Life after Ethel, and why I'll never, ever give in to Alzheimer's | Bill Lyon

In this photo from April 2017, Bill Lyon, and his wife Ethel, back right, settle into their stair-free apartment at Wesley Enhanced Living Main Line.

One in an occasional series.

Last month retired Inquirer sports columnist Bill Lyon dictated this article about his ongoing fight against Alzheimer’s to longtime Sports colleague Gary Miles. It was edited for style and clarity.

This is life without Ethel.

The line of mourners inches along. So sorry. So sorry for your loss. We fumble for the right words. So sorry for your loss. We comfort, and we search for the right things to say.

My wife is gone now, and I struggle with what I am supposed to do. Everyone grieves in their own way. There is no manual for grief. What you should do, I am told, is to go ahead and mourn. Then celebrate the good times, and we had a lot of those.

So I’m going to resume my crusade against Alzheimer’s in her memory, and remember the mantra we shared: resist, persist and never, ever give in.

Camera icon Jessica Griffin / Staff
Ethel and Bill Lyon in April 2017.

***

I reached 80 the other day. I’m not sure what that means. Well, the obvious thing is that you’re getting old. Eighty is old, and the woman next to me here in assisted living is 105. Kind of puts it in perspective.

My next-door neighbor, Teddy, says 80 means you’ve outlived all your enemies.

Taking an inventory now of these last few months, I’m still alive, still surviving. Had some close calls. Fell again. Fortunately it was kind of a slide into second base.

That’s the first thing you do when you fall — reach for the coconut. See if it’s OK. Head landings are bitches. I’ve had five of them so far, and I’m still kicking.

Since last we met, I went into the hospital, a place I’d never stayed overnight. I was there for two weeks for major surgery.

Everything about a hospital that you’ve heard is true. You don’t want to go in — ever.

In the hospital you learn that modest went out long ago. The flimsy gowns. The cold floors. The waking up at 3 in the morning for a sleeping pill. The succumbing to incontinence.

You find out what it’s like to lie in your own urine and call for answers. You’re manhandled by large people who throw you around like a hacky sack.

Also, I find my nemesis, Al, follows me everywhere. Al, you may recall, is the name I gave to the face of Alzheimer’s. Al heretofore was known as that little slimy rat bastard. But I’m not giving in to him.

***

Oh, yes, walkers. The last hurdle. You start out as a baby crawling and then walking, however unsteady, then running.

And you take all that for granted until you break something or until parts start to break off. You have to slow your gait down, give in however grudgingly, until you reach the point where you can go no farther.

Now you have to have help. A wheelchair maybe, or a walker. I resisted, resisted, resisted. Finally it occurred to me that this walker was not such a bad idea after all.

It gets you into places you wouldn’t ordinarily get into. In assisted living and retirement communities, there are flotillas of walkers.

When it’s dinner time it looks like the Oklahoma land rush. For that 4:30 p.m. meal, a lot of people with blue hair and no hair jockey for position. And don’t be deceived by slightly shriveled-up women who look helpless and oh-so-sweet. They have sharp elbows.

***

Camera icon Clem Murray / Staff
In February 2017, Bill wrote about his decision to use a cane to help him with balance issues.

The bane of my existence now is a matter of balance. Equilibrium. You go to reach for something, and you miss it by a lot.

Compounding that are the tremors. Miniature earthquakes. Or as my great-grandson says, “Pop-pop has the shakes.”

Equilibrium plus shakes equals a lot of “Cleanup in Aisle 3, please.” Also, even though there are no steps where you live now, you see them in your imagination.

Then there is the matter of something that used to take no time at all: getting dressed and undressed.

You lose this battle grudgingly an inch at a time, and you come to have almost total dependency. Fortunately I’m surrounded by a strong support group.

So I learned that it’s not so bad being helped. On a good day I can wrestle into a shirt and pants and a sweater, and it takes only about 15 minutes.

All I need to hear is Al cackling to strengthen my resolve, and I swear in the background I can hear Ethel urging me on, on, on.

***

This is what Al has taken from me. When I try to read something, I have to go back and reread it two or three more times. I am no longer able to write. I used to have cursive handwriting that I was vain about. Now it looks like something out of the Dead Sea Scrolls.

Simple acts have become frustrating. Reading a newspaper befuddles me.

One thing you learn about here is dying. No one shies away from that. They’ve made their peace with this, so let’s get on with it.

And the roll call changes fast. One day you wake up, and there is an empty chair. But there is frank discussion here about death. And on occasions, you get a laugh out of it. I found it helps to have a sense of humor.

Initially, I thought this was grim. But the people I’m with now, well, they resist, persist, and don’t ever give up.