen the impact of dementia. Studies show that people who were widowed experienced mental decline that was three times faster than that of similar people who had not lost a spouse. Getting enough sleep, engaging in social and cognitive activities that stimulate the brain, avoiding smoking and heavy drinking and minimizing stress also would help. But this sounds like the recipe for a healthy living and not much more. It shows the helplessness of the medical establishment in tackling the malady. Jauhar also briefly pauses to reflect on the legal and ethical aspects of terminating the miserable lives of demented persons. In Scotland in the year 2003, a man was acquitted with only a mild censure for smothering his demented wife with a pillow. She was 85 and they were married for 55 years.

The deterioration of the author’s father rivets the attention of the readers and brings to the foreground the stress of his three children to cope with the situation. He was a renowned botanist specialising in better-yielding varieties of wheat. He was a professor who published numerous papers on plant cytogenetics. Apart from the brain, there were no other physical illnesses for this 79-year old man. The portrayal of the shrinking brain and its manifestations in the degeneration of imagination, perceptions, ambitions and expectations haunt the readers. Within minutes or even less, his mood will swing from rage to resignation and even joy. His ability to forget, which is actually his disability to remember, was a curse as well as a blessing, because he will immediately forget whatever nonsense was said to placate him. The high cost of healthcare and assisted living is another factor that stands out in the narrative. Two of his sons were specialist medical practitioners yet even they struggled to meet the expenses.

This work is not to be taken as a medical primer on the disease. Its primary aim is to present the affected family’s concerns and anguish. The book clearly captures the strain in relationships between the siblings and their father as the disease progressed towards the end. It seems the in-laws were the first to back out of the rigour. This is ameliorated to some extent in the American setting in which parents lived separately from their children. The brothers and their sister often quibbled about how to proceed in caring for their father. To add to the woes, their mother developed Parkinson’s disease and died some years before his death. The atmosphere becomes poignant when the final days arrived which is very touching for those who have already lost one or both of their parents. The dilemma became all the more painful when one of them wanted to end the suffering by withdrawal or medication. In the end, the saga came to a sad but merciful end when death was assisted by withdrawal of fluids while administering short doses of morphine.

And, readers feel that one of their close relatives has died.

The book is highly recommended.

Rating: 4 Star