Oh, Denise! You got me. Your plan and instructions had me in tears!
My first husband has endured ALS (Lou Gehrig’s disease) for 14 years. He’s been on life support for most of those years (feeding tube, trachea tube, can only move his eyes and facial muscles). The machine he uses for communicating is very difficult and frustrating for him (the fist one he had and was used to broke and they couldn’t replace with the same mode).
I lay in bed many nights tormented by thoughts of being in his condition (or worse having one of our two sons ending up with ALS). It’s a fear I will never escape. 💔