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.

Driftwood

Driftwood is proof you can go through some shit and be even more beautiful for it

My card for today from a adorable box Barb gave me for my birthday

The box is called “Grateful AF”

Each card has an item the author is grateful for, the other side of the card is an explanation why

This one got my attention today, a reminder when days are dark, a reflect back inspiration when a quiet moment occurs

It’s been a few days since my last post

Some of my morning quiet time has gone by the wayside because I had work related priorities to attend to or I was, in a word, fried

It’s in the morning quiet that I have time to think, write, post, emotionally recover from whatever blows Uncle Lewy has stimulated

The last 3 weeks have been a time of change for us, all good, all needed, but nonetheless a time of change to pass through

Uncle Lewy does not like change

Some of the days and nights have been rough

I did get to a point this past week I had a call with Matt’s sisters calling for intervention

Why can’t he be more grateful for all he has in the midst of this madness? The alternative, a care facility, would be so much more depressing regardless of how nice it might be

While I am struggling to remain grateful for all the wonderful things we are blessed with even though we are on this horrible journey, Matt isn’t so much that way

It’s easy to understand, truly, he is loosing his mind, one bit at a time with no tools or hope to recover

That is an unimaginable experience….even as close as I am to this, I can’t get my head around what it must be like for him

So he takes that out, in his unique Uncle Lewy Matt special way, on me, without notice, a lot

I am not 100% effective in managing it, not even sure my score, maybe 90%? Maybe lower?

It’s the missed 10% that’s the killer, the emotional killer

So maybe my quest for being grateful is trying to carry the grateful load for the both of us

I need to remind him how lucky he is even in the midst of all this

He has someone who’d move heaven and earth, and has, to make a better home for him, who says by his side even during the very hard moments

He has family is near him, loves him, is very involved in his life, his care

There is so much to be grateful in the midst of not being able to solve the most aggravating problem in life

I do fully believe there is a committee in heaven, made up of Matt’s parents, aunts, uncles, my family who has gone before us

These were not wall flower people on earth, I fully expect they are making things happen up there too!

They deliberate, they call for a vote, they decide, they communicate clearly with the big guy up there what they want for us

How else did we end up with this awesome farm house and all the other very wonderful people and things that we have been blessed with lately?

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