Suffering from, or living g with ? You decide

Discussion in 'I have dementia' started by Norrms, Nov 29, 2015.

  1. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,281
    Male
    Torquay Devon
    The link below was posted by the Alz soc in the Guardian newspaper, your comments would be most apprediated, please click on Bottom link to see what i am talking about


    HOW RIDICULOUS !! I LIVE WITH Dementia, and i like to think i live quite well with it, but there are so many people out there in Late stages who SUFFER from this, my own grandmother and my father were bedridden , confused, upset angry, embarrassed, had terrible hallucinations, loss of reality and upset when couldnt understand what was going on, are you trying to tell the world they were not suffering ?? Goodness SAKE !! lets get a grip on reality here, and get back to COMMON sense !!
    If you are in early stages, or mid stages and coping ok you are living with dementia, in later stages when this horrible disease takes hold, ruins your life and robs you of your mind, THEN TRY TO TELL ME they are NOT SUFFERING!!!!
    Tts not very often i post about another "Dementia Charity's" wordage or views as its always taken as " petty "(though its never intended that way i may add) but this was a step TOO FAR. I am not blaming all, just the very misguided person who wrote this and was SO PRESUMPTUOUS that he / she thought they could speak for all carers and of people who have this terrible disease , where do they get off thinking they have the right to speak for us and TELL US what to say and not to say ??
    What happened to the very great Phrase

    "When You Have met ONE person With dementia "

    "You Have met ONE person with dementia "

    Or would they rather us all follow them like sheep instead of using our own common sense in what to say ???

    As you have probably guessed, not happy about this one !! xxxxxxxxxxx

    https://www.facebook.com/alzheimers....8270524646/10153669215994647/?type=3&theater
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I know there is a movement at the moment to eradicate the word suffer from the vocabulary. My mother (the person with dementia) would have preferred that they eliminated the word dementia and called it memory loss - she said that it was a demeaning word for her generation because it comes from the word 'demented' and reminded her of all the bad places such as bedlam, workhouses and geriatric wards. She said she was a sufferer (and she had a good quality of life) and would have told everyone until the day she died that she suffered with her memory loss. I discussed this at great length with many many people who work with people with memory loss - carers, families, activity coordinators and anyone open to discussion and few of them subscribe to the newly instigated 'belief' that those with dementia do not suffer.

    I abide by her wishes and try very hard to refer to memory loss and I do use the word suffer unless the person with dementia tells me that they would prefer me not to. I believe that the powers that be have consulted but always with people in the very very early stages of memory loss, because of course this group is the easiest to consult with. I think removing the word 'suffer' was initiated by Health and this was done partly to try to remove diagnosed memory loss from the health payment system - 'suffer' implies pain, extreme discomfort and other symptoms generally associated with health conditions - health do not want the bill !!!

    This is of course just my take and I am always open to any discussions around any of this xxxxxxxxxxxxxxxx
     
  3. Essie

    Essie Registered User

    Feb 11, 2015
    566
    Hi Norrms, well, judging by the response so far on Facebook most people (me included) agree with you - there are, as I write, 44 comments and the vast majority are saying the same as you are.

    Dementia, in all it's forms, isn't an inevitable part of getting old (not even old in some cases) it's a disease with a cause and, therefore, somehow, a cure and that's what the AS and the medical profession in totalis should be concentrating on not excluding a word from their vocabulary. In fact the removal of the word 'sufferer' almost seems to suggest that treatment/a cure is not top of the AS's list of priorities - "it's fine now - you're not suffering anymore now you're 'living with dementia'"

    A bit OTT I know but point made! :eek:

    Seriously, I'm sure it's well meant and of course I can see the thinking behind it - some people will have a number of years after diagnosis where they can still manage a reasonably good quality of life but I do feel it's not been fully thought through - it comes across as disrespectful and dismissive of the truly dreadful suffering of so many with this awful disease, and their families too and it seems indicative of the current AS approach with those silly adverts where a cup of tea or holding someone's hand makes everything fine! :mad:

    Gosh, I didn't know I was that cross about it till I started writing......:D

    Well found Norrms, best wishes to you.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I agree Essie that by removing the word we are not acknowledging how 'uncomfortable ' in all the varying degrees of 'discomfort' from mild to majorly mega horrendous discomfort, memory loss is to live with
     
  5. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    In a world where one can suffer from a cold, it is an insult to deny the suffering of those with dementia.
    Admittedly, there are as many degrees of suffering as there are people with the disease, no two people seem to tread quite the same path. And some have an easier journey than others.
    But I am not happy with the sanitisation of dementia that we see in the media.
    We wipe the bottoms of people who would be wiping their own bottoms if they didn't have dementia.
    We get used to it.
    They often don't.
    The indignities, delusions, hallucinations, and above all, the loss of freedom to live their own lives and make their own choices in my opinion makes them sufferers. It is not a word I like to use, but I respect the right of anyone with dementia, or caring for someone, to use the word freely.

    When my Mum was diagnosed I was sent photocopied pages of a medical textbook by the CPN. The book detailed the stages, always referring to the 'victim' and the description of the final stage was horrific to someone who knew nothing of dementia. I felt sick, and resentful, but in a way this gave me a far better idea of what lay ahead than most of the 'helpful' pamphlets that came my way.
    TP has all shades of 'living with' and 'suffering from' because it is a reflection of how dementia is.

    'Dementia Friends' is a good idea, but does it give the man on the street the impression that if we are all dementia aware, the huge and escalating monster will go away?
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,730
    Kent
    My husband certainly 'suffered' from dementia and so did I by living with it. There may be some who manage to have dementia and continue to live their lives as best they can and I admire and envy them. We lived with suffering and I resent being told how to express what we felt.

    One thing I can be grateful for is the suffering eased in the later stages but by then Dhiren was in residential care and had lost mobility. Even so, once his suffering eased so did mine.
     
  7. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    awww Grannie G thinking of you xxx. Me too!
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    we had a happy clappy recently too -not dementia friends I hasten to add but a similar meeting - it was not appropriate
     
  9. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    Because when you step back into the real world of dementia, how does all that help?
     
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    I think this is a matter of personal choice. Many PWD do suffer, as do their carers. Some people seem to decline relatively peacefully and reach a state where they don't seem to be suffering. My mum was like this.

    I don't think anyone has the right to tell others how they should use the language in matters like these. I would question the sense of a campaign like this. And a newspaper can't win because whatever wording they use when discussing PWD someone will be offended.
     
  11. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,402
    Male
    Cornwall
    Hi stanleypj suffering well is a yes and no depends on the day but what is PWD can't figure that out but on other hand I do have dementia
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    PWD = person with dementia, Tony. Sorry, I didn't invent it but saw it used a bit on TP. It's actually a pretty neutral term compared with 'suffering from' and 'living with'.
     
  13. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,402
    Male
    Cornwall
    Thank you stanleypj yes see that now but not easy when you can't get what it means
     
  14. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,561
    North West
    Yes, I struggle with some of the abbreviations at times. Someone helpfully compiled a list with their meanings. Perhaps some kind member who knows will post a link.:)
     
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    I totally agree with you Fizzie, because we can't 'say' what we are suffering most of the time we obviously aren't :rolleyes::eek: and they most certainly do not want to pay for it. I question that our healthcare system really wants to understand dementia when told by dementia support workers and other Health Care Professionals, 'You can't force someone to accept care' so we just leave people to decline further:( I ask whose 'mind' is in denial - the System's certainly is.
     
  16. Beate

    Beate Registered User

    May 21, 2014
    11,499
    Female
    London
    Personally, I don't like the word "sufferer." I usually replace it with "patient." I also prefer "living" to "suffering" but normally just abbreviate it to "person with dementia". Surely no one can take offence to that?

    As the following link shows, it is a matter of personal opinion, but I know of quite a few campaigns to substitute the term suffering with living, and I was there when Jeremy Hunt was taken to task about it in a hustings on the dementia subject.

    http://dementiaresearchfoundation.org.au/blog/i-repeat-“please-don’t-call-us-sufferers”
     
  17. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    Well said, Sue.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,730
    Kent
  19. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Some people get too worked up about the use of terminology and seem to think that we should follow everything about Dementia from what they say!

    As far as I’m concerned “Some days I am living with dementia, and other days I’m suffering from dementia” it all depends on the circumstances on any particular day “BUT” one thing for sure no matter what you call it (every day is like a day in hell)
    :confused::confused:
     

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