Grow Through It: Health Issues and Ethical Dilemmas
Sandeep Jauhar, MD, author of My Father’s Brain: Life in the Shadow of Alzheimer’s, describes his father’s mental deterioration due to dementia and ultimate diagnosis of Alzheimer’s disease.
Jauhar and his siblings were getting unmistakable signs that their parents needed help. His mother had Parkinson’s disease and his father was showing troubling signs of cognitive decline. Jauhar’s father would tell the same story, forget what he had for lunch, and couldn’t navigate around town.
Everyone seemed to be in denial. Until one day, his mother told a story about his father getting lost while driving, stopping the car on a busy street, and trying to flag people down to get directions home.
It was Jauhar’s mother who asked if he thought his father had Alzheimer’s and asked him to take him to a neurologist for an evaluation. The doctor diagnosed his father with mild cognitive impairment, the early stages of Alzheimer’s, but it was not very early after all.
Jauhar got through it by learning as much as he could about the disease. He was used to using rational thought to manage troubling situations. He researched and wrote a book that explores the neurobiology, psychology, and philosophy of the disease.
He acknowledged how frustrating it can be to care for someone with Alzheimer’s. His father was a prisoner of his declining, decaying mind due to dementia, but Jauhar was a prisoner of his rational mind too.
Jauhar learned not to remind his father that his wife (Jauhar’s mother) had died, and even pretended that she was just out of the house. He came to learn that this ‘validation therapy’ was the most humane, as it didn’t cause pain over and over again when his father would forget his wife had died.
Jauhar also experienced an ethical conundrum of whether or not to follow his father’s end-of-life wishes from his advance directive from 20 years ago –when his father seemed content now living with Alzheimer’s.
His advice to others in a similar situation is to try to find common ground with family members during this challenging time. Also, to learn about the disease so that you understand what is in store for you as it progresses. And assign a health care proxy before you get sick so you can share your overall wishes for end-of-life decisions.
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