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| Illustration J. Moore |
[This article was originally published in the Huffington Post’s Contributors’ platform (no longer active) in October, 2016. I have updated portions to reflect the death on May 24, 2021, of my friend and colleague at VA Sid Shaw]
Introducing his guest
I had lunch yesterday with Dementia. That is, I had lunch with Sid Shaw, an old friend and colleague who brought his dementia companion with him. Sid 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 Sid that dementia and I are former acquaintances; it wasn’t necessary to the enjoyment of our luncheon.
We were having lunch during the time he was visiting his family from an assisted living community several hours away. Sid’s take on the facility is blunt, “It’s barely assisting me, and it ain’t living.” A day or two away from his healthcare apartment was a treat, and he was enjoying it.
The two of us—fellow writers who can still lie about how much we look 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 Sid’s family. Sid had been a speechwriter for the Secretary of the Department of Veterans Affairs, but to use the term “speechwriter” does not do justice to the lyricism of his prose. I followed in his footsteps at VA, but I never matched the quality of his writing, nor could I touch his abilities as a five-star raconteur. Oh, my, how Sid could tell stories.
A mutual friend contacted me the week before the lunch to let me know that Sid would be in town for a rare, and possibly last, visit before the syndrome made such trips impractical, if not unrecognizable for Sid. At this stage of his dementia, Sid still knows me, and he’s got a pretty good hold on himself, most of the time. But that is changing.
We were having lunch during the time he was visiting his family from an assisted living community several hours away. Sid’s take on the facility is blunt, “It’s barely assisting me, and it ain’t living.” A day or two away from his healthcare apartment was a treat, and he was enjoying it.
The two of us—fellow writers who can still lie about how much we look 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 Sid’s family. Sid had been a speechwriter for the Secretary of the Department of Veterans Affairs, but to use the term “speechwriter” does not do justice to the lyricism of his prose. I followed in his footsteps at VA, but I never matched the quality of his writing, nor could I touch his abilities as a five-star raconteur. Oh, my, how Sid could tell stories.
A mutual friend contacted me the week before the lunch to let me know that Sid would be in town for a rare, and possibly last, visit before the syndrome made such trips impractical, if not unrecognizable for Sid. At this stage of his dementia, Sid still knows me, and he’s got a pretty good hold on himself, most of the time. But that is changing.
The brutal unfairness of dementia
Dementia is tunneling progressively into random portions of Sid’s brain, short-circuiting his memory, unwiring his mechanisms of behavior, stripping away that which not only makes Sid “Sid” to others, but those parts of Sid that make Sid “Sid” to himself. And yet the disease could not beat out Sid’s ability to poke fun at himself, as his daughter, Amanda, reminded me shortly after Sid’s death. “Dad would say, ‘If I ask you for $2,000, don’t give it to me; I’ll forget where it came from.’”
I make no pretense about diagnosing or even understanding the specifics of Sid’s dementia; I only know that the man sitting at the table with me is undergoing a transformation I’ve 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 Sid’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.
I make no pretense about diagnosing or even understanding the specifics of Sid’s dementia; I only know that the man sitting at the table with me is undergoing a transformation I’ve 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 Sid’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.
From a personal perspective
No, I can’t diagnose or make a medically competent comment about Sid’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 abetted by alcoholism. Her dementia came out as anger, bitterness verging on viciousness, and as night terrors.
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 on May 4, 1997, 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 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.
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 on May 4, 1997, 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 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.
Grace and composure--and humor--will be Sid's legacy
So when I sat down at the table with Sid, 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.
[Note: In a conversation I had with Sid’s daughter, Amanda, a few days after Sid’s death, she told me how Sid wanted others to better understand his disease. She said that Sid had read Robert Davis’s book, My Journey into Alzheimer’s Disease: Helpful Insights for Family and Friends, and after reading it, he asked his family to order many copies of the book, and had them sent to his friends. That sense of sharing was so totally Sid]
Some stats to consider:
According to the World Health Organization’s 2019 data, 50 million people worldwide live with dementia. Among them, 58% live in low- and middle-income countries, and this proportion is projected to rise to 71% by 2050. The total number of new cases of dementia each year worldwide is nearly 7.7 million, implying 1 new case every 4 seconds. The number of people with dementia is expected to increase to 75.6 million in 2030 and 135.5 million in 2050.The Institute for Dementia Research & Prevention at the Pennington Biomedical Research Center at Louisiana State University System notes that “In the US there are believed to be at least 5 million individuals with age-related dementias. These numbers will only to continue to rise with the aging of the US population. It is estimated that 1 in 6 women, and 1 in 10 men, who live past the age of 55 will develop dementia in their lifetime.
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.
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