1. France-Lise

    France-Lise New member

    May 30, 2019
    2
    My sister, a 79 year old widow with no children, has been diagnosed with Alzheimer last November. She has been in denial ever since. I would like to know how long this phase is going to last and what is the best way for people around her to cope with it . When I stayed with her for a month last December I found it very stressful. I will soon be with her in the summer and would like to know how to help her with this problem.
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,336
    East of England
    My husband was told the diagnosis at the same age. He nodded and said yes, managed to tell his sisters and then promptly went into denial that there was anything wrong with him at all. I am not aware that once the disease has taken hold that a person can go on to develop insight or understanding of the disease. In some ways this is a blessing for some, not all, sufferers who are protected from the full knowledge but it is torture for those of us around the person who cannot come to terms with this. It has taken me a long time to accept that this is how it is and to stop trying to make any sort of rational conversation about the condition with him. It does mean that we live in different worlds and this is heartbreaking but unavoidable. Learning to live with it enabled me to do just that, live with it, but it is stressful. I am sure others with more experience will give you some links to helpful information but this is my experience and now I try to help friends and relatives understand too.
     
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,825
    Male
    Bristol
    Hullo and welcome to the forums France-Lise. Sadly denial is a common reaction to dementia and my partner who has vascular dementia is actually harder to cope with when the realisation does come to her briefly as she gets upset.
    There are tips on communicating better with people who have dementia, hopefully they can give some ideas and guidance https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710.
    If you need help and support locally then put your postcode or town into the box at https://www.alzheimers.org.uk/find-support-near-you.
    You will find good support and advice here, so keep posting and best wishes.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    My mum was absolutely convinced that there was nothing wrong with her and got very annoyed if I tried to suggest otherwise. Once they lose insight into their own condition Im afraid that they dont get it back.

    I see that @nae sporran has given a link to Compassionate Communication, which is the best way to deal with it.
     
  5. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    427
    Female
    High Peak
    #5 Jaded'n'faded, May 31, 2019
    Last edited: May 31, 2019
    I once said to my GP 'I think I am going mad.' This was during peri-menopause and I was having terrible trouble with my memory, finding the right words for things, etc. I even started making basic spelling/grammatical errors which worried me a lot but didn't seem important to the GP! Fortunately, HRT has sorted me out...

    But what the GP said was, 'If you were going mad, you wouldn't be here telling me about it because you wouldn't be aware of it.'

    And so it seems with dementia. Denial is much more likely than insight/acceptance unfortunately. Your sister will probably never accept the diagnosis and will probably get angry if you try to convince her. My mum has said, 'Yes, I know I have dementia.... but it doesn't affect me!'

    Be prepared to enter the wonderful world of 'dementia logic'.
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    537
    Male
    North West
    The worse bit of denial for mum was the loss of her driving licence, she didn't stop ranting about for a few years.
     
  7. Lawson58

    Lawson58 Registered User

    It is almost five years since my husband was diagnosed with Alzheimer's and in that time I think he has acknowledged that he has the condition only four times.

    You are not going to achieve anything by trying to talk to your aunt about it or trying to convince her of her situation but will only raise your own stress levels.

    I simply never broach the subject with my husband but just work around it. His geriatrician told him that he had Alzheimer's and I notice that he talks to him about his progress in a positive way but never uses the word Alzheimer's with him. There obviously is a part of my husband that 'knows' why he goes to see the geriatrician but he never owns it.
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,793
    Female
    Scotland
    My husband has never disputed that he has Alzheimer's but is not capable of any reasoned discussion about it. Could there be such a thing anyway! If he could rationalise he wouldn't have Alzheimer's. Oh dearie me.
     
  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,093
    Toronto, Canada
    We simply could not use the 'A' word around my mother. She would reluctantly admit that 'her memory wasn't what it used to be'.
     
  10. familycarer2019

    familycarer2019 New member

    May 31, 2019
    2
    I found it best not to keep telling my loved one because they became very upset. 4 years on in a lucid moment I explain that it is the Alzheimers causing the confusion experienced and that I understand how its making them feel eg when you wake up you don't know what you are supposed to do - one of many things and as its a lucid moment I get a meaningful reply "yes that's right" and then Ill tell her ill keep her safe
     
  11. France-Lise

    France-Lise New member

    May 30, 2019
    2
    Thank you for your reply. You mention that you live in a different world from your husband's. It's exactly how I feel too with my sister. I never mention the word Alzheimer with her but I noticed that the geriatric practitioner did it. I thought that maybe denial would be a phase and forgotten after a while! She did not want me and my husband to stay with her this summer so we will be 20 miles away. We can go and visit her often. Keep the good work!
     
  12. Super sixty

    Super sixty Registered User

    Aug 20, 2016
    3
    Our mother has been in denial since being diagnosed over 4 years ago, we say it's her little memory problem, trying to explain doesn't help, so it's better to go along with her that it's just old age, she's 87, until she says she's not old... Take a deep breath. Alzheimer's is cruel.....
     
  13. Trekgirl

    Trekgirl New member

    Jun 22, 2019
    2
    Hi I agree with so many of the comments My dad knows he has some memory loss He went ballistic when he read the word dementia on a letter the social worker wrote about him. Im sure that at the age of 82 there is a generational gap in understanding the word. I think how I woukd react in my current age of 61 if someone said that I had it I understand so much more abiut it now and would be able to understand why I didnt but its still a label with connotations of incompetent idiot stupid etc etc which for people like my father who has prided himself on his brain capacity is virtually impossible to come to terms with
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,271
    Female
    South coast
    Hi @Trekgirl and welcome to DTP
    Often it isnt just the understanding of the word and what it means that is the problem - often people with dementia lose insight into their own condition and are unable to see their own problems (its called anosognosia), so they think that there is nothing wrong with them. Usually people will accept that they are having problems with their memory and sometimes people will accept that they have the condition, but dont think that it has affected them and sometimes people have a vague sense that Something Is Not Right, but blame old age, or their spouse/children/some other person.
     
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,952
    Suffolk
    OH just hated the word dementia, but coped with memory loss. He knew, and accepted there was something wrong and didn’t blame anybody else. I think, as trekgirl suggested, it was a generational thing. The word demented meant something different then ( he would be 86 if still alive, 82 when he died).
     
  16. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,293
    Female
    South of the Border
    Anasognosia is when part of the brain that is working, takes over from part that is damaged, and tells the person concerned that there is actually nothing wrong - my OH has this. No amount of explaining will change this, it is not a phase, it is a fact. I have made myself very unhappy trying to get OH to understand there is something wrong, and it just is not worth the effort and upset.

    The PWD will go through the journey and all we can do is make their lives safe and as happy as possible - but we will not change what has happened in their brains and make them understand what they are no longer capable of understanding...
     
  17. Trekgirl

    Trekgirl New member

    Jun 22, 2019
    2
    Hi yes thanks for explaining about anosognosia I hadnt heard of that and it helps a bit to know its an actual condition and applicable to many and yes he blames it on old age and going to France lol its a long story !
     

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