Racing Algernon
Originally published on vandalnation.blogspot.com
9/9/2015, 3:07 PM Eastern Daylight Time
Some time ago during a conversation concerning my 91-year old mother's Alzheimer's diagnosis, a lifelong friend and retired surgeon -- no stranger to death in all of its dreadful configurations -- related one of those dicta that rattle around in one's head like a persistently annoying jingle, a tinny little tune that won't go away. "Forget all that crap you read in the obits about '...peacefully entering eternal rest surrounded by his loving family...' " he observed. "The late stage life cycle is usually painful, slow and almost always ugly."
His analysis, though brutally pragmatic, was devastatingly accurate. After a series of falls resulting in broken bones and myriad injuries that led to several hospital visits and a three month stay in a rehabilitation facility, my mother began her slow, steady downward spiral both physically and cognitively. Because of my proximity to her as a result of my long time Florida residence and, in one of those queer ironies of life, (despite the threadbare parental canard that "...we love our children equally," I was her clearly her least favorite of three sons), I was tasked with the responsibility of handling all care giving and assisted living arrangements.
My mother, who lived through the fearful terror of WWII 1930's occupied France was an intelligent, college educated, no-nonsense former career woman who at times exhibited the maternal instinct of a Head Mistress at a private prep school. Despite her cold reproachment of me, I executed my task out of a sense of duty - just as she had done during my childhood. For me to do less would have entirely bitched my self-perceived image as a "stand up guy". In the end, we are all prisoners of our own reality; life, it seems, is sometimes a funny old dog.
Her condition continued to deteriorate and at one point she was admitted to the hospital for a week with a dangerously low hemoglobin count, totally oblivious to her surroundings. Within hours of her arrival, Hospice (yet another one of these ubiquitous end of life Medicare funded programs) paid a visit and dropped off some of their tony literature. The slick, color brochure, which promises a "pain free, dignified transition", depicted what appears to be a stress free loving family surrounding a white haired (but stylishly young) debonair gentleman, clearly the patriarch, who is lounging comfortably in a hospital bed in a private room setting. They are virtually beaming at the camera, their smiles radiating happiness, as if they were preparing to treat old Dad to a day at Disney instead of a celestially eternal dirt nap. In post-modern America, we package even The Grim Reaper like so much toothpaste.
Surprisingly, she bounced back from the hospital stay and was placed directly into a Rehabilitation Center. The rehab facility "a clean well lighted place" almost completely financed by Medicare and Medicaid, simultaneously smelled of disinfectant and old-age decay is, for many "residents" the end of the line, a holding tank for all manner of the debilitated -- stroke victims, advanced Parkinson's, Alzheimer and dementia patients. When not going through the motions of "rehabilitation" sessions, those residents in various states of diminished mental and physical capacity are lined up at the nursing stations in their respective wings so the staff may monitor their movements. Invariably, upon seeing a stranger approach, they will reach out with ancient, thin skinned and translucent hands and, almost to a resident, ask some variant of the question "...can you get me out of here?"
In some sad way, these octogenarians are a colorful cast of characters: The poor old guy, a stroke victim, who perpetually sat in his wheelchair, right arm held forward stiffly in a Nazi salute, left leg extended backward on the outside of his wheelchair as if eternally running the 100 meter high hurdles who every 30 seconds would loudly exclaim "...on the money, buddy ", a phrase he used to communicate everything from bathroom requests to hunger; the retired investment broker who did not so much suffer from dementia as he reveled in it and who loudly blamed "...those Jew lawyers" for his forced commitment by his family; the patient, a perpetually smiling butterball of a man, suffering from some undisclosed ailment, who occasionally had to be restrained lest he spent his entire day hopping and jumping along the walls of the corridors throughout the facility, resembling a midget leaping up to a mailbox to send a letter. Or the rail-thin elderly lady, a loquaciously unpleasant woman who, in a facility where death from natural causes was a fairly common occurrence, believed that every resident's passing was a conspiracy between the nursing staff and Satan. "Satan murdered her," she once vociferously announced in the crowded dining room after an elderly dementia resident who suffered from congestive heart failure passed during the night. "He lives among us." However, by the time the paramedics arrived, they were quick to rule out Satan as a suspect.
During my mom's 99 day stay in rehab, I befriended a 94 year old long retired lawyer whose mental acuity was razor sharp but was physically so decrepit he had difficulty manipulating the toggle switch on his electric wheelchair. I would occasionally run into him outside in a little garden/gazebo area where we would discuss a variety of topics. He was a surprisingly adroit individual, with an incredible memory for dates and numbers -- not just for a 94 year old, but for anyone -- and an entertainingly dry, acerbic wit. In my conversations with him, I am mindful of the literature on nursing home protocol I have read on interacting with the aged...always encourage an upbeat attitude -- focus on a positive future. My elderly friend, a hopeless cynic, would have none of it. On one meeting outdoors in the garden, on one of those breezy, crystal clear, gorgeous Florida days in early Spring, the sky so blue it made the ocean jealous, I opined that it was "...a beautiful day to be alive". The old guy carefully placed his book (Nietzsche's "Beyond Good and Evil") on his lap, peered at me over the top of his cheaters and simply scoffed. "Young man", he said with a sardonic smile, "I wouldn't go that far".
My mother's short term memory has deteriorated months ago and now the disease is doubling down, racing at a breakneck speed, affecting her hand-eye coordination and her ability to ambulate, confining her to permanent wheelchair status. Despite this, and the fact she really should be placed in a skilled nursing situation, I manage to locate and finagle her a spot in an excellent facility that provides 24/7 care, but is not inundated with the unsettling senile screamers and weepers who can be frightening. In her newly decorated room I watch my mom, staring vacantly at her hands as if they were newly grown, undiscovered appendages. Her lips move soundlessly, now rarely able to articulate the words even on those rare occasions when she actually formulates a thought. Oddly, when she does speak, she often slips into French, her native tongue. (A government interpreter in Europe after WWII, she was fluent in three languages and, typically with Alzheimer's, what is most ingrained -- i.e.; language in her case -- is the last faculty to completely deteriorate.)
"Quand je voudrez allez a la maison?" (when may I go home) she asks, gazing intently at some invisible spot on the ceiling. I do not tell her I sold her home seven months ago.
"Peutre demain, ma", (maybe tomorrow) which is my standard reply in what little of the language I remember from childhood.
"Okay," she says in a thin, frail voice, "okay", still focused on a specific point on the ceiling.
My research on the hereditary nature of the disease is indeterminate and, despite my mother's life threatening precarious plight, I cynically contemplate and focus on my own future -- how will this affect me . Despite the unseemliness of the thought, only the slightest shadow of shame floats through my consciousness -- but does not linger. More than 64 years of Baby-Boomer self absorption indemnifies me from any guilt. I am steadfastly secure in my selfishness.
These days, every misplaced set of keys, inability to recall the name of an acquaintance or momentary mental lapse strikes a frightening chord of dread deep within me. To a man with a hammer, everything looks like a nail. Could this be me in 20 years? 10 years? 5 years? Will I eventually devolve into some helpless, non-ambulatory, non-verbal sack of mush, curled up in a fetal position. My worst nightmare -- Consummate Wise Guy regresses into a primitive, imbecilic Knucklehead Smith. According to the American Academy of Neurology, (an impressively sounding outfit) and a number of other equally distinguished and notable organizations which I have encountered in my Internet investigation, there is an established correlation between concussions and Amyloid (a toxic protein) deposits, which are thought to cause Alzheimer's.
I run through my checklist of lifetime concussive events, mostly sports related, for the thousandth time. It dawns on me that for the first 21 years of my life I used my head as either a battering ram or a speed bag. My early sports activity clearly puts me at risk for the disease. Several visits to specialists does not diminish my consternation. They are generous in their cavalier advice --"wait and see"..."don't worry about it"..."we'll revisit it in a year or so..." -- the very sort of worthless platitude you would expect from another egotistical, narcissistic Baby-Boomer who is unaffected by my situation.
Everyday the assisted living facility encourages the residents to participate in "rehabilitation" exercises ranging from physical and occupational therapies to speech and cognitive exercises. Wednesday afternoon's cognitive therapy is an art class, which is attended by a dozen or so Alzheimer's/dementia residents, exclusively women. They are given brushes, watercolors and a canvass on an easel and are instructed to paint a bunch of colorful flowers in a vase which is setting on a small table in the center of the room. I slowly saunter around the circle of elderly artists examining their work. While none are in danger of shocking the art community as the next Grandma Moses, all of their work vaguely resembles a vase containing flowering plant life of some description.
My mom's effort, however, appears to be something akin to Picasso's greatest hits...if he was smoking crack when he painted it. After a few minutes she loses interest and simply stares mindlessly at the canvas, her thoughts lost in some private, inaccessible space to which only she is privy. She exudes a somber sadness, a melancholy loneliness that is profoundly visceral and heartbreaking.
And so now begins the long goodbye -- the slow, steady unpacking of her cognitive suitcase. Based on my observation of the other Alzheimer's patients here who are in the later stages of the disease, the future appears to be less than hopeful. This insidious disease, a thief with a burglar's brass balls, robs one's memories and then, almost as an afterthought, in a merciless coup de grace -- a heartless smash and grab -- brazenly snatches what little is left. This woman, who survived Nazi occupied France as a teenager, three impetuously feral sons and a husband who marched to the beat of his own private intemperate demons, is a survivor and will not "... go gently into that good night". But her end will not be swift. It will not be merciful.
What is it like for her, I wonder, on those nights alone in the darkness of her room, eyes wide with fear unseen, sleepless, silently staring -- death and dementia at the door? In those transient moments of lucidity, does she despair of all hope? Or maybe, does she glimpse, for only a fleeting second, a happier time from days long past? And in that brief, ephemeral reverie, does she remember -- feel the very fabric of her life, each day in every detail -- the memory making even the ordinary simply too beautiful to bear.
Danielle Antoinette Van Assche died on April 5, 2016, surrounded by her loving family, completely and utterly alone.








