Harbl, having a dependent adult son (early onset schizophrenia, he is also a brony, has the tat's to prove it), we understand the fear of what will happen to them after we pass. There is a lawyer in Calgary, Gordon and Anne Vanderleek who are very familiar with estate planning for parents of children with disabilities. One word, RDSP. My mother has been very generous and my wife has been great at saving all the cash gifts #1 son has received since birth (he's 34 now). It's starting to grow into a rather substantial stash. My niece has agreed to be his trustee once we're no longer able. So there are steps you can take to give yourselves some peace of mind.

It crushes me to put myself in his shoes, it is a life of extreme isolation and loneliness. He's a strapping 6'2 blonde blue-eyed hunk that the hunnies go wild over,...until they talk to him and can't make sense of what he's saying. I think that would be worse than being simply ignored. Sure, I escape into drink at times, but my skills at dealing with our situation continue to improve. So it does get better friend, my aha moment came when I decided to accept the hand we were dealt. I mean,..truly accept and embrace. I was horrible in the beginning, so fearful and ignorant of what was happening, I would stay out late drinking and fill every moment doing something other than supporting my spouse. I was scared. It sounds like you are coming to terms and developing some coping skills. Take care and like BSD says, don't be afraid of being the squeaky wheel. Learn the lingo of the healthcare professionals so you can better communicate with them. It does get better, just hang in there pal.