It was midnight where I live in L.A. when my mother called -- 3 a.m. in the pint-sized village of Dublin, Pennsylvania where she lives. As I saw her number on the caller ID, I said to myself, "This can't be good." I answered, "Mom, you OK?" Nothing but convulsive sobs in the receiver. Then, "They had to take Dad away."
My father spent the previous hour or two or three circumnavigating every corner, every nook and cranny of their house, but he could not find what he was looking for. That's because what he was looking for did not exist. His explorer's suit consisted of one sock and an adult diaper which was not doing its job. His evolving journey into belligerence thrust my care-giving mother into the darkest corner of this emotional boxing ring. It was only when her husband hooked her shoulders with his unforgiving hands that she knew her fight was over. Decision: unanimous. "I never want him back in this house again," she said. And so it was, after 52 years of marriage.
My mother had been able to disengage from my father long enough to call my sister and her husband, both psychologists, who lived not far away. They rushed to the house and were able to juggle the delicate complexities of such a situation with extraordinary aplomb. They followed the ambulance to a psychiatric ward in a regional hospital where they were advised, and where, as morning broke, they finally left my father under the haze of aggressive medication laid bare to what were the clearly concluding ravages of Alzheimer's Disease.
My father is the son of an Alzheimer's victim, which makes me the son and grandson of two victims. Bad odds in an otherwise small family. I would be equivocating were I not to admit how deeply this information infests my guts, my mind. For at nearly 49, I am not old, nor am I young. I am in that limbo we call "middle age." I am also and have always been a restless sort, my mind firing on extra cylinders, 'round-the-clock, without a shutoff valve. By no means does this equate intelligence. Uh-uh. In fact, it means I worry too much and largely make much ado about nothing much at all. Except in this case. And, except in the case of my sister who, despite tending to traumatized college students by day and now her ailing father by night, suffers from a deadly kidney disorder. Yes, this too is worthy of worry.
Where this story becomes profound, for me at least, is that I have a daughter who is just two months old. Her birth has lifted me. Her breath on my cheek is nonpareil. Yet, every time I look into her big blue eyes I think how eerily cognate her state of being is to my father's. Though my father is 160 pounds and in good physical condition for a man of his age, were both he and my daughter unattended to, they would simply die. They are diapered. They are fed. They are groomed. They are medicated. They are speechless. They rage. They sleep. They are shadows; one of what will be and the other of what once was.
My Dad will never know my daughter. And that breaks me in two. He will never speak her name. He will never hold her tiny digits. He will never cry for joy at her mere presence in a room. And yet he is still here. He is alive.
Or is he?
Alzheimer's annihilates its victims with steely, unrelenting vigor. But victims aren't only those who wind up meandering about the ruins of their psychical selves. Victims are also wives and husbands, sons and daughters, aunts and uncles, friends and coworkers who watch the tragedy unfold, despite the breadth and depth of their compassion or the hours they log in some cryptic engagement with the afflicted.
This is but preaching to the choir of 15 million Americans who provide unpaid care for the five million Americans suffering the effects to a tune of $200 billion per year. Alzheimer's is the sixth leading cause of death in our country. And, with the disease expected to triple to 13.8 million Americans within 30 years, every zip code on the map is on a collision course with destiny, like it or not.
As I spend my last year in this half century of my life, there is but one thing that I find true. And it is truth itself. The truth about Alzheimer's is that it hurts so deeply. Is it not the mind that separates us from everything else? And thus, what are we without that very separation? Vapid matter? Fodder? Dust?
The truth is that we are unsustainable.
Therefore, I have arrived at a rather unvarnished conclusion which plays out like this: While we are here, while we can be mindful, and while we can command our hands and our arms and our hearts, we should use them to hold what we have as tight as we can, for as long as it will allow us.
For more information about Alzheimer's, contact The Alzheimer's Association at 800.272.3900 OR the Alzheimer's Foundation at 866.AFA.8484. The National Alzheimer's Plan and the dedication of $50 million to fund Alzheimer's research were significant steps toward confronting this devastating disease. The president submitted a budget request for $80 million in additional research during 2013. Make your voice heard and help him ratify this pivotal request.
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