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.

Kate

We took Kate out yesterday

Kate is Matt’s first cousin, the daughter to Matt’s father Walter’s twin brother Bob

Kate lives nearby in an assisted care facility

She and Matt share history growing up, the details of which I know little about

It’s really a blessing we moved to Sonoma, I didn’t see the full extent of it when we made the decision

Matt’s language of love is helping others

The sheer cruelty of this disease is it has ripped the ability to express love to others that way from him

To be honest, in most ways, I thought it was gone from him now

Recently, I was hanging pictures, finally, in our place here

I asked him to hold a framed picture from our wedding so I could step back and see if I liked the positioning

Even that simple task had its share of challenges

Taking Kate out, though, on a local excursion, like we did yesterday, is something he can do

I fell in love over and over with him back in the days that I watched him gently take care of Walter during his dementia years

I see so much Walter in Kate’s face, in some of her ways of being now

Strangely, that along with watching Matt be with her brings me so much comfort now

I have to shamefully admit I had to face some of my own fears yesterday morning before we set out

I didn’t remember meeting her before, what would her condition be, would the place and the people she lives with bring me overwhelming sadness, could I handle both of them?

But like Kristen, like all the rest of the Busse / Bristow clan, I fell in love with her immediately

She is a blessing to us because we can visit her with purpose, with relative ease

Matt can speak his language of love by helping her, by providing comfort, companionship to her

She is so nearby, it’s so easy

Matt’s ability to visit Kate helps Kristen as well, so that is an easy sell to motivate him

Kristen is now shouldering the weight of the 3rd person in her family to be on the dementia journey

The fact we can step up now, even in our broken condition, help her by knowing other family comes by, take Kate out, I hope places a big ole warm fuzzy in her heart

It’s really good for us, it lets us pay it forward, returning into the universe the support and love we have received and continue to receive along our journey

One response to “Kate”

  1. This is really lovely CJ, both the fabric being woven here and your reflection on it. Thank you for sharing. It was so nice to meet Kristin this weekend 🙂

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