Dementia and Families

Discussion in 'ARCHIVE FORUM: Support discussions' started by KenC, May 13, 2007.

  1. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi all,
    A few weeks ago I found out that two of my Uncles who had married into my fathers side of the family had Dementia.
    I had lost touch with these people many years ago due to a family bust up which I knew nothing about, as well as that I had moved to the South of England where I lived for over 30 years.
    I was staggered to learn that even though they had lived a few streets apart from each other for many years, they are now both in the same Nursing home, in rooms next to each other, and yet they do not know each other any more.
    What is more it appears that their families can not cope with outsiders knowing that there is Dementia in the family.
    I find this really sad because my wife and I have always been open about my illness and I have spoken about it at many events and yet it appears in some quarters of our community, that some people are still struggling with the illness.
    I realise that it is not easy to talk about and many do still struggle with it, but
    perhaps we need to start more campaigns to raise the awareness and also make people realise that although this is a horrible illness it is nothing to be ashamed of.

    Best Wishes

  2. lady racer

    lady racer Registered User

    Mar 12, 2007
    northwest england
    I agree whole heartedily there is not enough awareness, if it was cancer people would be more sympathetic and supportive. The fact is people dont learn about dementia until it affects them and then it is difficult to come to terms with. I hope that in the future people will understand more about this illness and support the people who need it . I wish you all the best and hope you find the support you need.
  3. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Ken,
    It seems that any "mental" illness tends to result in feelings like this - wanting to keep it "shut away". There is a sense of shame about any mental illness which is such a tragedy because of course guilt has NOTHING to do with the illness. People do tend to feel it is something to cover up, which, as ytou rightly point out, means that there is less public awareness than there should be.

    Thank goodness for people like you who are such good advocates for ensuring people understand more about this disease.
  4. kayleigh999

    kayleigh999 Registered User

    Apr 6, 2007
    #4 kayleigh999, May 14, 2007
    Last edited: May 14, 2007

    I wanted to add this is similar to what is happening in my family. Mom diadnosed recently with vascular dementia and its a very big secret. Although we have chosen not to tell Mom( she is too far advanced to take it in and understand) I feel her siblings should be told in privicy but none of her brothers or sisters know and that includes one dying of ovarian cancer (my aunt).I then in turn feel unable, out of loyalty, to confide in any of my friends,apart from one, and get their support. That is probably the reason I frequent these boards so much.

    Whilst I do of course respect their privicy I do feel like you said if it was any other illness it would not be hidden. My Mom attended day centre for first time last week and Dad is really worried as one of the close neighbours saw her getting off the transport and is worried he will be asked what is wrong with her. Mom had stroke two years ago and they quite happy for that to be known. I feel its a sad attitude to mental illness and should not be kept behind closed doors like an embarrassing secret, which is the case for my parents. My opinion alone of course.

    K xxxx
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi Ken,

    I think you know by now how much I admire your spirit, and your drive to further Alzheimer awareness.

    Ignorance is not bliss. The more people know about all conditions, the better. The sooner any conditions affecting brain function are talked about, openly, the more likely they will be accepted into the mainstream of health education and provision.

    As it stands today, dementia seems the poor relation, when it comes to research and provision. Perhaps this is because it is associated with old age, and old age doesn`t have a future.

    But the Forum boards have been showing how many young people are being affected, and they deserve a future.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    There has certainly been a major increase in members whose family is experiencing young onset dementia very recently.

    Perhaps one day the high level of incidence of young onset dementia will be properly measured and reported by someone - perhaps AS?

    At present it is the poor relation, of a condition that is itself the poor relation.:(
  7. Helena

    Helena Registered User

    May 24, 2006
    If theres a large increase in early onset dementia it must be in direct relation to something in the environment

    You can have all the genetic risks you like but they need a trigger and in most cases thats an environmental toxin

    Unfortunately any mention of the commonest most prolific toxin around that everyone( but those who actually know the truth )thinks is harmless gets poo pooed

    Sadly AS is also party to the "denial " stakes
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    #8 Margarita, May 14, 2007
    Last edited: May 14, 2007

    Yes it does seem that the Stigma is still attach to it, from back in the days of the 1900s, even thought back then first person to get AZ was only young 51.

    It’s breaking away from old style, thinking I think you would have to educated the generation of career in they 40s and under, that care for someone, with AZ. Even if they are married to them all not

    Like in your age range ken and mine , so they can pass on that passive attitude, that mental disease or any mental illness are not to be feared, or rejected out of socially interacting with each other. Just need more respect.

    With AZ or any dementia, you can reach some people, by saying it’s the memory problem rather then a mental illness or disease by doing that you get they attention in seeking the right help for the career and the person with AZ o dementia . moving on hopefully from the old school days of 1900 that stigma of fear &
    Ignorance’s . they done it with cancer.
  9. connie

    connie Registered User

    Mar 7, 2004
    Margarita, I think you have hit the nail right on the head. Fear and ignorance.

    However it seems it will be a long time before we can change people's perceptions. When, even in the same family, different relatives cannot agree and take on board dementia diagnosis, what chance do we have across te board as a whole.

    Well done Ken for highlighting this matter.
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #10 Margarita, May 14, 2007
    Last edited: May 14, 2007
    thank - you connie

    Yes I would agree, but then I would say that would happen when any terminal illness had been diagnosis ,

    I may get to passionate on this issue, because its very close to my hart, as I know people reaction when you tell them that someone in your family has a mental disorder menial illness mental disease what ever you want to call it. Tell some people what they have been diagnosed with and not only taking about dementia; they look at you in a different light, they whole body language changes as if to say, if I stay to near you I may catch your or they stupidity, , she must have it if her brother has it. The next part in body language is they humor you.

    So for years I stop telling people. I stop labeling him and found people attitude toward us both change. Now my mother I can’t get away with that they yes they both have a mental disorder But can still play they part in Society in interacting with people , even to the great enbarrisment to those around them
  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    When John was diagnosed, he was with me, and understood the diagnosis. We have always told people he has Alzheimer's, and there has been no embarrassment. People have always accepted him for who he is.

    However, I have to admit that for a long time the word dementia made me cringe. I don't know if it's a generation thing, but to me it conjured up insanity, mental institutions, all the awful things that used to happen.

    I do use the word now on the forum, but I still wouldn't use it in conversation. Silly? Probably, but it's still an uncomfortable word for me.
  12. janetruth

    janetruth Registered User

    Mar 20, 2007
    We, as a family, Knew my mums 3 older sisters ALL had Alzheimers in their 'old age' and have since died. Mum is 82 and was diagnosed last November For many years she would say, it was because they only had one child, there are six of us (all girls).
    Our Aunts all ended up 'Being put away' thats what mum would say to us and I think that is her worst fear. I have explained that Care Homes are nice places now and they don't lock people away.
    When she first came to live with us, if a white van parked outside , she would say 'Have they come for me'.
    The word Alzheimers is not used in front of mum, though she mentioned it when she returned from Day Centre. She said 'They were talking about Alzheimers today, I wont get that, I've got a big family'
    She is on Reminyl, which has helped, I tell her it's her memory tablet, she says ' eveyone forgets things when they get old'.
    It's my mums fears and ignorance not ours, so yes, it should be talked about and people should be more aware. IT COULD BE YOU OR YOURS This terrible ILLNESS has no preference to age.

    Take care Bye for now
    Janetruth x
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    My husband knows he has Alzheimers, but if he thought for one minute he had dementia he would die a thousand deaths.

    I remember a friend of my mothers who had a `mentally handicapped daughter` [that was the terminology used in those days]. She told people her daughter was Autistic, a much more acceptable label, in her opinion.

    But my husband still cannot accept his Alzheimers is a permanent and progressive condition and often says he is better now,[meaning he has recovered] or, like Janes mum, thinks he`s really not bad for his age.
  14. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    It took me a long time before I could use the word "dementia" in relation to my mother, not only because it's not a diagnosis that one doesn't want to think about but because it doesn't entirely accurately describe my mother, at least as it is used as a general term. She has very specific deficeits, but also areas where her abilities are untouched (she can still tell you how much change is due before any till can calculate it, but only if she can remember the bill handed over and the price paid, which is problematic). Her situation is different to many: the strokes caused fairly specific brain damage. Unfortunately when you mention the word "dementia" to most people, the feeling is that this will inevitably get worse, ending up with the person deteriorating to the point where they are completely unaware of their surroundings and then finally dying. At my mother's age, though, I'm not sure that that is inevitable.

    The dying, yes, but the process of getting there has the potenital to be highly variable. It's true she's unlikely to be run over by the proverbial bus, but being 89 with a dodgy ticker and hypertension, living in a comunal living facility she's at least as likely to die of a heart attack or pneumonia. If I was a betting woman, my money would be on another stroke though, although I have to hope that in that case it's a massive one.

    The point I'm trying to make in my rambling fashion is that uncertainty is the name of the game, and that while labels can make it easier to get help sometimes, they can at other times do people a disservice.

  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    My problem is that although John was diagnosed seven years ago with Alzheimer's, and this is the term I have always used, his diagnosis has now been changed to PPA.

    Very few people have heard of this, it is a comparatively rare form of dementia, so to avoid lengthy explanations I still use AD. The only PPA forum I have found is in America, and even there it gets very few posts.

    It would probably be more appropriate to use the word dementia, but I still can't bring myself to use it in relation to John.

    On the forum, there are so many different forms of dementia represented, so it seems appropriate to use the term in a more general sense, unless the poster refers to the specific disease they are dealing with.
  16. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Just felt I should share in this post. My husband was wonderful in becoming open about his Alzh. although he did need a few months just to come to terms with it.

    I have so admired the way he has openly told his friends and everyone around him - but equally I respect those special people who just treat him just the same and have become very important in his life as well as mine. Yes we have had friends 'drop away' because we can no longer have the same sort of social life, but the new and understanding ones are true friends.

    It is nothing to be ashamed of - so how do we convince those who want to hide themselves away - thus causing their friends and colleagues to misunderstand them?

    However we have always said the word 'dementia' gives the wrong impression - if it were classed as a 'brain disease' as in heart disease, kidney disease, etc. - maybe there would be less of a reaction.

    Take care all Beckyjan
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #17 Margarita, May 14, 2007
    Last edited: May 14, 2007

    With my mother up bring, any form of talk about memory lose bring up, nerves breakdowns and into the a mental institution went her brother when he had a breakdown and her mother also when her diabetic was not control and got dementia.

    Mind you I only found out in what hospital they both died, what my uncle died of was cancer when I read they death certificate.

    My mother sister was a full time nurse; also look after her mother till she got gangrene in her leg, she never really study any thing to do with the mind and in those days they did not know of the link with diabetic and dementia leading to AZ ., so the only place they could accommodate my grandmother was in a mental institution. So that is why my mother is so scared to go into any home, that people are in the last stages of AZ, because it reminds her of her mother brother and the people in they when she use to visit.

    I was never scared of them when I use to visit my uncle when young I would sit with them, when they keep looking at me I would walk up to them and talk smile.

    So I can say Alzheimer's, in front of my mother, because she has no knowledge of what it is, so when I tried to tell her what is was. I could only compare it to a cancer growth in her brain to try to make her understand, when I told her she forget who I am, of course she told not to be so silly.

    I cannot blame her as I never new also that they was a disease like Alzheimer's and until it happen to my mother that she does not know my children or I then I will fully believe that this disease can do that to her.

    I take one step stage at the time with this disease

    But I am still young so I can learn. Mum can’t because the disease won’t let her retain new information
  18. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi all,

    I often talk to a gentleman who used to be a farmer, who like myself has Dementia with Lewy Bodies. He always talks about the old days where people who were ill used to disappear from the commuity, he now realises that they had the same illness, although in those days I think it was treated as madness by many. He is terrified that the same will happen to himself, and It seems that no matter how much I try to talk him round, he still has the memories of the old days stuck in his memory. As it has been said on many occassions there is still a lot of stigma where this illness is concerned and it will take a long time to get round it.

    Perhaps that is the problem as far as my two Uncles are concerned, it was and still is stigma in many old villages. But it is sad because the people who know the two gentlemen must wonder what happened to them.

    Best Wishes

  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    You're right, Ken, and it's not just in old villages. The stigma still exists in many places, and it's only thanks to people like you that we can overcome it.

    Keep up the good work.

  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    #20 Margarita, May 14, 2007
    Last edited: May 14, 2007
    Yes that word madness, is what my mother most feared, only because of the stigma attach to it from her friends, I never forget when my uncle died, my mother said that in the supermarket she meet a friend, who told her sorry to hear about your brother dieing never mind he was mad anyway, my mum got so angry, that I thought she had really gone mad, madness, now older I can understand where she was coming from in not wanting to talk to that woman anymore, mad is a very casual word use world wide, but has a lot implication stigma attach to it that has affected many people life , in shaming them , my psychotherapy that I saw after my father died and my mother got AZ , made me recognize my past , saying that living with someone , as I did with my brother , then left when I could not understand the madness , the sigma that was attach to it , was a normal reaction . He using that word was so much of a relief to me , because he understood, not in a stigmatic way.

    So then when my mother got AZ again I was face with the stigma attach to it. So I say now to anyone that gives me they negative attitude with dementia AZ, I would love to say :) live with my brother and you know the different in mental heath disorders, but I am carefull as I do not want to come arross rude , just because someone does not undertand .

    It be me losing balance and going really mad breaking down mentally
    ( Paradoxical is that really madness :) )
    if I don’t recognize what is happening around me, my mother has a disease of the brain not I.

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