Documentary: Barbara & Malcolm

Discussion in 'Dementia-related news and campaigns' started by Big phil, Aug 6, 2007.

  1. Big phil

    Big phil Registered User

    Jun 27, 2007
    12
    East Sussex
    This week .. Wednesday I believe there is due to be shown a documentary about a woman who allowed her husband to be filmed during his 'journey' through the Alzheimers experience.

    Is anyone else out there fed up and constantly upset by the number of times the trailer for this programe is shown??

    Like many I am now on my own, my wife being in a home for 5 years now. I cope by being able to block out the pain most of the time, not be reminded almost every time I watch TV:mad:
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,098
    Kent
    I am Phil, but for a different reason. I`m upset because my husband is sitting with me and I freeze, because if he doesn`t know now, I don`t want him to know what his end will be.

    I am trying to avoid that Channel until after Wednesday.

    Take care xx
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Phil, I'm sorry you're finding the publicity for the programme so upsetting. I can understand that every reminder will be painful for you.

    But we really do need all the publicity we can get, if people are to take the risks of Alzheimer's seriously, and money is to be provided for much-needed research.

    I think the programme will also be of benefit to those of us caring for much-loved relatives who have not yet reached that stage, although it's going to be painful for us to watch.

    It's swings and roundabouts really. It's going to be painful, but any publicity can only be good.

    I have huge sympathy for you. The programme will soon be over.

    Love,
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Double edged sword - we need all the publicity we can get for this dreadful desease, especially early onset (under 60)

    At the start of the last program about Malcolm and Barbara (1999) she spoke frankly about how this condition and how it affects everyone involved.

    I have sat and watched the old recording today in the care home, and so many of the staff popped in to see bits, and have now asked to borrow my copy, before this weeks new program.

    I am sorry that you feel as you do, but I admire the courage of both Mr & Mrs Poynter, and will need to watch the rest of Malcolms journey.

    We need to know more, and public awareness has to be raised, if only to stop the general perception of:

    "well it's only loss of memory in old people". My dear Lionel is completely bed bound , unable to do anything for himself at the grand age of 65.
     
  5. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Turn off

    I know it will be far too painful for me to watch so I will hit the 'off' button or find something on another channel. I expect next week lots of well meaning 'friends' will fill me in chapter and verse whether I want to hear or not. I also expect them to become overnight 'experts' on the disease. Still as they say, all publicity is good publicity!!

    xxTinaT
     
  6. Big phil

    Big phil Registered User

    Jun 27, 2007
    12
    East Sussex
    perspective

    Thanks for all the replies, but lets not loose the perspective on this issue... I have no objection to the documentary, indeed I also welcome anything that shows 'joe public' the real suffering this disease brings.
    How many us us have, (will) become heartily sick of hearing....."I know how you must feel, my auntie had it and didn't remember me when I used to visit" etc etc...
    Well we here all know its a whole different ball game when one lives with it 24/7.

    I did not see the first documentary as at that time I didn't want to know, or show my wife what was in store for her. It seems particularly cruel when it affects people in their younger years, in my Wife's case 55, she now is still only 63 and has been in a home for 6 years.

    Finally its not the docu. but the barrage of trailers that I find so upsetting.
     
  7. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Have a bit of mixed feelings about the documentary. However from the point of view that although my husband was only diagnosed last April with AD I am sure we have lived with this illness for about 4-5 years in total. Perhaps watching the documentary (without my husband - I think a lot of it he may not take in but if he did could devastate him) it may help me on this journey we are both on and it may help me to be more prepared than I was when the diagnosis came and help me find other coping strategies for the next phase, which I think we have entered as over the past weeks I am sure there has been a dip in his condition. Probably will decide at the last minute. I agree the raising of awareness is the important part of this documentary - but hope there aren't too many of those looks - you poor soul living with someone with AD and I feel so sorry for you - doesn't help me one bit as normally I put on a very good front - at least in public.
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sorry Phil, from your comments:
    I now realise what you meant. As I do not watch very much TV (my choice) I was not really aware that there had been lots of "trailers"., and I would agree that this could be quite upsetting and/or irratating. After all you can avoid seeing a program at an advertised time, but "trailers" or adverts pop up anytime I guess.
     
  9. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    236
    Hereford
    This is one programme I shall not be watching. Why? I'm sick and tired of all the talk and writings I've heard over the years, nothing ever comes of it.
    I'd be more interested, if it was about someone from a working class background on a Council Estate, struggling to care for a parent with AD whilst also trying to balance work with rearing a family. It would be good to show the struggle it is to get proper support from SW, SS, and LAs.

    AD hits the news only when it affects those we call 'Celebrities'.

    Sorry for the rant, had a very poor nights sleep, still had to be up at ten to five, do my run and have Jean ready to take to town as I had a dental appointment. My day's messed up. Padraig
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Can understand the rant , and hope you had a better day.

    It is a shame you never saw the original program. You would have seen that Malcolm was an ordinary man, not a celebrity, and they struggled the same as someone from a working class background.
     
  11. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    Sorry Phil, that the trailers are getting to you. I understand and know what you mean. It is the televisions way of promoting a programme, and because it is so close to us, it is irritating. There are many programme trailers that needle various groups of people, but because they do not affect us, we only see them as trailer adverts. I want my children (grown-up) to see the programme, to see what we as carers go though. I feel sometimes that because they only see / have Susan for a few hours during the day, once a week maybe, they certainly do not have the worse. I don't want to sound selffish, but (not just in my case) my relatives think oh you're doing alright, "she's" always clean, smart, feed and seems cheerful enough. They don't have the scene I just had, and I'm a lucky one. Susan asks for help, I start to help and within 5 seconds I'm being threatened. Pushed a little and don't you touch me. I'm not doing that with all those others there. (no one else in the house) :confused: So I walk away. This is not once a-week or once a-day event but several times in the day. I know it is the trailer you speak of, but it needs publicity and trailers help provide that.
    cris
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    #12 Brucie, Aug 7, 2007
    Last edited: Aug 7, 2007
    Padraig, did you not realise that the reason that Malcolm and Barbara are regarded by you and perhaps others as 'celebrities' is that, as ordinary people, they agreed to be filmed, so that their situation - and that of many thousands of others - could be made better known to the public at large?

    If they had not done that, they would never have been so widely recognised for their courage and wish to help others.

    I hope your day improved as it went on. :)

    I do agree with what everyone has said about trailers - generally. Far too many, and too many featuring channels other than the one the view is watching. I get particularly peeved at the BBC, whose use of trailers now is more annoying than the adverts on the commercial channels. The BBC will also put a trailer on when a programme is due to start, thus delaying the programme by several minutes.
     
  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    http://blogs.manchestereveningnews.co.uk/ianwylie/2007/07/malcolm_and_barbara.html


     
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    As soon as someone puts themselves in the spotlight, locally, nationally, even on a forum, they have to endure 'celebrity' status. Whether it's Warhols' fifteen minutes ...... or whether it proves to be the longevity of something inspirational to many others .....

    Padraig.... I would never dare speak for you ..... I have too much respect for you than that .... but I have to incline to the view that 'celeb-ism' makes for good books and TV .... while those who struggle against adversity get a poor shot ..... and I get very cross and angry that 'Alz'/dementia has only been portrayed by the media of TV from the 'middle-class' suffering .... Tony Robinson and his mum, the Cambridge publisher and her daughter last year who moved me to so many tears .... the Pointon story - from what I have known, seen and previewed so far -is another stance on the 'But he / she had such a brilliant mind' stance .....

    Well my mum was never 'brilliant'.... she was never rich, gifted, talented .....

    Nor am I.

    This is an ordinary struggle against an extraordinary backdrop of odds.

    There are people suffering far more ..... with you all the way, Padraig, and let's stop pretending this a disease which only afflicts the middle and upper classes only ..... that is not devastating to 'Joe Public' ... who has never had the opportunity to enjoy an education ...... a stable family ...? They battle against odds like some people have no conception of ......

    Well, perhaps some people find late in life what suffering is, eh? And what the beauty of unconditional love is too. Oh bless, they never knew it before and we have been gifted it.

    All my love, Karen, x
     
  15. mandyp

    mandyp Registered User

    Oct 20, 2004
    150
    Glasgow
    Hi all

    Well, I've watched the documentary and did find it (unsurprisingly) upsetting. I can't bear the thought of seeing Mum deteriorate like that.

    I hope that it will make people think, but like Tina rather suspect that tomorrow I'll suddenly hear from the overnight experts. No doubt they will all have decided what stage Mum is at and what's in store for me.

    I hope that it will bring more to the public eye and something will ultimately be done for both carers and sufferers however I suspect that we've all been here before:(

    People will tell me how appalling it is that little is done, however, nobody will get up off their rears and do anything about it.

    It was a brave decision of Margaret to allow this film to be made and I hope that some good will come of it.

    With regard to Malcolm and Margaret coming from a Working class background or not, I think that this film demonstrated that no amount of money or status will help people to deal with the emotional upset that AD brings (amongst many other things). If I won the lottery tomorrow it wouldn't bring Mum back, although I daresay care costs would no longer be an issue.......unfortunately I don't think any amount of money would help be anything other than working class:)

    I doubt I'll get a proper sleep tonight after watching it, I hope Dad didn't watch it.......I certainly hope those with some clout lose sleep over it and sit up and take notice of all the fantastic people out there whose lives have been ravaged by this awful disease.

    That's me off for my sleepless night:)
     
  16. KenC

    KenC Registered User

    Mar 24, 2006
    913
    Co Durham
    Hi all,

    Both Janice and I watched this tonight, and it was hard to see who got the most upset.
    It was a very moving and harrowing story, and I think it will show everyone else how much goes into caring for a loved one.

    This goes to show that carers are a marvelous group of people who work under incredible conditions, saving the country millions of pounds with little or no thanks.

    I think it really hit Janice tonight as it brought home what the later stages have in store, and to be very honest I know that I will not know much about it but it still terrifies me.

    Best Wishes

    Ken
     
  17. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Ken, there was a quote tonight about being brave and calm ... you surpass any of those comments ...... you constantly amaze and inspire me......

    Margaret deserves the accolades for her sheer honesty throughout if nothing else ....... brilliant, moving, thought-provoking stuff ......

    Confess I found the generational stuff the most poignant .... a mother threatened with the potential of seeing her own child die of dementia before her own 'demise' .... and the wonderful, wonderful joy of 'dad' still being able to make music at the dining table with a few pieces of cutlery and crockery ....

    'Hang on to those moments' stuff .......

    Much like Mandy, feel sleepless, and somewhat disturbed ... but glad I watched ....
    in a kind of 'wish I hadn't felt drawn to watch it' kind of way ......

    Love to everyone who was moved by the programme, in whichever way,

    Karen, x
     
  18. Petrus

    Petrus Registered User

    Aug 7, 2007
    61
    Northumberland
    What Does the Pointon's Documentary Teach Us?

    My wife (J. 62 yrs.) has reached in 1 year about the situation that Malcolm reached in 5. Much of the first hour of the documentary parallels our situation - with some divergence in detail and emphasis. I suspect that the remainder of J's life will be somewhat different since we have taken a different view as to how we will manage her as the disease tightens its grip on her.

    Combining our experience with the documentary, I propose the following lessons that could be of use to those who research the disease and its management:
    1. We need consistently good diagnosis and care management from both the NHS and the Social Services. To date we have had excellent support in every respect (except financial, but that is another story) meeting just about every one of the recommendations in the recent National Audit Office report. Clearly this is not common.
    2. Social services need to ensure that carers have the necessary basic skills to care. They spent over 4 hours with J. and me both convincing themselves that I was not a stero-typical male and really could cook , clean, do the laundry etc. and that I had guidance on how to keep J. involved safely.
    3. Social Services need to help the carer recognise his/her limitations and determine how to provide training and/or support. I am amazed at the difference between the requirements and inspection of a Care Home vs. the laissez faire approach to non-professional carers. When I worked with our care manager to prepare our care plan, I spelled out where I thought my ability to care for J. at home would end. This led to the acceptance by me and the family that she will need to go into a Care Home at some stage, even though shortly after disease diagnosis J. begged that we never do it.
    4. There is a need for research and training on how best to enable sufferers to maximise their enjoyment of life. Malcolm retained the ability to play the piano (and play percussive rhythms) until the disease was well advanced. Did the music therapy help? J. had lost her professional writing skills at diagnosis and has now lost her professional painting and embroidery skills. The NHS and social services staff all felt (but did not know) that professional support would have enabled her to keep these latter skills for longer, but no such help was available - and I could only encourage, not help in any practical way.
    5. Carers need help to manage the project of caring. I find that I call on my senior business (project) management skills almost daily. I find being able to separate managing the project from handling my emotions is crucially important for my ability to care and retaining my sanity. Experts helping me tell me that this is a major stress point for most carers.
    6. The interactions between outside support and carers needs to be made much more carer-friendly. Any business that interacted with consumers the way the governemnt systems (NHS, social services, work and pensions) interact with carers would be out of business in very short order (and, in my experience, those who do the interacting know it only too well). For example, when I was told by our Care Manager to get the help of the Citizen's Advice Bureau to fill in the form for Disability Living Allowance, I bristled that someone who spent 6 years at Oxford really ought to be able to fill in a form. I did; but the mental gymnastics and brevity required were not simple - I saw why she made the recommendation.
    7. Carers need help to plan ahead and deal with crises. We have benefited enormously and in practical ways from being very open with family, friends and neighbours (I went and talked with them one family unit at a time - including, at the parents' request, with one unit with a couple of children who live in our small street). We have clarity with the consultant, nurses, social services and GP's practice as to who we go to in an emergency - and have used it successfully on one occasion. We have an emergency plan written with key phone numbers always to hand. Our county has a scheme whereby we have a sticker on our entrance doors and key information in a tube in the fridge. In another county where we spend significant time we learned that no such thing exists and the Dr. surgery took over 20 minutes to provide addresses and phone numbers of local NHS facilities - we had to look up precise locations for ourselves. Jan (reluctantly at first) wears an international medical tag on a necklace - this was something we had to research for ourselves - everyone we talked to said they existed and it was a good idea, but nobody knew how to access one.
    8. Carers need help with key documents - enduring powers of attorney, living wills, how wills should be drawn up with respect to joint ownership - especially of property, etc. We knew about these from helping my father and mother some years ago and had excellent professional support from our family solicitor. Many people will have no idea what is needed. Web site and other such material is useful but will not reach many of those who need the help. Face to face discussion and reminders will be needed. Again the care manager is essential.

    It is good that research is on-going into the trigger(s) of the disease. This is the way that truly effective medications will be found (save for some serendipitous event). In the mean-time, considerable research and effort is required in these highly practical areas. It would be good to see pressure being applied for such research and structural support to be organised and carried out; the return on investment surely would be huge.
     
  19. wendyb

    wendyb Registered User

    Apr 17, 2005
    16
    yorkshire
    documentary

    hello all

    this is the first time i have posted again for about 3 or 4 years i think. that was when my dad was first diagnosed at 61. i just watched the documentary, (suggested to my mother to dissuade my dad from seeing it , dont hink he could cope with it) and found that it was trickier for me than i had imagined. sometimes people would like to have a crystal ball to look into the future, i think this is the occasion when its the last thing you want to see even thought you sort of know what is going to happen. I cant bear the fact that this is going to happen and i feel so helpless to do anything about it. i.

    the thought of 15 years of watching someone you love being eaten alive is almost unbearable and i just hope when it gets worse its quicker for my dad. why does the body hang on so long.

    Like others have said already i hope those who make decisions about care are also up at 3 in the morning like me, but thinking about the role and duty to society that they hold and arrive at a conclusion to do something about it tommorrow. barabara is right, anything is possible if there is political will .

    it was harrowing but neccessary .

    I do look on the site occaisionally and its comforting to recognise names and stories ,even though I havent joined in much. thanks for being there. I feel better already and ready to fight another day. goodnight

    wendy
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #20 Margarita, Aug 9, 2007
    Last edited: Aug 9, 2007
    I am glad I watch it , it really brought the harsh reality in what going to happen with my mother , only one of my daughter watch it with me , while my mother was asleep in bed .

    Barbra brought up some really good issue , that have been going around my mind , about giving medication and did not want to keep john artificially alive , where upon my mother is on medication last stages of az {exbixa}.

    My daughter and I was just so shock to see John in those last stages , John show so many , so many symptoms that my mother had , just before john was put in his first respite & after he went home , that was the stage my mother was given exbiza .

    John was given medication in respite that if Babara had not taken him of it he would of not been able to walk , where my mother was given exbiza

    Then that when Babara later on in the program said she did not want to keep john artificially alive , because she said her John died years ago hitting the nail on the head in what I feel has happen to my mother .Its like I am seeing a artificial Version of my mother, but now I don't can't & then I do that why I have so many mix feeling about medication exbiza .

    While I was told yesterday by doctor it would be inhuman to take my mother of that medication exbiza now, now I see his point after seeing john in those late stages near the end .

    Believe me when I say , that never in my wildness nightmare darkest hour could I have believed that AZ dose did what it does to a person , until I saw john .

    They say when you see on person with AZ you only seen one , that a comfort to me now after seeing john . I pray that’s saying true for my mother sake
     

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