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.

limits

We are learning new limits

This afternoon we hiked a well worn trail that we have hiked a dozen times before

Matt’s boxing class was at 12:30, I swam a mile in a nearby pool

That is a new usual for us, finally hitting on something that is good for him, good for me, but doing it separately, safely

You see, this town we call home now is what they call “Dementia friendly”

There are communities here of people like us.

Boxing is with Rock Steady, focuses on Parkinson’s, so close to LBD

He is safe there, they know him, the instructors, the spouses of the other boxers

I swim. I get stronger each time.

Its just enough time between drop off and pick up to swim that mile, it’s still a challenge, a good goal

We hiked after boxing and swimming

We usually go hike around 10:30 am, it’s 3 pm now, hotter

At first all was fine

Towards the end of this beautiful familiar hike he turns to me

He asks “Where is Sheba?”

He had Sheba’s leash in his hand, she was right in front of him

She had been with him the entire hike

He wasn’t leaning, but I did notice his back was hunched a bit more

Disoriented, not aware in this moment Sheba was just there, ahead

I assured him she was fine, just ahead

We complete the hike, made it back to the car

He sits in the back seat, that’s odd, he usually is my co-pilot

”Is your friend coming?”

No, it’s just you, Sheba and me. You can sit in the back if you want.

So he did

We are home, he wanders

He struggles to open a can of beer

I have my ears open to him, can sort of see him from where I am

Listening to sounds….

Thinking, if he starts to use a knife to puncture the can open…..he does….WAIT WAIT…I will help you…I will help you…..I get there in time, open his beer……whew…

All good now

He still wanders

I wonder what he sees, what he is looking for

I don’t want to hover….but I need to pay attention

It’s that time of day

Sundowners? Or did we just do too much today?

It’s so hard to really know….but I think we learned a new limit….

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