Total and absolute denial.

Discussion in 'I care for a person with dementia' started by Champers, May 15, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    Despite diagnosis and attending quite a few clinics, my mother is in total denial that there is anything wrong with her. When she did the initial memory assessment, she breezed out saying she had passed with flying colours and that there was clearly nothing wrong with her and that the consultant had said she was amazing for her age. I’ve always suspected that mum has always suffered from Narcissistic Personality Disorder so lying has always come naturally to her. Throughout her life, she has always made up stories where she was the hero and saved the day or that she was especially gifted or that she was always very popular and everyone looked to her for advice.

    She refused carers for a while, although I got around this by changing and shortening the times they attended. As mum has recently been prescribed Donepezil, I have arranged that they visit briefly to ensure she actually takes it. She wasn’t taking her blood pressure and thyroxine tablets either. She rang me and said she found it amusing that someone had to come and give her her pills - especially as she “never had to take any before” She’s been on medication for years!

    I know she doesn’t eat well - she’s lost loads of weight - as I’ve had to chuck out loads of food that I had delivered but she is adamant that she cooks for herself every day and allegedly goes shopping by herself every week. She hasn’t been able to go for nearly a year as she kept losing her bank cards and any cash she had so I know she’s been nowhere. I arranged for meals on wheels so at least she has the opportunity to eat something hot but she rang me today and told me that it’s a complete waste as she prepares everything she needs and “I don’t need the food as it’s not as though I’ve lost my marbles and I can go out anytime to Sainsbury’s” She’s told the volunteer delivering the meal that she won’t be requiring it anymore, although I’ve confirmed that this is not the case.

    Mum is clearly living in a total fantasy land on one hand but seems to be able to keep herself and her home clean and dresses appropriately. As with any sufferer, there’s no reasoning with her or logic to her statements but she often turns it on to me and accuses me of trying to make out that she’s stupid and that she resents my interferences as “I’m quite capable of looking after myself.”

    This is so wicked to admit, but I’ve thought about taking her to the supermarket, shadowing her and waiting at a discreet distance when she gets to the till to see if it actually dawns on her that she can’t cope.

    If I hadn’t have put all these resources in place, she would have lost her independence months ago and if I cancel meals on wheels, I do suspect she might just starve herself to death.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
  3. Beate

    Beate Registered User

    May 21, 2014
    That plan won't work. Even if she realises for a minute, she will have forgotten again ten minutes later. Trying to get a PWD to understand their situation is utterly futile and will only lead to frustration on both sides. I'm sorry, but you will not ever be able to convince her, and that's due to the nature of her illness affecting the brain.

    It would be better to put your energy into very discreetly and with a lot of love lies organising more support for her. A Day Centre for example would ensure she gets at least one hot meal a day.
  4. Champers

    Champers Registered User

    Jan 3, 2019

    Thank you SO much for this link - I can’t believe I’ve not seen it before. It makes so much sense. I clearly need to get into the mind set that there IS no logic and that the only person getting miserable and frustrated is me. I guess my only excuse is I have loads of historical emotional baggage with my mother. She has always been extremely contrary and almost sadistic in her taunting and mocking of any of my efforts to please her throughout my life. All this being coupled with her habitual lying and further compounded by the Alzheimer’s makes for a pretty explosive situation.

    It looks like it might be beneficial for me to practise the mantra of: Okay mum, that’s fine. And then do whatever is needed or appropriate anyway.

    Much appreciated Grannie G.
  5. Bod

    Bod Registered User

    Aug 30, 2013
    “I’m quite capable of looking after myself.”
    Hands up, how many of us have heard that statement.
    The difficult bit, is how to effectively provide accepted help.
    In my case, it was just doing what was necessary, despite the objections.
    A classic was his cooking, he could do a full roast dinner, all the trimmings, etc. So didn't need a lunch time call.
    I had to give written orders, that a lunch was to be cooked (Microwaved) for him. It would be his choice to eat or not.
    2nd day he ate, 2nd week he was waiting , table laid, at 12.15!
    Keep doing what your doing now, be prepared to step up further as required.

    PS Don't hold your breath waiting for her to change her mind.
  6. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    If you wait for a person with dementia to agree with you or see your point of view, you will wait forever. My mother-in-law could do everything for herself according to her although the reality was she could do little for herself. My mother-in-law used to say she didn't need carers etc I just ignored her and carried on with the care agency whether she liked it or not. Her needs outweighed what she wanted as far as I was concerned
  7. Whisperer

    Whisperer Registered User

    Mar 27, 2017
    Dear Champers

    In my Carers group I came across the phrase “Dementia does not do logic very well”. All the evidence will show the PWD cannot do something any more, but you are told it was done only today by them.

    Let go of the frustration it will only burn you. Luckily I live with my mum and gradually I have taken over the housework, meals, making appointments, medications, etc. I get some opposition at times but usually mum falls in with the change. “Nothing wrong with me” I am told. Mum sees or reads an article about Dementia and I am told “it must be dreadful for people suffering that illness”. I have learnt to shrug and smile inside. After all I can definitely agree with her in more ways than one......

    Always be careful here. A lady with the user name Canary on this site gave me an invaluable insight sometime ago. You could say she helped the penny drop for me and it might help you. Google the condition Anosognosia. Looks and feels very like denial but in reality something quite different. The PWD has lost the capacity to understand what is happening to them. Alternatively even if the individual does still retain that ability, then denial is a form of self defence.

    The result is the same but Anosognosia took the emotion away from the situation for me. Not wilful denial just a simple inability to recognise what has happened within the PWD. I could come to terms with my mum’s view of her condition when looked at that way. For that I will always be in debt to Canary.
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    Wise words and yes,thanks to @Canary. I hadn't heard of anosognosia either before this forum. Although mother in law clearly had all the signs.
  9. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Bless you @Whisperer and @Rosettastone57 - Im just glad i could help.

    Yup, @Champers anosognosia is the name of the game. My mum was an expert. She used to tell me that she kept herself as fit as a fiddle by running up and down the stairs all the time - when she was sat in her care home with her zimmer frame in front of her! Once I took her out to a garden centre in her wheelchair and she caught sight of her reflection in one of the floor to ceiling windows. She pointed to her own reflection and said "Oh look at that poor old lady in a wheelchair. Shoot me if I ever get to that stage!" She obviously had no idea that it was her, even though she was old and she was in a wheelchair even as she said it - she had no concept that she was at that stage.
    Another word for you - confabulation. This is where the brain is filling in the gaps in memory with false memories. It looks like lying or making up stories, but it isnt. The person is not aware that this is happening because to them the false memories seem like the real thing, so they are convinced that they really happened.

    It is so hard to get your head round what they must be thinking and how they can not know that reality is different, but they dont. You cant bring them back to reality, though, so you have to change how you deal with it - which must be really hard for you, given all the background
  10. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    My sister (after living with her FiL, who also had dementia, for a year or so before he died) pointed out to me, during a conversation about my OH, that 'what is going on in his head is his reality. It is what he believes is happening, you will never reason with it or change that opinion, so just roll with it and then do what needs to be done'.

    That pearl of wisdom changed my life and made dealing with the situation so much easier. Banging your head constantly against a brick wall is tiring and will drag you down even faster.

    I wish you well.
  11. jane.reynolds

    jane.reynolds New member

    Jul 6, 2018
  12. jane.reynolds

    jane.reynolds New member

    Jul 6, 2018
    My mums the same she completely is in denial that she has anything wrong with her. She is becoming aggressive towards me not physical but vocal. If she does not get the response she wants then she goes into a strop, she also tells other people that I am always shouting at her and don't help with anything, which is all lies as I do. She is able to take herself into town and to shop but like your mum my mum is always the hero and wins the day as she has been shopping. I have to remind her of her everyday activities, for example shes going out on Friday but has insisted all week its Thursday, she challenges everything I say a I am wrong. We recently had to put her blood pressure tables into a blister form as she was double dosing, but she still doing it on the blister packs and has no understanding how these work, of course every morning she takes 2 doses and shouts at me when I point it out and try again to explain. I am just wondering when do you get extra help in, she can wash and dress herself and put make up on etc..... so her cognitive skills are fairly good but day to day remembering is going down hill fast. To be honest it is very waring for the carer as I have to work full time and are in the process of buying a flat... and worried about when I move out.
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @jane.reynolds
    you can request that your mum's Local Authority Adult Services carry out an assessment of your mum's care needs at any time, if it's not considered that her needs are not considered such that a care package is to be suggested, they will say so (make sure they are aware of how your mum is on her worst day, don't play anything down) … and you can request a re-assessment when you think her needs have altered
    if your mum will be self-funding, you can organise home care visits on her behalf - here's a link to the main AS site's directory of local services
    and about paying for care
  14. Champers

    Champers Registered User

    Jan 3, 2019
    Yep Jane - spot on! What you are describing is so familiar. You could be describing my own mother to a T.

    I’ve just had an email from the caring company telling me she refused her medication on the 10th AND today! Because she’s recently been put on Donepezil, it’s vital she takes it regularly, so I’m doubly frustrated! I’ve requested that they ring me so I can talk her around if she won’t comply - which they haven’t done - so I feel let down by them too.
    I called her this evening and had a general chat about her medication, just in the course of conversation, and she laughed out loud and said, “When I go back to my proper doctor, he’ll tell you that I’ve never needed or taken any tablets in my life!” Ho hum.
    I appreciate all your posts about understanding and insight into this disease - they make so much sense. I took a deep breath and made a great effort to detach myself and try to view it from the outside. It’s a very good point that in mum’s world, everything IS real to her and she possibly thinks that it’s me that isn’t making sense.
  15. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Are you sure it's really denial as such?
    My mother's short term memory was badly affected very early on, so that not only could she not remember anything, but she couldn't remember that she couldn't remember anything, if that makes sense.
    She was told by her GP that she had Alzheimer's, but had forgotten by the time she got home 10 or 15 minutes later.
    This was genuine forgetting, as we knew from other instances, e.g.forgetting what someone had said to her just a minute previously on the phone. (And then very quickly forgetting that incident completely, when previously such a thing would have worried her a good deal.)

    We soon found that it was no use trying to convince her that there was anything wrong with her, when she 'knew' perfectly well that there wasn't, thank you very much.
    We just had to find ways to work around it, including the good old 'love lies'.
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    My husband had a period of refusing his diabetic medication. He was another who, pre dementia and diabetes never went to the doctor and disagreed with `tablets`.

    I told his GP who entered his refusal on his notes.

    One day my husband asked why he felt so ill. I told him it was because he was refusing medication and from then on we had no problem until swallowing became a problem.

    I suppose this was a lucky break. He wasn`t taking any Alzheimer`s medication. It was tried and had too many adverse side effects. Even so, sometimes we may be better choosing our battles because most of us have found battles with people with dementia are rarely successful.

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