How many nerves do I have? The expression “getting on my last nerve” must mean there is some kind of limit to how many you have, right?

The last few days, week, there has been a significant increase in Matt’s level of pacing, his “utilization” behavior, his doing things that drive me bat shit crazy around the house

Most recently, he has increased his pacing in the middle of the night

No longer do I try to sleep in the same bed with him, no those days are over

He still has trouble navigating getting into his bed…..often laying at various angles that leaves no room for me….fighting for space in bed is a futile effort

Is he selfish or just completely unaware…..I can only tolerate the answer if its that he is unaware…..otherwise I’d go total cra cra

Sleeping in the sunroom, in a separate bed all to myself, has worked fabulously, I have gotten great nights of sleep

And he seemed to do well with whatever angle and position he landed in bed, often sleeping through the night even on days he napped alot

But his “night crawling” has increased substantially lately…I more often lay awake listening to night bangs and noises

Sometimes he comes into the sunroom, approaches my bed, just stands there, which wakes me up

Or he wrangles my bed covers for no good reason I can figure, which wakes me up and is highly annoying

Sometimes he, like last night, just walked around the bed, fiddling with this, that thing, making it totally impossible to ignore his presence

Other times he crawls into my bed, only to hit me with some portion of a limb, a leg, an arm, sometimes his head

By then I am not only awake, but aggitated, sometimes highly aggitated to the point of barking at him

So all this has been getting worse each night, over the last few days or so

It made me wonder if the cause of this increased aggitation is somehow related to the patch that his main meds are delivered on

We had to do a short refill via the local CVS a few weeks back because of the slow communication between his neurologist’s team and Express Scripts where we usually get his meds from

The communication took so long that we had no choice but to get a quick 30 day fill (usually we order in 90 day quantities) from CVS

CVS and ExpressScripts seem to use different manufacturers for the same patched med

CVS has a manufacturer based in France, Express Scripts in Germany

The ease of use of the patch from CVS/France is worse than what we were used to……took substantially more effort to dismount the patch from its carrying film than the one we got from Express Scripts/Germany

So we know there are definitely differences in the patches just from the experience of putting them on him daily, might those differences extend to the efficacy of the drug delivery itself?

Typically my brain works on a FIFO basis (first one in, first one out) meaning we’d use up the French made ones before moving to use German made ones

This morning I chose to abort my natural tendencies in the pure hope that this is what has been causing his increased aggitation, wandering, utilization behavior, impacting my quality of sleep, his getting on my last nerve to increase so much in the last few days

One can only hope and honestly, the hope that his aggitation might tamp down switching back to the German made patch is something, maybe the only thing, that may get me through today without padlocking his bedroom door and locking him away all day

The mix of multiple days of mixed sleep, feeling like I am on constant watch when at home, higher level of aggitation, quickly adds up

Its stressful, raising my cortizol levels at a time in my life I don’t need them elevated

Its so tricky, navigating the best path for him, dealing with what Uncle Lewy shovels out daily and trying to “take care of myself”

Often those things are at complete opposite ends of the spectrum of reality

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