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Had to deal with unkind comments today for the first time.

Discussion in 'Younger people with dementia and their carers' started by Beannie, Sep 17, 2015.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Just got to get this off my chest!! Today, after collecting my husband from his Day Care Centre I asked him if he wanted to go into our local market and have a drink, as he used to like going into town on his own (many moons ago) for a wander and often stopped at this market café for a sandwich and a cuppa. He is unfortunately in permanent care now because of his Parkinsons Disease and Alzheimers and I was pleased he wanted to go for a drink instead of straight back to his Care Home.

    I sat him down and went to order the drinks at the counter, keeping my eye on him and as usual he was shuffling about in his chair, moving it backwards and forwards bent over and moving the other chairs at the table, as he usually does. I overheard one of the other customers and a café worker saying to one another what a strange man and then whilst laughing one of them said 'Not sure what he is about' I was so cross that I said to them my husband has Parkinsons Disease and Alzheimers. They both looked very embarrassed and said 'sorry'

    D asked what that was about and I spun him some yarn!! Don't know why but I felt so annoyed even though I know it is out of ignorance but hopefully they will think twice before making unkind remarks again.
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    I've encountered similar with people commenting on how drunk my husband was at 11 in the morning. He too had Parkinson's disease and dementia, which the specialists called Lewy Body disease.

    Yes such remarks do hurt.

    One day sadly the people who do the commenting will themselves have a close relative or even themselves suffering from some form of disease or another which will mark themselves out as different.

    Unkind remarks are usually caused by ignorance and I'm very glad that you told them exactly what the facts were and made them face the reality of their own ignorance.

    I also have a little nephew aged 4 who has a genetic disease which makes the bones in his face grow at a different rate and causes some facial disfigurement (amongst other skeletal problems ). He has sadly encountered stares and comments which has made him acutely aware that he is in some way different than others.

    And this at the age of four years with the rest of his life to go through more of the same!!

    xxTinaT
     
  3. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    Really, really bugs me when people in public places think they can make off the cuff comments about someone. That member of staff has no right to get involved in such a conversation with a customer. Well done, as you say hopefully they will think next time and maybe even do a little research!!! ??
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    I took my wife for a hospital appointment with a "nurse practitioner", on her screen was the letter from the consultant which started "Mrs XXX has Alzheimer's and all test should be done based on her inability to supply cogent information", after trying to discuss the problem with my wife and getting nowhere she turned to me and asked "is there something wrong with her?". I just pointed at the screen, she read it and then just got all patronising towards her, bit of a no win situation, couple of people in a café you might expect it to some extent but the NHS is just as bad.
    Funnily enough the porters, cleaners and other ancillary staff in the NHS do seem to pick up something's wrong and become more helpful (for want of a better word) than the trained professional staff, still the people in the café are twits:)
    K
     
  5. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    I agree, these sort of remarks hurt deeply. We were in a tea room once, on holiday in the Scottish Borders, it was very quiet and we were the only customers. I had chatted to the owner as she took our order and my husband had joined in, in his own way.
    She went to the kitchen and I quite clearly heard her say to whoever was in there ' Not quite right in the head, too much sawdust between his ears.'
    I wish I could tell you I stood up and told her what an ignorant person she was.
    But I was too close to tears, husband was totally unaware of what she had said, so I did nothing.
    It bothers me still.
    Well done Beannie for being stronger than I was that day.

    And Tina, I hope your nephew has a big heart and character enough to repel the stares as he grows up, bless him. Life is tough for some little ones.
     
  6. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Thanks for responding to my post.

    For me unkindness to children whether it be stares or comments is absolutely disgraceful, your nephew may be different but he is also very special as I am sure all his family tell him. After all no-one is perfect.
     
  7. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi sleepless don't let you saying nothing bother you, it was probably for the best at the time. I was just so incensed I couldn't help myself. Another day another time I might have said nothing. We all do what we do at the time and I am sure you were only trying to protect your husband and yourself. The only people in the wrong are the café owner and her Staff. Let's hope she never has to put up with inconsiderate remarks about any member of her family or friends. If that is how she normally behaves she won't have many customers left!! Only we know what is like living with it and trying to keep some sense of normality whatever normal is? Hugs X
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Possibly we should all hit the nuclear button and start to report it as a "Hate Crime" the GOV.UK" website put disability first
    "Crimes committed against someone because of their disability, gender-identity, race, religion or belief, or sexual orientation are hate crimes and should be reported to the police".
    As I say it's the nuclear option but it might help focus peoples' minds. Maybe that's what it'll take, does the café have an on line presence where you can post a comment like on facebook or whatever, as a member of the staff was involved perhaps a reminder that that what occurred may well have been an offence in law.
    K

    https://www.gov.uk/report-hate-crime
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    Sleepless if you want to put this incident behind you then print out this page, highlight your entry and post the page to the tea room if you still recall what it was called. It would be good to let them see how much it has hurt.
     
  10. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    I will consider this. I am sure I could find it on the internet as it had a very unique interior.
    I suppose the only snag would be if the owner was no longer there, but I could mention the date of the incident, which would make it clear who it was addressed to.
    What made it worse, and why I couldn't speak at the time, is that my husband is such a friendly, kindly man, a gentleman, and I have always included him in conversations in situations such as this one. I still do, of course, she didn't put me off doing so. I realised at the time that she was not a nice person, to be taking your order and chatting one minute, then saying that the next.
    I have wondered since whether she is still in business!
    I was very glad he didn't hear what she said. I know he would have forgotten soon after, but I worry that something remains to erode contentment from every negative experience.
    People say the most hurtful things about many situations, out of ignorance of that situation. I admire anyone who stands up and explains why it is hurtful, because there is even a risk in doing that.
    Thank you for your support.
     
  11. Grace L

    Grace L Registered User

    Jun 14, 2014
    647
    NW UK
    As our VaD journey progressed, the outings my husband an I took dwindled...
    We did go out for coffee and cake, little trips..... try and find a quiet café, shop....

    As they were serving us, I had some idiot say to me (husband was in a wheelchair) ...
    'Does he take sugar ?' ..... I said 'Ask him yourself... he's right there !!!'

    They didn't know where to look....
     
  12. tigerqueen

    tigerqueen Registered User

    Mar 11, 2014
    75
    Essex
    Thank you everyone for sharing your hurts. I too have had experience from a nurse's behaviour in the eye clinic when my husband couldn't follow instructions and wished I had said something at the time, but was too gobsmacked to respond. If the time is not right to say something at the time, I'm going to follow it up in future with a complaint or a post on their website and a suggestion that staff should become "dementia friends", as I'm sure that will make me feel better too.
     
  13. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    Found the tea room easily due to it's unique interior.
    I will send a printout, with our experience highlighted. I will write on that it is sent in order to educate about dementia, and attitudes towards it, and to hopefully avoid anyone else with a disability being treated so badly.
     
  14. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    #14 Countryboy, Sep 18, 2015
    Last edited: Sep 18, 2015
    Well being a person with dementia myself I'm not bothered about others or what they think or save behind my back however I do feel sorry for people who I may have to deal with during my daily life weather is ordering a coffee or trying to explain some thing over the phone because my words just so mixed up from my thoughts to my speech that's why I carry rely on emails which is great ok I still make mistakes but my dementia is my problem. Just back to add to this I personally believe in free speak if there remarks upset me well that's just tough
     
  15. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Good for you!

    I think an awful lot of unkindness comes from the culprit seeing everything from their own perspective (or their group's perspective) only. What you do will be usefully educational for these particular culprits - and they may in the future be as shocked by their past behaviour as you were.
     
  16. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    It's in the post, and fourteen months on, I do feel better.
    I feel I have stood up for my husband's right to be treated with dignity.
    Unlike you Tony, he is unable to do this for himself. You are amazing in what you can still do.
    Throughout his life my husband has always been kind to the vulnerable, and deserves no less himself.
    Thanks all.
     
  17. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    Sorry wasn't being disrespectful to you or your husband sleepless , I have suffered a great deal of abuse over 16 years from work and friends because they don't understand how the dementia effect people but I try be strong and lift myself above it I also see the funny side of some of the thing I've said and done when friends or family tell me like putting mustard on my apple pie in at ladies night dinner dance and had no idea I did that
     
  18. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    No offence taken, Tony.
    It's good that you can see the funny side of things too, with your family etc.
    And at least it was your own apple pie that got the mustard.......
     
  19. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,585
    I'm glad you sent the letter, Sleepless. I do believe it will help you to close that chapter, it wears you down wishing you'd done something as much as regrets that you have said or done too much!

    Communication is vital, my problem is that I am an instant reactor and so have more regrets about things I've said than things I didn't!

    My adult disabled son has a syndrome that involves skin cancers, most based around the head and shoulders.

    He has had many, many operations...one due last week but deferred because of my London Jolly.
    He has lots of scars, some disfiguring, pulling down his eye, some have healed extraordinarily well and are hard to see.

    A couple of Octobers ago we had an encounter in a garden centre Café with a couple of women making what they thought was a whispered comment about my son and how he wouldn't need a Halloween mask.

    I went back to them, parking my son next to the fish section and gave them the length of my tongue, supported, I must add, by the café staff who know my son well,
    but I while I felt triumphant in the very moment,
    it broke my heart and I spent a good fortnight recovering from the emotional trauma I felt,
    both at their comments and the anger I felt and the desire I had/have that I could simply turn the other cheek.

    I wish I could let it all go over my head but I can't...ignorant pigs incense me and until the day I die I will feel it my duty to tell them.

    I'm glad you wrote the letter, loose ends tied off...one day I hope I grow up enough to be able to deal with things in a more balanced way.

    Love, G x
     
  20. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    Thanks, Gwen. x
    Sometimes turning the other cheek is the right way to go I suppose, but you are not and hopefully never will be a woman who turns a blind eye to hurt or injustice, especially for your son.
    There is always an aftertaste with confrontation of whatever kind. If we didn't feel that, we wouldn't be who we are, if you know what I mean
     

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