Today I visited with K and we had a pleasant visit. When I drove away I came to a heartbreaking realization. We have absolutely nothing in common to talk about anymore. I listen and laugh and comment on his conversation about his life there but because of his trying to control my life I don't really share much anymore. I talk about the funny things my little dog does, about the weather a TV show I watched and that is about it. I ask about his meals, what did you have for lunch etc., was the music good. Did you sing but that is it. He says how are you and I say fine. He asks did you sleep good last night, I say yes, just great. Our lives are no longer one as it used to be. No plans, no sharing what happened to us together today. Two different worlds. Married but not married. I have tried to recall fun things we did years ago but I guess these memories are disappearing as he changes the subject to something that happened in the LTC that day. His life is there with the other residents. My wonderful marriage to this lovely man is over. Now I am just his caregiver. He is very frightened that something will happen to me. I wanted to scream and throw things but that won't bring back what I have lost.
It gets so very lonely when you reach that point. You are still together but there is very little conversation and zero sharing on a real level. The walls start to close in!
He is very talkative about his life at LTC and every now and then tells me how to do the things I need to do with my life as he sees it but he is not near late stage. He is just very fronto "all about my life, not interested in yours now" I sometimes I just don't care to visit as I really have nothing to say of any importance anymore. I really miss my other husband and life and yes it is very lonesome now. What a terrible way to live.
I think he will out live me as he is still quite active and fit. He has a problem with clogging arteries in his heart, enlarged prostate, memory both long and short term going south, going blind, but that is it. It's all behaviour with him. He is only eating half order of food now. His choice. He is afraid he will gain weight. He is really upset because he now has a skinny body and a pot belly. Pregnant pencil look?? OMG I am actually trying to make a joke!!! Is that a good sign or a stress sign??
Jazzy, my husband's dementia was more the mixed variety but I can relate to a lot of what you say. One of the more difficult times was his final hospitalization. The doctor was trying all kinds of different medications none of which helped too much. He was talking and knew me but could not communicate. The doctor told me he is at the worst stage of his dementia--unable to communicate. I truly feel that is the hardest thing. I would just sit and hold his hand and die a little more inside. Communication is such a vital thing in any relationship. I too wondered if he would outlive me as I was so depleted mentally and emotionally. You are doing a wonderful job caring for your dear husband. One of these days it will be over for you. I know when the end came it was really pretty quick as I thought the end stage would drag on for months but it did not. It may very well be the same for you. God bless.
Jazzy, that is how I feel. I can't share some things in fear it will set off my wife or emphasize what she is missing or she won't understand. But she is not talkative about her live in LTC, expressing herself is difficult. We talk every morning on the phone and I have to think beforehand something to discuss.
My guy has three Dementia's. He has bv Fronto, vascular and Ad. I have to be so careful what I tell him about my life and the house or car or I will have a long lecture on how to do this or that. I miss the interaction but he is not with me anymore. He loves and cares for the residents and laughs and sings with them but he just doesn't have much to say to me.
paulc you sure hit the nail on the head. DON'T SAY ANYTHING THAT MIGHT SET HIM OFF" I tell all the biggest lies that anyone ever heard. In my support group we call them "Dementia fiblets" So sad to have to live like this.
And you never know what will be a trigger. One of her sisters mentioned that one of their cars were old so they were thinking of replacing it (or my wife thought that was said) and she was immediately on me about buying a new car since it is around 16 years old and our son shouldn't be driving such an old car for safety reasons (he goes to college in 3 weeks and will not be around to drive the car). I worry less about the trigger points since they are unpredictable and I was surprised when various news didn't bother her.
But I do avoid information that would make her feel bad about what she is missing in life. So I will say I attended her aunt's funeral and visited her father, but I won't mention eating at a restaurant that she would have liked.
I went to see my DH today in the NH and he did not say one word. He looks at me and has very little expression. I hold his hand and try not to cry. There is nothing to talk about. Our lives together are over. Even when I try to get him to engage, it is very limited. It is just the saddest thing in the world and there is nothing any of us can do. They told me that he hollered for two hours last night and they gave him Ativan. He finally settled down. It is hard to look down the road because it is just too hard to bear. One day at a time.