This disease is so horrible in so many ways, but one of the most difficult to overcome is the fact that Mike cannot communicate his needs to us.
I have come to "read" Mike quite well over the years. Where he cannot communicate verbally, he often tells us things by facial expressions. The problem is, in the past, when those "normal" expressions change, there was always a problem. Therefore, whenever he may make a different sound, or sneeze one more time than usual, cough, etc., my mind goes in panic mode and I think something is wrong. It's a horrible way to live, but it has been our way of life.
For example, on Christmas morning Mike woke up and appeared fine. After he was dressed, he starting making a noise (moaning). We rushed him to the hospital and it turns out he had a collapsed lung. Now everythime I hear him make a different noise, I think "could it be his lung again". When he coughs, I think, "oh my God, could he have pneumonia?" His aides as well as the kids are constantly telling me I should relax. How does one do that? It's like I am always waiting for the rug to be pulled out from under me.
Our mantra for Mike has always been, HAPPY, HEALTHY and AT HOME. If he can stay this way, we will be satisfied.