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.

Adventures

Matt has been going on adventures

Pt Reyes, Stinson, museum in Santa Rosa

It’s cool, he and Courtney sometimes decide on the spur of the moment

Sheba likes it too

I am off doing whatever, or at home working

These two are exploring

Love it!

She is new to the area, full of energy and curiosity

Matt gets to be a bit of tour guide, explorer

This is one of those moments that I probably could self guess, chastise myself for not doing this with him myself more

But no, I am grateful for the help, beyond grateful

He needs a break from me as much as I need a break from him

I could lament it’s not fair that my time with him today is taking him to doctors, while her time yesterday was at Limintor Beach

I am not going there

It takes a village, while some do try to do everything, be everything for their loved one going through this, I have seen what that does to the care giver

So I have watched and learned, heard and learned

Their beach excursion let me be on King Mountain with Beth to not only get a great hike in, we discussed the current state of politics, shared thoughts on books read, had great conversation

Conversation is something Matt and I really don’t have much of, not like we used to

Functional conversation, yes

But vigorous, detailed, flowing, information sharing conversations….. those are long gone now

I am very grateful, no where near jealous or resentful

Today we see his neurologist, then he gets an EKG

The EKG is one step in trying to get insight into the issues we faced at Angel Island and Bartholomew where he lost some leg control during hiking

One step, one day at a time, one adventure at a time

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