It may not be over after all …

So I’m back in South Carolina, getting re-established after three years as a family caregiver. Got a decent little gig working for the city and everything.

Except …

This is at the city yard where I start work, and I ride around in one of these trucks all day. Sometimes I even get out of the truck and do something constructive. It’s a city job, y’know.

But the billboard … you know that hit me right away.

Guess that means something.

Today I put together a resume and started throwing it out among some home care agencies. Maybe the caregiving thing isn’t over yet.

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.

Sense of time? What sense of time?

I guess when dementia takes over, a guy’s sense of time goes all over the map. We have clocks spotted all over the house, and he believes none of them. So his schedule is even more messed up than usual. 

Like last night. We were fixing to go to a caregiver’s party, entertainment provided by a bunch of musicians including myself. And getting everything out the door took some real doing.

But Dad running behind. He had his usual leisurely lunch, took a while to get his shoes on (with help), and took 10 minutes to locate a handkerchief. We got out the door and over to Goeske, giving me maybe 15 minutes to load in and sound check. 
From the journal:

That may be the new normal. His sense of time is all shot. Right now there are two time frames in the house: Daylight and dark. He’s sleeping in his chair more, and he’ll often be up rattling around at 3 or 4 in the morning. He was never the type to be on time for things anyway, but lately it seems someone sure busted his watch.

His new clock is called “looking out the window.” As I wrote this he made something like his thind or fourth trip in an hour to look outside. He even interrupted his lunch to do this.

“It’s dark,” he said after meditating on the blackened view for a few minutes.

Now myself, having a bizarre sense of humor, had to check.

“It sure is, isn’t it?”

It’s not supposed to be this dark.”

I move to the other side of the house and check the windows the other direction. “Dark over there too.”


“Yeah,” I say. “It’s dark everywhere.”

Hey, caregiving’s strenuous enough. I have to amuse myself somehow.

Don’t know if it’s a sundowning thing, but his schedule is all crazy now. Meaning my schedule is all crazy. Now if he starts getting up at like 7 in the morning, I’ll know everything’s gotten weird.

I remember in some of my caregiving classes we talked about sundowning but I never really experienced it until lately. Maybe this is it, and already I don’t like it.

Guess this means I have to adjust.

Talk to me: What are your experiences with sundowning? Please share.

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. 

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.