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    • CommentAuthorAdmin
    • CommentTimeApr 9th 2008
    Hello Everyone,

    Today's blog is about how absolutely normal and unafflicted my husband appeared in public during the entire trip to Rhode Island. It certainly made me look like a complaining liar. Complete familiarity with the people and area may have contributed to it. I know how stressed and confused he gets in unfamiliar surroundings.

    I would like to hear if any of you have ever experienced this with your spouses. Any difference in behavior and ability in familiar vs. unfamiliar places?

    • CommentTimeApr 9th 2008
    We moved across country, probably right after he began to be sick. If we hadn't moved we probably would not have discovered that he was sick quite as soon. He knew his phone number and address where we used to live. He never learned the one here. He knew how to get to just about any place in our County in the old state. He had and has a really hard time getting around here and, of course, can't verbalize where we are going.

    People have also mentioned that when other folks are around their husbands seem very normal for a long time, and then, once those people who are visiting are no longer around, their husbands crashed sometimes for several days.

    I think this is all part of the norm for this disease.
    Jeff does definitely step it up a bit around family friends whom he doesn't see all the time. I think part of it is the stimulant effect of being with people you're comfortable with but aren't your daily for some reason he can be at his best. Public behavior, on the other hand, is still a bit odd regardless, whether he's with me or others.
    At stores or in lunch places, for example, he hovers oddly, sometimes ending up places like behind the sales counter without really realizing where he is, or that the sales staff is looking at him strangely. If a person (such as a guitarist who was setting up to strum in Potbelly Sandwiches today,) nods or says hi to him as he gazes, he might turn to face that person as if he feels that he should now be engaging that person in a full-scale conversation. People aren't quite sure what to do with it. I usually try to gently lead him on our way.
    • CommentAuthorSunshyne
    • CommentTimeApr 9th 2008
    During the past year, I've taken my husband on a couple of business trips -- places he may have briefly visited once or twice long ago, but they were big cities that have changed a lot since then. One of the trips was to a major conference where I was speaking, hundreds of people around, and only one of the dozens with whom I spoke was someone we had met before. The other was for visits to two companies to discuss possible collaborations; again, almost everyone was a complete stranger. As far as I could tell, he did great ... at the conference, he chatted with others while I was answering questions, etc, and that seemed to go well. They gave him their business cards and messages for me, which he apparently delivered pretty much intact. He sat in on meetings and even offered some very helpful advice. He was a little quieter than he would have been back in his prime, but nothing anyone else would have noticed.

    With me, he had trouble remembering where we were and why, what day it was, and etc. I had to help him order at the restaurants (we dined alone most of the time ... I didn't want to risk TOO much). He kept trying to wander off in the airports, and was nervous about getting to our gate on time, when we'd been sitting at our gate for two hours and he'd asked me about it a dozen times.

    When my mother was diagnosed with AD, I remember my father was convinced that she had Lewy Body. His reason was that she responded to unusual stimuli by briefly appearing to be much better, although the effects would wear off. At that time, this type of behavior was one way to distinguish between AD and Lewy Body. (I never really researched Lewy Body so I don't know if this is true or not.)

    But she certainly demonstrated that aspect of her disease to me. She was in a late stage where she couldn't walk, couldn't remember anyone including my father, had difficulty talking, couldn't feed herself, was incontinent, had hallucinations, had terrible temper-tantrums, etc. I lived halfway across the country and hadn't seen her for perhaps a year. My father asked me to come stay with her while he was in the hospital for surgery. When I arrived, my mother lit up -- she clearly knew me, knew who I was, and talked (a bit garbled, true, but I could tell what she meant) about fun things we had done together. All afternoon, she was happy and chatting with me, telling me how much she loved me. She participated in a sing-along, she was able to feed herself a bit.

    The next day, she knew that I was someone she liked, but wasn't at all sure who I was, and didn't talk much, although she clearly enjoyed being pushed around outside in her wheelchair, looking at the flowers. The third day, she didn't know me and didn't want me anywhere near, swore at me, threatened me, and tried to run me down in her wheelchair.

    So I'm wondering if the same type of phenomenon happens with other types of dementia -- perhaps your husband not only appeared better because he was working hard to appear normal, but also, perhaps, that the stimulus of the situation for some reason helped him function better.
    • CommentAuthordivvi*
    • CommentTimeApr 9th 2008
    I dont know what it is about some particular persons who can trigger total recall in our AD spouses. in our case, its a longtime atty friend who was husbands best friend and when he calls even today hubby can talk to him on phone like nothing was wrong with him. laughs on cue and recalls even some cases etc when down memorylane with him. its only with his one friend though- and even calls him by his nickname afterwards -i always marvel at this because he has no clue who his own kids are anymore. divvi
    • CommentAuthorAnna
    • CommentTimeApr 9th 2008
    Of course some days and maybe even weeks are better than others. My friend calls me every morning. THis morning, DH answered the phone and had a brief conversation with her that seem to make sense. She said"he knew me". Well he knew she was the friend who called everyday, but he didn't know her name etc.. Also I notice that frequently people assist in making the conversations 'make sense". They kind of fill in the blanks when DH's conversation is off track.It happens frequently that friends say "well he really seems OK to me". Only those who live with AD on a aily basis can understand.
    • CommentAuthorfrand*
    • CommentTimeApr 9th 2008
    I really can't see that much difference when we are in new surroundings that include relatives or friends. Maybe it depends on what stage they are in. I THINK my DH is late 4 or early 5 stage. I have had relatives/friends say they didn't think he had AD back at the beginning, but I think that was denial on the part of those folks. Sometimes I'd say, 'well, do you know how to dial the telephone, know your address, know where you are?" etc. Once his daughter mentioned she thought he was ok and I told her I had to remind him who she was and that was the last time she brought that up.
    A few months ago our church had a pot-luck supper for our new minister. Several people commented to my sister (but not to me) that my wife looked perfectly normal. She was able to follow the conversations, and make appropriate comments at times. What they didn't know was that I had to keep reminding her of what we were doing and who was there. I have read that the more intelligent the person with AD the better they are at hiding it in public.
    • CommentAuthorSunshyne
    • CommentTimeApr 10th 2008
    Marsh, that's interesting. Do you happen to remember where you read that? My husband had an IQ waaaaaaayyyyyy up there. I swear, nobody knows he has a problem but me. He's even pretty good at faking in the clinical trial. He has had some training in psychology, and he says he "reads" the person who is testing him, to figure out what the correct response should be. They don't believe he could do that.
    I read somewhere on the internet that the higher the IQ, the faster that they go downhill. My husband had a high IQ as well, and he was diagnosed Feb 2007, because those "tests" that they gave him the year before he passed with flying colors! He was always good on tests!
    When our grown children and best friends visit (ususally for three to four days) he will appear normal, and only when they try to engage him in conversations that he can't answer "no," "yes," "fine," "good," etc. does he give himself away. He rarely can string three or four words together, and even then, it doesn't make sense. However, after they leave, he goes into a daze for three or four days. It's been four days since the last visit, and he's not yet regained his routine.
    I think pride has a lot to do with them trying to act normal (and make us feel like dirt for telling people that they have AD when it can't be seen) to other people. Only with us can they let go. It shows how very much they count on us.
    For a long, long time people would tell me 'how normal' DH was, didn't see any problem, etc. Then about 8 of us went from L.A. to S.F. for a couple of days for a family funeral. The deceased was his niece, someone he knew well from the time she was born. He sat quietly thru the service, but I don't think he had any idea that it was his niece. At the reception, he told me what a great party it was, that everyone was here, he just had a grand old time. He certainly behaved, but afterwards, after a couple of days, those family close to him came to me and said, "Now I see what you mean.' So he was doing all the correct social things, but when those close to him spent hours & days with him, they noticed he was not his normal self.
    • CommentTimeApr 10th 2008
    An awful lot of what our LOs do, isn't all that odd, if you only see bits of it. It is the totality. It is not knowing that you leave (cheap) outdoor furniture outside in the Spring and Summer. We see it all, and there are these constant little things that get said that throw us off. That is why it takes time to recognize what is going on. It is also why it is hard to figure out if something is really wrong in the early stages.
    • CommentAuthorfaith&hope
    • CommentTimeApr 10th 2008
    I can really understand the issue of LO presenting well in public, but being much different when alone with me. He had to go to a new doctor for his thyroid. He dressed well, presented his case - which is complex due to several serious medical issues - in a calm organized manner. I had notes ready to fill in when he couldn't remember, but I never needed to say anything. He had his notes in a chart on his lap and never looked at them. As he sat there impressing the doctor, I was telling myself that I am making all of his issues up and that I am going crazy. We went back 6 weeks later. My LO did not do the blood work the way the doctor wanted, did not change and add some medications, etc. My LO acted very surprised at some of the info that the doctor told him and my LO said he had no problems in that are - which wasn't so. The doctor kept looking at me like I was a bad mother. I wanted to tell him to LOOK AT HIS CHART AND NOTICE THE DIAGNOSIS OF DEMENTIA. I felt somewhat validated. I say that my LO presents well, but can't maintain. But everything that has been said on this board goes on in our lives on a daily basis. He looks better than I do.
    • CommentAuthorAnna
    • CommentTimeApr 10th 2008
    My DH also looks wonderfully well. I'm certain I'm ageing more quickly than he is, but why not? He has no responsibility, worries, concerns.
    • CommentAuthorbaltobob
    • CommentTimeApr 11th 2008
    My DW makes a very good impression unless she has to talk or follow directions. We just came back from dinner in a family restaraunt and I'm sure that the waitress had no idea that there was a problem ( unless she noticed that Mary ate nothing but her fries until I leaned over and cut up her fish for her.) Friends tell me that she " looked good" when they saw her in Church, at the mall, etc.

    What hurts me most about their reaction is that they have no idea what I live with day in and day out. Or, they may feel that by diminishing the severity of her condition, they are somehow being reassuring to me. The only reaction that I have is the feeling that no one appreciates what I am doing for her. ( If there's nothing wrong with her, then my life must be the same as theirs.) We all have a need to be appreciated and since taking care of our LO is our primary focus, we need someone to notice that things are not "normal."

    This is probably why I come back to this web site every day. When I read everyone's posts, I feel that there people out there who do understand what I am feeling because you are going through the same thing yourselves.
    Bob: I knew people whose LO's had AD before my DH, and they would tell me things, but I easily dismissed it. I just did not know, did not see it, did not understand. AD is so insidous, but I agree that few--beyond my children--had any inkling of what my life was like. And, they, of course, were not w/it 24/7. When asked, I often said 'I'm doing just fine' or 'DH is doing OK' because I could not bear to speak the truth about our lives. And, yes, I was confined to my life's being all about him, living in limbo. Given the same circumstances, if I had it to do all over again, I would do it all the same way. I just don't know that we have any other options.

    PS: Are you from Baltimore?
    • CommentAuthorbaltobob
    • CommentTimeApr 12th 2008
    Yes, born and bred. I live just south of Belair now. Our neurologist is at Hopkins and I have just started attending the FTD group at Alz headquarters in Timonium. This is a great group, by the way.

    We had a terrible period in November and December. Mary had a knee replacement and when she came home she deteriorated from her progressive aphasia into what must have been full blown FTD. She was opposiional, depressed and actually plotted ways to run away. I became depressed because I thought that it was all over. Around New Years, she snapped back into the wonderful, pleasant wife I had known and loved. So now when people ask how she's doing, I just tell them "fine" because in comparison, she is. But, of course, this in no way describes how she is really doing.

    It's great to just be able to tell others who also understand.