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Losing himself

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.”


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