Love will be the one great memory
- col-leslie-pearce-keating
- November 20, 2023
- 470
Over the past five years, I have spent a lot of time thinking about my mother’s mind. She suffers from vascular dementia, which is an affliction caused by reduced blood flow.
I remember all too well the gradual emergence of Mom’s dementia. Physicians blamed the mental changes on aging, but her falls seemed to be a contributor. In fact, with Coumadin on board, her entire upper face was purple after one fall. Mom was ashamed about that accident, but the stroke that took her from her home years before had stolen her ability to walk, even when using a walker, or merely transferring from a wheelchair to the bed. Although her injuries frightened both her and us, we began to see evidence of memory loss during that time.
The pandemic was another game-changer for Mom. Her family couldn’t be with her for over a year. I once read about orphans during WWII who died despite the nourishment and care they received. What they lacked was loving touch. During our weekly visits through Plexiglas, I began to hear questions from Mom: “Who are you?” When I finally got into the nursing home, she clung to me like someone drowning. Now, years later, she says I am the “nice woman who decorates her room,” denying her “baby” could be an “old woman” like me.
The hurt involved in dealing with a dementia patient is life-altering. After almost four years of weekly FaceTime calls from Mom, last Saturday I was relieved when the nursing home’s I-Pad battery died, and we were unable to visit. I told myself she was sleeping.
Perhaps that is why I relished Sandeep Jauhar’s touching memoir, “My Father’s Brain: Life in the Shadow of Alzheimer’s.” Jauhar, a cardiologist, tells the story of his failing parents: his mother to Parkinson’s but mostly his father’s battle with Alzheimer’s. As a physician himself, he gives in-depth but digestible medical information about his father’s demise between storytelling. His dad, a Ph.D. scientist, transforms from a world traveler to a man who loses his way home from CVS, just a mile away. In Jauhar I found a kindred spirit, a fellow traveler in the sad, confusing landscape of dementia.
As I read the book, I realized once again that my mother is end stage. She is having great difficulty swallowing and often sleeps continuously even while being fed. She has lost a great deal of weight. Her tongue and mouth are almost always in motion, like an infant’s. Or as Jauhar says, “At stage seven, the final stage, patients need assistance with virtually every aspect of daily living.”
Mom has been bed-bound for many years. She is oblivious to her diaper being changed or company coming into her room. In other words I have been losing her for a long time. Dr. Day at Washington University in St. Louis told Jauhar, "(With dementia), eventually the whole brain is affected. Patients generally can’t speak.” Which Mom seldom does. If she does speak, she often makes no sense at all.
What I admired most about Jauhar’s book though was his fierce love for his father coupled with the explanations he gives as a somewhat baffled physician. In addition is the perception of the author as a son, a son whose perfectionist father suddenly cannot remember the difference between a brake and a gas pedal but still insists he can drive. Although his father no longer remembers the tools of his livelihood, he can surprisingly recall his wife when she was young or his childhood nickname for his younger boy. The heartbreak is palpable, and the author allows us into that pain and helplessness with heartbreaking gallantry.
Last week a new palliative care nurse called my sister. He asked if she realized how bad her mother was doing. My sister wrote me a tearful text. “What more could we do?” she asked. And that is the hardest part — the part Jauhar expresses so eloquently in his intense discussions with his siblings — for with this disease, even when you are doing all you can, it never seems like enough. And then Jauhar’s father dies.
The author says, “As he drifted away and people began to wail, I experienced a strange remembrance. That sunny March morning as I gripped his lifeless body, for some reason I saw him running beside me. I was pedaling furiously down the rutted path, flying over sticks and weeds as my father kept pace to make sure I did not fall. I know it didn’t happen this way: I can’t imagine that it did. But it is my memory now. I’ll keep it.”
That is how Jauhar remembers his father — with great love, the same way I will remember my sweet mother.