My FIL is also not on Medicaid, so we hired a private caregiver who comes in a few hours a day to give us a break. It’s expensive, but very necessary for our sanity - it is hard, no doubt about it. I took care of my mom who had ALS and I thought that was hard, but in many ways this is harder because my FIL is completely different than the person he was (aggressive, etc) and doesn’t know who we are.
Oh my, that is hard! At least my Dad always knew who we were, etc. — I really feel for you! How heartbreaking. ALS is a cruel disease, too. You have really been through so much. My Mom had a host of issues, COPD, diabetes, kidney stones, you name it, and I cared for both parents before she died, then my Dad. Caring for a dementia patient is much harder, you are right. So many years of caregiving does take a toll on one. I am glad you hire those caregivers. Breaks are needed.