Caregivers and care recipients take a break

A bunch of caregivers and their charges had a good time at Nights Of Hope And Joy, a monthly event put on by a few organizations in Riverside CA.

A chilled-out caregiver is a better caregiver. Or something.
We caregivers got ourselves a break.
So we had to move some balloons out of the way to get to the chow.
So we had to move some balloons out of the way to get to the chow.
Thought about getting my face painted, but someone beat me to it.
Thought about getting my face painted, but someone beat me to it.
My man Jim. He knows every song ever written, and if he doesn't it's not worth singing.
My man Jim. He knows every song ever written, and if he doesn’t it’s not worth singing.
Ella and Richard stop in front of the camera while event coordinator Rich Gardner photobombs.
Ella and Richard stop in front of the camera while event coordinator Rich Gardner photobombs.

Protecting the computer: From geek to …

He's not as geeky as he once was, so it's time to compensate.
He’s not as geeky as he once was, so it’s time to compensate.
Dad got his first computer around 1990 or so, and after some resistance he got to liking it. He got to where he could make it twist and shout if he wanted it to.

Same thing with the Internet. He thought it was little more than a toy, until he bit that apple. He came to do everything on the computer, even getting into online banking before I did. He taught an Internet 101 class at the local senior center. I’m geeky enough but he gave me a good run for my money.

Now, different story. Have to admit, the fact he’s still using the computer is huge. All I ever see him use any more is Yahoo! News and Google Calendar, but that’s still pretty good. However, I’m more or less on call when he boots the thing up.

So yesterday he inadvertently downloaded/installed some piece of software that, to put it charitably, screwed things up. The NCH suite is one of those highly-questionable programs that hijacks your computer and takes an act of Congress to remove. To give an idea, try a Google search for NCH Suite. I checked today. Of the 10 links on Google’s front page, five asked a) is NCH safe, or b) how do I get rid of the stupid thing?

Back in the day there was no way something like that would have slipped by him. But now?

Damn dementia.

So the tech crew (all one of me) trotted in. After considerable research I removed the program, which is really kind of similar to defusing a bomb. For sure, some things needed fixing right away. Forgive me if I go all techie on you, but you might find this useful.

Dad’s computer has three user accounts — his, Mom’s unused one, and mine. Generally the both of us use his for simplicity’s sake. But we uncovered some problems:

  • His account is also the administrator’s account. Which means you can install stuff, delete stuff, and do a whole lot of damage.

  • Somehow his account was set up so you didn’t need a password to get in.

Security? What security?

Especially when a guy clicks randomly on some blinking ad to get some computer tool that could be promising. Hey, if you see it in an ad it’s probably malware, so forget that.

But without the safeguards in place it’s easy to install some garbage without even a thought. And blow up your computer in the process.

So I did a few things right away:

  • Renamed his administrator’s account as ROOT (taking a page from Linux) and gave it a solid password.

  • Created a user account for him. It wouldn’t let me set it up without a password, so I gave him a simple one. Still looking for a workaround there.

  • Inventoried how he uses the computer. Not much. Google Calendar and Yahoo!, and maybe a few other things.

  • Cleaned out his icons & menu commands. Just the basics. He’s stopped using Open/Libre Office so that icon is gone. As he needs to use more tools they will be made available.

  • Working on transferring his documents from /ROOT to his own account so he could get at them. If he ever needs them, which he is absolutely sure he will in the future.

Still putting the workarounds together. Trying to lay out the screen just the way he had it, and if he could sign into his user account without a password that would also be cool. Mostly working on look and feel. The main task — protecting the computer — has been done.

Now I’ve seen ads for computers designed for seniors. Forget ’em. Those I’ve seen are ridiculously overpriced. Like even more overpriced than an Apple. Those I’ve seen are quite condescending; sending the message that the poor incompetent senior needs a totally dumbed-down rig and a ton of handholding to run a computer. Which is a bunch of yak squeeze.

But still …

Caregivers, care recipients to party on

If y’all are in the Inland Empire and are taking care of someone, come on down to the Janet Goeske Center in Riverside & bring your care recipient. That’s Tuesday at 6 pm.

If you’re not in the Inland Empire, it might be worth flying in. Neverknow.


Hey, it’s sort of a break for me. Dad can hang out with some other folks.

“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.