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.

breakfast

Breakfast is our time to talk

Family business

Decisions that need making

Schedule for the day, week

Anything of importance we talk about over breakfast

This seems to be his clearest time

The morning after, I apologized to Matt for getting mad at him

Hope had risen in my heart we could go back to some of what we had

Hope that seemed dependent on him taking his meds in this new way

When he refused to take the meds, that hope was smashed to smitherines

My heart was broken

I apologized for taking it out on him

This is such a rock and hard place thing

He has a terminal diagnosis, there is no cure

Being gentle with him, wearing velvet gloves seems right

We are one

So half of me is dieing

All of me wants to live and thrive

But half of me is dieing

Slowly

We move down a fog filled path

We can’t see the length of the road

Only that it keeps moving forward

We face it together, holding hands

Three quarters of us is dieing a little in each step

That makes this mornings apology so necessary

My anger put distance between us

The apology brings us closer

We have to stay close

I couldn’t bear him being alone in this

So I guess I need to allow my anger when it comes

Allow my imperfections room

Allow healing

Hold his hand, sigh, and move along…..

One response to “breakfast”

  1. really beautiful CJ ❤️

    Liked by 1 person

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