"A New York Treasure" --Village Voice

Being There

My grandmother on my mother’s side had dementia and spent the last years of her life in a home. I was told that she liked to bite people. I never saw her during that time–she was in Belgium, I was here in New York–but hers is the only experience I have with Alzheimer’s. I got to thinking about her as I read Charlie Pierce’s beautiful memoir about the disease, his family curse, which claimed his father and four uncles, and which may eventually claim  him, as well.

Here is an excerpt:

The waking dream is of a dead city.

There was a great fire and the city died in it. I am sure of that. I can see the smoldering skyline, smoke rising from faceless buildings, flattening into dark and lowering clouds. I can hear the sharp keening of the scavenger birds. I can smell fire on damp wood, far away. I can feel the gritty wind in my eyes. I can taste the sour rain.

The waking dream comes upon me when I forget where the car is parked, or when I buy milk but forget the bread, or when I call my son by my daughter’s name. Wide awake but dreaming still, I walk through the ruined city.

When it happens, I remember. I remember everything. I remember anything. For years, I have been a walking trove of random knowledge, but I’ve come not to believe in the concept of trivia. I do not believe that anything you remember can be truly useless because I have seen memory go cold and dead.

“Why do you know stuff like that? people ask.

I smile and shrug. I do not tell them about the relief I find in remembering that Leon Czolgosz shot President McKinley. Not to remember Leon Czolgosz is to realize that one day you may not remember your son.  Leon Czolgosz goes first, and then your children. Not to remember is to realize that the day will come when you cannot find your way back home, that the day will come when you cannot find the way back to yourself. Not to remember is to begin to die, piecemeal, one fact at a time. It is to drift, aimlessly, deep into the ruined city, and never return.

…There’s a game I play now, when the waking dream comes. I make a deal with the disease. All right, I say. I will allow you to have some of my memories. You can have my first polio shot, all the lyrics to “American Woman,” two votes for Bill Clinton, and both Reagan administrations.

Leave me my children’s names.

Let me know them, and you can have all four Marx Brothers.

This is not clinical. I know the disease does not work this way. But sometimes, when the waking dream comes and I can feel the wind all gritty on my skin, I play this game anyway, and I am very good at it. I was born to play it. I was raised to believe that truth is malleable, and that you can bend it so that even its darkest part can be shaped into the familiar and the commonplace. I can play this game. I can play it well.

Makes you appreciate the moment, this moment, for what we have.

You can order Hard to Forget: An Alzheimer’s Story, here.

[Photo Credit: Best of Rally Live and  Jason Langer]


1 Jon DeRosa   ~  Nov 23, 2011 9:35 am

My grandmother is in a similar state, with her capacity ravaged by a number of strokes. She was aware when my kids were born a few years ago and was delighted. They were the last in and the first out of her memories.

I will see her tomorrow and my kids will get to see her. We'll hold hands and gather around her chair. I want to appear totally comfortable around her like my older brother will, but I'm scared I won't pull it off and my kids will take their cues from me and will be frightened.

2 Alex Belth   ~  Nov 23, 2011 9:37 am

2) Hey man, you can only be yourself. If you feel uncomfortable that's no excuse to criticize yourself. I know you want to present a smooth facade for your kids, but it's okay if you don't too, you know? Your boys will be fine no matter what. I'll loan you Charlie's book, you might find it valuable.

3 Jon DeRosa   ~  Nov 23, 2011 10:03 am

[2] Thanks man. I will cut myself some slack tomorrow. And the kids too, can't have unreasonable expectations for them when I know it will be hard for me.

4 Alex Belth   ~  Nov 23, 2011 10:18 am

Yeah, and things aren't supposed to be perfect and reasonable and smooth all the time. Even if our anxiety pushes us to believe that should be the case. But have some faith in yourself, to roll with whatever comes up--that's the real lesson you can give your boys.

5 knuckles   ~  Nov 27, 2011 9:42 am

I watched my grandmother battle ALZ for years and also have been working in and around the senior housing industry for roughly the same amount of time, so I feelive seen enough of this type of suffering to last many lifetimes.

The key to managing the decline from a family or caregivers standpoint is to accept there will be good days and bad days (tho the balance between the two willeventually tip in the wrong direction ) and do whatever you can to lessen the anxiety of the afflicted as much as possible. If it means not correcting them when they call their grandson by their son's name, so be it. And even if an assisted living environment with a memory care wing is not an option, whether due to finances or choice or otherwise, I'd urge anyone to go and tour a few of the ones with better reputations in your area. You might learn a bit, and can get hooked into various support groups and services your doctor may it have been aware of.

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