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.

in the morning

I was so angry last night

Palpably angry

I couldn’t figure out why

I journaled and journaled

Specifying exactly what odd things Matt was doing didn’t seem to scratch the itch

In the stillness of morning, maybe I have come to an understanding

I may be mad for more than one reason

My mad may have a layer I haven’t yet identified still

Yes, I have a right to be upset seeing Matt putting trash in the refrigerator, saying to him “Hunny, the garbage can is under the sink” and him responding “why are you being so mean?”

This is not my reality, is it? Seriously, I was being mean?

At first, the accumulation of these and so many more things he did yesterday was what I thought stoked my anger yesterday

But here is maybe a bigger piece of it, the underlying core source of my anger

I used to talk things through with Matt

Anything, everything

He as able to give me a fresh perspective, often right on the money

I so want to talk through the changes I see in him, with him

But he, yesterday and many other times now, can’t hold a thought

He isn’t able to be that to me

I have lost that piece of him that meant so much to me

It makes this relationship lonelier

He was able to comfort me when I got upset

How can he comfort me now when its the partial loss of him that I am upset about how

I want to yell “just snap out of it please!”

I know that would do no good…..but I still want to scream it!

My heart is breaking watching him wander, do things, I guess, to exert control over his environment

I want to ask “why are you doing this” or that. But he doesn’t know, he can’t answer

He is, also, clueless, like me

Maybe he feels my anxiety, my negative emotions

But he doesn’t know what to do either

So last night he just went to bed

Another symbol he was abandoning me

Maybe I am mad because Uncle Lewy is causing Matt to emotionally abandon me when I need him the most.

Putting my finger on the cause, does it make me feel better? No, only maybe partially.

But hopefully I can redirect my anger away from Matt onto something else today. One can only hope.

One response to “in the morning”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    I’m so glad you are pouring your feelings and experiences out on this forum so those of us who love you dearly can pray for you and give you support. We love you and are so sorry for what you are both going through.

    Liked by 1 person

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