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.

Shorter Days

With the shortening of days, the coolness setting in

The loss seems more poignant, more profound

I have gone days on days not leaving the house

When Matt is off with Courtney or family, I am heads down with work or some clean up project

At night, when I am with him, his words are garbled

His expression of thought incoherent

I watch him fall asleep on the couch, face contorted, hand involuntarily moving

I feel alone, not seen

He is the man I married, yet he has changed so dramatically, that damn Uncle Lewy

During a waking period, I slide by him on the couch

He does say something I can hear clearly “ I love you”

He has refueled me, recharged my canisters

Why did you choose us Uncle Lewy?

You really are an asshole

I hate you for taking him small piece by small piece away from me

You do this as I watch

There is nothing I can do to stop you

It makes me so so so mad, you make me feel powerless some times

I am a solver, yet you gave me a rubric cube I can’t solve, a puzzle that doesn’t have all the pieces

Yelling at you, Uncle Lewy, doesn’t solve anything, I know, but you are to blame

4 responses to “Shorter Days”

  1. Michele McAteer Avatar
    Michele McAteer

    Hugs Cj! ❤ And yes, Fxxk you Uncle Lewey. 😡

    Liked by 1 person

  2. wondrous268336d70c Avatar
    wondrous268336d70c

    As I read this, in my mind, my hand reaches out to hold yours. Both of them cover yours with gentle care and genuine love. I wish there was more we could do to be there for you. I agree with you that Uncle Lewy sucks.

    Liked by 1 person

  3. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    CJ: this is such a raw post. I feel your pain. Thank you for trusting me with your truth. xo Cathy

    Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

    Liked by 1 person

  4. I see you sweetie. I see you clearly and hear all of it here.

    Liked by 1 person

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