“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.

Here’s what dementia and (probable) OCD looks like

Uhh, Dad, a couple of stacks are crooked.
Uhh, Dad, a couple of stacks are crooked.

Am I going to clean this up? I mean I can use the counter space.

Answer: No. He finds comfort and/or entertainment in his stacks. As long as the bills get kicked out to where I can actually pay them, I’m good with it.

Associating something with a bad memory

Essential tool, but it brings bad reminders.
Essential tool, but it brings bad reminders.
This is weird.

I was playing doctor yesterday; doing a little wound care for Dad, and I got fully prepped up. Assemble tools. Thorough hand washing. A final touch-up with hand sanitizer.

Everything’s cool, right?

Yeah, until the hand sanitizer part.

Now, I don’t care much for the stuff anyway. There’s question about how effective it really is. It dries the skin. It gives the idea you can get away with a slipshod hand washing. But that’s nitpicking, so I continue using it.

Here’s the thing, though.

When I was taking care of Mom, I ran through that stuff like crazy. Every time I poked my head into the sick room, a few squirts on my hands. Just to make sure. Every time I did something constructive like wound care, changing her, dressing her, transferring her, more hand sanitizer. Made a lot of sense. She had the MRSA a few years, and ran through a series of infections that eventually killed her.

So I hit my hands up before taking care of Dad’s wound. Hand sanitizer has a distinct smell and feel, and I associated those with taking care of Mom in her final days. I associated those with death. A form of post-traumatic stress? Maybe.

Enough to make a guy want to give up the hand sanitizer habit.

Okay, I admit to being a little crazy. But still. There are a lot of issues that come with being a caregiver, and the mind makes associations that’ll probably last a while.

In the interest of good care, though, I’m still using the hand sanitizer even though I really don’t like it.

What say you? Any positive or negative associations that came from caregiving? Please share.

Trump and the trash man on the same list


Journal entry, August 15, 2016:

Got some amusing mail coming in today. From Donald Trump’s campaign staff, and I pitched it to Dad just to mess with him.

Dad has an almost irrational dislike for The Donald. Okay, I don’t like the guy either for reasons of my own, but Dad’s dislike is special. When I pull up the news and Trump’s face shows up, Dad has the same response:

“Who’s that? Dumbshit again?”

Never fails, and myself being the opinionated snarky type who always needs to make things interesting, you know I’m gonna yank his chain.

He has a few other people on that list of his: The trash man, who Dad calls Fatass. The next-door neighbors (although the one on the other side is probably worse, but she gets a pass because she’s attractive and friendly.) A few others.

See, Dad was never like this before dementia. I mean he wouldn’t like certain people, but not like that. I guess it’s just one of the changes that happens when dementia takes the brain over. The filter goes, along with everything else.

Maybe in a perverse way it’s fun to play with, but it’s still not fun to see.

All the news that fits, we engage

Engaging over the news is better than just reading it.
Engaging over the news is better than just reading it.
Dad’s always been a news buff. He always liked knowing what’s going on in the world, and that hasn’t changed much. The only change is in how he gets the news.

That’s become a favorite way for us to engage. Might even be the high point of his day.

Guaranteed, when I’m at the big screen computer Dad will come in and park himself in the chair behind me. I know what that means. Take a break from whatever I’m doing. Pull up Yahoo News and start sorting through stuff. Or go to my Twitter feeds and look for the hot news.

He especially likes the videos. Crank up the volume, go full screen, and he’s happy. If a story doesn’t have a video I’ll read it to him and interject my own commentary. Just like in the old days he gets into the political scene; the Trump/Clinton campaign is always good for a few laughs anyway.

Some of this gets pretty funny because we’re on different ends of the political spectrum. Admittedly, I’m just to the right of Genghis Khan. Dad isn’t. He’s already decided who he wants to vote for, while I favor lining them both against the wall and starting the whole mess over. Sometimes this sparks some pretty lively conversation.

It’s that engagement thing. I guess dementia is a pretty lonely disease; you’re just a prisoner of your own head. Anything to engage, to start conversation, to actually do things, is a big part of coping.

Watching the news on TV or reading it online is fine; it keeps the care recipient somewhat informed of what’s going on. But that doesn’t keep him engaged unless he cusses out the TV.