On October 26, 2005, my grandmother passed. Some may take exception to my using the term "passed" – and the fact that I didn’t attend her Friday funeral – to me, though, my grandmother died over five years ago.
Anna Bliss Lockwood was another victim of Alzheimer’s.
We are all victims, not just my family, but everyone in due time. Forget Avian Flu, AIDS, even Iraq... Chances are good that we will all witness our parents – and one another – waste away. No cure for Alzheimer’s exists, and for the first time, in 2004, it became the #1 killer of people over 75 in New York City. More people die of Alzheimer’s than car accidents and breast cancer, and over 43% of people over 85 already have it.
As the average American’s life expectancy increases, so does the certainty of affliction.
My grandmother made it to 87, but we have been watching her fade since 1998, slowly yet consistently, forgetting our names then herself until finally, mercifully, descending into an abyss of amnesia. Only heightening the tragedy was the reality that the normal rituals of confronting a terminal illness within a family don’t apply to this evil disease.
My father’s phone call that Wednesday was cathartic: "I just wanted you to know that your grandmother died this morning..." His voice was calm, casual, more courteous than concerned: Relieved.
Having cared for her every need, moving his mother time and again, counseling with doctors and nurses, loyal and loving, even my father’s deep well of grief ran dry by the end. As it clouds its victim’s mind, Alzheimer’s also breeds a level of indifference among those involved – He and we have been mourning far too long already.
* * *
First identified by German psychiatrist Alois Alzheimer in 1906, the disease that bears his name is the overriding cause of what is generically called dementia. The plague of age, at least 60% of cases of dementia are due to Alzheimer’s: clumps or clusters of dying or dead nerve cells ("plaque") that impair normal brain activity. Early signs are short-term memory lapses, oftentimes frustration, confusion, then recurring forgetfulness, eventually leading to outright incapacity.
Seven years ago, during a visit to her home in Florida, my father noticed how his mother seemed almost lost, forgetting her keys, to lock the door, turn off the stove... Too obvious and dangerous to allow her to continue to live alone, we moved her north. This is perhaps the hardest moment; stripping the independence from an elder; a child forced to confront their parent with the reality that they are no longer fit to live on their own. My grandmother took this especially hard; she was, if anything, an independent woman.
A child of The Great Depression, Anna Bliss was unofficially orphaned at an early age, sent to live and work for another family because hers couldn’t afford to feed her. Hard work and personal sacrifice were givens, and marrying William Lockwood only added to her stoicism. My grandfather was a wildcat, working the oil fields of Pennsylvania, a speculator, later buying several bankrupt farms to rebuild and resell. Together, my grandparents reincarnated at least four farms, tending to hundreds of acres and head of cattle, while also raising four children.
As a result, my father knows three hometowns. Itinerant, the family was regularly moving, rebuilding then reselling. Starting with a derelict house and barn depleted of livestock, years of work and wealth would be invested – floors and roofs replaced, fields and stables teeming, equipment upgraded – until it was finally showing a profit. And when that fixer-upper was finally starting to feel like home (schools attended, friends made) it was time for them to find another. After all, this was their life (and business): Buying low, moving, rebuilding, hopefully selling high, moving again – the only life my grandmother ever knew.
As a result, my father knows three hometowns. Itinerant, the family was regularly moving, rebuilding then reselling. Starting with a derelict house and barn depleted of livestock, years of work and wealth would be invested – floors and roofs replaced, fields and stables teeming, equipment upgraded – until it was finally showing a profit. And when that fixer-upper was finally starting to feel like home (schools attended, friends made) it was time for them to find another. After all, this was their life (and business): Buying low, moving, rebuilding, hopefully selling high, moving again – the only life my grandmother ever knew.
Ironically, such temporary acquisitions introduced her to the disease that would ultimately claim her. One of my grandparents’ last investments was a nursing home: Filled with older patients, many with dementia (Alzheimer’s wasn’t fully studied or understood, yet), my grandmother was all too familiar with loss. Her experience would make her a dreadful ward once afflicted.
Knowing the ins and outs of nursing homes, my grandmother was quick to point out how inept the nurses were, that they couldn’t keep her there without her consent; she believed she knew the rules better than any... Packed and ready to leave every morning, complaining all day when informed that she couldn’t, at times attacking her caretakers, she was regularly sedated (at times strapped-down to her bed) at night. It was an immediate and vicious cycle that got her evicted from her first nursing home within months. It wouldn’t be the last.
* * *
Finally, my father found the right place for his mother: A former hospital in Cuba, New York, now fully dedicated to Alzheimer’s. A twenty-block area of New York City has more residents than this rural region; still, a three-story hospital with multiple wings is now exclusively reserved for this disease. The screams rarely cease and smell of piss permeates my grandmother’s final residence.
Upon entering for the first – and second-to-last – time, an ugly thought hit me: "This is the future..."
Our country cannot afford Alzheimer’s. As fiscally draining as war, over $114 billion is spent each year on doctors, nurses, tests, drugs (none of which are intended to cure the disease, but to allay its effects), home and adult day care, etc. This extraordinary annual expense – more than the budgets of the Departments of Commerce, Education, Justice, Labor, Energy, and Interior combined – doesn’t approach its the true, total cost: Economists estimate that an additional $61 billion in productivity is lost due to employees having to leave work to care for afflicted relatives. This is a war – Alzheimer’s annual toll of $175 billion could underwrite another invasion, or at least rebuild New Orleans.
To-date, around 5 million Americans have Alzheimer’s, and another 500,000 new cases are diagnosed each year – around 50,000 died in 2005 of this disease. These numbers are alarmingly inaccurate however; even experts admit that many more cases go misidentified or unreported for years; the initial symptoms are subtle, while full-blown incapacity takes a few years to set-in. Alzheimer’s is terminal within 7-10 years, with each year requiring $150,000 for professional care. Care is the operative word; again, there is no cure.
Nevertheless, there remains the reality that my grandmother’s death certificate will most likely say that it was pneumonia, not Alzheimer’s, that ultimately killed her. No one dies of this disease. Malnutrition, debilitated immune systems, and/or involuntary injuries are often the "official" causes of death; over those seven years in institutions, my grandmother suffered three broken ribs, a fractured skull, innumerable bruises and internal bleeding because she was constantly wandering from her bed and/or wheelchair and falling. Any one of these falls could have been fatal, but again, the actual cause – Alzheimer’s – is only now being consistently cited. This has led to a dramatic (yet superficial) increase in actual reported cases: In 1999, Alzheimer’s didn’t even appear in the Top 10 of leading causes of death, while more vigorous reporting since has propelled it into the Top 5.
Soon it will be #1. Ten of millions of Baby Boomers are about to retire, and none are eager to confront what awaits: pensions precarious, retiree health care benefits subject to the whims of executives, shareholders and politicians, this generation will surely bankrupt our nation. Without a cure, 12-15 million Americans will have Alzheimer’s within decades. Multiplied by the average (current) annual cost of $150,000 for care, that’s $1,800,000,000,000. Nearly 2 trillion dollars – surely more, given the spiraling costs of health care – soon our entire national budget will go towards those afflicted.
When framed by this disease, our advances will be our demise. We are all living longer (those with Alzheimer’s included), which will soon force us to ask the unthinkable:
Should Living Wills include Alzheimer’s – And be required of all Americans?
More importantly (and divisively):
Will Euthanasia for those afflicted be essential for our survival?
* * *
By the end, it was rare to find my grandmother not bandaged and/or strapped to her wheelchair. Strangely though, another, rather beautiful, reality arose. This dreadful disease, the one that will make my father’s generation an impossible burden to mine, actually has a benefit. In this instance, at least...
My grandmother had been transformed in many ways: her lifetime of memories were erased, her active body bloated from medications, her hard-earned savings depleted from years of professional care, and she was no longer packing every morning to leave, rather resigned, really.
Most – and best – of all, though, she wasn’t such a bitch.
Not to taint a departed soul (most of all a relation) but, in addition to being highly independent in her pre-Alzheimer’s life, my grandmother was also a rather nasty lady. Opinionated to the point of ignorance, racist, and incredibly rude to my mother (who will never be good enough for her son), I avoided her, gravitating at an early age to my other grandmother. This one was mean as hell; she could bake the best rhubarb pies but that seemed her sole attraction.
Shockingly, however, in her final years, she became sweet as sugar. A darling, the grandmother I always imagined; even my mother liked her – but understandably thought it all a ruse, waiting for the return of that disapproving bitch from before. But she never did... Aged but reborn, child-like, though in restraints she was still the nicest old lady you’ll ever meet.
Thanks to Alzheimer’s, I received a new grandmother: The one I’ll always remember.
And it was this grandmother that I kissed farewell, forever, that last Christmas. I knew it was the final time I’d see her, alive at least, and after kissing her on the forehead and telling her that I love her, she gave me the sweetest smile. Looking up at me from her wheelchair, blue eyes sparkling, left cheek bruised from a fall earlier that week, dentures stained from lunch, I have never been the recipient of a more precious gaze. And she stared a little longer, those blue eyes still sparkling but going distant, and then she did the weirdest thing.
"I’m sorry."
Startled, saddened by her impromptu apology, I begged, "What are you sorry for?"
Eyes lowering, seeing that strap around her bloated belly, grasping it and giving it a tug, she explained, "I want to thank you for coming to visit me... But I can’t remember your name..."
So I knelt low and took her hand in mine, caressing my grandmother, our eyes met one last time.
"That’s okay, Gram. I know who you are."
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