Terrified!

One of the hardest parts of caring for my DH was the uncertainty about life expectancy. Sometimes I was struggling so much that it seemed impossible to continue doing it for another day, let alone an unknown number of years.

If you haven't already, you might want to see if he qualifies for Hospice. Their requirements are different for dementia (i.e., don't need a diagnosis of <6 months to live) and can be very helpful with medications, bathing, referrals to other types of support, etc, all at no cost. Just having another set of eyes on him helped me a lot. When sundowning became too difficult, they prescribed medications to help. The focus was on making him more comfortable and helping me as well. His primary care physician provided a referral, but I don't think that's required.

My thoughts are with you. It's a hard cruel road. Reach out for any help you can get, including letting friends know what they can do — bring a meal, do laundry, clean the house — because most people don't know what you need and may be shy to ask.