“He simply couldn’t bear the idea of one less smile in the world”

Gene Wilder, who delighted kids as Willy Wonka and made adults laugh with Young Frankenstein, died the other day. But it wasn’t until a day or two later that we learned he had Alzheimers.

According to his family, the disease — which they called “this illness-pirate” — was his unwelcome companion for the last three years of his life.

But unlike Ronald Reagan or Charlton Heston, he kept his diagnosis within the family.

Now, here’s the thing both the dementia patient and the caregiver have to wrestle with: Shall we go public or not? And if so, how public?

Short answer: It’s complicated. Or more correctly, it’s personal.

Wilder’s movie roles were always joyous experiences. Good comedy, and it fit his gentle nature quite well. How could a youngster make the connection between the young Willy Wonka and the vastly diminished version of Wilder?

They said Wilder did not want to disappoint “the countless young children that would smile or call out to him, ‘There’s Willy Wonka’” or expose them to the cruel realities of the disease.

Let’s let the Wilder family tell it:

The Wilder family statement surprised Gene's biggest fans.
The Wilder family statement surprised Gene’s biggest fans.

To hide, or not to hide?

It’s still a personal decision, and a tough one. Like with Reagan. His family broke the news of his diagnosis in an open letter, and that was just about the last we saw of him. We know nothing about the man who no longer recognized Nancy. We still have the memories of the world leader who dared Gorbachev to “tear down that Wall.”

I have memories of ultimate leading man Heston in his films, and as the man I met on the political circuit in the mid-1990s. After his diagnosis he faded out of the public eye.

I still have memories of Charles Bronson in his movies. I know nothing about the shell of Bronson after Alzheimers robbed him of his ultimate badassery.

For better or worse, Glen Campbell and his family put his disease right out in front. He might have never known, but he became an eloquent spokesman for Alzheimers awareness. Concerts, documentaries, one last song, he did the whole thing.

But the choice is personal, and it’s not just for the caregiver’s convenience.

Like with Dad. He’s always been a brainy guy, and when he went into the retail business he had to almost force himself to be social. Now it hurts to see someone who has trouble with simple concepts, and I often have to talk him through instructions a step at a time. But he likes to go out, and it’s good for him. Going out to hear some music on Tuesdays. Going out to dance and hang out on Thursdays. Going to the local community theater. Even something like getting a haircut is a big adventure, and he’s always ready to go for something like that.

At this point — and he’s edging into late-stage dementia — he gets stuffed into a closet only over my dead body. Sure I worry about him falling, and when he leaves my sight I have to watch him in case he wanders. But as long as he’s up to going out I’m ready to drive.

But that’s personal.