Is there no welfare system in place for someone to look after your son while you're off at work? :(

Also, while I certainly understand your wish to not want to institutionalize or put your son in foster care (I have a heavily disabled younger brother that needs care 24/7, my mum gave up work to be with him all the time), if you know that he'll live far longer than you, I highly suggest trying to transition into eventually doing one of the two. We're currently in the process of doing this because my parents are getting old and they don't want to put the burden of taking care of him to me. We love him, but the physical and mental burden is immense, and we all agreed that he'd probably be better off getting to see us every day in the hospital for another 30 years rather than my parents passing away early from all the stress, leaving him alone and lost and confused.

...but I digress. I'm pretty sure you've already looked at all the options and this was the best choice for you. I wish you and your son the best of luck and I hope that the welfare situation where you're at improves so reality can suck a bit less!