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A word about Alzheimer’s

I wanted to get this out today. I don’t know why. I’m missing him. That’s probably enough. But maybe I’m starting, for the first time, to feel my age.

But really, ultimately, I’m asking that you help….and give what you can. Because we need to beat this bastard.

Alzheimer’s took him. It’s been 5 years now. My father deserved better. He worked hard his whole life. He was unflinchingly honest and decent. Never shirked. Earned everything. He had plans when retirement came. Travel. A book. Spoiling his grandchildren, who adored him. It was all gonna be done on his schedule. Finally. Not somebody else’s.

It’s insidious….this Alzheimer’s. There’s no warning. All we know is that the longer we live, the more likely it’s gonna come. It’s like waiting for the storm…and when it comes, watching the water rise. Slowly. Inexorably. It’s a ghastly thing, a bit like being punished for the crimes of a stranger.

Oh sure….we fight it. There are pills. Aricept…Namenda….but they don’t do much…maybe slow down the progression, that is if the side effects aren’t intolerable, which they often are. Ultimately, what we call treatment is no more than bailing the flood-water with a bucket. A band-aid on a severed limb.

There is no cause for Alzheimer’s. And, currently, there is no cure. It is always fatal.

In the beginning, he knew something was happening. The words which always came easy didn’t come easy anymore. The faces that drew names to his lips didn’t draw names anymore. There was a series of fender-benders. Left turns from the right lane. One way streets and mixing up green and red and yellow. He could no longer tie his tie. Things that could be explained if you tried hard enough and we tried like hell. He was always active….always moving. His mind could never be idle. “The devil’s workshop” he called it. As kids we’d vegetate in front of the TV for hours….and he’d shake his head. It said “where did you people come from?” Now, he’d spend hours in his chair. “Seinfeld” re-runs mostly. He’d laugh and laugh….the same episodes. Like it was the first time. The typewriter on the dining room table sat by itself. Eventually it was moved into storage. Not hearing those keys took some getting used to. Imagine living on the beach and not hearing the waves. Still, he was still there. He smiled. He laughed. We visited. Sure he was slower. But that’s just getting older.

Right?

We knew. We had to know. But we didn’t talk about it. Because…well…we just didn’t. Maybe alone at night in our cups, whispers….

It was the middle of the day. I was sitting at work when the phone rang. I didn’t recognize the number but I knew the voice. It was him. He sounded….confused. Foggy. He was calling from a cell phone. I found out later that he had just gotten a hair-cut at the same barber shop he’d been going to for years. My mom had dropped him off and was running a few errands. He wasn’t sure who he just called. He was just saying, “hello? Hello?”…..as if I had called him.

I asked him where he was. He wasn’t sure. I heard cars driving by. He was outside. I was scared all of a sudden. Fear rising like something in the throat. I could hear it in his voice. He was too. I called the house phone using my own cell. I got voice mail. I was trying to contact my mother. I was asking him where she was. He was saying he didn’t know. Then…as I was reaching for my coat to get him….from where?…..she pulled up. I could hear the relief in his voice. “Your Mother is here. Do you want to talk to her?”

My hands were shaking.

I knew before this….but this is what it took. This was sitting in a crowded, noisy bar….and the background noise of the juke-box being turned off…and the band kicking things off with an AC/DC song. Thunderstruck.

This was a man who traversed the streets of Manhattan and Paris like he could have been giving guided tours. This was a man who never lost his cool, whether he was in the midst of the chaotic Democratic Convention in Chicago in 1968, or sitting across the glass from cold-blooded murderers, trying to make sense of their crimes.

And now, he was mere miles from his home….lost. And even worse, scared.

I’m sure a part of him knew what was coming, for a time at least. Eventually this disease robs you of even knowing you have it. If it gives you anything, maybe this is what you would not spit back.

It teases the rest of us….because there were subsequent days when what happened that day would not have happened. Lucid days that flickered hope. …and we thought….it’s just age. It happens. It’s….normal.

But, again, and maybe only in our cups….we knew. No. Enough bullshit and false hope and pills and prayers and pretending that him not being able to sign his own name was because his eyes were bad.

And so a few years later I got another call. This time from my Mother. She was crying. Terrified. She needed me there.

He didn’t know her anymore. He wanted her….whoever she was, to take him home. He wasn’t sure where he was, but it sure wasn’t home.

When I got there, he knew me. But the only woman he ever loved…his constant companion for 60+ years, was a stranger. The pain in her face seemed the visual equivalent of a death sentence. He wanted to see her, but he didn’t know who she was. “Take me home” he kept saying. So I said….”ok, I’ll take you home now.”

It had taken us years to get to this point. Years of quiet, unseen heroics from my Mother, who watched over him like a bear. Years of him hitting literally hitting himself in the head, saying “what’s wrong with me!” But never in front of us kids. He protected us to the end. Years of whispers from friends and former friends alike….some understanding, but most not.

We went to the hospital that night. He never spent another night in his own home. He fought like hell, and it was almost impossible to watch. When he decided that what he was fighting for wasn’t as important as what he was fighting against, it took a few peaceful days. He was gone.

So when I think of this horrible disease, I think mostly of those 2 days. The day he first got scared, and the day he felt so sure of himself that he said to me, “take me home”….despite the protestations that home was exactly where he was.

Alzheimer’s disease will be cured someday. Polio. Smallpox. Diphtheria. Malaria. Typhoid fever. All deadly. All met head-on by the best and the brightest. And bested.

I want to be here when Alzheimer’s is tossed onto that same scrap-heap. I want to be able to visit his grave and say, “you were right about idle minds. How about what we’re capable of when we keep moving?”

If you could help….in any way….I’d be so grateful.

In a bit…

–tf

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