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.

VR helmet

I so wish I could put on a virtual reality helmet to experience what Matt feels, sees, thinks, but mostly feels

If I understood his reality, it might help me manage my emotions better

This is very much a soft tissue injury, no X-ray can see it

Nothing yet really explains it, fully

There is no VR helmet, so maybe the only thing I can do is play a what if game with myself to simulate the helmet……

What if I:

  • saw people invading my space all the time
  • thought my spouse was cheating on me and conspiring to take my assets

Knowing I had a disease, but these things were reality to me, how would I feel?

  • told I was standing crooked when I felt I was standing straight
  • lost control of my feet on a trail, got scared but didn’t want to admit it, didn’t want support because I could do it, but couldn’t

What if I was:

  • afraid my dog was missing
  • anxious in the late afternoon alot
  • not wanting to take drugs but now having to several times a day
  • confused by what people were saying to me
  • not able to follow along group conversations because they happen so fast
  • struggling to get the words in my brain out of my mouth
  • unable to write very well anymore, even my name
  • unable to figure out the TV remote, my cell phone

What if my abilities changed, morphed on me constantly, my reality changing

wouldn’t that be exhausting?

What if my independence was taken away

  • I couldn’t drive
  • I couldn’t take hikes on my own
  • I couldn’t go to the store to buy beer

As I write this, I can’t seem to immerse myself in imagining what he must feel…..

It’s just too unimaginable,,,,,

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