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 beginning

Today will be a new beginning

Courtney will be arriving mid morning

It’s been several years now of handling Uncle Lewy mostly single handedly

I have had the blessing of some respite along the way to be sure, for which I am extremely grateful

Respite, till now, this new beginning, came once in a while, every other week or every third week

With her on the Uncle Lewy management team, respite will be available daily

Pause for a moment….daily….I am letting that sink in

We have work to do to sort out our routines, hers and ours

Sort out when respite, this new volume of respite, will come

Knowing it will come more frequently is the stage I am in now, anticipating it

What will I do with my time?

I am committed not to just fill it with errands, that would be too easy and not adequately satisfying

I am partially retired too, I have retirement dreams to pursue myself!

Opening my mind this morning to the ways I can spend my time, its not a tease, it has the chance of having real legs, really able to carry me somewhere

Taking a cooking class near by at the original Williams Sonoma location

Grabbing my paddle board and going on a local SUP adventure

Meeting a friend for coffee or a happy hour

Going into the city to see the art exhibit at the DeYoung or SF MOMA

Wandering around boutiques with no need to buy a thing, just looking at pretty things, things that are pleasures to my eye

Checking out a new exercise class, one that has other people live in the same room and not just on a ipad screen

Volunteering, meeting other people, engaging with this amazing and beautiful community we live in

This all seems so normal

These are some of the things that were complex, if not impossible, to do because I couldn’t leave Matt alone for long

Now, once Courtney is settled in, these are real possibilities for me

All my options for respite before seemed to be more focused on “have to do’s” not as much “want to do’s”

Certainly, nothing with much regularity could be committed do

It wasn’t all work, I did get the chance to get a spa day in with a friend, play with my cousins, put on a retirement bash for my dear friend

Its the quantity of respite time that is going up, the opportunity for more and more consistency

I am grateful, frankly excited

I have another live in buddy in this battle with Uncle Lewy

Let the games begin!

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