I’ll call it

The fluctuations seem to happen more regularly now. If anything is certain with Lewy Body it is the total uncertainty of the thing. I have quit trying to figure things out. Trying to chart patterns. Trying to find a cause and effect in the madness. This is a good thing for those of us caring for loved ones in the midst of this horrible disease. The decision to quit trying to understand and make sense and to just concentrate on caring for our loved ones the best we can may just save our sanity. For the “outsiders” who still don’t get exactly what is wrong with Momma, they are not happy with my answers sometimes.

“It is what it is.” My new favorite!!

Momma sometimes explains things quite well. “This thing I have causes these dreams, doesn’t it?”

“Yes, Lewy Body gives you bad dreams sometimes and I know they aren’t pleasant for you. I’m so sorry.”

“I think I’ll call it “little” body. It sounds so much better. “Little” body.”

I think it sounds better, too.

I need to be more understanding of those who do not understand Momma’s limited ability to make a decision. I need to extend grace and mercy to them when they ask Momma what she wants to do and actually expect an answer. Really? They don’t know that she will never want to get up out of her chair and go to the bathroom. EVER. But they still ask and I still get irritated. I’m working on it!

I need to be more understanding when people expect me to be able to go and do things that most people consider easy. Like an impromptu dinner, ball games, family get togethers or going out of town. They don’t know that it takes weeks of preparation and planning and scheduling and money we do not have to pay for extra care. Lewy is 24/7. It is what it is and I am doing the best I can.

S Beisler

Feb 19, 2015