Remembering Sylvia on what would have been her 102nd

 

Today would have been my mother’s 102^nd birthday, as she was born July 28, 1919 in Newton. Sylvia Kessler has been gone for more than 24 years, a victim of dementia that was eventually diagnosed as Alzheimer’s disease.
I wrote this column in September of 2017 to mark the 20^th anniversary of Sylvia’s death, and since then, the scourge of Alzheimer’s disease has only worsened. Caregivers and families of Alzheimer’s patients recently had their hopes raised due to Biogen’s latest drug, which was approved by the FDA only to have its high cost given as the reason why many insurance companies will refuse to allow it to be prescribed for Alzheimer’s patients.
That figures, because families of Alzheimer’s patients have never had it easy. I remember only too well how the nursing facility that my mother spent the remainder of her life in, which was supposed to be a place that specialized in treating Alzheimer’s patients, failed to care for her even adequately, and was constantly sedating her and even talked us into giving her electric shock therapy within two months of her death, when that was futile. Her treatment in the 11 months that she stayed there was nothing less than shabby, and thankfully, the facility was razed years ago.
At any rate, this column, which was published Sept. 13, 2017, is a tribute to Sylvia.

This column was originally published Sept. 12, 2017 in The Sun Chronicle of Attleboro, MA.

“You have to be able to laugh.”
-- Joanne Cammett of North Attleboro, who is battling Alzheimer’s disease

Living with Alzheimer’s disease is no laughing matter, but for those afflicted with that cruel disease, and for those loved ones caring for them, a healthy sense of humor is without question the best medicine.
That was the sentiment of the family – Gene and Joanne Cammett of North Attleboro and their daughter Leslee Murphy – interviewed recently by Staff Writer Kayla Canne, and they’re absolutely right.
I say that not only because laughter generally takes the edge off the saddest of circumstances, but also because it’s been 20 years since my mother died from Alzheimer’s, with which she had been diagnosed only three years earlier at the age of 74, but had been battling for several years before that.
Through it all, humor is the only thing that kept us – my father (her main caregiver), and my wife and I – somewhat sane – especially during our weekly trips to their house in Watertown to sort through the mountains of stuff they had accumulated.
It was hard work – we put out an average of ten 30-gallon plastic trash bags a week for several weeks – and heartbreaking, due to my mother’s deteriorating condition. But through it all, humor sustained us.
I remember one time, when my father and I were sorting through all the junk, including my broken-down model ships that I had made as a kid – that my parents chose to keep in the basement -- and my mother couldn’t remember where he was, and showed some frustration with him.  “He’s not the man I married. The man I married was taller,” she said of Ike. We had a good laugh about that.
Then there were the unintentional moments of humor, such as when my mother started talking back to the TV and thinking that Vanna White of “Wheel of Fortune” fame was watching her. Or the times when she said she was afraid that someone would be breaking into the house that they rented to steal the living-room couch – as if anyone wanted that ancient piece of furniture.
Those moments of levity helped defuse my mother’s anxiety as she still had some lucid moments, during which she could remember how much memory she had lost. That might sound contradictory, but it makes sense to anyone caring for Alzheimer’s patients through their various stages of decline.
Joanne Cammett’s humor came from her asking “Who are you again?” several times of her husband Gene, but as Murphy said in the article, those lighter moments, as precious as they are, can’t forever mask the gravity of the situation.
“There are days when I just shut my door and burst out crying. Some days are harder than others. But the key is to not let her know,” said Murphy, who’s writing a blog (lifewithalzheimers.blog) about her family’s experience coping with the disease.
Her feelings are shared by any caregiver who has had to deal with the frustrations of Alzheimer’s disease, which doesn’t give anyone a break and robs those afflicted of their dignity.
I know that only too well. I didn’t cry a lot over my mother’s condition, but the pain ran deep. For instance, I couldn’t travel to the nursing home where my mother lived the last year of her life without getting bad migraines. And, I’d worry terribly about my father, who kept the severity of my mother’s disease to himself until circumstances forced my mother, a stubborn and prideful woman, to be forcibly removed from their apartment by the state.
From that point on, Sylvia ceased to be my mother. Even though the disease had by then robbed the trained bookkeeper of her ability to reason and think clearly, she was too smart for her own good as she knew in her gut that she’d never be released from the nursing home and was seldom cooperative or congenial when we visited.
That feeling of helplessness is what ultimately led to her death just one year after moving to the home. She shut down her body and willed herself to die.
Thankfully, research has greatly improved, as has the compassion of the professionals available to assist patients and caregivers. Thanks to the Alzheimer’s Association, doctors are no longer referring to Alzheimer’s as “The Big A,” which my mother’s neurologist did in 1994 when officially diagnosing her disease.
That’s why Saturday’s Alzheimer Association’s Walk to End Alzheimer’s at Patriot Place in Foxboro is so important. Teams, including the Cammetts’ entry, Joanne’s Journey , will be walking to raise $400,000 to promote Alzheimer’s research. The Cammetts are well on their way to raising $5,000, and Gene Cammett knows what a difference that money can make, because before caring for his wife, he was the caregiver to Joanne’s mother, who got the disease in her 70s. Joanne, now 68, was diagnosed at 66.
The money raised from the walk could improve the quality of life for the next generation of Alzheimer’s patients, and the Cammetts are to be praised for participating, and for taking a frank approach to dealing with the disease.
That will go a long way toward keeping hope – and laughter – alive.