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.

Saying goodbye

Mr. & Mrs. Skinner,

If you are opening this card that means the keys to 114 are in your hands. We seriously hope and pray this will be an amazing home for you as it was for us. The long room in the heart of the house often hosted a table of 40+ family and friends. We share a picture of our family Thanksgiving which brought so much joy to many.

May this house embrace you sweetly through the cycle of life for you and yours in the years ahead. Most importantly, may this house be home for you, providing peace, tranquility and safety for a long, long time.

Very truly yours,

CJ Spady and Matt Busse

My last act before locking up the house and driving away one final time was to pen this note.

We still have a couple weeks till close, so I expect it will sit there unopened till then, on the newly renovated counter

The picture I shared with them was a Thanksgiving card we sent out in 2020, a year we couldn’t have a large gathering because of Covid

I am pretty sure we had a small Thanksgiving that year, probably Granny, Mom, Matt, Sheba, me….the details fade as time goes on

What I do remember is how we were able to come together as a large, extended family for almost all the years we lived in the house

Growth in our numbers caused us to separate into smaller gatherings, picking up new traditions, habits, all that

That first Thanksgiving we hosted, reuniting, was so very special

There are several pictures of Jerry’s family, all together for the first time in a long time too

Bill and Jerry’s families hadn’t seen each other in quiet some time, I hadn’t seen many for a long time either

Granny could see everyone all in one place, it meant the world to her

Over the short 7 years, we had 6 large Thanksgivings…..all the way up to right before we moved

Each special, each different

In between, we lost some of our family along the way

Very unexpectedly, we lost Kathy. One of the sweetest people who ever walked this planet.

We lost Granny, technically my Aunt Dolly, but she has so many grands and greats, I long ago gave in and started calling her Granny because I was so out numbered

I had hoped, prayed we could engage with my side in a meaningful way once we moved there

This house enabled that, we did

This house cradled Granny through the pandemic, though us watching the 2020 election together, the events of January 6th, the dialog of opposing political views, very much east vs west…..

This house helped us say goodbye and thank you to Granny last year

The dock witnessed the ceremonial tossing of 7 bean salad, Will anyone ever dare serve it again?

The house was where we met Uncle Lewy…..

And where we began this next phase of our lives

Am I sad? I honestly don’t know. What I do know is we lived our lives in that house, fully.

We made many memories in that house, we loved in that house

That house is no longer our home, our home is where we are, be it a car or another building

I do thank that house for being a home to us, for being a platform for much love

I do.

And soon it will be the Skinners (keep all those toes and fingers crossed people!)

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