Sunday, November 2, 2008

Gradually Slowing

The clocks went back last night. Yes, I thought I was going to get an extra hour's sleep, but much like when the kids were infants, the time change really doesn't make a different when I have to care for Mike. I was up early and started getting Mike up and ready about 8 a.m. (it would have been 9). If I waited until the REAL 9 a.m., then his entire day of medicine would have been "off". I have to keep him on a regular schedule, as best I can, especially regarding his anti-"S" medicine. I started giving Mike his breakfast around 8:30, and his aid didn't get here until 10:30 (she comes in late on Sunday so that she can go to mass).

Years back the kids and I would discuss about what it would be like when Mike stopped eating. We all agreed that it wouldn't happen "overnight", because when that happens, it's usually another problem or illness. We knew that it would gradually slow down over time, until he just wouldn't eat anymore. Well I have begun to see Mike starting to slow down even more with his food. He used to eat 3 three melas a day, then he went down to 2 and now he's only been eating about 1/2 of each of those meals. Yes, there are days when he does finish everything, but I think the process of his body not wanting/needing alot of food has begun. It scares me to say it, but I can't ignore the facts.

Is it "normal" for me to feel guilty when the kids and I eat? I keep reminding myself about Mike's reaction when he was diagnosed. He did NOT to be a burden to the kids and I - he dreaded how dependant he would become. I know he would want us to go about our "normal" routine, however difficult it may be when we look at him.

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