He listens to nothing I say. I am very afraid of the future. He is frustrated because he is confused and yet will not believe me when I to explain things to him.. He just tells me everything is my fault. He used to be an engineer and now he can't figure anything out. I am trying to keep everything together and believe I could but I have no leverage with him and he blocks most of my efforts. I don't know what is going to happen to us.
You are right that this will not get better, unless you get him to the doctor and they can find some correctable cause of the cognitive problems he is having. It is truly no use for you to try to keep explaining - you more or less have to let him think things are OK and work around the problems he has in understanding what is wrong.
My dad HATED the word "confused" because in his mind he wasn't. He had a phase of confabulation, and thank God, we knew it was not critical to correct him, because for the most part what he confabulated about his situation was pleasant and hopeful. He thought he was not in a nursing home, but a religious retreat house where when Mom and I could get away we'd join him...and he'd sit and read what ever he could get his hands on, I made sure he had lots of his old books from home and we'd just sit, maybe he'd read to me, maybe we'd watch a movie, and that was how he made peace with the situation. I'd bring him pictures of Mom and explain she was still working in her PT or had just been ill and was not ready to come see him yet, while actually she turned down any further visits that I could have made with her, because she was starting to imagine things that were not as hopeful or pleasant and blamed him for his problems and hers...
Well, it is sad, and I hope you have some help keeping things together and some chances to have some pleasant times with hubby. I bet Jeanne Gibbs will chime in here soon and have good words for you too, because she had to do the same and make the best of a tough situation.
He was paranoid in the first months of his disease, but once he accepted his diagnosis he was less inclined to blame other people and more willing to see his problems as the result of his disease, at least in his more rational periods. Then I could say to him things like, "Of course you can carry a try. Your balance has always been excellent. But when ol' Lewy gets involved it is easy for you to have an accident. How about if I carry your tray, and you carry your glass of juice?" Or, hugging him before bed, "Oh honey, I'm so sorry Lewy was so hard on you today. Have a good night's sleep and let's hope tomorrow is better."
In a way it was a comfort for both of us to be able to refer to the disease openly and like something we couldn't control.
I never used this reasoning when he was in the midst of a delusion or was very confused. Then I just did my best to get into his reality.
I know that being open about dementia is not the best approach for everyone. We never use the D word with my mother. My mother's main coping mechanism all her life has been denial. Why should she change now?
With an engineer, or a person who works daily with scientific method, the strong need to understand cause and effect may be a compelling reason to explain the actual causes of the decline in functioning. It worked for us.
Carol, are you working with a good dementia specialist who considers you a care partner? Ours was absolutely excellent and that made a HUGE difference. Do you have a good idea of what kind of dementia your husband has? Have you found a local support group for caregivers of persons with dementia? Have you started the process of getting in-home help? If you don't already have a house cleaner and someone to help with laundry, that is a good place to start. If/when your husband cannot be left alone for a while, arrange for someone to be with him a few hours each week, so you can get away.
You say that you don't know what is going to happen to "us" -- and that is absolutely true. Dementia is full of surprises. Get as much help as you can, learn as much as you can about available resources, post here often about specific problems along the way. And accept that most cases of dementia ultimately cannot be handled in a private home and certainly not by one caregiver. Take one day at a time, but keep eye out for what the next step might be.