@rea this is going to be long because of how strongly I feel about it. First let me say my heart goes out to you and your husband. I am sorry so many of us are faced with this issue. I have cared at home for 3 family members that lost their neurological capacities. My sisters was glioblastoma and she was able to refuse treatment, so the worst part of hers was relatively short over her last few months. My brothers was due to a chronic illness, both the treatments and the illness took his mind away little by little over the last 2 years of his life. My dad’s was Alzheimer’s, a long slow decline. 2 of the above begged me to help them end their lives multiple times at various points along their journeys. That was soul crushing. They had been rugged outdoors men for most of their lives. Their bodies were almost too resilient or we could have just declined treatment for any opportunistic virus or infection, and let them go more softly.
And now, 2 years after the last passing, in what appears to be a healthy body, I have been diagnosed with 3 (because hey - go big or go home:). somewhat ominous issues. All are at the “we need to monitor this every 6 months” stage. The 3rd diagnosis is the only one that scares me… Parkinsonism, because I already know my mind is going.
This actually has been an unexpected gift for me, because
I have been able to make my peace with it and make decisions and preparations on how I will proceed.
They freed me to move forward JOYFULLY with the time I have left.

As you pointed out, in the USA we are limited in our power to act on our wishes even in states that allow DWD or MAID. We need to make our voices heard and try to update the laws surrounding end of life care and decisions. I am making that one of my priority EOL causes. But I admit I don’t expect that will change within my lifetime, so I have my own plan in place.

I have my POLST, Advanced Medical Directive, and beneficiary paperwork all done. I have made it crystal clear with what remains of my family and my PCP what my wishes are.
Hugs and strength to you- you are not alone.