I don't know how to explain it - but Michael always had the most beautiful set of blue eyes.
Something has happened in the last month to turn them from beautiful to strange looking. Like a glassy eyed blank stare. Don't know if its the meds - or the fact the disease is affecting his brain so horribly. We went to the bank and he got confused - tried to put the number off of his bank card into a blank deposit ticket. Then he panicked because there were more numbers on the card than the routing and transit number. From there it went from panic to full blown OCD behavior. Maybe his attempt to control a situation that is clearly out of control.
I hurt for him. Its hard to watch. I listen to the subtleties in his voice and watch how his face is changing...Nothing drastic....just nuances that are different...warning of the things to come.
He is not the person I knew two months ago.
The disease has affected his breathing. Last month it was only the left side that was diminished - now its both. I know we are on the fast track - but its hard to be a part of this all...Some times I just want to run away and leave it all behind. I cannot talk to him about it - because he has become child-like in some ways. Incapable of understanding things when I say them to him. Then it is repeat it - and explain it - repeat - explain...until I am just exhausted - and wishing I hadn't said anything in the first place. So I keep it to myself and press on...Chin up - trying to fix the broken pieces left over from the disease with my kids and my life.
I hate this disease with all my heart. I have a gentle spirit and yet - this disease brings out more hate than I ever thought I could own. Everyday brings another set of problems. And another set of hurt and pain. ALS sucks - FTD really sucks.....