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Thread: Stigma

  1. #1
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    Stigma

    • When I was diagnosed with having Lewy Body Dementia we lost some friends, who we thought were very close, but I put that behind me as it proved that they were not so close.

    But why is it when you get this illness, people don't stop to ask "YOU" how you are, but ask your wife or caregiver, who is standing right next to you.

    Its not as if we are ghosts or contagious, and its something which really annoys me at times and I just have to walk away and leave them to it.
    ...
    Some people will shake my hand but never look into my eyes.

    I confess that I don't really understand this attitude and in this day and age people should be more understanding. I suppose its a form of stigma, or they have unhappy memories of family members from the past, but when you are stood in front of them it would be so easy to look straight at us and ask directly.

    I know Alzheimer's has the disease term after it but dementia does not, yet they are both classed as forms of dementia.

    I remember once being asked at a conference it the illness was contagious, and I was staggered, but I suppose its because people assume all diseases are contagious, so then I ask myself why dementia is called a disease? because if it was not, it would save a lot of problems and possibly the stigma which goes with it.

    Has anyone else had similar problems to this.
    Life is a Journey - Seize the day, and enjoy it while you are able to.

    Thank goodness for spell checker

  2. #2
    It annoys me too when people ask me how my husband is, when he's there. I used to say "Ask him, he's there!"

    I think maybe people are afraid of saying the wrong thing, and it is a marked lack of understanding on their part. I know when we have been involved in a social evening, many people will ignore my husband, and he has commented how left out he has felt. I have always tried to bring him into the conversation.

    I too prefer to use the term dementia, not liking the disease part!

    Jan
    “Peace comes from within. Do not seek it without.” - Buddha

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    I am sorry to hear you feel there is a stigma attatched to your illness - I feel it is other peoples ignorance and not a problem you should waste time worrying about. If you had a broken leg or arm your friends would understand but anything to do with the brain seems to pass people by. Don't worry about the 'friends' you have lost as they are not worth space in your brain

    My MIL has even found her sisters do not visit her or my FIL who has been in care for 10 years. One has visited my FIL on one occasion (yes in 10 years) and commented "he was not as bad as she thought her was going to be" That particular one does not phone or even ask how he is on the odd occasions they are in the same place (family gatherings). They will drive by where she lives to visit the other sister who is now in care but never call in to see her which upsets her no end (she is 85)

    I came across the words below last week for the first time and I think it sums it up perfectly:

    False friends are like our shadow
    Keeping close to us whilst we walk in the sunshine
    But leaving us the instant we cross into the shade


    Best wishes and embrace your true friends

  4. #4
    Quote Originally Posted by SWMBO1950 View Post
    I came across the words below last week for the first time and I think it sums it up perfectly:

    False friends are like our shadow
    Keeping close to us whilst we walk in the sunshine
    But leaving us the instant we cross into the shade

    How true that is!
    Jan
    “Peace comes from within. Do not seek it without.” - Buddha

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    stigma

    Hi KenC good to see your ok, re: your thread Stigma yes you may remember I have had lots of major problems with stigma for several years ok I have been upset but I
    still carried on with living my life the best way I can , whilst I’m replying Ken I wondered why you stopped replying to my private emails another was that Norrm’s
    guy and a few others , the only T.P person I’m in contact with now is Barry we email each other several time a week still, and Ken you know I always included you in these emails, I suppose that’s a life living with dementia

    Tony

  6. #6
    Hi KenC

    I blame the war and to a certain degree a Victorian English history (just my opinion, by the way).

    My parents had it TOUGH in the so called GOOD OLD DAYS. The term good old days, alas, makes me laugh nervously ! What was so good about the good old days:

    1. There was a war on
    2. Teachers and parents were to be OBEYED and NEVER questioned.
    3. The old monty python sketch, I forget its name, but its 2 yorkshiremen, I think, saying things like, we lived in cardboard box........luxury, we worked 28 hours a day had no breakfast etc etc etc.

    If that IS how life was then, there is a nation full of elderly people with a certain MINDSET. It is that mindset that I "think" is the PROBLEM.

    A young member of our family had a serious mental illness a few years ago and my mum told him to SHAKE HIMSELF OUT OF IT, LIKE WE DID IN THE GOOD OLD DAYS !

    In summary, I honestly believe that my parents generation had it tough, so, when it comes to OPEN, HONEST DISCUSSION they simply don't have a clue WHAT TO SAY.

    Sorry, but will get off my soapbox. The good old days.........uhmmmmmm........they have a lot to answer for.
    Strive not to be a success, but rather to be of value" Albert Einstein

  7. #7
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    Quote Originally Posted by SWMBO1950 View Post
    If you had a broken leg or arm your friends would understand but anything to do with the brain seems to pass people by.
    when I was in a wheel chair due to broken leg - I became invisible... people walking in the street would walk into me sitting in the wheel chair!!! my fault of course, I wasnt at walking eye level..... and trying to buy something.... forget it - there was obviously something wrong with my brain if I needed to be in a wheelchair with a person with a disability pushing me..... forget the fact of the huge ankle to thigh plaster cast....

    It seems to me that if there is anything slightly out of the ordinary, joe public ignores it and only want to see "normal"

    KenC you are not alone in your anger/frustration with joe public, wish there was a way of ensuring every one being treated equal despite....
    To succeed in life, you need three things: a wishbone, a backbone and a funnybone - Reba McEntire
    If only it was that easy - 2jays

  8. #8
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    I can understand the old days when people would never discuss dementia, as it was very much like Cancer in the 1960s. Yet while dementia has moved away from the bad days where people were removed from society, I do still think it has a long way to go to catch up and remove the stigma altogether.

    I know that dementia can be upsetting to those around them so perhaps its there way of dealing with it. I can sometimes get agitated when I can not think of a response or the right words and I think this has a lot to do with the problem.

    Years ago I would laugh at myself for making mistakes, (this was my way of stopping me from getting upset and distressed), but after being over hauled by a carer for being rude to those with the illness, I found I went the other way in frustration. Even when my wife explained that I had DLB this lady carried on with her tirade, and I found that very upsetting.

    I started to question what I had said and in the end got close to the point where I spent so much time looking for the right answer, and perhaps many just don't bother waiting for me to come up with the answer I want.
    This also meant that I gave up using the computer for some time, as I could not explain myself, until I went back to voice activated software.

    I guess its all down to lack of education about the illness and fear that they may well end up with it one day.
    Life is a Journey - Seize the day, and enjoy it while you are able to.

    Thank goodness for spell checker

  9. #9
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    thats really sad im sorry to hear people do this to you..
    Abit different but my sister has additional needs and cant talk as well as she should be able to at 5..and people talk to us mostly instead of her which really annoys me becos she can still communicate and understands everything. the same happened when i worked with learning diss and at my current job with individuals who have dementia. perhaps people dont understand, though some i feel are just ignorant. its something ive never understood grr
    Take care

  10. #10
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    Quote Originally Posted by hollycat View Post
    Hi KenC

    I blame the war and to a certain degree a Victorian English history (just my opinion, by the way).

    My parents had it TOUGH in the so called GOOD OLD DAYS. The term good old days, alas, makes me laugh nervously ! What was so good about the good old days:

    1. There was a war on
    2. Teachers and parents were to be OBEYED and NEVER questioned.
    3. The old monty python sketch, I forget its name, but its 2 yorkshiremen, I think, saying things like, we lived in cardboard box........luxury, we worked 28 hours a day had no breakfast etc etc etc.

    If that IS how life was then, there is a nation full of elderly people with a certain MINDSET. It is that mindset that I "think" is the PROBLEM.

    A young member of our family had a serious mental illness a few years ago and my mum told him to SHAKE HIMSELF OUT OF IT, LIKE WE DID IN THE GOOD OLD DAYS !

    In summary, I honestly believe that my parents generation had it tough, so, when it comes to OPEN, HONEST DISCUSSION they simply don't have a clue WHAT TO SAY.

    Sorry, but will get off my soapbox. The good old days.........uhmmmmmm........they have a lot to answer for.
    Sadly i get a lot of that attitude about my own mental health issues

  11. #11
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    Quote Originally Posted by worriedson1 View Post
    Sadly i get a lot of that attitude about my own mental health issues
    And of course from a lot of people who have jobs

 

 

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