Uncle Lewy

Living out loud with Lewy Body Dementia

Roller Coaster

Just when I think I have come to a place of comfort to accept that it is time to move Matt into a community that can take care of him, inevitably, we have some nice moments and I think, you know, this isn’t hard afterall

Moments when I enjoy being with him, when being in the house seems to have a rhythm

And then, just as quckly, he does something that totally changes my mind back

I’ve decided today I want to talk to Nora about her thoughts, does she think its time to move him into a specialized place?

This morning he’s playing with the larger walker that Kristen brought over several weeks ago

He brought it into the house and is moving it here, there

I’m ok with that, he’s getting used to it in his own way before he really has a need to use it for its true purpose

He realized that there is a compartment under the seat to store things

The things in the compartment were Kate’s, his cousin, when she was using it at her home

He took those items and tried to put them in where the pots and pans are

What were they? Couple of used plastic cups and a head band with pearls on it

I said to him as I saw him attempt to put the items in the cabinent “Matt, the trash can is under the sink”….”don’t put that in that cabinent”

I don’t know where he ultimately put them….I need to get the headband for sure…..he probably put them in the cabinent I told him not to

Then he filled the dog bowl up way full with water and proceeded to walk across the way spilling water everywhere

“Matt, its too full, you are spilling water all over the place”

He replies: “People have different preferences”

“No, its a fact, you are spilling water all over the place”

But he continued on doing it the way he wanted

Oh……those are the moments the roller coaster is moving into the direction of him moving to a community

I think about the lonliness I will have to deal with if he were to move out

Right now he can annoy the heck out of me……but when he is no longer here, I’ll miss that I know

I suppose it would be easier to let someone else, something else, some other event, make this decision for me, but is that the right thing to do?

For now, I’m still investigating, but the time is coming very soon for the spreadsheet to come out, pros/cons

There are 2 more places I want to see, a call I want to make to the Redwoods, a final call, then it might be closer to decision time

Before then thought, we do have, finally, the Hummingbird Project coming over next Monday to see what they can do to help engage him more in activities, to even further adjust our home to accomodate his tendencies

It feels like their visit may be too late, but I am open minded, its worth atleast a try

Today, being Monday, I get a break, Nora is here and then Michelle is here covering an evening shift

My hope is I can get back into a nice routine this week, getting my exercise back in

I had to cool it last week because I over did my upper body exercises in Montana with my brother

My left shoulder was quite tender, so I had to rest it, hoping it is just a strain not something more serious

I read a post on facebook written by a man who was an endurance athelete, diagnosed recently with Parkinsons

He said that exercise is his zen, his way to escape

I think that is where I am with exercise, it is my way to escape

I can focus solely on what I am doing, even if its just for 30 minutes, or a couple of hours

It helps me leave, vacate, and come back to what ever problem I’m wrestling with

So today, with nothing truly on my schedule, I have as much time as I want to vacate into my exercise

Maybe I will come out with a new perspective, a new refreshed view point

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