Experience Of Dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by varbell, Oct 7, 2006.

  1. varbell

    varbell Registered User

    Oct 4, 2006
    11
    cumbria
    Hi I Just Thought You Might Like To Read Something I Was Given By A Care Worker.


    Part One

    You Are In A Swirling Fog,and In Half Darkness. You Are Wandering Around In A Place That Seems Vaguely Familiar, And Yet You Do Not Know Where You Are,you Cannot Make Out Whether It Is Summer Or Winter,day Or Night. At Times The Fog Clears A Little And You Can See A Few Objects Really Clearly,but As Soon As You Start To Get Your Bearings You Are Overpowered By A Kind Of Dullness And Stupidity, Your Knowledge Slips Away And Again You Are Utterly Confused.
    While You Are Stumbling In The Fog You Have An Impression Of People Rushing Past You Chattering Like Baboons. They Seem To Be So Energetic And Purposeful,but Their Business Is Incomprehensible. Occasionally You Pick Up Fragments Of Conversation,and Have The Impression That They Are Talking About You. Sometimes You Catch Sight Of A Familiar Face But As You Move Towards The Face It Vanishes Or Turns Into A Demon. You Feel Desperately Lost,alone,bewildered,frightened. In This Dreadful State You Find That You Cannot Control Your Bladder Or Your Bowels, You Are Completely Losing Your Grip. You Feel Dirty, Guilty, Ashamed It's So Unlike How You Used To Be,you Don't Recognise Yourself.
    And Then There Are The Interrogations. Official People Ask You To Perform Strange Tasks Which You Cannot Fully Understand. Such As Counting Backwards From 100, Or Obeying The Instruction, If You Are Over 50 Put Your Hands Above Your Head. You Are Never Told The Purpose Or The Results Of These Interrogations. You Would Be Willing And Eager To Co-operate If Only You Knew What It Was All About And If Someone Took You Seriously Enough To Guide You.
    This Is The Present Reality Everything Is Falling Apart, Nothing Gets Completed,nothing Makes Sense. But Worst Of All You Know It Wasn't Always Like This. Behind The Fog And The Darkness There Is A Vague Memory Of Good Times, When You Knew Where And Who You Were, When You Felt Close To The Others And Were Able To Perform Daily Tasks With Skill And Grace. Once The Sun Shone Brightly And The Landscape Was Of Life Had Richness And Pattern. But Now All That Has Vandalised And Ruined And You Are Left In Chaos, Carrying The Terrible Sense Of Loss That Can Never Be Made Good. Once You Were A Person Who Counted Now You Are A Nothing, And Good For Nothing.
    A Sense Of Oppression Hangs Over You, Intensifying At Times Into Naked Terror, It's Meaning Is That You May Be Abandoned Forever, Left To Rot And Disintegrate Into Unbeing.
     
  2. Helena

    Helena Registered User

    May 24, 2006
    715
    I am sure the description is so very correct however what gets me is if it was your cat or dog wandering ainlessly in this stupor everyone would consider it a kindness to take it to the vets to be helped into final peace

    How can it be right that our society condems Dementia sufferers to years of such torment instead of giving them the dignity of passing peacefully into another life
     
  3. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Are you talking about involuntary euthanasia? Who would decide when it was time, and how? and how would you protect those pressurized by uncaring next-of-kin?

    I know my mother's experience of dementia wasn't the same as yours, there were some good bits until the last days in hospital.


    Lila
     
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Whilst odd bits of this 'interpretation' may well be somewhere near the truth, I do feel that it paints a picture that is far too dark and scary!

    My husband has certainly been frustrated, angry, worried, depressed and even scared in the last 6 to 10 years, but with plenty of love, kindness, support and gentleness we can usually make him feel comfortable and contented. By our standards his quality of life may not be brilliant, because he is so dependent, unable to participate in day-to-day tasks or entertainment, doubly incontinent, unable to put names to faces or objects ........ but he does enjoy the company of others, he thrives on the attention he receives, he loves food and drink, as well as a cuddle, he displays enjoyment (as well as displeasure!), he returns smiles and reacts to music - - - - he is not in any physical pain, nor is he missing the things that may once have mattered, such as getting out and about, visiting friends, going on holiday.

    We will endeavour to always provide love, comfort and safety for him!
     
  5. Helena

    Helena Registered User

    May 24, 2006
    715
    For me Quality of Life supercedes Quantity anytime

    and that must apply to the carers too

    When both the patient and the carers life simply becomes a struggle from one day to the next with no prospect of anything approaching normal life i have to question current attitudes

    My Mothers quality of life has been increasingly poor for the last 2 years now instead of her fall and the pneumonia ending it peacefully she is now worse than ever and reduced to sitting in a chair in immense confusion , staring blankly or criticising all around her much to everyones distress
     
  6. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Or perhaps it is a question of separating out the patient and the carer, and stop taking it for granted that a daughter (whatever her age or state of health) should sacrifice herself for her mother. Daughters should be allowed to visit without being expected to do everything.

    If your mother is still eating all those chocolates and being a pain doesn't this show she still feels she has a life worth living?


    Lila
     
  7. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    When you realy love someone

    Nutty Nan, You cheered me so much with your post. I so often find it so depressing reading some coments on TP. Why don't more of us 'look on the bright side of life', smile and sing along. The bright side, some might ask? is to see a loved one content in knowing they are valued, feel safe, secure, loved and the caring is rewarding. Thanks once again Nan. God bless you. Padraig
     
  8. Helena

    Helena Registered User

    May 24, 2006
    715
    Lila

    The Social Worker has tried 3 times to do an MMSE but says my Mother is in no condition for it

    Despite all this they were going to send her home on Monday and charge Social Services as of tommorrow

    They have not done any assesments
    The Consultant has lied to me
    They have not followed the rules
    and above all have not included myself or my sister in any discussion whatever of Mothers condition or future care


    Arrogant is not even the word for her consultant
     
  9. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Dear Padraig, I DO think the caring is rewarding, but ..... I realise it is a bit of a chicken-and-egg situation: it is rewarding because my husband responds to our attempts to communicate with him. I am not so sure I would feel quite the same if I was dealing with someone who is mostly miserable and unco-operative. Perhaps, just perhaps, he lights up our days with his smiles because he knows that we care so deeply ..... I also have to admit that the support of our daughters and friends means a great deal. I think you are amazing to carry this on your own!
    Take care.
     
  10. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Are you going to make yourself uncontactable as you suggested?

    Lila

     
  11. Helena

    Helena Registered User

    May 24, 2006
    715
    Lila

    I am going to follow the advice offered on www.************

    As I have a registered EPA for my Mother the SS cannot demand and i cannot provide under the rules of data protection any details of her finances
     
  12. Áine

    Áine Registered User

    to return to the OP

    hi varbell

    I found the piece you posted really interesting. I guess we can never really know (and I think I don't want to know first hand) how the person with dementia feels .... but this offers some empathy and imagination about how it might feel.

    But what I found even more interesting was that I'd read quite a bit of it before I realised it was the "patient" rather than the "carer" that it was talking about :eek: Until the mention of losing control of bowels and bladder it sounded so very like my experience of my dad starting to get ill and my struggle to find my way through the 'care' system to get help for him. ........................ and to be honest, most of what it says after that bit also sounds like my experience of it, not least "You Would Be Willing And Eager To Co-operate If Only You Knew What It Was All About And If Someone Took You Seriously Enough To Guide You"

    I don't mean to diminish the nightmare of actually struggling with dementia ....... no matter how hard I found caring for dad I was always glad I was me and not him ... but it does feel like there's some parallels :confused:
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    you are so right and this comes primarily to those who throw themselves into caring and trying to understand the position of the person with dementia.

    The worst downside to me is that I frequently wonder if I'm becoming a patient myself, each time I forget names, or to do something I had planned to do, or.....
     
  14. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    It is only since I have witnessed Alzheimer's at such close quarters that I realise it is at least as scary as Cancer or any other major illness or disability - I admire my husband hugely in the way he 'handles' it, and I know I would absolutely detest to be in his position!!!
     
  15. Helena

    Helena Registered User

    May 24, 2006
    715
    I reread that piece just now and oh how much it describes my poor Mother today and what she must be feeling

    2 weeks ago she was confused from time to time but still able to prepare a meal of sorts and live alone reasonably OK until challenged by a letter she did not understand or when asked about an unpaid bill and yes her finances were in a hopeless mess and her clothes were unwashed but outwardly to most people she was just elderly

    She could still give doorstep salesman a flea in their ear etc

    Now she is a shell of herself sad,crying,incontinent and has no idea she is in a hospital or even who her daughters or grandchildren are much less her great grandchildren
    Her life has no meaning and no purpose and theres nothing for her to enjoy
    It was her 90th Birthday and even a birthday cake with candles was incomprehensible to her
     
  16. Áine

    Áine Registered User

    hugs Helena .......... that feels so sad.
     
  17. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    Her life has no meaning and no purpose and theres nothing for her to enjoy
    to her[/QUOTE]


    hi helena,

    just wanted to say i totaly agree with what you said about your mother having no meaning and no perpose thats how i felt with my mum they say alzheimers is a long berevement well thats true Its truely a horried illness.

    take care kathy
     
  18. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    What gives life meaning and purpose? Being an economic contributor? Being able to care for oneself? Being able to love? Being able to smile? Being able to give others pleasure? Being able to 'bring out' the goodness in others? We are all born totally dependant on others, and some of us die that way too - and that is OK, and honourable; I think that it is wrong to undervalue people with dementia. My opinion is that we as relatives should do all we can to ensure that life is as good as it can be; do our damnedest to find something that can be enjoyed - and squeeze from it every good moment that we can.
    Only my opinion.
    Helen
     
  19. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    155
    stretford
    HI AMY

    my mum had a partner and 7 children and there was nothing in the last years of her life that we could as a family find anything enjoyable to do with my mums illness. I can only go on what happend with my mum i saw it as she was exsisting not liveing just my opinion. kathy
     
  20. Helena

    Helena Registered User

    May 24, 2006
    715
    I agree .........my Mother is quite simply a shambling shell for whom theres absolutely not one ounce of joy to be elicited

    She refused to have all the Birthday cards up .......insisted they were to be shoved in an envelope and taken away

    After I left she got extremely agitated and insisted my sister took away the Birthday Cake I made her ..........so my Sister gave it to the Nurses

    She is now under care of a different consultant and apparently has both Multi Infarct Dementia on both sides of the brain plus small vessel dementia (Binswangers) deep in the brain and assesment for an EMI unit is next

    This explains many of the symptoms we thought were Lewy Body

    However nothing we can do or say is going to make things better and even the doctor agrees it would have been a kindness for her to have slipped away

    A DNR note has been put on her notes
     

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