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.

Gifts

Yesterday we met up with friends to paddle board and kayak on the Russian River

I have driven by the Russian River so often on the way to Sea Ranch, but never have put in

Lois and Mark suggested joining them at a particular beach, that was a gift they gave to us

EB was with us, we had done some event related recon yesterday for her mom’s big party that is coming up

I put it to her: hiking on Mt Tam or paddle boarding?

Paddle boarding it was

So we got up, ate breakfast, packed the car

Sounds efficient using those words

Trust me, it was closer to herding cats

But we set out and made it, all equipment in tact and nothing left broken on the side of the road

Matt kayaked while EB and I paddle boarded

The current was fairly soft, the wind pushing us up stream

I have a separate full blown curiosity about tidal influences on this river, save that for later

We paddled with the wind

It was beautiful, easy

My temptation was to “busta-move”, dig deep, push, go fast

However, I couldn’t let Matt out of my site

Thoughts whirled thru my head: what if he flipped? Could he figure out how to get out of the kayak from upside down?

It can be hard sometimes for the fully able

Our friends graciously had waited for us

Like I said, herding cats, so we were late arriving, I felt terrible about that

Now we were caboosing, holding a slow end, not catching up to them, holding them back

Matt was paddling more like Sylvia, my mom, less like Matt

Form was pretty good, but paddle traction not so great

Knowing we’d be paddling into the wind on the return, we headed back

We knew it was going to take longer

I stayed close to Matt

I noticed he was having trouble keeping a good consistent paddle hold

My spidey senses were that he’d probably exceeded his limit

He was such a great sport, not one complaint

At one point, having turned around to check on him, I lost my balance and my board shot out from under me

You know one of those catastrophies you know is happening but there’s not a thing you can do about it

EB comes up “you do that on purpose?” No!

EB then says “Matt, can I tow you?”

I asked Matt that a bit earlier, he said no

He said No to EB too, but she said “But I want to tow you because I want a harder work out”

Matt relented, EB towed him the rest of the way

EB taught me something in that moment

Matt wasn’t inclined to accept help because he couldn’t

But he’d gladly agree to help EB get a better workout

Smart, intuitive

A gift shared with him, shared with me too

With EB towing Matt, I broke out into my “busta-move”

Win win for us all!

We can not live a full life without the help, the gifts, friends and family bring

Thank you from both of us!

One response to “Gifts”

  1. Very intuitive of EB. You definitely have to play some mind games and think out of the box. It is hard changing worlds and putting all the anger, hurt and sadness (your feelings) and try to picture yourself as him and how you can twist the words/situation to something he can accept!

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