OPINION:
What could be crueler than a disease that steals our memories? That fatally undermines our very capacity to think.
Which is why, according to a Harris poll conducted for Edward Jones, Alzheimer’s is the greatest health fear of older Americans, though heart disease, cancer and other afflictions kill more. The specter of an incurable disease that slowly strips us of our very humanity elicits a singular dread.
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For centuries until German physician Alois Alzheimer diagnosed a patient known simply as Auguste D. in 1906, we didn’t have a name for it, other than senility, which is how my family explained my maternal grandfather’s decline, just the unfortunate vagaries of an aging brain.
I was very young, but I remember how Pop-Pop would bestow a quarter on me whenever I visited him at my aunt’s house, where he had gone to live, and as his thinking became more confused, he would often ask me if he’d remembered my quarter. I’d shake my head in mock shyness and shamelessly accept a second and even a third quarter, thinking it was all a game. Pop-Pop died from a fall before he needed advanced care, probably for the best.
But his three daughters — my mother was the youngest — would all die in memory care. There were also three sons, two of whom passed before symptoms typically emerge. The third developed clear signs before a stroke killed him.
It is no wonder then, that every misfire of my memory sparks a minor frenzy of anxiety as I consider my own neurological fate. Neither of my older siblings (I’m the youngest) has shown indications of dementia, which only causes me to selfishly worry that I might be the one on the short end of a genetic algorithm.
Take the other morning starting up my coffee maker. I forgot to put my cup in place, producing a small flood of “Tanzanian Gold” across the kitchen counter. Immediately I recalled a visit with my mother years earlier when she forgot the 10-cup carafe under her Mr. Coffee. As the coffee spilled everywhere I couldn’t help noticing my mother’s vague bewilderment. She struggled to remember where she stored the carafe. It was heartbreaking, and dealing with my own coffee mess prompted a flash of grim anagnorisis.
Recently I’ve had many disturbing moments like this. How could I forget what show I was watching during a commercial break? Why have I lost so many people’s names? Where did I hide my passport? Why did it take me 10 minutes to find a coat that was hanging right in front of me the whole time? Yes, maybe just the vagaries of an aging brain. But considering my family history, maybe something ominous.
I’m seeing a neurologist in the hope that I can know more. It’s not a choice everyone would make. People in my position are split between wanting to know and not wanting to know. Yet isn’t wanting to know what makes us human? That primal yearning. Wanting to know ourselves. Wanting to know love. Wanting to know God. Wanting to know the future.
We now understand that early symptoms of Alzheimer’s can appear decades before a clinical diagnosis is possible. Still, differentiating benign cognitive decline from inchoate dementia is not simple or even definitive. It can be the entrance to a long dark tunnel or just a slight dimming. I’ve undergone neuropsychological testing and several MRIs of my brain without a clear answer, except the suggestion of mild cognitive impairment. Still, in the clinical notes after my last visit the doctor wrote, “A diagnosis of Alzheimer’s cannot be excluded.”
What does that mean for my future?
Having watched my mother struggle with Alzheimer’s I know that it begins with a snowball and ends in an avalanche. For now, there is no stopping it, and only stopgap pharmaceutical treatments. I try to abide by current recommendations: eat healthy, exercise, stay intellectually and socially engaged, get quality sleep. Sleep can be hard to come by on some nights as I lie there staring at the ceiling pondering the state of the 80 billion or so neurons thrumming inside my skull and trying not to compare my slips of memory and my mother’s. So what if I tried to return a jar of curry powder to the dishwasher? I understand genetics are a 50-50 proposition, but I am so much like her. Watching my mother slip inescapably into dementia was like watching a schooner slowly disappear into a fogbank, its sail billowing with an implacable wind. Is my own course predetermined?
So, I have a kitchen cabinet packed with supplements and potions meant to help maintain heathy intellectual functioning or at least give me the illusion of influencing those copious neurons, but which are most likely a boon to the supplement business instead of my brain cells. Still, I spend an inordinate amount of time sorting through them every morning hoping one of them might have the promised effect. Wouldn’t my time be better spent thinking about how I would arrange caregiving if it comes to that and what the financial implications might be?
There are more than 6 million Americans with Alzheimer’s. In the absence of a cure, that number will only grow in the coming decades as the population ages and diagnostic tools become more effective at identifying the disease earlier and more clearly. But for now, whether I — or you, for that matter — will fall prey to Alzheimer’s remains largely unknown. Will we be like aged Lear who cries out in the storm, “Who is it that can tell me who I am?” If I can know, I want to know. My mother reflexively used the weapon of denial until it was too late for her to understand what was happening to her. That is one thing I won’t share with her.
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Edward Grinnan is the editor-in-chief of “Guideposts” magazine and author of the new book, “A Journey of Faith: A Mother’s Alzheimer’s, A Son’s Love, and His Search for Answers.”
