Uncle Lewy

Living out loud with Lewy Body Dementia

Juno Has A Job Today

Juno is Barbara’s pup, she is almost the exact same age as Sheba and she is a black lab just like our Sheba

Barb, Terri and I are going to tour 2 memory care communities today

Juno is coming too, cousin duty

If a community doesn’t accommodate Sheba, it’s not going to work for Matt and I

So Juno has a very important role today as she tours with us

She is standing in for Sheba, testing the communities’ dog friendliness, a very important role

I do believe Matt got dehydrated over the weekend

I also do believe he was dealing with a level of overwhelm too, from schedule changes, me not being his constant, large gatherings

All this, I believe, contributed to him being difficult to manage, live alongside Sunday

Over the course of Monday, Nora worked to get electrolytes in him, hydrate him….after which he seemed to begin to rebound

We had a quiet day Tuesday, stayed out of the rising heat

Tuesday evening he asked me if I would marry him again, it was articulated as clear as a bell!

I said “yes, of course” and gave him a big smooch on the cheek

I asked him if he would marry me again, he said “yes” in the most enthusiastic expression of anything he has said in weeks

That was a very nice affirmation, a great respite from Lewy

It was like Uncle Lewy took a walk around the block in that moment, left us alone

On Sunday I was feeling drawn towards making the move to memory care, wondering if I had waited too late because he was fairly difficult to deal with

Not in a fighting way, just unable to settle down, getting into things he shouldn’t, making messes, unable to get a verbal message out that I could understand, being “a handful” as my Nana used to say about her great grand kids, and honestly, about me……at times

Now I see it’s not too late, his behavior has moderated a bit, back closer to the normal I had become used to

There are moments that this decision to move or not move him to a memory care community overwhelms me

It makes me dizzy knowing I am making a decision for him, one that he is likely not capable of making on his own, a serious life altering decision for him

Never in my life have I had someone else’s life so squarely in my hands, so clearly my responsibility

He can be lead…..made part of the process….but that doesn’t change what I feel is the severity of the decision on the table

Today I bring my village into the game…touring 2 local places that have risen to the top of my list

No place is perfect, no place will be perfect

Typically,I guess, someone in my shoes would have a home they would be stable in, a sanctuary, an anchor

It’s either a harder or easier part of our situation for sure

We likely have till March here in the farmhouse, then Sheba and I have a big move ahead of us in the spring

So making one decision is the first of several dominos that will fall

Now, in this moment, the weight of this particular decision for Matt weighs heavily on me

I have had it hit me viserally in the middle of a paddle practice, suck the air out of my lungs as I walked from one end of the parking lot to the other…..a private moment in the midst of my Ohana family……and at the turning basin, when we take a quick break from paddling…..the dark cloud pushes on my shoulders, causes me to hang my head…..a sense of overwhelm, a sense of intensity that is hard to explain

I want the clouds to part, a voice from above to say “this is the place, this is the right time, everything will be perfect”

That’s what I want…….pretty sure it ain’t gonna happen!


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One response to “Juno Has A Job Today”

  1. Just want to send you a big ole hug right now. You’re doing great. Trust your instincts. Love love love you!

    Liked by 1 person

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