1. Elizabeth H

    Elizabeth H Registered User

    Aug 15, 2007
    3
    Hi everyone,
    I've just signed up to Talking Point, to find out if anyone else has had hurtful remarks made about their relative's Alzheimer's. My mother has had the disease for a few years, and is now in a home - we had an appalling time before then, with my disabled father pretending that all was well and trying to cope on his own. My sister and I worried ourselves silly about them, until finally, after my mother had attacked my father, thinking him a stranger, he admitted that he couldn't take any more. My sister and I then spent eight hours in A&E trying to get her admitted, and she spent six months in a grim psychiatric ward until we finally got her into a really good home. It's still not exactly easy, particularly when she stands at the locked door waving us goodbye, but we know she's contented, safe and well looked after. All the time, though, we're aware of what's to come as both our grandmothers died from Alzheimer's.

    But what has appalled my sister and me is other people's responses to what is obviously an extremely distressing situation for us. If they forget a word or a name, they laugh and say happily that they're getting as bad as our mother or that they're getting Alzheimer's. We've had that on numerous occasions. The very worst was when a good friend commented on my mother and her new "husband" (my mother has latched onto a male resident at the home, thinking he's my father, which is a great comfort to her). The friend asked me if my mother and this man were having sex. I'm afraid a red mist descended and I squawked at her. She was horrified that she'd hurt me, but clearly didn't understand how. For the sake of our friendship, I've glossed over it, but it still rankles.

    Her remark obviously stemmed from ignorance, so my sister and I asked around to find out what people with no direct experience of Alzheimer's actually knew about the disease. The results were depressing - absolutely everyone said it was just a bit of memory loss, which got to a certain stage and then didn't get any worse. They had no idea it leads to death.

    It's made me do a lot of thinking about how I can help raise awareness. As I'm a journalist, I'm putting together an article to explain what it feels like to be on the receiving end of people's ignorance and to have to cope with their remarks on top of the misery we already feel about our mother. If she had cancer or heart disease, I'm certain no-one would joke about that - so why about Alzheimer's?

    Can anyone give me examples of their own experience - people's unthinking comments, more evidence of how ill-informed people are about such a common and awful disease? I won't use names - I just need the information to lend weight to the article. If it helps just one person to understand a bit more about the disease, it will have been worth it.

    Hope you can help.
     
  2. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    Unfortunately, there is widespread ignorance about dementia and it's devastating effects. As you point out, most people who have never experienced it think it is just "becoming a bit forgetful" or "being a bit eccentric".

    Of course, that is true, but only in the very early stages.

    Outside of family and friends, people just don't meet anyone with dementia - by the time the latter stages have kicked in, patients become housebound, or reclusive, or in a care home. If someone does meet more severe dementia their first reaction is to run a mile from it (and who can blame them for that?).

    There's also a stigma attached - as there is to all other mental illness. For example, I've had bad depression and have met people who think it;s just being "a bit sad, I've had that, but pulled myself together".

    Probably the most hurtful thing I ever saw was some celeb on TV saying "oh maybe I got Alzheimers that's where you forget stuff innit"
     
  3. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    There certainly is a massive lack of understanding of dementia/AZ - I will admit that before my mum was ill I would have thought of it as just memory loss.

    I have found that there is also ignorance in that there are other types of dementia than just Alzheimers. I feel that needs addressing as well.

    Good for you for turning your experience with these insensitive people into a positive step.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    Hallo Elizabeth, welcome to TP.

    I must be fortunate as none of my family or friends have ever made any derogatory comments about either my mother, when she had dementia, or my husband now, with Alzheimers. If they had, they would have been told in no uncertain terms.

    That doesn`t mean I don`t believe there is a lot of ignorance about dementia and I`m sorry you have has to tolerate such insults. I wish you luck in your desire to educate.

    I think one of the misconceptions is that dementia only attacks the elderly. It might be worthwhile mentioning how many younger people [in their 40`s and 50`s ] are known to suffer dementia. Either the numbers are rising, diagnosis is improving or, through this Forum, they are coming to the notice of TP.

    Thank you for trying to improve awareness.
     
  5. Elizabeth H

    Elizabeth H Registered User

    Aug 15, 2007
    3
    Thanks for your comments - some good points there. Yes, you're right - dementia does affect younger people too. A friend died in his early 50s from Pick's Disease, so I'll make a note to mention that in the article. True, also, that there's a big stigma about mental illness, and that most people don't see Alzheimer's sufferers when they get beyond a certain stage. All really helpful stuff - many thanks.
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Generally I have had no 'bad' experiences. Most people have been more than understanding and helpful and if they did not understand Alz they said so.

    There was one colleague who once commented that it would be alright cos he would just smile and be happy in his own little world! How ridiculous was that, so much so that I just ignored it. The worst experiences were from the nursing staff when he went in for change of pacemaker. They should have known better and seemed to think that even with Alz my husband was capable of making decisions and remembering - and at the same time totally unable to accept information of his abilities from me. That was annoying.

    Other than these incidents I have tremendous moral support from friends and family.

    Obviously this is just my experience.

    Best wishes Beckjan
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    I would be interested to know how many people, who have not had personal experiences of dementia, know, or even want to know anything about it.
     
  8. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I must say that I'm finding some of the worst offenders for not wanting to know are family - which astonishes and infuriates me.

    My mum's sister just does not want to know and doesn't want to see her - to the point that she ducked out of coming to mum's 60th at the last minute. She says she can't cope with her - considering she sees her once a week for a social evening with my dad and her husband present I think it's s**t really - excuse the language.

    Dad wants me to talk to her about it but I can't bring myself to because I'm so angry with her, I'll say something I'll regret.
     
  9. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    It's understandable. It sounds awful - but there are days when I find myself avoiding my own dad because it is so painful to see him trying to do something simple and failing/babbling nonsense/off on one of his paranoid episodes. It's so horrible seeing the shell of the dad I once had, and also a reminder of his inevitable decline, and a sign of things to come.

    I have always found it very difficult to cope with people who are "not normal" in a mental sense, whilst anything physical does not phase me in the least.

    Some of this comes from a visit to my gran in a care home as a child. I hadn't seen her for quite a long time so it was a great shock. She did not recognise me, just stared vacantly into space and mumbled things and then nearly wet herself because she couldn;t remember where the bathroom was or how to use it.

    It was so dreadful, I cried all the way home and said to my mum that I couldn't face going to that awful place and seeing my gran like that again, I just wanted to remember her as the lovely gran I had known who I played cards and did jigsaws with.

    Sadly gran died not long after that, but although I never said the chance to say goodbye, I never really felt that way, I felt my gran had died long before then.
     
  10. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    Not hiding

    Hi Elizabeth, It's true what Nebiroth says that few people see anyone in the late stages with Alzheimer's. For more than four years now I refuse to stay housebound. Ever since I refused to accept that my wife was bedridden on Christmas day 2003 when I decided to dress her for the first time since removing her from a NH, I take her out daily. Because she can't move nor speak and her body is stiff I strap her legs and waist in the wheelchair, take her for long walks and twice a week to the supermarket, shopping. In the beginning some people would look away, but as I pushed her along I always say loud enough "It's Ok we're invisable but we can see them!"
    Now we've become well known and today at the supermarket two women rushed over to see her, one gave her a hug while the other stroked her hand. Jean became overwhelmed with emotion, they have come to understand it was because she was getting attension. All the staff ask one another if they have seen us and give us a warm welcome. At the check-out I make sure to tell anyone who's looking what it's all about. I've got to know some real nice people and don't have a problem telling them what I think is wrong with the way people perceive Alzheimer's. Go girl, give it your best shot. Strange, no men stop and chat with us only women, except when it's couples. Padraig
     
  11. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Elizabeth

    I was one of the people who assumed that AZ was "only a bit of memory loss."

    My grandad died of a form of dementia in 1985, he was in a mental hospital and there was a great deal of secrecy about the condition, it was viewed by many as a mental illness.

    Mum was diagnosed in 2003 and we told everyone who knew her what was wrong, in case she wandered off and got lost and confused.

    The reaction was good, but not one person of the dozens we must have told realised how she was going to progress.

    The one thing above all that makes me very angry is people saying.....things like

    "I would visit, but she won't remember me" or "if I saw her, she would forget as soon as I went."

    They don't seem to feel she matters any more, but she is still the same friend or relative she always was and would still like the company.

    People ask how she is and I tell them, I also point out that it is a disease that will cause her death one day, that is always a surprise too..........they are shocked when told her brain is dying and when enough brain is destroyed she will die.

    Maybe AZ is still largely thought to be a psychological rather than a physical disease.

    Kathleen
    x
     
  12. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    I had an incidence that was disturbing when i took my husband to a small local produce show. There was a lady there that was using walking sticks I think my husband tried to take her arm to assist her,he always liked to help people,well she shouted out very loudly "What an imbecilic thing to do" of course this bewildered my husband and we were the centre of attention as people turned to look to see what the fuss was about. I later apoligised to her and explained the situation but she showed no remorse for her remarks.

    We also had less than sympathetic treatment in a Hospital when the technincian tried to pull my husbands track suit trousers down in order to do a ultra sound ,he was in a wheelchair and finding it hard to stay upright ,he did not like her undressing him and ended up on the floor. The heavies from security were sent for and they lifted him from the floor, a situation i think should not have happened i did put in an official complaint but the hospital have defended thier actions.:eek:

    Cynthia
     
  13. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    55
    A colleague of mine once said that it was ok for the person who had alzheimers because they didn't know what was happening to them.
     
  14. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #14 CraigC, Aug 15, 2007
    Last edited: Aug 15, 2007
    Hi Elizabeth,

    You can open a can of worms here :)

    I guess what upsets me most is not the casual comments from people who know nothing about the illness, but people who know dad well, know a little about the illness and kind of write him off. Oh well, he wouldn't know if we visited anyway, he doesn't recognise us. Comments from the unaware and uncaring kind of trigger my anger button, but I've learnt to get over it. The Alzheimers Society make a really good job of raising awareness and hopefully if that drive continues more and more people will understand what people are going through.

    I could write pages and pages about my experiences, but much of it comes down to our terrible history of dealing with mental illness. I really do think things are getting better (as far as peoples understanding goes) and will continue myself to fight for awareness of alzheimers and the consequences it has on everyone it touches. But some people are just not going to change. There are those the care, and those that don't.

    Good luck with your article.

    Just putting my moderator hat on for a second; please can you take into consideration our rules on gathering information for research purposes. These are neatly summarised here and are just to protect our members:

    http://www.alzheimers.org.uk/talkingpoint/discuss/announcement.php?f=12&a=21

    If you like, I'm happy to move this post to the research section for you. You may also get responses from other researches in this area.

    Kind Regards
    Craig
     
  15. MelissaParker

    MelissaParker Registered User

    Aug 11, 2007
    13
    I think you will find that most people, unless they have experienced the illness directly with relatives or friends, understand the devastating effects of the disease. Before this happened I too throught that alzheimers was just a bit of confusion. I have now learnt how devastating it is, how utterly horrific it is for the sufferer and for their family. I have never had anybody make anybody make any upsetting comments to me but people I do discuss it with clearly want to change the subject or don't know what to say. I can empathise with them as that is what I would have been like before I understood what it was really about!

    More needs to be done, the television broadcast of Malcolm and Barbara last week was very difficult for us to watch as we are going through what Barbara went through ourselves at the moment but I cannot help but think that this was a good start to raising awareness of an illness that is becoming more common with an ageing population. Good luck with your research.
     
  16. Elizabeth H

    Elizabeth H Registered User

    Aug 15, 2007
    3
    Thanks, Craig, for the reminder. I'm assuming that, as I've said in my opening message that I'm a journalist writing an article, people will realise that their comments could be used. But I'd like to emphasise that I will NOT be using people's names (real or otherwise) or saying that the information came to me via the Society's Talking Point forum. I've stressed this to the press desk who are kindly finding me background statistics. Any detail that I use, I'm attributing to a "friend". If it becomes necessary, later, to give a name to that friend, I'll make one up. I have no intention of revealing anything personal that is directly attributable to anyone using the forum - my interest is solely in trying to make others aware of the impact that Alzheimer's has on both the sufferer and immediate family. The last thing I want to do is add to the stress of everyone on this forum - I know only too well what they're all going through.

    Thanks, too, for offering to move my post to the research section. I'm very happy for this to happen but I'm slightly hesitant because I don't know how quickly responses are likely to feed back. I'm keen to get my article into print as soon as possible, to capitalise on the raised profile that Alzheimer's is currently enjoying, thanks to the latest ruling on medication and the Barbara and Malcolm programme. However, if researchers can come up with any useful information at a later date, I'd be more than happy to write a further article - perhaps for a different publication - to make use of it. I'm at your disposal on this. I'm interested solely in making more people aware of Alzheimer's, using my experience as a journalist of umpteen years, so anything I can do to that end, count me in.
     
  17. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Elizabeth,

    I have moved your post to the research area. There will still be a link on the main forum and your initial message will have been read by most members.

    The area that you initially posted in is the main support area primarily for supporting carers and people with dementia.

    I hope you continue to get positive responses and am very comforted by your motives. You may also find it useful to contact the society directly who have their own press office and research team. Hopefully they can provided you with some helpful information.

    Kind Regards
    Craig
     
  18. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Most hated for the last four years have been the conversations:

    "How's your Mum, does she still know you???"

    I think after the forgetfulness people automatically assume that people forget who you are. Now somewhere between stage 6 & 7 I get empty eyes a lot of the time..but still she knows me and wants me there, even though empty eyes have happened more and more frequently over the last year, but for those before it was never an issue.
     
  19. janetruth

    janetruth Registered User

    Mar 20, 2007
    563
    nuneaton
    It's like everything else in life, be it illnesses or situations, it's experience that makes for UNDERSTANDING.

    I know little, about a lot of things, but alot about AZ, because my Mum has it and has lived with us for a year.

    I'm not an expert, far from it and even though my 3 Aunties ( Mums sisters) all ended up in NH, with AZ, I was ignorant when it came to this terrible ILLNESS.

    To be honest I didn't give it much thought, I never saw my Aunts ( older than Mum) from one Wedding to the next.

    Now I am living with AZ everyday and I don't expect EVERYONE tp start being aware of it. My family and friends TRY to understand but I know they haven't got a clue, thank goodness for TP.

    I have a friend with LUPUS and another with MS and not many people know the first thing about either of these ILLNESSES.
    Take care Bye for now
    Janetruth x
     
  20. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Hello Elizabeth, I really admire that you are trying to do. The Day Centre that my husband use to go to did no stimulation, activities and they where just left sitting in the chairs (This was not acceptable to me, so I wanted to help the under 65's. I spent so many hours on research. Therefore I handed all my research into the Local Authorities as a foundation for the under 65's. I did not want any credit for it. So the original Day Centre was closed and reset up with all the Research that I had done. Over 3 years later and it is very successful. I did have the support from the local authorities as they realised something had to be put in place for that age group. So although you may get some negative points your way, please do not give in. Carers' who loved ones who attended the new set up thanked me but what really made me angry, I am disabled and they where quite willing to take a back seat. So to me it was worth all the hard work. Best wishes. Christine
     

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