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.

messy

Sometimes it’s really hard to be patient

Last night we went to the grocery store

I had to pick up a few things for the party, get something quick and easy for dinner

He was difficult, disoriented in the store

He was driving the cart (as we say), wandered off, stood in the check out line long before I was ready

I couldn’t get a clear answer from him on what he wanted for dinner

After we paid, he pushed the cart away when I was trying to load the heaviest items

It was all adding up

So we drove home, he got out to open the gate

That is his usual, opening the gate

He opened one door, then closed it

I am sitting in the car, drivers seat, in the driveway still

He locks the gate, turns, walks toward the house

I am still sitting outside the gate, motor running

So I honk

He flips me off

WTF?

I broke, I was furious

I got out, opened both gate doors

What the hell were you thinking flipping me off?

Clearly, he was frustrated too

For the first time ever, I mean ever, it looked like he was about to punch me

He didn’t, instead he tried to kiss me

Yeah right, good try Buster!

Later, as we were putting groceries away, he said: You should have more empathy for me

More empathy? I replied. I have tons of empathy for you. You should have some for me!

It can’t be all about Matt 24/7/365, I said

I retrospect, I could have handled the pressure cooker better

But this is real, real life, real emotions, real time, every day, all day

Living with Uncle Lewy is messy, it has its really messy moments

We eventually said “I love you” to each other

And called the day a wrap

One response to “messy”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    I can’t imagine the frustration you must work through to have patience with Matt when Uncle Lewy is running the show. You are in my constant prayers. May God grant you the courage to keep walking that road. May God protect you from Uncle Lewy’s violence. May He give you peace that passes understanding.

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