The Deviousness of Dementia

Discussion in 'I care for a person with dementia' started by charlie10, Nov 21, 2019.

  1. charlie10

    charlie10 Registered User

    Dec 20, 2018
    375
    https://www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia


    not quite sure where to put this, but it made me think a lot .....my BiL is struggling to not contradict his dad when he says something that is patently incorrect/made up. I've sent him Compassionate Communication but he can't let his dad have the last word, so I've been looking for something to help him understand the futility of arguing, and about picking battles. I dont think this is 'scientific' (needs to be very short and easy to understand too) enough to convince him, but it certainly gave me pause for thought......gave me some insight into possibly why he is so in and out of Denial mode with his dad. 'sigh' why are humans so complex :rolleyes:o_O
     
  2. Lirene

    Lirene Registered User

    Sep 15, 2019
    128
    This article is absolutely marvellous, what insight into the horrendous world of dementia.
    Many thanks Charlie 10 for the link, any idea where I can obtain a hard copy of the article or book ?
    Are you able to send a copy of the article to our Prime Minister, Speaker of the House et al.
     
  3. charlie10

    charlie10 Registered User

    Dec 20, 2018
    375
    Hi Lirene....I am not familiar with dementia as a day to day problem, as both my family members with it are in England, and Im in NZ.....most of my impressions are from vague phone calls and what I read of everyone else's experiences on TP!

    I'm afraid I don't know anything more of the article....Ive googled her but this may be the only thing she's had published (2014) She is mentioned in this link https://thepsychologist.bps.org.uk/improving-lives-those-affected-dementia which is about Dementia Action week earlier this year.

    I think I need to have another read of it....I think it's got layers, and I've only discovered the top one so far
     
  4. Lirene

    Lirene Registered User

    Sep 15, 2019
    128
    Thank you for the information. Sorry I didn’t know you were at the other side of the world! I’ve never been, but I understand NZ is a wonderful place to live.
    I will see if I can get further information over here in the UK. The article gives a wonderful understanding of dementia from both sides and I will pass it to the powers that be in the UK. Kind regards.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,773
    Female
    South coast
    This is wonderful. So poignant it made me well up
    It may not be scientific, but it is spot on, all the way through.
     
  6. Pete1

    Pete1 Registered User

    Jul 16, 2019
    227
    Male
    It is hard to read as it is very poignant....the phrase used 'hope is the enemy' is so very true.
     
  7. Lilly8

    Lilly8 New member

    Nov 22, 2019
    2
    A poignant insightful read... very hard to read as it just makes you realise the devastation caused by dementia to both the person affected and their care givers
     
  8. charlie10

    charlie10 Registered User

    Dec 20, 2018
    375
    Yes that's a phrase that stood out for me too.....I read the forum posts, and pass on things to my husband, but while he has a fair idea of how it is with his dad he still pounces on the odd good moments to explain away the many bizarre ones. Hope is usually good, but with dementia it only seems to be false and misleading
     
  9. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    180
    One of the cruellest aspects of dementia – one that guidebooks are loth to mention – is that its symptoms often recapitulate a laundry list of aggravating behaviours that have always marked a familial relationship.

    Such is the deviousness of dementia: its ability to keep hope alive while its symptoms signify only futility.

    ....dark comedy, the misery, and the peculiar ratio of hope to hopelessness so characteristic of dementia. No wonder we resist the disease’s implications and perverse logic, for that way leads to nihilism and despair.

    The article failed to elaborate on incontinence which is a major trauma for many but otherwise very good
     
  10. Palerider

    Palerider Registered User

    Aug 9, 2015
    944
    Male
    North West
    Thanks for sharing this @charlie10

    There are layers to this definitely, I've read it now a few times last night and this morning. It explains something that I couldn't put my finger on and possibly still can't, but there is a glimpse of something in this article I didn't see before
     
  11. Lyd

    Lyd Registered User

    May 27, 2019
    58
    @charlie10 and
    @Pete1
    The psychotherapist Cathy Wiengarten talks about resonable hope. Her argument is in difficult times all we have is hope but hope which is not grounded in possiblity is cruel and heartless. I believe keeping hope alive for ourselves and each other is vitally important and sometimes its all we have to light the darkness but we need to be careful not to create false hope. False hope is the enemy not hope itself.
    A beautiful article thank you @charlie10 for sharing it.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Oh what an amazing account.

    `When memory disappears, something more than memory gets lost.` says it all.

    When my husband went for his first respite care, I came home in the evening feeling quite emotional and switched on the television to watch Neil Diamond.

    The lyrics of one of his songs couldn`t have been more meaningful as I was thinking of my husband, lost among strangers;

    "I am"... I said
    To no one there
    And no one heard at all
    Not even the chair
    "I am"... I cried
    "I am"... said I
    And I am lost and I can't
    Even say why
    Leavin' me lonely still

    This article brought those feelings back to me.
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,093
    Male
    Bristol
    That was an interesting insight, a moving account of the ups and downs of dementia and how it affects relationships and communication. Thank you @charlie10.
     
  14. Donkeyshere

    Donkeyshere Registered User

    May 25, 2016
    307
    channel islands
    "he wanted complete independence yet demanded constant attention"

    This really held true for me and the son's reactions are very much like my OH's with his mother he can barely stay in the same room for more than 10 mins without getting frustrated. I have the compassionate communication on our fridge but it does not change his frustration. When he talks to her she looks to me for confirmation as he talks to fast for her to understand. I never used to mind being the go between but now I sometimes just feel resentful, resentful of how hard this is getting, I sometimes wish it would just stop.
     
  15. Champers

    Champers Registered User

    Jan 3, 2019
    188
    Ironically, my lovely husband is the most patient of of both of us and he spends ages trying to explain facts and trying to correct inaccuracies to both his mother and mine. I then feel frustrated with him because it’s clear neither of them are retaining the information and it’s going over their heads - if not downright confusing them. He’s so kind when he’s with them but comes away worn out from our visits because he’s giving his all. I think he still clings to the glimmer of hope that he’s getting through.

    When we arrive at the CH, I still try and prompt him to not get drawn into discussions about property, money and going home and if they arise, deflect and distract. But no, before I know it, he’s explaining to one or either of them about how their care is being funded, where he’s transferring money from to cover it and not to worry because he’s got it all under control! :rolleyes:
     
  16. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,830
    it’s a brilliant article

    I think we forget that we are all human & have are own traits good & bad!
     

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