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.

Words Matter

It’s been a bit of a mixed ride the last few days

While it’s been remarkably nice to have a smart, kind, funny, energetic additional sole in the house

Matt has been in full form in the evenings

He has this thing that kicks in in the late afternoon / early evening called “environmental dependence” by his new neurologist

He paces around, picks up a thing, he may put it somewhere else…..you have read my priors on this

Some call it sundowners

I can’t tell you how unsettling it is when he is in full form of whatever this is

I have hidden fragile gifts recently given because I don’t want to risk loss of this thing I have yet to enjoy

Last night I discovered him using a knife to cut a bamboo cutting board

There was nothing on the cutting board, that I saw, but he clearly saw something to cut

I don’t keep a list of things he did….forgive and forget, move on

Just hear me when I say it’s stressful, the search for solutions are ever on…..but a solve to this distressing behavior not yet found

Finally he said he was going to bed

Then I sighed a little sigh of relief, this time of tension will come to an end today soon

He crawled in bed, I came in to tuck him in

He said to me, “thank you for loving me”

Words matter

Tears fell, they fall even now as I recall them

Words matter, words can heal, words can put gas back in the tank to be used the next day

Leave a comment