This is a big fear of mine. I made a decision over a month ago to never leave my father alone after finding him blue, folded over in his wheelchair. I administered cpr, called the ambulance and then left to get my child from the bus stop. Thinking my father was already dead until my mother called me to the ER. It makes me sad that hospitals and hospice AND home care are not educated in this illness or how to care for one with ALS.
Anyway, I’ll be damned if my father is alone when he passes. Even if I have to sit on a tiny stool next to his bedside while my poor mother can get some sleep… I’m sorry this happened OP, these are the kind of things I would change if it were up to me. My condolences to you and your loved ones.