Good morning, @cmiddlet I sense from your post this is one of those many times when a caregiver feels very overwhelmed. I apologize if I read your post wrong, but I remember those times when all I seemed to have were questions as a caregiver and no answers.

Unfortunately, for many of your questions, the answers include the phrase "it depends". Not every state, insurance company, nor company are the same. My wife was 48 when diagnosed. She was self-employed so issues of coverage, etc. were on me. Just in my case I found my bosses, and hence HR, were not particularly understanding, but that was just my situation. I was fired from my last job after my young boss told me she didn't want anyone working for her that wasn't "100% focused only on work". Getting medical coverage via the ACA was a lifesaver and helped us avoid bankruptcy and having to sell our home for medical care costs.

As far as talking about my wife's condition, she and I decided honesty was the best policy for our children and immediate family. This way our immediate family all knew the same information and I was helped from the feeling of having to sugarcoat things. Again, just in our case, I found most of our long time friends really didn't care and adhered to the mantra of "out of sight, out of mind".

Maybe your husband's company has long-term disability insurance? SSDI didn't work for my wife as there were things she could still do that they felt would allow her to work, so I can't really talk to that support.

On the legal front, there are lots of different considerations for things like a power of attorney. There are ones for legal issues, medical issues, etc. There are also documents for end-of-life directives, etc. Plus real estate ownership is complex. I would suggest consulting an attorney to best understand and get these things in order for exactly how you want them to work. Again, rules can vary by state, etc. I suggest the same consultation, but with a tax expert, on your retirement assets questions. Talk about complex!

Caring for others when you are a caregiver is tough, too. While my wife was on her journey my father was fighting congestive heart failure and my mother-in-law had dementia. No caregiver can do it all. Remember Batman and Wonder Woman weren't caregivers and superheroes only exist in the comics -- not in real life.

I hope my observations have been of some help. Please feel free to ask any additional questions and I hope others will chime in with their ideas and thoughts.

Strength, Courage, & Peace