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  1. #1
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    Not talking about the diagnosis seems to be the easiest way to 'stay positive'

    When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

    Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.

  2. #2
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    Quote Originally Posted by northumbrian_k View Post
    When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

    Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.
    My sister too has never wanted us to use the word Dementia even though she knows that is what she has, she, and we, call it extreme stress. And it is not really a problem, however now she is quite aware that she is having more difficulties especially with language. Today she told me that she knew she had this 'Ding, Ding, Ding' and was it going to mean that she would go too soon and she asked me how much worse she would get and would I be there for her. I could only tell her that today she was finding it difficult and tomorrow could be a better day, being positive really seems to help her. And of course I told her I will always be here for her as long as possible. She is 10 years younger than me. We can only do our best and find our way through this and I think you are doing wonderfully and we all know it is not easy.

  3. #3
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    Quote Originally Posted by northumbrian_k View Post
    When Alex was diagnosed with Alzheimer's in May 2016 we were given a wadge of documents which told us all about the disease and how to live with it by taking a positive attitude. She refused to read any of it as she said it would depress her. If asked today she would say both that she was bound to get the disease because it 'is in the family' and also that it is untrue as she has never spoken to a doctor about her memory and other problems and has never been diagnosed. She has never had a positive attitude to life in general so to expect her to develop one now that she has dementia seems unrealistic. I have tried to tell her (when asked) that some of the difficulties that she acknowledges are because she has a disease but all that achieves is to prompt her to ask me how long she has left to live because of her heart condition!

    Not talking about the diagnosis seems by far the best way to deal with it as no good comes from trying to talk rationally when the ability to be rational is gone. This is not to shy away from or deny the fact that Alex's dementia can only worsen over time. I understand that and sometimes it seems that she does too. But by trying to create the most peaceful and relaxed atmosphere possible - including not talking about the disease - I at least have the opportunity to try to match up to the 'stay positive' approach. It is not an easy thing to do.
    My Mum has vascular dementia and has never acknowledged it and it's never been spoken about by name.

    When she first showed symptoms Dad was his usual ex-army no-nonsense self and would be blunt if Mum said or did something bizarre, "For Christ's sake, don't do that, you must have bl**dy dementia", which Mum would shout back at and deny.

    If my Mum had acknowledged it and we could have been openly talking about it, sometimes I feel we'd be in an easier situation now. We have to skirt around it and just treat the falls, toileting accidents, magpie-like hoarding as everyday events which are quickly dealt with and then forgotten. Medical people we meet are pre-warned about Mum's condition and her abject terror of talking about it. It's the very large elephant in the room.

    On the flip side, it's untreatable, so talking about it wouldn't help at all. Emotionally Mum is now like a baby / toddler so that's the most useful thing to guide us. If she's too hot, too cold, has a wet nappy, is hungry, thirsty, etc., she gets upset and you have to go through a process of elimination to pacify her.

    I do allude to memory problems that I think she'll cope with. "Don't fret, I think it's just your memory playing tricks on you, happens to us all when we get older. You're doing well, I'll probably be as mad as a box of frogs at your age. Haha!" A quick chuckle together and we're off until the next episode.

    It depends on the sufferer's personality before they got dementia. Mum was always the quiet type who would prefer to bury her hand in the sand rather than address things.

    Dad has had three consultants confirm his Parkinsons, in writing, and he takes pills for it, and sees a Parkinsons nurse every 3 months, but he still believes he hasn't got it. So oneness hasn't helped him at all!!!

    All the best,

    Moog x

  4. #4
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    Coping with diagnosis

    Hi, my husband has found that talking about his diagnosis is what has helped him, when he was diagnosed he became very depressed and suicidal, but then decided to make the most of life, and is passionate about challenging people's ignorance about dementia particularly young people with the diagnosis he was 54 when he was diagnosed . He finds it helps meeting other people with the diagnosis and also working with the Alzheimers society to make life better for people living with the illness, he says regularly he feels that it is accepting his diagnosis and telling people about it is what has made him able to lead a good life.

  5. #5
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    Quote Originally Posted by Susisuster View Post
    Hi, my husband has found that talking about his diagnosis is what has helped him, when he was diagnosed he became very depressed and suicidal, but then decided to make the most of life, and is passionate about challenging people's ignorance about dementia particularly young people with the diagnosis he was 54 when he was diagnosed . He finds it helps meeting other people with the diagnosis and also working with the Alzheimers society to make life better for people living with the illness, he says regularly he feels that it is accepting his diagnosis and telling people about it is what has made him able to lead a good life.
    That is really wonderful that your husband can do this. I think the more it is discussed and especially with people that are living with it, then the more people will realise that more research needs to be done to eliminate this dreadful disease.

  6. #6
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    When I was still working I had a role representing my employer at meetings of the North East Dementia Alliance. There was a chap who attended the meetings with his wife and he had Lewy Bodies dementia. Not only had he recognised and accepted his diagnosis he became a role model due to his positive attitude and the insight that he brought to the meetings. I had hoped to continue my work with NEDA post-retirement - knowing already that my wife was showing signs of dementia - but my wife's way of coping with her disease has not allowed that to happen. Dementia takes many forms and I have learned that one cannot plan too much as things can be different from one minute to the next.

  7. #7
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    To be perfectly honest, if any of us who have lived with it, and seen it only get worse and worse, which of us would 'feel positive' about a diagnosis for ourselves? Especially in the very early stages, when we would still understand what it was going to mean?
    I'm very sure I wouldn't!

    My mother apparently accepted the diagnosis from her GP, but had forgotten by the time she got home maybe 15 minutes later. We did gently remind her once or twice, but having realised that it only made her angry or upset, when she was going to forget so soon anyway, we saw absolutely no point in persisting.

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