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.

The Daily

Matt sleeps a lot more these days

I get a nice long private time in the morning since I get up early and he stays in bed several more hours

Typically, I have to encourage him to leave the bed for breakfast around 10 ish

During the day, his stamina is definitely less by a substantial degree

We used to do atleast one, if not 2, more challenging hikes per week, now we are lucky to get one in every other week

His confusion with objects is greater now, especially in the evening, but I am seeing that confusion through out the day now, a bit intermittent

I sat the table for dinner last night, less than 5 minutes later he is grabbing the napkins and silverware as if he was putting it away

When I, as calmly as I could muster, asked him not to move them, that I had put them there because I was about to serve dinner, he threw down the napkins in apparent frustration

My sense is he is getting frustrated at however he sees his environment

Maybe a combo of confusion, can’t figure it out and frustration

Buts that’s only a guess, my guess

He doesn’t really say or describe his world to me, or if he does some how, it’s not in terms I can understand

In the evenings his wandering and agitation is heightened for sure

We have certain routines that are fading away….or I have to explain to him his part now

For example, in the morning I cuddle up in my corner in the sunroom, blanket on my lap, reading, journaling, blogging….

When he gets up, wanders around a bit, he asks if I want more coffee

The routine has always been he’d bring the coffee Kraft over to fill my cup

Now, he may ask the same question, but the execution might be different, or he might not execute at all

He may fill another coffee cup up and bring it to me

He forgets my favorite coffee cup is the one Gary gave me just before we left Virginia, beautiful hand made blue wave cup

I find great comfort in using this cup every morning

I digress…..sometimes Matt puts sugar in the coffee he brings

All to say, these little private rituals are impacted now

What used to be comforting, predictable, is becoming tattered along the edges

There is sadness there for sure

The other ritual we had was I cook, he cleans

Since there is a gas stove here, it’s even more important I am the cook and he is hands off

But now, his part, the cleanup, is often on the kitchen counter in the morning

If he does clean, I now swoop behind and put the dishes into the dishwasher because he often engages the help of Sheba in clean up

I am never sure if she gave the dish the last lick or not….so into the dishwasher they go now…

So that’s duty split….is different

The changes are often shuttle, small, then I look back and realize how they have added up

One response to “The Daily”

  1. Michele McAteer Avatar
    Michele McAteer

    Hugs Cj. 💞😔 I’m so sorry and yes, this is sad. Keep dancing your dance together and I’ll be wishing for more surprise “arm slides.”💃 Love

    Like

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