My Dad doesnt want my mum to know she has been diagnosed!!!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by gillian69, Jun 4, 2007.

  1. gillian69

    gillian69 Registered User

    Sep 7, 2006

    My mum was diagnosed with Dementia possibly alzeihmers last year and has been prescribed Aricept. This drug has certainly stopped things getting any worse.
    We have given dad the pack to read to get help, when and if he needs it, but he seems worried as he does not want mum to know she has this condition!!!!
    My mum and dad have not made a will which in normal circumstances wouldn't worry us.
    But dad suffered a heart attack last year and my brother and sister had to look after mum, and me on the day i visited!! She was totally lost without dad, confused, thought she was being locked up at my sisters house, when she was just staying with her when dad was in hospital???
    We really want dad to put a power of attorney in place, but he has told my brother that he doesn't want to do this as it means mum will know what is wrong with her??
    She forgets everything that she has been told within a few hours.
    Can anyone advise us how we can help my dad and mum, dad seems afraid of mum knowing what her condition is, but everytime i talk to her she tells me she has a problem with her memory?

    Please advise and help us??

    Thanks for reading this

  2. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    Dear Gillian

    I sympathise with you as I am in a similar situation myself with parents who are both very poorly - my Mum has Alzheimer's and my dad has cancer. They are both very old (90 and 88).

    I can't stress enough the importance of setting up a power of attorney. Both my parents set up enduring powers of attorney quite a few years ago and when things took a turn for the worse last year, my brother and I (with our parent's knowledge and approval) exercised the powers of attorney. It doesn't necessarily mean that your Mum has to know exactly what is wrong with her. My Mum thinks her memory is just dodgy too, due to being old, and would be hugely distressed if she knew the truth and my father frankly is so poorly that he doesn't really understand what is going on now.

    Having said that, both of them are immensely relieved that my brother and I now handle their affairs for them, as they really don't want to be bothered with it all these days.

    The only thing that I'm not sure about is whether your Mum, having being diagnosed with dementia is able to set up a power of attorney now, but this is something you can check with a solicitor.

    Also, you will get some replies to your post from TP members who are far more knowledgeable than I, so have a good read!

    Best of luck! Keep posting so we know what is going on.

    Kind regards.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Gillian,

    It will be very difficult for your dad to tell your mum she has Alzheimers. It was quite a while before I could tell my husband, so I do understand.

    Try to put yourself in their position. I know your mum is aware of her memory problems, but is she ready yet to be told the truth, the most devastating news anyone could hear. I only got the courage to tell my husband when he was going through such a bad spell and he knew something was really wrong.

    Many people are given the news as a couple, by the consultant. Your dad must have asked that your mother shouldn`t be told. We were given the news as a couple, but my husband chose not to understand it.

    I understand your concerns for the health of both your parents, but if you are unable to persuade your dad, perhaps you should leave it awhile, until the time is right.

    The reason I say this is the fact your mother is taking Aricept. She either knows what she is taking and why, or chooses not to know. It might be as well to leave it to your parents, what they choose to do and how they wish to proceed.
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Dear Gillian

    It's difficult to speak to the "tell or not tell" issue. On the one hand I think not telling someone who is ill the diagnosis is more than a little high-handed, particularly if that person knows something is wrong: if it were me I think the stress of not knowing would make everything worse. On the other hand, even if your mother were told it probably wouldn't "stick". However regarding the EPA issue, I cannot say that I think your father's fears have any validity: there is absolutely no reason for her to be told of her diagnosis, particularly if they both do them at the same time. I would suggest that they make each other their attorney with you or another child as an alternate. It doesn't even need to be done at a solicitors - the forms can be dowloaded from the public guardianship website. However, perhaps a visit to a properly primed solicitor would be in order if for no other reason to get wills drawn up. However, if your parents have reached the age they have without drawing up wills, it's possible that there is something else going on. I'm afraid I do not understand why some people do not make a will, particularly nowadays with property prices skyrocketing. Some people may have more of an estate than they realise.

  5. gillian69

    gillian69 Registered User

    Sep 7, 2006
    i do understand


    Yes i do understand what you have said, but mum and dad were both there when they were told of her condition, but dad chose not to tell us!!
    It was only when dad was in hospital that we went to see mums doctor, when he told us what they had been told, so it seems he is trying to hide something that we all knew!
    I did tell my dad that we were aware of the condition and if he needed any help then please ask???
    I know how hard it is as i work for a charity dealing with welfare of mainly elderley people and i totally understand, which is why we have not said anything!
    My only concern is my dads health and this really worries me, that if god forbid something happens to my dad, what will happen to mum????
    We would not be able to cope????

    Thanks for listening

  6. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Hi Gillian,

    My Dad has AD and lives with my Mum. We have decided not to tell my Dad he has AD. He was present when the Consultant explained that the scan revealed strokes and Vascular Dementia was likely as well as shrinkage of the brain indicative of AD. My Dad appears not to remember any of this information. Not sure if this is his 'selective' memory at work.

    My personal view is that it is not necessary to give the sufferer a label for their illness. Your Mum knows that she has memory problems and hopefully this will mean that she is open to treatment. Telling her that she has AD may come as a shock to her and may frighten her even more. Other people may have different views and every sufferer is different, but with my Dad I don't think that telling him he had AD or VaD would be helpful to him.

    We have told friends and this is a part of us coming to terms with the diagnosis. Maybe your Dad is struggling to come to terms with the diagnosis and may be just as frightened.

    As far as wills and enduring power of attorney (EPA), I know that many people find it helpful to deal with this together, that is that both husband and wife make wills. If your Dad has had health problems could it be explained to your Mum that they should heed the warning and make wills sooner rather than later, and while they're at it why not do an EPA before the law changes in October?

    You might even suggest that you do a will at the same time. Lots of young people make wills and this may make your Mum feel less like she is the one being 'targeted'. In any event you should not delay in case your Mum should deteriorate.

    Having (just) read Fiona's post, I can confirm that a diagnosis of AD is not an automatic bar to doing either a will or an EPA.

    I am so pleased for you that Aricept is working for your Mum.

  7. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    To tell or not to tell

    I used to be very pro 'telling people all the facts' but I am now a whole lot more circumspect, simply as a kindness.

    It came out, in a meeting with professionals, whilst my mum was also present, that she had been diagnosed with Alzheimers. It was not the professionals who let the cat out of the bag, it was me. I'm not sure what I was thinking of except, that I assumed my mother could not hear me as she has very poor hearing. She got very annoyed and said " Who's got Alzheimers? I haven't!' And she vehemently denied any problem. That being the case, I never mentioned the word again. If she got distressed at any time with her memory, I would reassure her and tell her that her memory was no worse than anyone else's of her age, ( true in the surroundings at that time) and that it was often better than mine. ( Also occasionally true) I could only think that telling her the whole bitter truth about Alzheimers over and over again was not a kindness, would worry and upset her and was not helpful.
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    There is some benefit from knowing the diagnosis, and that is to find a reason for challenging behaviour.
    Believe it or not, my husband gets some comfort from being told it`s not his fault, it`s because he has Alzheimers.
  9. Helena

    Helena Registered User

    May 24, 2006
    Sorry but I have to totally disagree with witholding the diagnosis from the patient

    The doctors buried their heads in the sand with my Mother and did and said nothing despite me asking them to

    If she had been told the truth after her 1st Mini strioke 8 years ago she would have faced reality and made decisions which became impossible later

    So much of the last few years and her last months could have been infinitely easier for all and if i had the money i would sue the hospital both for failure to diagnose and negligence
  10. gillian69

    gillian69 Registered User

    Sep 7, 2006
    i understand

    Thanks i do totally understand that, and i have experienced the tempers, nastiness, even when i'm trying to help.
    I seriously do, but trying to get answers so i can explian, tell my brother and sister. I have just been told that my sister in law beleives my dad needs help at home and they are going to ring the helpline??
    Yes i am aware help is needed, but what can i do i am 200 miles away, if i was there, i would be there as often as needed!
    Yes this makes me feel guilty, what can i do i can??
    i cant move with my husband and two children 16 still at school and son 3rd year apprentice!!!!!:(

    What can i do, it seems that my brother has now realised that there is a problem, why dont they help??

    Sorry moaning now, but i do feel guily for not being ther!!

    Thanks for listening

  11. CraigC

    CraigC Registered User

    Mar 21, 2003
    Hi Gillian,

    Mum decided not to tell dad and I was dead against this approach at first. But in the long run she was right and it helped dad deal with dementia in his own way. He kept a kind of dignity right through and had a fuller life for it rather then worrying himself. He knew he had some sort of dementia, but knowing he had alzheimers would have frightened him as he knew friends/relatives who had died from alzheimers.

    What is clear to me after following many peoples stories on this forum, is that there is no right way to approach telling your loved one that they have alzheimers. No golden rules, pros/cons. What works for some partners will not work for others. But I really feel strongly that my mother took the right approach for dad and it paid dividends. We've had to pick up a lot of pieces practically, but he had extended time without the worry of knowing he had alzheimers.

    I would also highly recommend setting up and EPA before it is too late. Dad understood the importance and was happy to do it as mum set one up for herself at the same time.

    Kind Regards
  12. j.j

    j.j Registered User

    Jan 8, 2007
    hi our mam was diagnosed six years ago and we decided as a family not to mention alzheimers to her, we asked doctors and health professionals to do likewise this was respected and i firmly beleive this was the right decision for us. we knew our mam better than anyone and talking about her poor memory and not alzheimers saved her from heaps of distress that would of only served to make her worse.
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Whether or not the person is told is a call that can only be made in the knowledge of the circumstances, and of the person's ability both to understand, and to cope with the diagnosis and its implications.

    As with all these things, there is no blanket right or wrong.

    Whichever decision - to tell or not to tell - is made, any belief of what might or might not have happened as a result, can only be supposition.
    That's not really the case. Any person, whether they are well or not, can create an EPA. There doesn't have to be a reason. When i made my last Will, the solicitor wanted me also to make an EPA - it is standard advice these days.

    Having a signed EPA registered by the Court of Protection, that is more of a step, but still would not require the subject to be told of a diagnosis of dementia.

    ... just my opinion
  14. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    Couldn't agree more. In my mum's case, whereas it is true that she would probably have forgotten the diagnosis once told it, there didn't seem to be any point in rubbing it in for her. She was/is a frail old lady in a care home and I wasn't/am not always around to pick up the pieces for her if she gets distressed. She didn't go 'undiagnosed and untreated', she has had everything that I can possibly access for her. I just made the judgement that there was little for her to gain from being given a frightening label, because the passing reference to it had outraged her so much.
    I'm only talking from my own experience. We're all groping around trying to find the best way forward for our loved ones, and I can see why others may take a different approach, especially if they are caring at first hand 24/7 for someone. We all act in the best faith.
  15. Taffy

    Taffy Registered User

    Apr 15, 2007
    Seven years ago when mum's GP referred her off to a geriatrician because of dads concerns, mum never questioned the doctor, didn't ask why she was going to see a specialist, I sat there with mum and couldn't believe she didn't query anything when it was time to leave she smiled and thanked him and never mentioned the visit. When mum seen the geriatrician the same again, she realizes from time to time that her memory doesn't serve her well and she just puts it down to the whiteants setting in.
  16. Nell

    Nell Registered User

    Aug 9, 2005

    Yes, this is the best way in my opinion. Your Mum doesn't have to know anything about the POA. You can simply say to your Dad that you (or another sibling) would like to be able to help with family matters but you cannot do so without POA (or EPA). Perhaps you could mention when he was sick in hospital and your Mum was unable to manage on her own - suggesting that if one or more of you had POA you would not need to bother your Mum if he gets ill again at any time.

    My husband and I have POA for each other - he was deperately ill a few years ago (fine now, thank goodness) but we realised then we needed POA.

    I also agree with Jennifer that wills are very important but perhaps your parents do not have that belief. If you could persuade them to do these too it would be a good idea.

    This is such a difficult time for you. My Dad flatly refused to believe my Mum had AD and even now, my Mum doesn't really "know" she has it! She shies away from the diagnosis and we don't make her face it.

    I had to laugh at Taffy saying her Mum thinks the white ants have got at her memory - I think Mum would probably say the same!! :D

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