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.

new cell

Yesterday was a bit sobering

Typically I am with Matt or Matt is with a sister or cousin

All communication is either in person or thru those with him

I went swimming with Lori Friday afternoon

Wasn’t planning on being gone too long, turned on Star Trek to keep him company (thanks Brad!)

We had a bright idea to enjoy a quick happy hour, more girl time

I tried to call Matt….but even though I know is phone bill is paid automatically, phone is charged and ringer is on, he didn’t pick up

I am with him so much my concern about his phone skills wasn’t top of the list, but it’s certainly been a challenge for his sisters and others

Now, with more available bandwidth, I realized, in that moment, and my quiet moment this morning, it’s a problem that is over due for some CJ GSD energy (GSD = get shit done)

All the reasons why became clear:

  • his current phone is isolating him, creating an insurmountable roadblock to remote family and friend interaction
  • what if he needed emergency help in a moment I wasn’t around, could he call for help?
  • what if something, God forbid, happened to me? Could he call for help? What if I am truly not immortal? (Laugh track inserted)

I could probably expand this list, but those 3 are reason enough to activate some GSD on this

AI is becoming a BFF over here

I tell AI my problem, she comes back with some good suggestions, places to start my solution hunt

There is a phone solution, integrates with his current carrier, where the smart phone is, shall we say, selectively smart, smart in different ways

I don’t want to say “dumbed down” because it really isn’t

it’s more “fine tuned” to folks who have similar challenges

We could all use some cell phone declutterring…. I have contacts that date back to the 90’s when I had a Palm Pilot (which was crazy new at the time)

It’s on order….so we still have to go thru the set up and use experimentation

But there is hope

He should, if this all works out, have a picture of family and friends he can push to call

I will have the ability to update things for him from my phone so his world can be easier to navigate

Rome wasn’t built in a day, everything takes time, takes thought, understanding the need, patience

And so I tell myself when the voices start up in my head bashing me for not doing something about this sooner

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