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    • CommentAuthorDilly
    • CommentTimeMay 3rd 2008
     
    My DH has aphasia coupled with EOAD or Frontotemporal demential - they don't know yet or maybe ALS - he's being tested for that on Tuesday. Anyway, due to his inability to speak more than a word or two (aphasia), it's always a challenge to figure out what he needs or wants. Today was one of those days. Very restless and kept saying 'gas'. I told him I didn't need any as I filled up yesterday. Gas, gas - no dear - don't need any. Gas - gas. Finally, I took him out so he could 'point' to the direction he wanted to go. First to Cumberland - in and out - didn't get anything. Next to Stewarts - in and out - didn't get anything. Next to Hannaford's - I waited in the car - and waited and waited and waited. Got worried so I went in and he couldn't get the card to work to pay for groceries so I did that and then yes, you guessed it - yea yea yea - pointed to Stewarts - I said no, you were there and didn't get anything - yea yea yea - so I stop and in he goes and comes out empty handed. We head for home - he starts pointing and saying 'yea, yea, yea'. I said no, too tired - we're going home. So here I am. yea yea yea
  1.  
    Dilly-I know where you're coming from. My DH had his drivers' license pulled at my request. He got a form in the mail allowing him to challenge this. He claimed he called and knew where he had to go to get it back. I allowed him to direct me to drive all over our city before I finally told him I had to go to work. He was furious-but soon forgot. If there is anything good about dementia is that there are no such things as leftovers (they can't remember). Don't you sometimes wonder which of you has the problem?
    • CommentAuthorDilly
    • CommentTimeMay 3rd 2008
     
    Yes bluedaze, I thought today was the day I would have to take a tranquillizer - but I may be through the worse (I hope). My DH doesn't seem to 'forget' when he gets focused on something. And of course he can't tell me what it is. SOmetimes he gives me a pad and a paper and wants me to write down what he wants. If I only knew. All he says clearly is yea, yea, yea and points. He is really a sweetheart but it's making me C R A Z Y !!!!!
    • CommentAuthorAdmin
    • CommentTimeMay 4th 2008
     
    Dilly,

    Just a suggestion. I don't know if it will work or not, but it's what we used in therapy with patients who were non-verbal. A simple communication board with pictures of everyday common items on it. The person could point to what they wanted. I'm going to check to see if there are any sites that offer downloads to non-professionals. Not sure - haven't worked with the communication boards in quite a few years, but I'll check into it.

    joang
    • CommentAuthorDilly
    • CommentTimeMay 4th 2008
     
    Thanks Joang, he has (had) one when he worked with the speech therapist last year but put it behind his dresser and never tried to use it. I think I'll see if I can find it and if he'll try.
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      CommentAuthorStarling*
    • CommentTimeMay 4th 2008
     
    Dilly, my husband also did speech therapy, actually before we knew what was wrong with him. And he also wouldn't use any of the strategies she tried to teach him. I think refusing to use strategies, or just not remembering them, is also part of the disease.
    • CommentAuthorDilly
    • CommentTimeMay 5th 2008
     
    I agree Starling - sometimes he acts like he comprehends and I get deceived into thinking he's doing better than he is and then other days he's so agitated and compulsive I think he doesn't understand anything. He just says yea, yea, yea and points. God Bless Him - I'm not sure I'm strong enough to battle this. Week-ends are so very long because I can't pretend like I can during the work week. I don't want to pretend, I want things to be ok - but as we all know, they're not. I thought the Spring would get him excited about the yard work that he's always loved but so far - just 50 50. We go to Maine in June for a vac - I'm hoping it can really be a vac and not just frustration for both of us.
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      CommentAuthorStarling*
    • CommentTimeMay 5th 2008
     
    I've totally given up on traveling. We used to do the Saratoga Jazz Festival every year with our daughter's family. Not only don't I trust either one of us to do the drive from here to there. I don't think he could handle the chaos of two long days in the park. It is basically one big picnic all day with music, and then a settling down in the evening for the main concerts.

    My daughter and I talked and decided that we couldn't do that again.
    • CommentAuthorTessa
    • CommentTimeMay 5th 2008
     
    Sometimes I read posts and find myself just nodding in agreement. In fact, I often find myself nodding in agreement. Like you Dilly , I had high hopes for the Spring and perhaps his renewed love of the outdoors. But so far, I have had to use so much energy to get him to do anything. A few little tasks and he says he is tired and goes in to sleep for hours. Now,its Monday and I am at work. At work, it is like pretending. Almost like I have normal life.

    Spring has actually brought me a renewed sadness. I sat in my yard yesterday trying to find some joy, but as I listened to the birds and the sound of the stream near by ... I just kept thinking about how things will never be the same.... We always enjoyed small pleasures , it didn't take alot to make us happy, no exotic trips or adventures .... just working together in the yard or playing with the dogs....

    Sorry guys, really feeling sad today...

    Starling, although my husbands speech has not been severely effected I am curious, at the time your husband was seeing a speech therapist, what diagnosis did he have. I'm curious because other than seeing a neurologist for about 15 mins. every three months no other referrals have been made for us. We did go to Duke early on for diagnosis but my husband did not want to return for Support group ( the only suggestion they made) I sometimes worry that I am not being aggressive enough with treatment options.
    • CommentAuthorfrand*
    • CommentTimeMay 5th 2008
     
    Laurie, I don't know if you are close to a research hospital, but I am so glad we are participating in that. We drove over 100 miles to get to Oregon Health Services Hospital in Portland, but it was where we got a diagnosis after going to a local neurologist who didn't discover a problem. We have participated in a few research projects, but now we just go once a year. However, in the beginning they did an MRI, blood work, spinal puncture (is that what that is called?). Because of our current lifestyle he is only tracked through the Alzheimer's and Aging Institute on an annual basis. There is no cost for any of this. The annual appointment includes a two hour exam with a psychiatrist. Last August was when PD was added to the mix and another prescription for that. We have met caring, brilliant doctors who would like nothing more than finding a cure for AD. You can look on the ALZ site to find these research facilities. Good luck!
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      CommentAuthorStarling*
    • CommentTimeMay 5th 2008
     
    Laurie, I wrote you a very long answer, and then hit the wrong button and it went off into space.

    But the short answer is that he went into therapy FIRST and it was the therapist, at an excellent therapy and rehab hospital that is famous for miracles with stroke victims, who recognized that something other than a little stroke was what was going on.

    My husband died 3 or 4 times on the day he got his pacemaker in December 2003, so thinking mini-strokes was reasonable at first. He was also VERY, VERY good at hiding what was really going on. He was probably at stage 4 last year when he was diagnosed and it is a lot harder to hide at stage 4 than it is at stage 3. We were still living almost normally at that point except he had begun to isolate the two of us from social events.
    • CommentAuthorSunshyne
    • CommentTimeMay 7th 2008
     
    Starling, I've lost more long responses ... take too long to compose it, and you're timed out even though it doesn't show. So what I do now -- unless it's going to be really short, like this one (famous last words) is compose in a word processing document. Then, when I'm happy with what I've got, I copy all and paste here. Even if I've timed out and it goes off into space, I've still got the word processing document, so I can sign in again and copy-and-paste.
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      CommentAuthorStarling*
    • CommentTimeMay 7th 2008
     
    That is a good idea. The funny thing is that I've never timed out here, although it has happened other places. The weirdest was a document I was putting together a list of books at my local library's site. It actually happened twice before I realized that I had lost everything I had tried to put together.