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  1.  
    People who ask me questions about my husband when he is sitting right there! Why do they do that? And they know he is able to talk and answer simple questions....example: we were out having dinner with George's family last night; his sister was visiting from out of town; after we had all finished dinner we sat around and chatted for a while, and his step-mom said to me, Did he like his scallops? Before I could answer George looked at her and said, "Yes they wre good". I felt like saying, "why don't you ask George?" This is not the first time she has done this...and his father does it too! Why?!!!
    • CommentAuthorAdmin
    • CommentTimeJul 31st 2010
     
    People have no idea what an AD person can and cannot do, which is understandable, since the disease is so complex and abilities can change from day to day. When someone asks you a question George can answer himself, I see nothing wrong with politely saying, "Ask him."

    joang
  2.  
    Joan's point is well taken. I might add it is something we too have to be mindful of when we are at the doctors offices with them. I know I do my best to answer by saying, when either asked or he doesn't answer right off, "Dear, you __________." rather than " well he______". He has to be kept a part of the conversation.
    When people who no long come around and ask "how's he doing" ( and since they don't bother anymore I don't think they really care) I just tell them call him and visit with him on the phone sometime.
    Bella, good for your DH that he speaks up for himself in a social situation like this. When I have been in this situation, knowing DH can answer for himself, I just say " ask him."
    • CommentAuthorJanet
    • CommentTimeJul 31st 2010
     
    I think people do this even with older people without dementia. I was shopping with my mom once. She was looking at frames for a picture, and the clerk kept showing them to me and saying, "Would she like this one?" I did say, "Why don't you ask her?"
    • CommentAuthorcarosi*
    • CommentTimeJul 31st 2010
     
    Not only does this happen to those with dementia, it happens to those with other disabilities. There is nothing like being talked about in front of yourself as hough you were a table or tree. A missing limb doesnt affect the hearing and speech centers. Even the blind or deaf can answer for themselves, usually.
    I think it's amazing sometimes, how disabled the thinking of the non-disabled is.
  3.  
    I went to buy a car for myself. I had done the research and knew exactly what I wanted down to the color (red) and the accessories. The salesman proceeded to tell my husband what I needed. I informed the jerk that I was the one who was buying and would be driving the car. I bought my dream car elsewhere-a beautiful bright red Honda Prelude with a moon roof and spoiler.
    • CommentAuthorWolf
    • CommentTimeJul 31st 2010
     
    I've seen that all my life. Idiots talking to me about what my wife might think. She ran the Canadian operations for an international company; but, is so unassuming she never told any of them off. I saw another version of that on license plates on a yellow Ferrari. The plates said, "Nice Guy". As in nice guys finish last. No they don't.

    I do talk about my DW in front of her in the third person sometimes. When we went to lunch yesterday with two other couples and the waitress was asking my wife more questions about the order I placed (I hate that part. It looks like I'm from some backward country and often the waitress will show some minor reaction and talk to her) - I said to her, "We have Alzheimer's" in a slightly lower voice. I used to get irritated; but, I realize it's women sticking up for themselves and I think women should do more of that. Loudly and publicly.

    But the real point is that I was telling our friends how my wife was doing because she can't and they want to know. One of the wives got upset and charged me with being insensitive. No I'm not. If appearance is what counts then yes. But if caring about how she's really doing counts then I'm telling her story for her.

    If I'd done that last year it would have been disrespectful because D could still express herself a bit but more than that she would have been offended. I don't need anyone else telling me who she trusts and who looks out for her and what she follows and doesn't. I told her three times in the 35 minute drive over there where we were going and who we were seeing and each time she was delighted.

    I agree with the sentiment that not showing respect is rude. From reading the different boards I'm more and more getting the sense that Alzheimer's may be an extremely personal thing where each sufferer each day is in a fairly unique state. My wife varies a great deal from day to day and even within days. I'm beginning to suspect all diseases and all afflictions are like that from migraines to common colds. Each person experiences that thing at that time in their own complex and unique way.

    The truth is the normal people that don't get it aren't in the normal world. They're inside themselves trying to cope as best they can with life just like I am. People that don't realize the respect of others aren't rude - they're ignorant. Just like I was (and am). But I know that the 'normal' world where I can use inflection and eye contact to great effect is utterly useless here. This is all about touch, body language, and sensing the welcome into my personal space. My DW has become a sophisticated sensing device around all those things which she never was before.

    My answer to rude behaviour from the unwashed is that we're not on the same planet anyways. And once in a while I blast them loudly because that's what I wanted to do. It's not about them or even my DW who is on an inevitable road. It's about me and my journey in this and whenever I am truly inside that belief - it seems to me things come more easily, more genuinely.

    I hope I'm not writing too long; but, I'll tell you a secret I've learned. Those people who p*ss you off are walking around with guns and knives - but, you have a nuclear weapon. Only you know whether this will hurt your DH/DW but once consider letting them know the full extent of their ignorance. You're absolutely in the right. Everyone else around will agree with you. And you'll have helped some poor shmuck learn something that's bound to help them get along better in life. Besides, it feels great every once in a while to get your ya-ya's out on the deserving.

    Don't mess with a caregiver.
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      CommentAuthorStarling*
    • CommentTimeAug 1st 2010
     
    The worst example of this kind of thing, and totally inappropriate thing, was at my then 12 year old daughter's last visit to a pediatrician. He asked ME if she was having regular bowel movements.

    Now how would I know the answer to that one. She was 12 YEARS old, not 12 MONTHS old!

    So it isn't just dementia patients who have the problem.

    On the other hand it drove me nuts when servers in restaurants refused to look at me when I was doing all of the ordering. In the beginning it was because he was as deaf as a post and had stopped wearing his hearing aides. Later because he was totally confused whenever they asked him a question. Some of the time I'd repeat the question making him LOOK at me and he could answer it, but later, part of early stage 6 stuff, he could not choose so I did. Some servers didn't figure it out even after that happened.
  4.  
    Starling, I'd be tempted to get into the habit of smiling pleasantly and telling the server, "I'll be doing the ordering." Luckily, at our retirement facility the waitstaff knows the score and we just don't eat away from here much anymore. When we do, he says he'll have the same things I ordered, even if it's something he hates.
    • CommentAuthorAdmin
    • CommentTimeAug 1st 2010 edited
     
    Comment Author BLN CommentTime 6 minutes ago edited edit delete
    I *never* treat my husband as if he's not there. He is always included in group conversations.

    Having said that, though: Let's say we're discussing his condition with a doctor and the doctor asks *me* a question about things I've observed about my husband's condition. Let's face it, the English language does has its limits. Meaning, there are times when we, as caregivers, we will indeed say, "He/she does such and such..." It's only logical to direct your response at the person who asked the question.

    And yet, when my spouse is right there with me, I'm afraid to start a sentence with "he..." because I don't want to be jumped all over for being insensitive or politically incorrect.

    I'm curious how you all feel about this.

    Does my question make sense? I'm trying to phrase this well, but I can't seem to word this in a way that makes sense!

    For me, the best approach (which I hope is deemed "acceptable") is to answer the question with "he," and yet make sure to frequently make eye contact with my spouse so that it's clear that he's involved in the conversation.
    • CommentAuthorAdmin
    • CommentTimeAug 1st 2010
     
    Comment Author blue CommentTime 1 minute ago edit delete

    I find this hard to. I don't want my DH to feel left out. But then again if you ask him, he is just fine.
  5.  
    At our doctor's office, DH sits on the examining table and I sit to the side and in back of him. The Dr. can/will ask him a question or whatever, and sometimes DH will answer, other times he will look around at me. If he does, I'll repeat the question the Dr. asked - like, the Dr. wants to know.... If he still doesn't answer, I will answer for him, but I give him the opportunity to answer first. This works well for both the Dr., DH and me.
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      CommentAuthorStarling*
    • CommentTimeAug 1st 2010
     
    Vickie, mostly I did not talk to the doctor. I let my husband answer for himself if he could. I did give the doctor a list of whatever had come up in the previous 4 months, so we could discuss those things. If he directed a question to me, I answered it. Sometimes with a "he..." and sometimes not.

    You can tie yourself up in knots or just accept the fact that the longer the disease lasts the more talking the spouse (and anyone else responsible for the caregiving) is going to end up saying.
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      CommentAuthorchris r*
    • CommentTimeAug 3rd 2010
     
    Yes, I answer for him.... but damn it, look at him when you ask. I had this happen with my mother also, why? she didn't have AD, yes, she was ill, but she could answer for herself. Even sales people will, it seems, ask the person who looks most responsible. So when you are with a young person they ask you, but when you're with an older person, they still ask you. It also has to do with who is answering. I'm outspoken, and will jump in and answer stuff, when I probably shouldn't. I really got annoyed however, when we were at the doctor for his pre op last week, and the doctor actually shook hands with me as he left the room, and not with my husband. He was the patient. but it might have been my fault because i take over for him so much. got to stop doing that.
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      CommentAuthorStarling*
    • CommentTimeAug 5th 2010
     
    No Chris, you do NOT have to stop doing that.

    Like it or not, more and more, they simply are not there. My husband is now in a nursing home. He looks like the most competent person there. It is a dementia floor, but I'm not sure they all have dementia. There is one man with big physical issues which my husband does not have who seems almost normal cognitively. He ended up in the nursing home early, if he has dementia, because of the physical issues.

    Like it or not, more and more, we are all doing more of it, not less.