Matt’s been sleeping a lot

When I say a lot, it may be up to 18 hours a day now

I thought this weekend it might have been a reaction to having so much stimulus last week

There was Wednesday’s World Cup game when Corny, Jim and Terri came over

The game, conversation, energy were a lot for him to absorb

He loves those moments, but it just takes so much more for him to process and be in larger groups than before

Thursday was a outing at VJB with Eric and then to Muphy’s with Lori and Mark for dinner

And Friday was a wonderful family round up at Roche

So the last 3 days of last week there was substantial stimulus for Matt, and that’s what I thought was driving his sleeping over the weekend

Saturday he slept all day, was maybe up a couple hours here and there, mostly in one bed or the other

Sunday, we left the house for a little more than an hour, but then we aborted that plan and came home

He immediately went to bed

I wasn’t able to get out so I had to order the necessary groceries via Uber Eats (which I am grateful for, very grateful)

I thought perhaps things would change after he had weekend rest, but not so

Monday he did go out to boxing, but otherwise he was mostly in bed

Tuesday, yesterday, he spent most of the day in bed again

I am concerned about him possibly retaining urine again, I don’t know that he peed yesterday, I know he tried

His speech is more incoherent than ever right now, although his legs haven’t given out like they did before

He tried to say something this morning to me, but I have absolutely no idea what he was trying to say

The words are not fully articulated and the volume, while starting low, moved to a whisper

I think his speaking systems are impacted by Uncle Lewy but maybe it could be related to retaining urine again

We still have a few more weeks of in home support via Sutter so I plan to call the RN hotline and have an RN come out to check his bladder today

These are not days of joy with my husband, these are more like days with a toddler, its quite sad actually

My Benjamin Button you can say, he was a man, now converting to a child

I have cameras set up in strategic places in the house now so that I can take a break on days I don’t have caregivers and sit by the pool, or go upstairs to work and still keep an eye on him

He used to be highly sensitive to cameras we had mostly for when we traveled, but now, he doesn’t notice them at all, so I may have to get a couple more to monitor a couple other strategic intersections in the house

Once he gets up and starts fiddling about in the house (most often its the kitchen), I can migrate to where he is and keep a closer eye, so it does give me an inch or 2 more of freedom

I just never know what he is going to do

He picks up things and tries to do something, like yesterday, he picked up a knife I had been using to cut up salad stuff and started banging the basket of cherry tomatoes with it

He wasn’t cutting them up, he was simply banging the basket with the knife, just like a toddler might do

Of course I discontinued that activity quickly and put the knife back in the locking box I have now for all kitchen knives….

He’ll take something from the recycle bin and put it in a closet

Or take the pepper vessel and shake pepper on something, anything nearby

They say sleep, excessive sleep, is characteristic of this disease

That’s certainly helpful to know this is not unusual, is expected

The environmental dependence, doing weird things, rearranging furniture, all that, is normal result of the disease

Seeing Matt in his physical body, doing these things, making verbal noises which I can’t understand……………

Seeing Matt in his physical body, knowing he isn’t able to do the things he loves to do, like hike, be outside (because its too hot)

Seeing Matt in his physical body acting like a toddler most of the time he is awake

These things are hard, really hard, to process on the daily

Its soul crushing, on the daily….sometimes I think I have become somewhat numb, maybe that’s a blessing, a coping mechanism

I vassilate between thinking this is one of the most important things that I will do in my life, taking care of Matt during this time

And the other side, watching my life slip away from me, knowing I too only have so much time left, wondering am I loosing my life to Uncle Lewy too?

Does he notice that I sleep in a different bed? Does he care? The hard part is I can’t ask him that question because he likely won’t understand the essence of the question and he won’t be able to articulate a coherent response that I can understand, comprehend

So I find myself guessing a lot…..guessing all the time actually

Having to make trade offs with little affirming knowledge

Do I sleep in the bed he is not in (he’s now adopted my bed in the sunroom as one of his beds he rotates through anytime of the day) so I can get some sleep or do I snuggle up to him to send him some love signals, signals he is not alone, and risk not get sleep myself?

If I sacrifice my sleep, does it even register with him?

I have to believe it does but I doubt I’ll ever get any sort of affirmation

Sigh……

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