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.

Sully walks

Its 6:11 am, my quiet time

I’m with my thoughts, my journal, my first cup of coffee, my herbal tea

I am just getting snuggled into my corner, blanket in my lap, reading glasses on

Deciding which insence I want for my morning

Sully walks out, sees me from the kitchen

Yesterday’s mock turtle neck on, one sock

He walks out of my view, so I listen

It sounds like he is at the coffee pot

Should I get up, should I let him be?

I hear a noise, cup rattling, I get up

“Do you want a cup of coffee?”

“Yes, in this cup.” He has chosen a black dungeons and dragon cup

I put 3 sugars in the cup, I hear a noise

He is lifting the anchor hocking glass container and starting to bring it over

“What are you doing?” “Bringing sugar over”

“That isn’t sugar, I have sugar over here”

He puts it back, disaster averted

I pour coffee in his mug, hand it to him

“Here is your coffee, it has 3 sugars, just how you like it”

He takes a sip, ummmm good he says

I get closer to him, say softly “I know what you like” kiss him

He softly says “I know what you like”

“Yes you do” we kiss again

He pads back towards the bed, I am assuming to crawl back in

I return to my nest

A few minutes later he shows back into the kitchen

“I lost my coffee cup”

“Oh, let me see if I can find it”

I look across the kitchen countertop, look in the bathroom, a quick glance in the closet, then there it is, on his bedside table

“Here it is hun, on your side table”

“Oh good”

He retreats to the bedroom

I retreat to my nest

I resume the position, blanket on my lap

Now where was I?

My Sully monster, with his one sock, his bad breath, my Sully monster

I am relearning how to love him again

How to see these moments differently

I had a good amount of yesterday to myself

Susan, a friend in Virginia called, I can’t tell you how much that lifted my spirits

Lori and I had lunch, my Princess Warrior who knows first hand how difficult this journey is

Her entire 2025 was focused on her dad, who was slipping cognitively, getting him out of his home in Portland and to a better place

Elliott graciously offered a venue for Matt’s upcoming birthday party in his seasonally closed yogurt shop

OMG, the idea of this is so very epic, so very Matt, so very Bristow

I toured and found out we are well positioned in the Redwoods wait list for their Memory Care, should we need it

Wow, what a huge relief to know we have that optionality, well in advance

It was a great day yesterday, our second day with Lo, our caregiver through Hired Hands

I can leave Matt in her competent hands while I go do….whatever

I came back refreshed, curious how Matt was

Able to respond with love, patience, new eyes, new heart

The issues, challenges he presents are the same

But I have changed because I got a break

That’s good for both of us in so many ways

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