Diagnoses wont sink in

Discussion in 'ARCHIVE FORUM: Support discussions' started by leigh, Apr 22, 2007.

  1. leigh

    leigh Registered User

    Oct 12, 2006
    11
    Essex
    Has anyone else experienced this and can you tell me what you think please?

    My mum was diagnosed with AZ earlier this year although her symptoms have been going on for over three years. Although she has seen consultants and had scans by the time the hospital appointment came which saw her being diagnosed it was already so far along that she literally forgets almost all things that happen in the short term.

    We tend to not mention her having AZ around her as she gets very cross and says "I havent got flaming Alzheimers, its just my age", the problem there is she is only 65 and the doctors have said this is premature. (I think that is why they took so long to diagnose). I only bring this up because of that BBC documentary last year "my life on a post-it note" about a woman similar in age to my mum who was living with AZ. She seemed to be quite "aware" that what was happening to her was due to AZ. Sometimes I wish my mum would understand this so it would stop her getting so frustrated and angry with herself when she gets confused. She says a lot "Why am I so stupid?".

    Anyone advice most appreciated.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,869
    Kent
    Hi Leigh.

    My husband knows he has Alzheimers, but he still thinks he is better, on good days.

    Your mum is either in denial, or too `feels` she doesn`t have it.

    I`m sure by reading all the posts, you will have realized that everyone is different, in the way they face diagnosis, in their reactions and with their symptoms.

    When my husband asks why is he confused, anxious, feeling dizzy, etc., I tell him it`s the Alzheimers. When he feels he has recovered, and says he is better, I tell him I hope so.

    We all have to find the best way of handling it we can, and this, I`m afraid is by trial and error.
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    Hi Leigh,

    My dad was diagnosed with mixed dementia in December last year, following a brain scan which revealed two quite major strokes (of which we were unaware) and some shrinkage of the brain indicative of AD.

    The consultant told my Mum and sister this with my Dad present (I wasn't able to be there) and my Dad appeared to accept this.

    Some weeks later I mentioned the strokes and he looked at me as though I was mad. 'I haven't had a stroke!' he said. I decided it was best if I didn't say 'oh and by the way you've got Alzheimers as well'

    He will not accept that there is anything wrong with him - it's us who have the problem. It would be so much easier if he accepted he had a problem and would work with us. The occupational therapist from the memory clinic rang on Friday (the first contact we have had from them) and my Dad answered the phone. When she told him who she was he gave her the rounds of the kitchen and when she rang me later at work she sounded a little shell shocked.

    It sounds as though your Mum does accept that she has a problem but won't accept that it is AD. I don't think that that matters so much and calling it 'memory problems' as many people do may be the way to go.

    I know I struggled to come to terms with the words 'Alzheimers Disease' when applied to my Dad. I can't imagine how difficult and scary it must be for sufferers to hear those words.

    We are still in the early stages of learning about this disease and I'm sure you will find lots of advice from more experienced TP'ers.

    Sue
     
  4. leigh

    leigh Registered User

    Oct 12, 2006
    11
    Essex
    Thank you Sue and Sylvia,

    I think I've accepted Mum is never going to accept that she has AZ. We have sort of worked out a way to talk without really mentioning it and when incidents occur due to her memory problems and she thinks its just her age, I tend to just agree to keep her from getting more stressed out.

    I was just curious to know if anyone else had seen this behaviour. It could be a blessing, in a lot of ways she is blissfully unaware there is anything wrong with her it only becomes an issue when things disappear around the house or she gets confused in conversation, we soon brush over it though. I find it strange how some patients are diagnosed quite quickly and others years and years of tests first. I've started doing my own research in December 2003 when I first noticed mum's short term memory was all over the place. It wasnt until February this year that the doctors finally diagnosed.

    I suspect if she was told back in 2003 that it was AZ it might have sunk in and when things occur now she can explain to herself, its not that she is stupid its the AZ. I'm sad that the disease was so far along that anything told to her now doesnt sink in so I shouldnt be surprised that she has completely forgotten her diagnoses. The important thing is we just make the best of all our times with her in the present moment.
     
  5. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi leigh,

    It sounds as if you have found the right approach to this in your Mum's case. When my Dad was diagnosed he was also past that point where it would have made sense for him to be told he had Alzheimers. I remember that Dad used to get frustrated when he couldn't think of a certain word for something and he would say "what's wrong with me?", but I know if we'd said "you have Alzheimers" he would not have comprehended what the word meant, so it was usually brushed aside, as you described, and the subject changed.

    When we used to take Dad for a hospital or doctors appointment he would ask Mum over and over again, "Why am I here?" and Mum would explain it's because he had memory problems, but of course ten minutes later he'd ask again, proving the point, but of course that was lost on him.
    Yes, most definitely. :) :(

    Best wishes, Hazel.
     
  6. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Leigh,
    You could have been describing my Mum, except for the age difference (she is 84). She too refused to believe she had Alzheimers, insisted she was not "batty" :eek: like the others in her Home and would get incredibly upset and cry and pull her own hair saying "Why am I so stupid?". Yet any explanation resulted in immediate denial. What we have found is that she is more accepting as time goes on. No longer cries each and every time she forgets things - sometimes is quite philosophical about it! Has never accepted the diagnosis but seems to tacitly accept she has "something" wrong.

    We try to do what you are doing with your Mum. We also try to be very matter-of-fact if she forgets or does something wrong and say things like "Don't worry. It's to be expected" (or waffle like that!!) and she copes much of the time.

    We are fortunate in that our Mum is 84 and therefore IS old! Easier for her to accept that her behaviour is due to her age than for your poor Mum who is still young.

    Good luck with this difficult situation. It sounds as if you are managing very well. Nell
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    My mother's slightly different in that she seems to find it comforting to be told, when she asks why she is as she is, that she has had a stroke (actually, more than one). Also, it helps when she's reminded that she's 89 - she seems to have got stuck at 60, and can't understand why she can't do what everyone else does. In response to being told her age, she normally says "well that's pretty old, no wonder I feel like this". She would refute any mention of dementia however, so we don't mention it!
     
  8. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi

    When Dad was first diagnosed, we tried to tell him. He would answer I can't even spell the word and that would be it.

    Mum was the problem, she would get very upset and say THERE IS NOTHING WRONG WITH HIM.

    Even now, Mum, although she has Vad herself and is still in denial for both of them, will become very verbally aggresive when challenged with the fact, that there is anything wrong with them and they need help

    I suppose it is fear. I can only imagine what I would be like, (terrified) if I couldn't keep control of my life

    Alfjess
     
  9. Gromit

    Gromit Registered User

    Apr 3, 2006
    187
    Edinburgh
    Denial is common

    I would agree with all the other comments. I first came on TP last year when we sort of knew something wasn't quite right with Dad. He was suffering short term memory problems but wouldn't go to the doctor and blamed it on old age (he was 69 then). He was very, very stubborn about it - and it caused quite a lot of upset.

    We ended up getting the doctor to visit Mum and dad at home under a false pretence of visiting Mum (Mum has had blood pressure problems) and whilst there the doctor checked out dad. Because the doctor told dad he needed further tests he seemed willing to listen to someone in authority. However, when the appointment came he didn't remember why he was going. So we had our work cut out I can tell you!

    It has been a long slog, but lots of persistence and patience has eventually paid off - Dad now admits he has memory problems - often jokes about it, and a couple of weeks ago he was diagnosed with Alzheimers and is now taking Reminyl.

    Dad also admitted he had Alzheimers last week - this is huge progress. However, it has taken me many conversations with him, whilst making sure I reassure him, and at last it has sunk in.

    I must have explained to him over a hundred times that he suffers short term memory loss due to the "little messengers" in his brain not delivering the messages properly. Plus we left out the leaflets we received from the memory clinic - and he has now read them several times over and over again (as he doesn't remember reading them).

    However, my circumstances aren't the same as everyone else and sometimes it is too late for persistence and patience to work. It doesn't always benefit the individual to know what is causing the problems - other than memory problems - however it does make it a bit easier for carers and loved ones if the person has some awareness of what the problem is - in part this helps cares and loved ones to deal with it I think.

    I am now working on trying to leave post it notes for Dad to use. But he is still being stubborn about this. I think its also a pride thing - having to rely on notes is seen as a sign of weakness or something - which for a proud man I can understand would be frustrating. So its back to the persistence and patience routine hopefully it won't take another 6 months or so for us to get this to work:eek: - but if it is - so be it.

    I found that Dad listened more to me if I talked about the disease in much more pratical terms and made sure that it certainly didn't mean he was going "loopy" (his words!) and that it is a physical condition of damage to the brain. Gosh I can't even count how many times I have had that conversation. Still do now:rolleyes: .

    Not sure if the above helps you in anyway other than to let you know that you are not on your own. TP is a great place to get help and advice. I'm no expert and can only tell you about my circumstances - but hopefully along with all the great advice from those with much more experience than I perhaps it will be of some help to you.:)

    Wishing you all the best.
    Alison
    x
     
  10. tassie devil

    tassie devil Registered User

    Aug 15, 2006
    15
    I have the same trouble with my Mum, she doesn't seem to accept the AZ, but when asked a question we just just the stubborn reply of 'I don't know, I don't remember things do I'. It's very sad when old friends turn up to see her (one had just moved back into the area) and she won't let them in as she doesn't remember them. It's good that she's not letting complete strangers in, but very sad when she can't remember old friends that she's not seen for a long time. I tend not to mention the AZ when we talk, I don't know if this is wrong or right but it makes our relationship easier. Her father was exacly the same and she always said 'shoot me if I get like that' now I think she's scared because she knows there's a problem, she's always been very stubborn and maybe it's just a case on her part of not admitting.

    Hope things go well
     
  11. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    My Dad just thinks he has "memory problems". We don't refer to it in any other way. He accepts that he has a bad memory - although he doesn't realise just how bad it is.

    He also gets confused and thinks things are true that aren't. We just accept that, and do not try to argue, because he really does believe them and becomes agressive. He "knows" he is right just as much as any of us "know" what day it is, where we live, etc.

    "I know what I'm doing!" "it's because everything has been changed round!" "There's nothing wrong with me!" - these are the stock phrases we hear over and again.

    Partly this is a defence mechanism of denial - it is easier to believe that everyone else is wrong, or that you are not doing daft things, than it is to accept reality. Because reality is admitting there is something very wrong with yourself. And partly it is because you really can't see that you are wrong.

    An example. The other day we got

    "can you come and help me, I can't seem to get these trousers on right"

    (Gently point out that he is trying to put a jumper on his legs with both legs down one sleeve)

    "I know what I'm doing! It's because YOU have ALTERED them!"
     
  12. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    its just my age

    my huby is 60 has been ill for years with ad
    but he always said and still does say its old age
    i dont play on the alz bit i agree with what he says i might be wrong

    but its my way of coping
    love bel x
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Nada, I agree. It must be terrifying to feel that your mind is going, and you cannot understand what is happening around you. Total loss of control of your life.

    I dread to think how I would react in the circumstances. Not well, I'm sure, and certainly not as well as my husband has.

    Bel, you're not wrong. You're saying whatever it takes to reassure your husband, and that's the best gift you can give him.

    Love,
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,869
    Kent
    Hazel, this is what`s happening to My husband.

    He is recognizing his loss of control, his muddled thoughts, his silly mistakes, his jumbled up ideas, his woolly brain, and truly understands he is losing his mind.

    He is terrified.
     

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