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.

Staying ahead of the food fixations

God help us if his tastes change overnight.

Grocery shopping gets to be a challenge if you’re a caregiver, even if it’s simple. You may find your care recipient gets strange tastes sometimes, and it’s difficult to keep up with them.

Like Dad. His diet is fairly simple, yet it’s an abominable one. Prepackaged frozen rations every night. No variation; he has three that he chooses from. All Italian, all heavy on the pasta, all relatively tasteless.

Doesn’t bother me any, but I’m not eating those. See, I’m a fairly decent cook. All kinds of great Southern meals: Ham hocks with butter beans and cornbread, and fried catfish with hush puppies. Some Mexican, homemade Texas chili with tortillas made by hand. Also my world-famous spaghetti. But these represent sea changes he’s not ready for, so I’ll have several things going in the kitchen. His microwaved meals, and whatever it is I’m eating.

But he gets on these food fixations, and they occasionally change. On top of that, he’s heavily into bulk buying. Keep that freezer full, a whole bunch of everything, rotate the new ones in behind the old ones. Just like he did when he owned a store.

So you can guess the rest, right?

Anybody want some rice bowls?
We still have two cases of teriyaki rice bowls in the big outdoor freezer. They were one of his staples until about a year ago, at least once or twice a week. Then he decided he was tired of them.

I can understand that.

So there they sit. I’ve eaten one or two of them and it takes a ton of pepper and other spices to make them edible. Fortunately, they freeze well and they’re so shot full of preservatives they’ll outlast the family’s seventh generation.

Bananas were another food kick for a while. I started picking up about a dozen per week, knowing he’ll eat most of them. That’s okay, I like them too. But then he stopped, I was getting full of bananas, and what was left started turning funny colors. Dad’s so resistant to the idea of wasting food that I kept them in the kitchen until they turned liquid inside the peel.

For a long time, cashews were the thing. He kept jars and jars of them, and he saved the empties. When I took over this caregiving thing, I noticed the stacks and stacks of empty cashew jars in the garage. He knew he had uses for every one of them. You wouldn’t believe the negotiation I had to do just to get rid of them. (Footnote: I use some of the jars now as canisters: Rice, cornmeal, masa flour, regular flour, and grits. Now I’m running out of them.)

There’s always Moose Tracks.
You guessed it. He stopped eating cashews, so now we have several full jars.

We still have several large cans of instant cappuccino, which I won’t drink. Feeling queasy just writing about the stuff. Yep, he stopped drinking that too.

Now he has a glass of milk with breakfast and a glass with lunch. That’s fairly recent, so I have to watch and anticipate any changes in his tastes. At some point he’ll get tired of the milk.

I guess that’s a dementia thing, and maybe part of aging in general. I understand the part about the taste buds losing their touch. About the last thing that remains is the taste for sweet stuff.

His taste for Denali Moose Tracks ice cream will probably never die. Unless it does, but I’ll make sure that doesn’t go to waste.

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. 

Holidays max out stamina and memories

Christmas with family. It did a number on Dad's stamina.
Christmas with family. It did a number on Dad’s stamina.

Christmas gets stressful for your loved one, and some things aren’t quite the same.

We go easy on Christmas, partly because Dad’s not fully aware of the holiday and partly because Mom’s not around to bug us. Don’t really need to go there; too many memories.

We did have dinner at my cousin’s place, and you could tell he was maxing out on his stamina. He did enjoy himself, though.

This one went without incident. He didn’t fall in the bathroom this time, though we were all watching him like a hawk whenever he got up. Lining him in front of the Christmas tree for a family photo was a little much, especially because he had to go up a step to get to the living room.

Now, home. With a care package of desserts. He’s demolishing that now. Has to regain energy.

How about y’all? How was Christmas for you and your loved one? Please share.

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.