It's been a while, or it seems to me it has, since I have talked about Thomas. Part of it has been because he's been doing ok for the most part. The other part, of course, was that I was caught up in my own pain that I felt there were other things that needed to be said. But here I am now, doing better, and I think Thomas deserves the spotlight right now.
So, the last time he saw Dr. N. the two of them decided that Thomas should decrease his clozaril some more. Granted it was only 12.5mg (leaving him now at 25 mg at night) but it seems to have made a difference that isn't good. For as much as I hated the clozaril in the beginning because it didn't seem to be working, it now seems that decreasing the dose has its own sort of problems.
To begin with, it seems that little 12.5 mg decrease has completely ruined his sleep patterns. This is weird to me because when he decreased it by 12.5 the last time he did fine. But since this last decrease he has emerged from his room every morning slightly agitated, tired and distant. I had stopped checking in with him about his night for a while because it seemed like he was doing fine but then these last few days made me wonder how fine he is. His chief complaint is that he doesn't feel like he's getting any sleep. He says he sleeps but that he wakes up tired like he didn't sleep at all.
WARNING! WARNING! WARNING!
That is what I heard in that because we have been here before. The nights of tossing and turning like this were precursors to worse problems and I don't like that I am hearing this complaint again. So I asked him yesterday what he wanted to do. I gave him the option of me emailing Dr. N. and letting him know and seeing if he had any suggestions and the other choice was to ride it out for 2 weeks until we see him in person again. Thomas considered his choices for a minute and decided he wanted to ride it out. Okay, that's his choice, so now what?
Accompanying the rotten nights of sleep has been an increase in the need for hugs. We went along there for a week or so where he never asked for them and then suddenly, as part of this whole not sleeping well issue, he needs more hugs. I check in with him and ask him if he has any other symptoms going on and he denies having any. I have to take that at face value because I can't get inside of his head to find out for sure.
Except there is that "disturbance in the force" again.
Oh yes, I love that feeling.
Yeah, not really.
It casts such a heavy pall around him and in my gut because it is in these times that something is definitely wrong but neither he nor I can name it. In these times he doesn't even feel the disturbance at all leaving me with my mother's instinct to figure things out.
So, I'm left with the uneasy feeling right now that something isn't right. It is times like these that all I can do is be patient, how ever painful that is to be as his mom when he's obviously struggling. I always feel like sitting back and waiting (essentially) for things to get worse feels wrong. I have always been proactive in his care but these moments in between the good times and the bad ones, are cause for a lot of little alarm bells with zero plan of attack.
Now we just get on the slow moving train, buckle up, and wait and see where it goes. Going off of a medication that seemed to be really helping things in concert with the Latuda seems kind of reckless to me but it's not my choice, nor is it my body, so my job will be to be his mom and be at the ready, when those damn demons rear their ugly head again.