BBC 1 - Tuesday 20th May 2008 - 22:35PM - Mum and Me

Discussion in 'ARCHIVE FORUM: Support discussions' started by CraigC, May 20, 2008.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    the fact is that there is a spectrum ranging from the easy [relatively] to the very difficult [relatively].

    Anyone who has cared for someone with dementia will recognise the things that happen from the film.

    Anyone who has not may glean an idea.

    Anyone who hasn't would probably not watch anything more truthful for a different family. The film maker realised this.

    Many members thought this too truthful, hence the complaints in the thread.

    No one film can hope to cover the breadth and depth of caring.
     
  2. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Dear Anyone
    Can anyone tell me what the purpose of making this documetary was? If it was to bring awareness of the issues relating to dementia? What are the chances that people, currently unaffected by the disease, would actually choose to watch it? Pretty slim, I would imagine. Or is this me just being too cynical! Perhaps the film makers were really just 'preaching to the already converted'? Would it have had more credibility if it showed a range of other peoples circustances, rather than just focusing on one perspective? I think this programme gave too narrow a view of the issues.
    take care
    hendy
     
  3. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    I think I read in a preview that the daughter wanted to show that her mother had still retained her sense of humour despite the illness.

    I could only watch the first 20 minutes, then I had to switch off. I wasn't sure why until I read what someone else has said on this thread - I felt envious of the relationship they all had with one another. My Dad has only been in his CH for 5 months and he doesn't know me any more. I would love to be able to do the things they did together, just talk to him and for him to answer me, for him to respond when I try to hold his hand. I would love to be able to make his room look homely with his things in without them going missing or him destroying them.

    I think anything that anything that publicises this hideous disease is a good thing and the more people know about it the better, but this documentary gave a probably not very typical example of it. I didn't watch the bits that other people mentioned about lack of dignity, but it is so hard to preserve any dignity at all in this disease and people should know that as well.
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    Yes you’re right about that, but then that why it’s up to us the carer to preserve the dignity for them, when they do not have the mental capability to do it for themselves.

    What I am trying to relay to you all is that change has to happen in the future in how we can raise the profile of dementia getting Terry pratchett on board is a positive move forward is trying to get this over to the general public at large , who have a negative perception of dementia .

    They must be loads of people like him & younger who have a dementia are in the early stages that are still living good quality life with medication for AZ
    You got to have a vision for the future by laying the ground work now to make change. Could be done by getting a group of young people who have early onset of dementia, who are taking AZ medication also who have children getting they permissions to follow they life in how its effects they children also .

    show the public how the relationship changes with the parents, the positive side also how they cope with the change , the services that on offer or not how they feel of course it take a lot of courage for the family a very good producer to do it with dignity for the whole family.
    The public know the negative side of AZ when it get to that stage with the incontinent, show it how it can be done in a positive way even with incontinent , so the general public can get an insight into how medication for AZ does work for some people even in the late stage film that .

    OK its only some people the medication who for , but those " Some people " can help raise mover forward the profile of AZ

    I wish I had film the before after how my mother was when she never had medication for AZ then when she was given medication, that what needs to be film , to raise the profile of dementia for the future. Following someone life with a young family will get to the heart of the nation , Just like it did with cancer .
     
  5. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
     
  6. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I agree - though actually I had to look up who Terry Pratchett was..... so he wasn't famous to me as I never read his genre.

    The thing is, it seems that the 'famous people' escape the personal criticism, but the film last week on BBC meant more to me than Terry telling his story [though in truth I haven't listened to him after the 'one' show appearance].

    I think the stories of those at all levels of society who are coping - or not - with dementia in the family are far more indicative of living with the condition.

    I think that the famous names are there because those not touched by dementia are more likely to spot their name and maybe read a little about them and their life.

    Everyone takes different things from each way that dementia is presented, and that, I guess, is good.
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #88 Margarita, May 24, 2008
    Last edited: May 24, 2008

    Because his in the public eye people know him from reading his book so he has more opportunity to bringing more attention to the disease AZ then your father or mine could ever do . I know its not right may seem unfair, but if your father or my father was Terry Pratchett a novelist he to would be know more widely to the public so would also be able to give give it a more high profile attention also donation of one million pound to AZ Research

    http://www.alzheimers-research.org.uk/news/article.php?type=News&id=219
    The money his earn from the public from his books , has made him be able to give such a large donation , am sure if your father had made so much money from the public , he also could be able to afford to give a donation like that to AZ Research , so Terry is just giving back something to the public, for making him what he is today, as they not going to be a cure in his generation & would he have given that donation if he never had AZ campaign , So I don't feel we should see it as a negative .

    But see it as a positive more forward, so more people like your father well also join in the campaign in bring more awareness to AZ .
     
  9. Brunhilde

    Brunhilde Guest

    I have watched the programme twice now. And cried twice over. Tears of envy, tears of joy; tears of hope, tears of sadness.

    So many similarities - so many differences.
    So many shared moments - so many unshared moments.
    So many laughs - so many tears.
    So many hopes - so much despair.
    So much effort made - so little reward.
    So many frustrations - so much joy.

    Jumble that lot up, and you have my own experience of the world of dementia.

    I thought the programme was the best portrayal of dementia on television that I have ever watched.

    One family's experience only, of course. But what is wrong with that? For me, the best way to paint a picture of dementia is with your own crayons, your own pencils, your own brush. It is guaranteed to be different from anybody else's portrait.

    Thanks.
     
  10. rose_of_york

    rose_of_york Registered User

    Mar 22, 2008
    94
    York
    I thought people on this site were supposed to be supportive of carers of dementia patients. I am disgusted at the criticism of Sue and Holly - they are managing as best they can in a situation which I for one can empathise with.

    OK they had the resources to share their experience with the rest of the world via the film and I admire their honesty. Dementia is always disrespectful, to the people who have to deal with it as well as the sufferer. Dementia sufferers are not all "lovely", some of them were horrible before they got ill, and don't improve as the illness progresses. Let's stop being over sentimental - people cope with their ill relatives because they have to, because they love them or because they feel it's a duty. Nobody does it through choice. Sue admitted that she and her mother had not had a good relationship over the years - who can say if she now feels resentful of all the time she has had to spend visiting her mother, especially when coping with her own ill health.

    My mother was controlling and mean with me when I was young and is increasing stubborn and awkward in old age. She has dementia but still lives alone, and refuses any help from Social Services, Age Concern etc. I admit that I do not want to deal with incontinence if it gets to that stage. Am I deserving of the same criticism that Sue got? I wish that I could laugh with my mother like Sue and Ethel could - I'd rather jokingly call her a daft old bat and admit she's got AD than the pretence I have to put up that all is normal.

    Could we have a bit more tolerance please, and if you are giving total devotion to your dementia sufferer, please show a bit more undertanding for those of us who can't.
     
  11. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    The programme showed one part of the dementia road.
    When my wife was at that stage portrayed I found it much easier to cope than what came later.
    The stage shown has no comparison to later stages of dementia when the relationship would be nothing like the one in the film.
    Norman
     
  12. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
     
  13. rose_of_york

    rose_of_york Registered User

    Mar 22, 2008
    94
    York
    Yes and when I am with friends and colleagues I sometimes used sarcasm and dark humour when talking about my mother as it is my only release from the situation. If I couldn't make a joke then I would be miserable all the time and would soon end up with no friends.

    Onlookers often do not see the reality of the situation - people frequently tell me how "marvellous" my mother is because she is good at what the doctor calls "confabulating" - they don't see her when she is accusing me of stealing from her and lying to her or she's sticking screwdrivers into electric points!
     
  14. candymostdandy@

    candymostdandy@ Registered User

    May 12, 2006
    81
    west sussex
    dear rose of york

    i totally agree
     
  15. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Dear Rose of York

    I am very glad that you have been able to have your say. I have often wondered, and sometimes verbalised on Talking Point, about the often saintlike portrayal of those we care for.

    I have learned over the years that many people in caring roles have had very difficult, sometimes horrendously abusive, relationships with those they care for. I have always thought that this is a very special act of love because it is easy to love the lovely. Even though the disease often robs us of the 'lovely' person we have experienced, some people are caring for those who were never lovely. For me this is a special love.

    Best wishes Helen
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #96 Margarita, May 24, 2008
    Last edited: May 24, 2008
    Every one different in how they cope with tension, please don't take this the wrong way in what I say below .

    For me I find the best friends are the one that you can share your misery's with , open up cry in fount of them , give you hug smile & not feel embarrassed about showing an emotion Or have the worry that your depressing them so you can wipe away your own tears & carrying on afterwards , then still come around to your home the next day sit talk & do the thinks that friends do together.

    I suppose really its great to be around someone that has a good humor, but not at the expense of someone misfortunes because of their mental disability.
     
  17. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Dear Helen and Rose,

    What you post is so true.

    My lovely Dee, so clean and fastidious, has gone.

    I would not want to be filmed watching her pass motions on the bathroom floor, or flashing those terrible looks when she doesn't want to do something. My emotions range from bad to worse.

    Maybe if I could joke it would be easier. My anger/confusion/inability to cope fades as I take control of myself. Maybe others express themselves in other ways.

    I would never judge anyone else's caring as I know mine is so mixed with love and my inability to do it well all the time.

    I saw 15mins of the programme and switched off as I was bored. However I have put it on DVD for a carer and maybe I'll try to watch it all through.
     
  18. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
     
  19. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #100 Margarita, May 25, 2008
    Last edited: May 25, 2008

    I know what you mean when you say that its happen with my mother friends . May be I should of worded it different not just said Terry Pratchett , because its not only the famous people with a dementia, that inspire me in breaking down the stigma of dementia, also the campaign for medication . May be your understand where I am coming from when you read this thread .

    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=10904
     

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