Last night I freaked out when my dh asked me to tell him about the stages of AD. He looked so normal when he said it and I didn't know how to respond. He told me he had a right to know and I needed to tell him since he couldn't understand it on his computer. He looked and sounded almost normal when he asked. It was frightening.
I composed myself and said Ok, lets go to the computer and look up the Mayo Clinic site. By the time I got the right location and started reading and explaining to him the stages, leaving really bad stuff out I could see he wasn't following it too well. He said I guess I am mild...I said...no you are moderate and he said OK that doesn't sound too bad.
Did I do the right thing? I didn't know how to handle it. He hasn't said anything about it today.
Judith, the only good thing about AD is that they dont remember. if it was me i would tell him some of the stages not too bad ones, consolidating it into something you think he can live with. its my reasoning not to make them unduly saddened or frightened by the fatality or severity of the late stages. what purpose does it serve? once they get to that point its a moot point trying to explain it anyway in terms they will comprehend. i say be graceful and allow them to think they are ill but not dwell on the inevitable. i see it as the compassionate option to a dying person. all they would do would be worry if they did understand the outcome. at least i see it this way. my DH is end journey and never knew what hit him. i want to keep it that way. he could have never lived knowing the real truth. divvi
Thanks Divvi...It was such a shock to me because he seemed so "normal" when he asked. I tried to be kind and only telling him what I thought he could handle. It didn't take long to know he was not understanding anything I said. But, I have been so sad today thinking about how aware he was for a short time.
Yes I think you did the right thing. Every now and then my DH will say something like that and I'll try to explain it to him in simple, not too scary terms..but he has never asked how far along he is with it. In certain circumstances, just as with children, we should try to be as honest as we can in a way that is not frightening to them, just not telling too much.
Sometimes when DH asks me for the zillionth time what we are having for dinner, which he has done today, I will try to make a little game of this with him if he is in the mood for it..I might say, what could go well with rice? And he can give me a list of things which I also use to find things he might like too..I try to dig things out of him food memory bank...and if he doesn't quite get it I'll give him a hint...like what has feathers and a beak..and he will say CHICKEN!! BINGO.
I am lucky that he has such a good sense of humor and that he laughs easily. His sharp wit is in tact and he makes me laugh sometimes..wishing I had thought of some of the funny things he does.
My DH still has his wit, just today his knit hat was not staying on his head. He said his hat was to small and his head was to big, then he said but my brain is getting smaller. I just looked at him and he gave me a sly smile and we both started laughing. What else can you do........
I'm not sure what I would find harder, having my DH know what he has or that he doesn't have a clue. My DH has no idea he has a problem. He thinks he is as normal as the next guy and chalks up his lack of memory as "Senior Moments". I think I prefer him not knowing. Much less painful for both of us.
My husband is well aware of the end stages. Since we were seldom around his dad during all those years and stages, he doesn't know much about it. He has not asked either. He knows what the end stage is like and I guess that is enough for him. When he has symptoms others here have had that are part of AD, I do not tell him. He is back into the coughing stage. Others here said it was common, so I don't worry about and don't tell him. The little things like abscessing over how things are placed by his chair, having the straps on his glasses that are hung 'just so' by his chair on the window valance; insist on closing the curtains up at 5 o'clock and close pinning them together all the way down except to leave a small space for the cat to get through; never knowing where he puts the remotes (I have my own thank goodness), and it goes on - little things I just tolerate knowing from here they are 'normal'.
Yes, he knows. He saw my mom the last few years when she didn't know us, was doing strange things that I now know are 'normal'. He saw his dad and I hope he is like his dad in that his dad was not incontinent until late in the disease - long after he no longer knew anyone or spoke.
My FIL had EOAD so my husband lived through it from ages 11 to 21. He knew exactly what the disease would bring and said many times he would commit suicide if he had inherited it. However, when he was dx with MCI, probable AD, I kept emphasizing that it was a different form of the disease to help him deal with it emotionally. I think he believed that in the early stages and by later on, he lost the awareness of what was happening to him. We would see a sad story about a terminally ill person on the news, for example, and he would say something like "Thank goodness we're healthy." I am so glad that usually, people with AD are unable to grasp it's full impact. That and the fact it doesn't cause physical pain like other diseases (I hope) are the only things I can think of to be thankful for in this situation.
My FIL had alzheimer's and the last rememberance that my DH has of him is going to visit him and his mother and he wouldn't let him come in because he didn't know him, he made him get a hotel room. So yes, my DH knows about how bad it can get but I don't think he remembers what it means. He knows that it happened but he can no longer relate it to dementia. It is just an event that happened in his past. He has never asked me about the stages of dementia but I would probably just briefly describe the highlights and leave out the outcomes.
A friend that is down here from up north was telling me hb told her he did not want to live in a nursing home for 9 years not knowing anyone like his dad. I assume he told her this last fall when we were at their house up north. It really irritates me that he tells others what he should be telling me. This is not something new - this has gone on for years. He would spill his feelings to my sister and other women, but not me.