In the past I've tried to talk w/hb about his vas dementia, but he wasn't interested. He does well at monologues and "conversation" that I can't follow and don't know what he's trying to convey. Today he brought out a kitchen towel and started asking ?s (I thought) about it and what I wanted it for (I thought). When my guesses were wrong, I said I was sorry but I couldn't understand what he wanted. He said, yes you do if you'd just think about it. I said I was sorry, but we just weren't communicating. He was miffed and went for a walk in the woods. He came back and said, we need to sit down quietly and talk. We've been married nearly 48 years, and he has NEVER suggested we sit down and talk about ANYTHING. Blew my mind, but I immediately said, let's do it now. He said, "I was mad but I think I have my thoughts together now." He said in a round about way that he is getting worse. I agreed. He said he'd never drunk much alcohol (none since leaving Army in 1958); so he didn't understand what was going on. Don't know where he got the idea alcohol would have anything to do with it. Anyway, we had a conversation of sorts as best we could follow each other. I explained his condition, that he had done nothing to cause it. "You won't leave me, will you?" Me: "No, of course not; this is something you have no control over." Hb: "I didn't think you would." I explained he'd grown up from an infant and now he was on his way back to infancy (In a round about way. I didn't want to be so blunt, but he seemed for the first time to genuinely want to know what was going on.) We talked about the possibility of home health care if we needed help down the road. He said, "I have 3 more years." Me: "Three more years? You may have many more years." Hb: No, I know I have 3 more years. Hugs and the conversation was over. Wonder if he'll remember "the talk" tomorrow. He definitely was calm and seemingly satisfied. The last couple of days he's asked for help with various simple things like how to put popcorn from the popper into a bowl and which slacks were his gray ones. Maybe acceptance has come. Hope so so he won't be blaming me for everything that's not quite right. Anyone else experienced similar conversations after denial?
Oh, Zibby, it's sometimes amazing what they realize. I have had a soemwhat similar conversation with m DH often, where we have discussed what's happening to him. I have said to him, first that it is not his fault, because he seems to think that he did something wrong to cause it. and then said, as you probably did, that he has an illness that has affected his brain, and it's taken away his memory. I have not pointed out the other things it has taken like his judgement, etc. He's been in a nursing home for the last week, for rehab after he broke his hip.... He said to me that this is a place where they put people that noone wants..... it broke my heart that he would think that, and that he sees himself as that. It's also not true, because many of the residents were gone this weekend with thier families for the Easter holiday. (Of course, many were not gone, and many had no visitors, but unfortunately that's life)... Zibby, they know that there is something wrong. My DH is constantly asking me what's wrong with him. I think it's healthy when they ask what it is.
I too have done this with my DH, severalties. My main approach ha beento clearly define what he's asking, and then answer in short clear words. I try hard to address only what he's asking about. Just as we did with kids-- (classic) "Where did I came from?" Not jump into the whole birds and bees discussion, whe they really want---"Johnny came from Chicago;where did I come from." My DH is in Stage 6 and he knows he's having more trouble with words, and with his walking, and with sleeping at appropriate times. I'm not dumping the whole load of progression on him all at once. We'll deal with things as they come along. That's hard enough.
Dh has always seemed completely unaware of his condition, but once, a couple weeks ago when we were arguing about whether or not to go someplace he mumbled "I'm not good enough anymore" which I rigorously denied, there was some other reason why we couldn' t go where he wanted. The last few days he has seemed depressed, but he hasn't been able to talk about anything. Sad.
We actually do have semi-meaningful talks about it once in a while. Usually he is (fortunately) unaware that there is anything abnormal about the struggles he has with everyday tasks. But it is not unusual for resentment to bubble up when I'm offering help and suggestions...for ex, Me: Can you get in the other door? (of the car.) Him: I can DO that!
If he's been feeling/acting particularly snippy, he often later apologizes and thanks me for "everything I do." He knows very well that he has Alzheimer's and it's the cause of his problems. I guess it's sometimes going to have to do with what functions are most affected. Since J's main weakness is visuo-spatial stuff, he may retain a more than average ability to know that he has AD, but such awareness is--as I said--thankfully buffered in most conscious moments.
My husband and I have never discussed his dementia. He was present when the doctor told both of us what the diagnosis was. He did not go into what the progression was. Everything I know I found either here or somewhere else on the Web or from the Coach's book. Since he didn't want to know, he never knew as far as I am aware.
I have had similiar comments from G. He recently commented that he wasn't getting any better...which I thought interesting. He will often say he can do more to help around the house than I think he can, but then he refuses to do anything! It all depends on the moment.
Is it any wonder we are so worn out? They say one thing, mean another, don't remember they said it, can't understand what we mean when we try to have a conversation, and then all of a sudden have moments of perfect lucidity.
I am a talker ( as if you didn't know that), and I have always liked to discuss our problems, whether mine, his, or ours, and figure out together how to handle them. In the beginning of the disease, he was more aware of his problems, and could talk about them. Now I can't figure out if he isn't aware of his declines, or if he just isn't able to express them or doesn't understand them. I don't know. If I ask him about it, he struggles to think, then gets discouraged and says he doesn't know what he feels or thinks.
Although I have noticed lately that something has changed. When old friends from up North used to call and ask how he was, he used to enthusiastically tell them that he was doing fine - holding his own. Keeping busy. The last few times friends have called, I have heard his end of the conversation, which is somewhat "down". He says rather dejectedly that he's okay, trying to hold on. It's so sad. I hate this whole thing. Every bit of it.
We have discussed his dementia since the beginning. Lately, he has been telling me,almost daily, that he knows he is failing and is getting worse and "there's not a damn thing I can do about it!" Then he says it's so frustrating to him. He will also tell me if it's bad on him, how much more so it must be for me. He is still very good at expressing himself.
I'm with Joang, it is so sad - and I hate it too - every bit of it.
I hate it! But, that said, what can I do about it? Nothing, really.
My husband, last week, much to my surprise asked me what he had. It was because I had received a small package from an eldercare lawyer that the subject came up. He asked me why I had received it. We talked about it, but what did it matter? The next day, or even an hour later, he has forgotten it. I asked my grandson yesterday, after Easter dinner, to give his grandfather extra attention now because next year he may not remember him. He's a teenager and was quite shocked when I said that. But, he sat down with his grandfather instead of playing X-Box with his cousin and had a nice talk with him. I hope it continues, because it means a lot to his Papa.
Oh, now I'm getting sad. I'd better stop writing. I'm supposed to be getting ready for the painter. Oh, how I love this place. My nerves have been acting up these past few weeks. Here I thought I was doing so well, but I guess I'm not.
The talks were both a blessing and a curse for Jim. Because the Motor Neuron Variant progresses faster than the dementia, Jim was almost always aware of how sick he was physically. He was also fairly aware of his dementia. How painful it is to sit and talk about how sick they will become. Then again, I would not trade the 90 minutes that Jim and I spent talking out in the woods behind the Hospice House, on the day he died, for anything in the world.
Zibby, hang on to that wonderful conversation.
Bev, good job with your grandson, how Jim loved it when the boys would sit with him. He would play chess with our 10 yr old. Sadly they were both at the same level.
Susan L, the grandkids are the most important thing in his world, but you know how teenagers are, right? So, sometimes a little push in the right direction helps them remember that the world doesn't revolve around them, that there are others in the family who need some attention and love. We know how much we mean to them, but I don't want the kids, as they get older, to regret they didn't spend more time with their grandfather before his memory doesn't allow them in.
Art has known from the start his future. Having watched his grandfather, uncles, and dad succumb to the disease he knows. He talks with his sister who is slightly ahead of him in the disease (I believe) he sees. He is aware of the he has trouble doing things or can no longer do. I try not to point out when he forgets or repeats but slip up occasionally. Right now we have our 4 year old granddaughter staying the night. She is in cuddling with Papa - something he would never do in the past with any kids let alone his own kids/grandkids. These two youngest see a side and will have memories of their Papa the older 4 will never see - a childish side. My son watches him with them and sees him playing and laughing with them = a side he never say when he was growing up. Our son says he is glad to see it even if it wasn't with him. I point out this positive side to the disease and hb will say 'I guess it isn't all bad then'.
I am grateful my husband didn't know he could get this disease like yours does. It must have been awful waiting for the "other shoe to drop," so to speak. He still doesn't think he has anything wrong with him, even when asking me questions over and over again and again. This is occurring more frequently now. But, he just thinks it's the normal aging process. As far as the grandkids, he was always such a big part of their lives. Papa has always been there for them. He would do anything in the world for them and always has. But, since this disease was diagnosed, it hasn't been the same. Of course, he doesn't notice that, which is good. I suppose I'm the one who feels the loss most.