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.

Tahoe

A weekend in Tahoe, a special weekend

We are so grateful for the time spent with family. Sisters, brothers, cousins

The gift of family is intensely meaningful to both of us

It always has been, even more so now

Matt was surrounded by a dozen people who know and love him deeply, care immensely for him

For me, knowing he was in the cradle of their collective watchful eye, I could be the parts of me that get forgotten

Several times I simply dropped out of sight, taking a nap, walking ahead on a hike, taking a swim

Because I knew he was in good hands, a lot of hands

He used to be the guy to call to help fix things, little things, big things

In Tahoe, he had to be helped getting into a kayak, buttoning his pants, finding his way to the bathroom at night

Things have changed for him, and so it goes, with me

This weekend reminded me I am not lost, I am not a casualty of this horrible disease

I am impacted by it, I am busy because of it, but I am not lost by it

I got to sail on my Hobie!! I want to yell loudly and tell everyone who can hear I got to sail my Hobie!!!!

The gift of helping launch, rig, sail, was huge

What is it about that boat?

Maybe part memory of when we first met, me and the boat in Tahiti

Maybe part reconnection to my youth when so much freedom was present in my world

Maybe a lot part hope that there is a lot of life still to live now

There are no ways to express how profoundly meaningful being in Tahoe was for me, for us, with all

I wish Matt could verbally express the meaningfulness

He’s always been a man of fewer words, now, they come out after much more of a struggle

But I know, we know, it meant a lot to him

He were cradled by not only those family that were with us there, then, but also cradled by Herb and Marsha who had the vision of the Tahoe cabin

Cradled by the rest of the Bristow sisters and their husbands who raised these amazing people who were in our lives today

I believe, in my true heart of hearts, they were all up there in heaven, looking down, sharing a cocktail, smiling, enjoying watching the dance party and all that we did together

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