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.

Yesterday

Yesterday was a day I wanted to end as quickly as possible

It started with the holdover of some interpersonal dynamics for the day before

A realization that the PTSD formed in my childhood was still there, lurking dormently in the dark recesses of my brain

I faced this head on early in our marriage

PTSD isn’t just something a war vet may develop, it can be something anyone can

Mine evolved from certain behaviors that my dad exhibited during the later years of his career at NASA when he was profoundly unhappy there

As a child, pre teen, early teenager, I had to walk on edge shells at home because I never knew what might trigger him

Of course, with no help available to help me through this, I thought it was my fault

So this repetitive situation grew into a brain program, I developed my own methods of compensating

When Matt and I got married, he sometimes would come home frustrated from work

I would try to cheer him up, find the Matt I enjoyed, but he would have none of that

I felt like a deer in headlights, I knew I had smarts, but I felt like the dumbest person alive in those moments

My PTSD from childhood, that program that said it was ALL my fault, there is nothing I can do, I am in trouble for making dad mad, I am not loved, I will be discarded because I am bad, showed back up

It was only because of Marsha, a therapist the Busse family had grown fond of, that I came into this awareness, put a name on it, could start to understand it

When the interpersonal dynamics at the house occurred the night before, I experienced that again

That unsettling internal sense of complete uneasiness, being completely unsettled, of being solely responsible for the problem, the resolution would only mean some sort of a loss for me, some kind of punishment

I had not felt that in years, that intensely

So my morning yesterday started on that note, the day after experiencing my PTSD again

The issue giving rise to it wasn’t yet resolved, so the feeling lingered with in me

But I had to get on with my day, some how

I had an intense client meeting early which I was on point for

They don’t pay me to handle the easy stuff, so I have to show up

After that, the conversation that needed to happen occurred, more facts were laid out

I am being vague in respect to those involved

Things were discussed, suggestions made, everyone was able to walk away in a better place

Matt was kinda up, not really, hadn’t eaten much of his breakfast, so I had to get on to that

I did a bit more work, Matt took a shower

I was done with my day, mentally, it had been hard, so I suggested to Matt we treat ourselves to lunch at VJB

He was up for it, so I started getting ready to head out

When I walked in the bathroom, OMG! I will spare you a graphic visual but there was water standing deep in the tub, it was not the color it should have been and there were things in the tub that belonged in the toilet….flushed

What a f**king mess!

What happened? I asked

It kinda just happened, he said, I couldn’t help it

Oh boy…..as absolutely gross as it was, I knew there was no one in the house other than me who could clean it up…..so that’s what I did

By the time that was done, I was in no mood to go to VJB, and they’d likely be closing up before we got there

Matt really hadn’t had much to eat, I needed to feed him

So we compromised and went to another casual pizza joint

It was late for lunch, early for dinner, which was perfect for us since it wasn’t crowded

Pizza really isn’t what I should be eating for my physical goals…..but WTF? It’s easy, he would eat it, I didn’t have the will or energy to fight for myself at that point

So we got home early, 5ish, there is nothing much on TV on fridays at 5

Matt was talking incoherently, falling in and out of sleep on the couch

That horrible feeling of being alone in all this was palpable

I was super tired, just wanted the day to end, but it was barely 6:30!

Finally I grabbed a book and crawled into bed, ears listening for noises in case he got up

I had put a fire log on earlier, it seemed like the thing to do on a chilly December Friday, so there certainly was risk he’d wake up and fiddle with it

So every 15-20 minutes I would get up, walk to the living room to see him still asleep

Finally I thought, this is insane. I should just get him to come to bed so I don’t have to worry about him out there

It was hardly 7:30

Crazy early….. but I needed the day to end, like really badly

And it finally did

One response to “Yesterday”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    You did it. You got through a very tough day and without harming yourself or Matt. Win. I pray God continues to give you the strength you need and the love it takes. His mercies are new every morning.

    Liked by 1 person

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