The woman in front of me at the pharmacy window was struggling as she tried to tell the pharmacist some detail about her prescription. As I watched her fumble for a word (she was about my age — 70 — or a little older maybe), I saw a certain sign, a little detail about her frustration, that brought a whole world of memories back to me with a wave of emotion that saddened me. And in that inrush of memories, one in particular stood out: the day I had lunch with Dementia.
That is, I had lunch with Tom, an old friend and colleague who brought his dementia companion with him. Tom made the formal introduction quite casually — nothing more than a matter-of-fact flick of the wrist — when halfway through lunch he handed me his MedicAlert bracelet with the tiny engraving, “dementia.” I did not tell Tom that dementia and I are former acquaintances; it wasn’t necessary to the enjoyment of our luncheon.
The two of us — fellow writers who still look much like we did many years ago, with only a few surface modifications — were seated in a small storefront restaurant in the Washington suburbs, not too far from Tom’s family. He was visiting from an assisted living community several hours away. Tom’s take on the facility is blunt, “It’s barely assisting me, and it ain’t living,” so a day or two away from his healthcare apartment was a treat, and he was enjoying it.
A mutual friend contacted me the week before the lunch to let me know that Tom would be in town for a rare, and possibly last, visit before the syndrome made such trips impractical, if not unrecognizable for Tom. At this stage of his dementia, Tom still knew me, and he had a pretty good hold on himself, most of the time. But that was changing.
Dementia was tunneling progressively into random portions of Tom’s brain, short-circuiting his memory, unwiring his mechanisms of behavior, stripping away that which not only made Tom “Tom” to others, but those parts of Tom that made Tom “Tom” to himself.
I make no pretense about diagnosing or even understanding the specifics of Tom’s dementia; I only know that the man sitting at the table with me was undergoing a transformation I’d seen before, a transmogrification, really, that has both sadness and humor playing out on the same stage — often at the same moment.
Watching and listening to someone with dementia like Tom’s is akin to watching someone perusing the stacks of a vast library — imagine the Library of Congress or the Bodleian Library — a library they knew well, but which has now become a disordered storehouse of jumbled memories and lost experiences. “Ah, this book is a good one, I remember it well!” But then, “No…that’s not the right one after all. Maybe this one?” They reach for another book, but stop in mid-reach, forgetting why they reached in the first place.
So they walk down a few more rows to where the photography books are kept, eager to see the pictures of the old days. But the albums don’t look the same, the pictures are out of order, or they are missing entirely. “Oh, but look! Here is a familiar face.” And suddenly the memories flow in the strong current of recognition. Every detail of that person’s life is remembered: who they knew, where they lived, even what they wore. And then, click, the memory goes dark. Frustration sets in and the tears come. And they are destined to stay in that crumbling library for the rest of their lives. Sometimes they know their future, and sometimes they don’t, only to discover the truth all over again.
No, I can’t diagnose or make a medically competent comment about Tom’s particular version of dementia, but I can relate to the symptoms. My father and mother both bore the weight of dementia in the latter parts of their lives. My mother’s dementia arrived first in the closing stages of her Parkinson’s disease and was abetted by alcoholism. Her dementia came out as anger, bitterness verging on viciousness, and as night terrors. She had been a brilliant writer, a fine-art artist who instilled in me a love of oils and turpentine and fine brushes and myriad colors. She had been a pilot — and a good one, too. And, oh, how she could sing and play the piano. And then she couldn’t. No writing, no art, no singing or playing. Dementia brushed all of those away and left…fear and anger.
Phone calls at midnight that began with, “There are snakes coming through the blinds!” only ended after an hour or more of terrifying accounts of vile mistreatment by her caregiver was barely assuaged by my promises to drive out and see her in the morning. When you’re the adult child of a parent with a brain-altering disease, a 120-mile round-trip is the least of your worries. When she died at 75, the little left of her I knew was masked mostly by pain and morphine.
My father’s dementia, a type known as vascular dementia, or vascular cognitive impairment (VCI), was one of many ailments that bedeviled my dad for the last 15 of his 81 years. Glaucoma, diabetes, and obesity set the stage for my father’s dementia, and as his blood vessels closed off, his brain began to play the most devious and sad tricks on him.
He became frustrated quickly, he angered in a flash, he cried over old songs and videos of musicals — or nothing at all. He shouted commands, fell into depressions. Crawled inside himself. And then his innate good nature would resurface and he would smile at a thought, or a comment, or because his daughter-in-law had kissed his forehead. The gentle southern boy, the proud West Point cadet, the vibrant fighter pilot and commander, the gentleman farmer and friend to all, the loving father and devoted grandfather, was deceived and abandoned by a brain no longer able to process the world around him.
So when I sat down at the table with Tom, and looked into the eyes of a man whose life had been so filled with memories of achievements and adventures and friends and family, memories that were all slowly fading away, never to return, I marveled at his composure, grace, and, yes, humor, when he handed me his MedicAlert bracelet. Dementia. What a luncheon companion it was.
Some stats to consider:
According to the World Health Organization, the total number of people with dementia worldwide in 2019 was estimated at 50 million, with 10 million new cases every year implying 1 new case every 4 seconds. Among them, 58% live in low- and middle-income countries, and this proportion is projected to rise to 71% by 2050. The number of people with dementia is expected to increase to 82 million in 2030 and 152 million in 2050.
There are many fine organizations working on myriad aspects of dementia, including the Alzheimer’s Association www.alz.org, and the Alzheimer’s Foundation www.alzfdn.org.
