To tell or not to tell??

Discussion in 'ARCHIVE FORUM: Support discussions' started by JoJo, Sep 27, 2003.

  1. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    My dad - only 59 - has been recently diagnosed and I could seriously do with some advice. He has always been very active and the family think that knowing he has Alz. would be the worst possible thing for him. He has already attempted to take his life once (for other reasons) and is aware that his memory is decreasing. He knows only too well what this cruel disease is like as his aunt suffered from it and died this year. The only problem is we worry that the doctors won't take any notice of our views and tell him anyway. I love him to bits and we want him to enjoy his last years rather than know he is slowing fading away. So if anyone has any advice I would be grateful.

    Also we believe him to be in middle early stages - if that makes sense! How long can we expect him to live??

    Thanks.

    JoJo
     
  2. Libbyo

    Libbyo Registered User

    Sep 22, 2003
    4
    JoJo

    My Father has had this illness for the past 7 years. My Mother made the desision alone not to tell him what was wrong with him, just telling him that he had had a sort of stroke. I now believe that her desision was wrong. He is very frighten of the illness and cannot understand what is happening to him. I believe if he had been told long way back down the road he could have been able to cope better.

    This is not the answer to your question, because it is something that you as a family all need to decide together, I guess with medical help and support. I think there is no right or wrong or text book answer.

    Go with what you believe and live with it.

    Enjoy your Father.

    Libbyo xx
     
  3. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    JoJo

    Hi JoJo,

    everyone reaction is different and only you and your mother can be sure how your dad will react and indeed the benefits of telling him the full details of his condition.

    My father has had alzheimers for many years and my mother made the decision not to tell him. At first I was very uncomfortable with this as I hate having information held back from anyone. However, over the years it has worked out well as my dad will never really 'come to terms' with what he is feeling. He is obviously aware that there are problems but puts it down to bad memory and occassionaly he has mentioned dementia. For him knowing he has alzheimers would be very upsetting as he has known other family members who have had the illness. In his particular case it would just upset him and make things worse.

    Hope that helps
    Charlie
     
  4. DAVE/JOE

    DAVE/JOE Registered User

    Sep 1, 2003
    3
    WALES
    HI JO JO MY WIFE WAS DIAGNOSED WITH ALZHEIMERS 7 YEARS AGO AT THE AGE OF 50.I BELIEVE SHE HAD THE ILLNESS 18 MONTHS BEFORE DIAGNOSIS.I WAS GOING TO TELL MY WIFE OF THE ILLNESS THE SAME WEEKEND THAT SHE HAD COME OUT OF HOSPITAL BUT I HAD BEEN TOLD MY MOTHER HAD ONLY WEEKS TO LIVE.I WAS IN QUITE A STATE AND WAS PUTTING OFF TELLING MY WIFE FOR A WEEK OR TWO. SHE KEPT ASKING ME IF I HAD THE RESULTS AND I KEPT PUTTING IT OFF.BUT AFTER THREE WEEKS SHE ASKED ME IF SHE HAD ALZHEIMERS WHEN I TOLD HER SHE SAID HER FAITH WOULD GET HER THROUGH.I WAS SO RELIEVED AS I FELT I WAS NOT BEING HONEST WITH HER.WE HAVE BEEN TOGETHER FOR 37 YEARS.I AM SO PROUD OF THE WAY SHE HANDLED HER ILLNESS.WITH SO MUCH DIGNITY.MYMOTHER KNEW SHE ONLY HAD WEEKS TO LIVE AND WAS SO DIGNIFIED.MY WIFE IS NOW IN A NURSING HOME.I SEE HER EVERY DAY.SOMETIMES SHE APPEARS TO KNOW ME BUT SHE ALWAYS HAS A SMILE WHEN I GO IN TO SEE HER.I WAS SO GLAD THAT WE WERE ABLE TO TALK ABOUT HER WISHES BEFORE IT WAS TO LATE.
    DAVE NORTH WALES
     
  5. Fiona

    Fiona Registered User

    May 31, 2003
    5
    East Sussex
    Hi

    I know my mother knows BUT my dad, brother, sister etc. are all busy trying to explain it all away, even when she is now 'talking in tongues' on a weekly basis. Their problem of acceptance is causing my mum immense pain as she believes she is not trying hard enough to cope with life.

    I am keeping my mouth shut now because I love them all but do talk to them individually and use big scarey words like dementia!

    I will be relieved when we can let mum know it is not her fault even if we don't use the dementia word. I think we can say stuff like her epilepsy (late onset at 60) has caused TIAs and so her brain is not functioning as well as it should. Yes its a half truth but it would take the pressure off her to be 'normal' when she is not - the pain on her face when she realises she has been 'odd' and the strain she shows from appearing normal are devastating to me and wasting the relatively short time she has left.

    I don't want her to have dementia but if she's got it we should be learning how to make the best we can - not forcing mum to take the strain of both the illness and other people's negative reaction.

    Lets all remind everyone this is a physical thing, just like a broken leg, its just that being in the brain it causes odd behaviour.

    Fiona
     
  6. JoJo

    JoJo Registered User

    Sep 25, 2003
    38
    Shropshire
    Well the latest is that it has been taken out of hands. The doctors say they cannot treat him properly without him being aware and are insistent he knows.

    He is being told on Nov 18 and it will be a relief for the family not to have to pretend we don't know what's wrong.

    I hope it will be a relief for him as well because it must be a terrible time for him.

    BTW did anyone read the Alzheimer's sufferers story in the Mail on Sunday mag this week? It was very interesting and enlightening to hear life from a sufferer's point of view
     
  7. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Here here Fiona, and I think your family handled this in the way I would advise if ever i were asked. I have been asked, but professionally, am not able to give my personal thoughts.
    Hence the reason why i didnt reply to you Jojo when i first read your posting.
    Primarily, my job is to give information, I cannot give information about the progression of dementia, to someone who has not had a diagnosis of dementia.
    Information is a powerful tool, and even armed with the information, I have to be sure that the person really wants to hear this information.
    Personally, there are positves and negatives of informing the person with the illness, that they have the illness, and I firmly believe each diagnosis should be discussed in great detail between the professionals and the family.
    But then what right do professionals have to inform the next of kin, without informing the patient?
    Why should we expect our loved ones to take medication / tests etc when they dont know what they are for? Do we have the right to fib?
    All food for thought.

    I wish you the very best on the 18th Jojo, please stay in touch
     

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