@kartwk
I'm sorry you're feeling so alone. I know how that feels, and it can feel that way even if you have people to open up to because they often can't see what you're talking about. But, you're the one that has lived with him all of this time, you're the one that knows all of his habits and his day to day personality. You just have to go with your gut and dive in with the neurology appointment without anyone's blessing except yours. If you're wrong, then yay, but you have to find out what IS going on.
I tried to read back and see if you have taken him to a neurologist yet?
I took my husband to his PCP and he shrugged my concerns off. I'm done with him. I got H to go to a neurologist and did they did do cognitive testing. He showed as having early, unspecified dementia. That was about 10 months ago. We only saw the NP the first 2 visits, then I requested to see the actual neurologist the 3rd visit, also, useless. I had to push for bloodwork and scans. They showed some of the tau and amyloid proteins were off, but still not much interest in him or his plight.
I finally got him into the UCLA AD department and I am so happy that I did. When you have a neurologist that is part of an actual Dementia/Alzheimer's team it makes a world of difference. You feel like you have a team of humans that actually care about the patient AND the caregiver(s) all the time, not just when you're face to face, (although the others were not necessarily invested face to face, either).
My H isn't too bad yet. He does have some quirks and many lack of understandings, and when I have to trick him into or out of something important, he will say I'm sneaking behind his back. I am, but it's sometimes the only way. Then you have to listen to the berating and just accept it. So fun.
I hope you can get some answers and some peace of mind soon. And I hope you can get help for his pain/moaning, I get the annoyance of that. My H coughs alll the time and gargles when he talks, with no diagnosis...
Hugs to you.