Let me first begin by saying that when I write here, I do not intend for people to feel sorry for me. I blog our life and my feelings and emotions regarding our struggle with Early Onset Alzheimer's Disease to bring the reality of this disease home. So many people know so little about this disease and I wanted to change that. Believe it or not, there are STILL people out there that view Alzheimer's as a loss of memory, confusion and agitation. While those are all components, they are not the sole symptoms. When I began this blog, I also hoped that it would be read by many, in order to raise awareness so that one day we may find a cure.
I have been having a big problem with my nervousness regarding Mike's jerks, ticks, shakes...whatever you may want to call them. For some reason, I cannot shake the fear inside that these may once again lead to a seizure. I have never felt like this before. I haven't slept well in weeks. When Mike sleeps very soundly, I know his morning will be filled with sometimes violent body thrusts. My heart races and my stomach drops, for fear of what's to come next. On the occassion when he doesn't sleep well, that means he's having these movements most of the night - in which case I am still on edge waiting.
What I began to do is step away. Since I know Mike will be OK, when he starts to have these tremors, I leave the room. This morning I got up at 5:30 a.m. and went to sleep on the couch. This way, I do not have to be right there, feeling his tremors, waiting in fear. At night, there are times when I will not go to bed until I see that he's calm. Is this bad? I don't know, but I do know that it's what I need to do to keep my sanity. All common sense tells me he will be OK, even if he does have another "S". Why can't my mind accept that?
In stepping away from Mike, it also leaves me feeling guilty. I have been there with him through EVERYTHING, often times with no sleep and quite frightened. I always tell him that I will never leave him and that I will ALWAYS be there for him. I feel like I'm letting him down because I cannot get my mind to let go of this fear. I am with Mike whenever I can be, but until this fear subsides, I will need to step away until his tremors stop.