I am 42 years old. Though I dont have ALS, I have APLS (Antiphospholipid Antibody Syndrome)which causes me to have strokes on a consistent basis. I have Lupus, Rhuematoid Arthritis, Pacer, stents in futile attempts to protect what is left of my working organs ( not many as most have been removed) I have grand mal seizures, and several times have no use of parts of my body and cannot verbalize or move some of my limbs. I know how frustrated your brother feels believe me. Its because it really is dehumanizing to us, well I can only speak for myself here. I use to function on my own and each day I find pieces of me I have to leave behind, its almost like I lost my “sense of purpose” for being here at times, so that’s the frustration we feel. I don’t think there is ever is a way to learn to say goodbye. I had to teach my daughters when they were 5 and 8 that Mommy might “fall down” and not get up. What child can comprehend that ? Our biggest fears are for you our families, not for us. I think those of us with illness have honestly gotten really good at “dealing” with pain in front of others, but mostly for their sake, but i know myself, like Morrie , cry at night, when no one sees. Why make anyone else miserable is our thought. Leaving yourself behind a little piece at a time each and every day sometimes seems hardly worth fighting to move forward for, thus that frustration will shine thru regardless.
Honestly, as ready as I am at times to say goodbye, though we have no choice in these cases, our hearts are never ready.