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.

heart fissure

My heart broke a little recently

Matt asked “I don’t understand why I couldn’t go”

I am in Virginia on a sprint of a trip, 48 hours, to get the final bits and pieces of our “stuff” out of the house

Its not, in the scheme of things, a lot, but some of it has significant personal value, so I felt I needed to shepherd this to the finish line

My swimming ribbons, scrapbooks, trophies

All those pictures and negatives only available in physical form…..long before cell phones and their cameras and the amazing amount of photo storage we get for free these days

I want to store some with Mom who lives nearby so I can kick the can down the road a bit

As I come back to visit Mom in the future, I figured I could grab a box, visit with it, digitize it some how, and give these physical things a proper good bye, but not loose the memories

Then there is the last bit of shredding we need to deal with, some stuff that needs to go to donation, some stuff Chad might be able to sell, some other things destined to be in someone else’s hands rather than the dump and, always, stuff that needs to go to the dump

So much stuff that went to the dump (argh)

I am doing this trip alone, without Matt

That was what I wanted, how I set this up, but why?

Have you seen the Monty Python movie “The Meaning of Life”?

There’s that skit where the King is trying to get the guards to make sure that the Prince doesn’t leave the tower……and every instruction the King gives the guards they do something different?

Yeah, that’s what its like now with Matt when we need to get things done

He can’t self manage too well, can’t be self directed, and he can’t interpret instruction and follow it

The other day in California we asked him to go grab some tongs from the kitchen, when I checked in on him 4-5 minutes later, he had found a cookie and was eating it, so I grabbed the tongs from the kitchen

Oh, and worse, he does things that I then need to undo, so it adds work, doesn’t lighten the load to have him near. makes it harder

So not only do I physically need to do more work, I am emotionally challenged to keep my cool…..which, doesn’t always work out so good

It is so the opposite of how it used to be

So in a 48 hour turn around situation, this is just a pressure cooker of stress already, add to that trying to keep him on point, undoing what he just did, emotional restraint…..

It all creates conflict, no matter how “nice” your voice is

Some times avoidance is the best route

So he is in California, in the loving care of Barb, while I run the gauntlet here

I have my 2 day, 48 hour plan, and I can stick to it, roll with it when variables change, but I can get it done without frustration developing between us…avoid saying the wrong thing at the right moment……

When he said “I don’t understand why I couldn’t go”, it put another fissure in my heart

Its not his fault, he, Matt, could do this. Uncle Lewy is at fault here, not Matt

So I said “Someone needs to watch Sheba, so we had to divide and conquer”

And to that I added “You are having way more fun than me anyway! I’d rather be hanging out with you and Barb any day!”

Finding that right thing to say in that moment can be a real challenge.

Finding that truth that will resonate, sooth

Or crafting a wee little “fib-let” that will let him move along into a better head space

Its all so tricky…..and these moments, because I would rather have him with me, and that is the truth, if it weren’t for Uncle Lewy

One response to “heart fissure”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    Oh, CJ, my heart is with you.

    Liked by 1 person

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