When we think of Alzheimer’s Disease, the focus is seemingly always on memory. The forgetting.
But there’s more.
As I watched the disease slowly take over my father, what seemed most insidious of all was the fear.
This was my father, after all. To most kids, fathers are fearless. We learn later that us kids scare the bejeesus out of our Dads (and Moms) pretty much daily, but they never show it. I never saw my father scared. I never saw my father cry.
Until Alzheimer’s got him.
He didn’t want to be alone. If you were in a room with him and walked out, even for a moment, he’d wordlessly follow you. When he wanted to go to bed, he’d insist my mother go with him. As the disease progressed “bedtime” could by 10pm…or it could be 10am. “Will you take me up”, he’d say. If she left him and came back down, he’d stand at the top of the steps and call her name. On and on it went. Only complete exhaustion would end the cycle. His. Not hers. That was not allowed.
At the very end the eyes die….you can gaze into them and see nothing. Like the eyes of a doll. But what I remember most is the light in his eyes. The way they’d dart back and forth, taking in the moment, which was all he had left. Every noise, even seemingly slight ones, would make him jump. Every movement he followed, like the hunted in the wild. Curious. Eager. Not at all disinterested or disengaged. Childlike. If you could look past the horror, at times it was even charming.
Always a sweet man, he became even sweeter. More docile. The way he interacted with his grandkids. The way he interacted with my beloved dog Abbey, who would run through the front door when we visited and immediately leap into his lap…..lick his face….to whoops of delight. (One of the most heartbreaking moments of my life came the first time Abbey visited the house after my Dad had passed. She ran to his chair….he wasn’t there. She ran through the entire house, upstairs and downstairs, looking for him. She did this for weeks afterwards….always looking at me quizzically..)
But then the fear would come over him, like a muscle spasm. Something that was just in his head would drop out…with no warning. He’d be in the middle of a room and not realize where he was….or on his way to a place he no longer knew existed. He’d see a face one minute and know it, and then it was gone. And he was left with a roomful of strangers. Like expecting 10 steps when there are 11. Over and over again. That moment when you lean too far back in your chair….past the point of catching yourself. Over and over again.
Always being in the moment, he’d notice that his fear brought out ours. Which of course just made things spiral ever-downward.
In the beginning, he knew what was happening to him. He heard the words. “Alzheimer’s Disease”. The fear must have been overwhelming. You are literally told you are, to paraphrase the first documented Alzheimer’s patient, “losing yourself”.
That patient is known as Auguste D. She died in 1906 at the age of 56. She repeatedly would say, “I have lost myself”…as she scribbled non-answers to questions (when asked to write the number “5”, she wrote “a woman”…when asked “Where are you right now?“ she answered “Here and everywhere, here and now….”) from her physician, a Dr. Alois Alzheimer.
Dr. Alzheimer wrote, “She seemed to be consciously aware of her helplessness.”
In other words…..fear. Unrelenting.
At the end, it dissipates. My father was transformed. From terror to rage. A vast difference. The man he was…was not the man he became in his last few weeks.
He fumed. He lashed out physically and verbally. It sounds bizarre, but in a way I think he finally remembered the forgetting. His furies came out, and he was fighting against the plaques and tangles that had taken over. He was sick and tired of being afraid and he wasn’t gonna take it anymore.
It was one of the bravest things I’ve ever seen.
So when I think back on his disease, what I remember (irony of ironies….) is not what he could no longer remember….but the fear in his eyes when face to face with, in that ghastly phrase, “losing himself.”
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.
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…