A caregiver’s most powerful words

This is open to debate, but here’s what I found:

Mon – and especially Dad – would get these dementia-based fixations about something. It could be anything, from going somewhere to doing something he won’t realistically be able to pull off or is even advisable. Like taking a walk downtown when he’s bedridden or investing in hairless chinchillas, for example.

So the powerful words?

“Remind me.”

Works (almost) every time.

What are some other “magic words” that help you in your caregiving experience? Please share.

Declines, skilled nursing, and hospice: All are emotional

Nut graf: As dementia progresses, more care is needed. Some of it gets pretty emotional, and “hospice” is a loaded word.

Definition of gross: A pureed PBJ sandwich.
It’s been a rough month. Dad had been showing some decline a month and a half ago, then the brakes came off. Now he’s receiving hospice care.

To my understanding, hospice is for a person’s last six months, but when it’s late-stage dementia the time frame could be as much as two years. Still, the implications are pretty heavy.

Here’s how he got this far:

Journal entry, Feb. 13, 2017

Dad spent a few days in the hospital with some sort of bug and dehydration two weeks ago, and is now in skilled nursing. Lost his ability to walk, totally loses focus when eating, and gets real agitated. He’s on constant supervision, usually has to be hand-fed, and would be an escape risk if he was mobile. On top of that he’s had at least one UTI, and y’all know the drill there.

Today he a) tore the curtain rod out of the ceiling over his bed – still wondering how – and b) was having even more trouble eating. Beginning to wonder if he forgets how to chew.

Looking at options right now. Will start vetting potential relief caregivers, ’cause I’m gonna need it when he’s paroled out of skilled nursing. Neither Dad nor I consider assisted living an option, but I might have to be a little more realistic here.

Journal entry, Feb. 16, from skilled nursing

On a pureed diet right now. Looks gross, & the server wasn’t sure what was what. Choking has been a problem.

One of those dementia fixations. He’s wearing those gawdawful padded boots & he wants the okay to take them off. The nurse says no. So he’s asking anybody who passes by. Orderlies, delivery people, other patients, visitors, food service personnel. Getting on everybody’s nerves. It’s pure dementia.

Then I got word that Dad had plateaued in his physical therapy. Meaning what I saw was as good as he was going to get. No longer ambulatory, no longer continent, and his dementia had taken a dive. Now he’s in late stage.

That’s when I started seriously considering getting some backup:

Started looking into caregiver agencies who can spell me at least one day a week. That’s the best-case scenario. Worst-case may have to be like a nursing home. Hate that option. Part of it, I’ll admit, is that going to a nursing home is tantamount to me admitting defeat. But come on, let’s be realistic and screw what my ego says.

On Feb. 23rd, the doctor ordered hospice care. In fact, that was right when I was interviewing a potential caregiving agency, so this changed the equation by a lot.

Meanwhile for this caregiver, this meant getting supplies — hospital bed, wheelchair (through hospice), a food processor because his food has to be pureed, comfortable clothes, all the incontinence goodies, and whatever else I could think of. Was slap worn out after all that running around.

Journal entry, Feb. 25

Dad discharged at 1030. Straight into hospice care. He was brought home and set up in his brand new hospital bed. He likes it, but I think he especially likes coming home. We hung out and talked for a few minutes, then he went to sleep. Everything’s copacetic.

Nurse’s assessment done, some supplies here. Follow-up tomorrow. Dad’s sawing logs right now, but I can understand that. This moving is sure hard work.

So now I’m a little tired, but from here on out the emotional toll will be the worst part of it. Oh yeah, and the self doubts. Could I have done things any different? But here’s reality: All of this was inevitable, and hospice care is best for him considering his condition and longstanding family wishes.

Stretching the patience

From the journal:

A lot tougher lately. Dad’s memory has taken a hit lately, and it’s not pretty. Like today he asked – a couple of times – where his bedroom is.

Not good. That’s when the caregiving gets difficult. Being a person’s eyes/ears/feet/hands is one thing. But being a person’s brain?

Happy New Year, y’all. 

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 …

Updates, 1/1/2017: Managed to have his account come up by default without a password. That’s the good news. The bad news is, I can’t remember how I did it.

Meanwhile, he uses the computer less and less, and has to ask me how to turn it on again. Give him points for trying, though.

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.