Throughout all the years of Mike's illness, I realize that it's been all about giving up one thing in order to get another.
Yesterday, Mike was moved to a different room. He's in a room by himself and there's plenty of room for all of us to visit. When he got into the room though, it took AN HOUR to get the nurse to come in - and that was after 3 requests. His room downstairs was near the nurses station and it very very noisy and busy. Alot of people were always around and we could always get someone to help us. In his new room, there's NO ONE around. It's almost like he's in a desserted part of the hospital. I had asked for the PCA's to get Mike out of his chair into the bed BEFORE they got busy with the food trays. After 1/2 hour and no one showing up, I decided to do it myself. I was just about to lift Mike in the hoyer when they came in. When they did come in, it was pathetic. They had NO IDEA how to use the hoyer. I had to show THEM. Mike's food try was delivered at 5:45 and when we left a little after 8pm, it was still in his room. No one had come back to take it away...In order to get a nicer room, we had to give up better care and more attentive aids/nurses. That wasn't a good trade off, but who knew. Hindsight is 20/20.
The last few days, I was upset/concerned about Mike's tremors/shakes. Three days later his neurologist called back and I had asked if they could give Mike something to "supplement" his other medication. When I got there yesterday, it was apparent that they had given him something. He was totally out of it. Instead of the 1/4 miligram the doctor said he would give, he gave 1/2. I wonder why and who knows if I will be able to reach him today to ask. Will that be a compromise we will have to make??? Will we have to deal with Mike shaking - OR - Mike being totally out of it? When he's out of it, he doesn't eat. Even though he was shaking those few days, at least he was eating. But then we take the chance of him choking if he has something in his mouth and he starts shaking....So the trade off was constant shaking with fear of him choking to heavily medicated with no chance of him eating.
This whole process has been giving up one thing for another. What makes it so hard, is that each thing to be considered is SO important. I am working with his neurologist on a combination of medicine that will let him be more awake, yet not shake so much.