Living with REM Behavior Disorder

My husband has had rbd as long as he can remember. I found out when we married 33 years ago. Bruises, cuts, trips to the ER. The worst is his banchee screams that I swear are going to give me a heart attack We and I mean we are always tired. He acts out every night in one way or the other. Sometimes it seems like it is all night long! In 1993 he was diagnosed, put on clonezepam. We have been on every drug you can imagine. Everyone of them not working for him or they give him bad side effects. The clonezepam works the best. To others it would seem it doesn’t work but he went off of it once saying he was having trouble with his memory. He didn’t tell me until sometime later. He went through withdrawal. His dreams did get worse. He even spent 2 months in hospital trying different drugs.
Now he has been diagnosed with dementia, and has signs of parkinsons. We knew about the parkinsons (that it could come with rbd) but the dementia we hadn’t heard about. Most likely his dementia is Lewy body but they are not sure yet. He has not worked for 5 years now. He is in his mid to late 50’s. He is very slow at everything, tired all the time, forgets, and he doesn’t make very safety wise decisions. If you have rbd please tell your doctor to watch for these other things. We have struggled for years. I was on my knees begging his doctor for a slip to get out of work. He couldn’t even remember how to get into his computer files at work. He doesn’t drive. His reactions are too slow and he is always tired. I could write a book and probably should. If you know of anyone else this way please post and let me know. We have been searching a long time for someone else who has this. It is rare.
Also important is that if you do have or get lewy body dementia with this some of the drugs they use to treat you with could do you a lot of harm. I wish we had know that a few years ago.