Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

Yesterday

Yesterday didn’t go quite as planned, hoped

It was supposed to be a 4 hour shift for Courtney so I could work

Matt was uneasy for some reason

So I adjusted my plans, we all went on a hike around the lake

I feel it’s important to get back into some routine that includes him hiking, we have been distracted with a bunch of other things it seems lately

Later, she had to go run an errand so I checked in with him

I asked him about the morning, what made him uneasy going on a hike, just the 2 of them and Sheba

He really couldn’t say

He likes her, enjoys her energy she brings to the house

He understands, volunteered, I need time to myself and that’s a big reason she is here

This is just a big change

It will take time to adjust

He has been having more delusions and hallucinations recently

I can sometimes see him trying to do something with his hands

Like he has a string or a piece of something

But I can’t see the thing he sees

Sometimes he gives it to me, I take it, say thank you

Yesterday morning I think he was deluding. He worried he was going to be picked up, I couldn’t figure out who, but I assured him no one was coming to take him away

Later in the day, he realized he ran out of beer

This is a fairly traumatic moment, so I took him to the grocery

As he gets into the car, he expresses distress that where he was going, 6 guys were going to rape him

No clue where that came from, but I assured him we were not going anywhere that would happen, that he was deluding

He seemed to calm down quickly

Every change to the environment does cause some ripple effects

We are clearly going through one of those times now

More hallucinations, delusions

Hopefully this will pass soon

I know we are better positioned for what we expect ahead

So this seems to be a passage worth pushing through

We will see what today brings

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