So I finally received the call I’d been dreading for years. It was about mom, of course. She’d been suffering from an illness under that quasi medical rubric “dementia” for at least nine years. That’s back when she started repeating herself noticeably, voluntarily giving up her drivers license and not helping pack for the big move to Costa Rica because the task confused her. For nine years the disease progressed relentlessly, shredding and collapsing her short, intermediate, and long term memory stacks – essentially everything that made her the extraordinary woman she was. The fortitude, commitment, and profound determination she employed to keep our family together during the many hard times of my childhood became qualities turned against her by a disease incinerating her exceptional mind – turning her into an imperious, combative, truculent child who would no longer bathe, brush her flawless teeth, moisturize her perfect Nicaraguan skin, or get out of a chair to do anything but to be assisted to the toilet. And that was three years before she died.
The inexorable, but linear progression of the disease turned savage and in a period of only two aggressive weeks pushed mom off the edge of the table into a bedridden, semi-conscious state refusing food. My father – 89, blind, and suffering from untreated Parkinson’s was finally outmatched. Exhausted and overwhelmed by a disease eating his wife alive that even all the financial resources he tapped — paying a housekeeper and two caregivers for the 24/7 care my mother required — left him broken, anguished, and finally in a state of urgent surrender requesting his only son come to Costa Rica, to be at his side, to help him cope.
This was a train wreck foreseen. My father and I had agreed I’d come down around the end of October when my wife would’ve returned from visiting her folks in the mountains of West Virginia. I could then smoothly transition down from the States to help in any way I could. The phone call I received from a father in tears had me quitting a shitty $10 an hour job at Dillard’s and booking a flight to put me under my father’s roof inside of three days. It would be the fifth day after arriving before noticing I hadn’t unpacked. I arrived to my father staying up all night at her bedside as she reached out blindly with hands that didn’t work anymore, calling out for her father, “Papa, papa. Por favor, por favor” over and over. Fluent in three languages, my mother only spoke in Spanish now. Dad reassures her all night long that he’s right beside her and that everything is o.k., which, of course, nothing is and never will be again. Mom is dying.
Dad goes off his head the day after my arrival, crying uncontrollably from exhaustion and helplessness. Deciding his bedroom next to my mother’s bedroom is an arrangement that has to end, I administer 10 drops of my mother’s liquid Clonazepam to my father in a cup of warm water and banish him to an upstairs back bedroom out of earshot of my mother’s plaintive wailing with instructions to have no notion of coming down until I come to get him. He gets a good night’s sleep for the first time in many, too many nights and Clonazepam becomes a regular part of his daily diet. He eats like shit, coffee and pastry and his body is wracked in pain from lack of use. He stopped walking when mom stopped. He stopped taking care of himself when she stopped. He’s stopped wanting to live.
Mom has her days and nights reversed. She sleeps during the day and cries like a lost child all night. Her misery in deep memory is punctuated only by indicating elliptically of the need to piss. Dead lifting this diminutive latina, even with so much lost muscle mass, with only the muscles in the small of my back is arduous. There is simply no ergonomic way to lift a body up from a bed. There just isn’t.
Swung gently and seated carefully down on the rented, ubiquitous gunmetal grey port-o-potty, diapers pulled down around her knees, she relieves herself after a fashion that will repeat itself twice more before morning. She taught college.
With moist baby wipes, I spread her flaccid cheeks and carefully clean her ass. I pat dry with toilet paper the vagina that pushed me out into a world of capitalism and fire.
I want to take the briefest of moments to digress, if I may. What I have to say is said to all the siblings, the adult children of parents who require long term care. From all the black sheep of the families who didn’t go to college, who fought demons, who didn’t play the game very well and didn’t get the good jobs and the lucrative careers but who were the ones – in the end – who got the phone call and showed up. Who showed up. Who showed up! From all of us to all you sisters and brothers who didn’t, I just want to say “Fuck you. Fuck you and your careers and your money and your kids and your obligations and complications! Fuck you and when I see you at the reading of the will I’ll come across the table and strangle the fuck out of you until your eyes are as dead as the stare in my mother’s eyes when she didn’t recognize who the fuck I was anymore – the stare you never saw, the diaper you never changed and the wail that will never stop on the way to your office in your fucking Land Rovers you selfish soul dead selfish rotten fucks!”
Dementia sucks. Its midnight now and somehow mom’s managed to pop the lid off 30 drops of Clonazepam that had — for a couple of hours at least — kept her sleeping peacefully. Now she’s dreaming the dreams of her infinitely shitty childhood in Nicaragua circa 1938 where she was rejected and could never live up to whatever self regarding notions her alcoholic father had and those of her self loathing mother who had three other children to raise on a meager government salary working for a bootlicking functionary of Somoza – the elder. Mom is reliving the horror of the emotional signatures from movies that run with infinite regularity in the misfiring neuronal collapse of her once beautiful mind. Now, there is only the gaping mouth and the howling, moaning and crying. “Papa, papa, por favor, por favor.” I want to drive to Nicaragua. Tonight. I want to find where her father is buried. I want to dig him up with a shovel. I want to pry the lid off his coffin and murder that cocksucker all over again.
Parkinson’s sucks. Its midnight and somehow dad just won’t go to bed. His disease eats away at his balance, patience and emotional stability. He hears his wife crying out in her fitful sleep and his broken heart aches and he cries. He cries all the time. The poetry of Carl Sandberg makes him cry. The tragi-comic irony of Saul Bellows’s Seize the Day makes him cry. He remembers the horrible injustices visited upon his life. He remembers, and he can’t stop remembering. He falls prey to their seductive siren call. He pays them his attention. They become energized by his focus and become more real and compelling. Their gravity becomes planetary and he gets sucked in. Powerless now he is reliving every nuance of that memory. His mind is captured and he becomes the object consciousness of a suicidal businessman in his forties, forcibly ejected by his father and his brother from a 23 year career at a company with his name in 1969. The Viet Nam war rages and Richie Havens, totally gassed and out of material – thrust by accident into the opening act of Woodstock – reaches deeply into his soul and intones a negro spiritual with lyrics brought up from the deepest well before an audience of a half a million souls. Freedom. My father’s chin quakes and he weeps with hands that shake uncontrollably.
Its 3 a.m. again. I’m sitting across from mom, an I.V. of saline and antibiotic running from a suspended bag into a vein in the top of her right hand. She rests peacefully enough, breathing through her open mouth. Eventually, somehow, inevitably – and soon – there will be morphine.
She forgets to breathe sometimes, and for thirty seconds or so I find myself hoping she won’t catch her breath. If my mother is in that suffering sarcophagus somewhere, somewhere lost in the catastrophic pancaking of collapsed memory, I can not see her. That person is gone or submerged so deeply, I’ll never see her again. The vibrant, self assured woman of more physical beauty, poise and intellectual capacity than generations of money grubbing sloths on my father’s side of the family – a woman who was shunned and niggerized in Saratoga Springs, NY within a family of stunning ignorance, racism and self dealing. That woman who saw it all, withstood it all with unshakable dignity finally passed away about a month ago. What’s left is a body, a suffering, emaciated frame with kidney infection, the pain of essential starvation and the psychological trauma of a progressive disease that eats away at the center of every high order brain function that makes life worth living. I wish she was dead.
My mother, breathing in cadence with her heart beat, eyes open -seeing what can’t be seen – released her last breath and moved from time and space on Sunday, August 23, 2015 and when she did, it started to rain and it didn’t stop until the following day. I walked out on the porch and knelt next to the man who she’d walked with through all the shit life could throw at them for 63 years. Convulsively rocked with overwhelming grief, asking over and over, “Oh God, is it possible”? I tried to comfort him, and as I did I wondered why I wasn’t sadder.
This is dementia. This is what it is.
It isn’t like cancer. It isn’t like anything.
It annihilates the victim in every conceivable way that matters,
and anyone close by.
I read all the books. All the best sellers in their tenth printing.
And I don’t know what the fuck they’re talking about.
But it isn’t dementia.
It isn’t what I lived through.
Or what killed my mother.
I want people to know, while its fresh in my mind.
That if you get cancer, as tragic as it is,
you can fight it with incredible nobility.
You can Edward Said it. You can Jimmy V it.
You can Susan Sontag it.
Even if it kills you.
You get dementia?
I’ll tell you the truth. And it won’t sell any books.
Cheat the devil,
and just blow your fucking head off.