Documentary: Barbara & Malcolm

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

  1. Lonestray

    Lonestray Registered User

    Aug 3, 2006
    I echo Barbara's comments that GPs should be better trained to understan AD.

    What I forgot to mention in my post was as my wife lay dying I asked the lady living opposite who works at a NH as senior Nurse to sit with my wife while I went to the surgery (two minuet walk) to fetch a Doctor. When he arrived he asked: "Is she dying?" he didn't approach the bed. "Yes", "At least she's not in pain" he tells me. Somewhat upset "Of course she's not, she's unconscious!" With that he turned to leave :"There's nothing I can do here."
    I wasn't going to ask for a second opinion. But did get another Doctor, the one I mentioned in my post.
    The first one I think would be the kind of 'Doctor' who would tell a patient with a weight problem, they had surplus Adipose tissue : "Could you explain that please?" patient. "Your too fat". "Well I want a second opinion". 'Doctor': "Your ugly with it".

    Sad to say when I later wanted to see a Doctor, when his name was suggested I remarked: "He's not fit to be a vet!" I know it's wrong, but the sound of his name upsets me still. I think, and hope he's retired now.
    PS Jean looks as though she could outlive me, so I have to keep ahead of her by keeping fit. Padraig
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    #62 Margarita, Aug 11, 2007
    Last edited: Aug 11, 2007
    Barbara was full funded 24/7 for malcolm at home with her on the NHS
  3. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Thank you for that useful and interesting link, Margarita.
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #64 Margarita, Aug 12, 2007
    Last edited: Aug 12, 2007
    Your welcome Nutty Nan.

    What I Find interesting and it was not talk about in the program that barbara put her husband in home for 2 years and then took him out, or maybe I am reading it wrong

    this is interesting also
  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Yes, that's right Maggie. Malcolm was in a NH for two years, then Barbara brought him home and had fully-funded 24-hour care.

    What I'd like to know is why he went into the NH in the first place. The article says that all Barbara's support system collapsed. The programme does not mention that. I don't know how that could happen.
  6. zebb37

    zebb37 Registered User

    Aug 12, 2007
    i watched about half of it before deciding that i could stand no more
  7. Lonestray

    Lonestray Registered User

    Aug 3, 2006

    Margarita, It is interesting indeed that she put her husband in a 'Home' just as I did with Jean. He also gave up the will to live. Why did I do it? I try to justify it by saying I could no longer cope without help because like many others have experienced, she'd come out of hospital in a wheelchair and with little speech. She'd walked in with a broken arm after a fall. Even now I'd not leave her in a hospital over night, what's done is done and I've learned from my mistakes.

    I removed her a year later when I saw the damage being done to the both of us. Had to wait on the sale of our home, and to make the new home suitable for her care.

    She deserved a lot more help and support than she got. I understand she got carers to help. What do they do? What do OTs, SW and SS and lots of other people who're meant to support do? I'd just like to know how others cope with those lot. How can you get anything done?

    Maybe Jean and I are getting far too much, what with DLA and the Lower Rate Mobility Allowance, after all she can't move. She might not be entitled to that which means I may have to pay it back. If that's the case I'll still plod on alone regardless.
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Malcom & Barbara - a lesson learnt

    To-day I went to the Care Home with 2 large photo albumns to show Peter. Apart from his 4 step-children and our 6 Ganchildren, he did not recognise his own family. This I found very distressing. On the way out the charge nurse asked if I had watched the programme. Answering yes I had bringing memories of my own experience at home with my husband very distressing. To my amazement the nurse was shocked as she did not know what Carers' do and put up with for their loved ones. Just because they are "medical staff" they do need training in this field. From my local Alzheimers Society, an offer was made for our "Qualified" person to go in and give guidence and training but it was declined. Our Consultant has been brilliant but most of all he was interested every step of the way how I dealt with each sitution. So perhaps the program although very upsetting for those who did watch, hopefully it has helped in raising awareness and getting staff properly trained especially as this illness is going to increase.
  9. sheena

    sheena Registered User

    Aug 4, 2007
    Malcolm & Barbara

    I eventually decided not to watch the programme and asked my sister to record it for me as my husband would possible still be up - he eventually went to bed and I switched on for the last 15 minutes - I found that distressing - not because I could relate it to what my husband would eventually go through but it took me straight back to last November when my father died of cancer after 8 years of illness - there was no difference with the exception that my father for the last two months of his life being cared for in an ex-military nursing home where he received without doubt better care than we could every have provided for him at home - he was a marvellous caring and loving person and deserved the very best we could provide for him - I fail to understand why Malcolm did not have the same.
    I feel the programme would have brought the plight of the carers into the public domain however initially I was going to watch it to see if I could learn anything that would help me with my husbands future care, my sister and daugher both watched the programme and their thoughts were that I would learn nothing from it and only find it distressing. They found Barbara's comments on occasions quite strange especially the one about finding another partner - Malcolm hadn't even gone and felt she should have allowed Malcolm the dignity of being cared for in more appropriate surroundings. She then would not have been so tired and would have been able to spend more quality time with him.
    I know it is easy to judge when you are not right in the middle of a situation and I think everyone is an individual but I feel that in the end it should be what is best for the patient that should prevail and not what makes the carer feel better - I know that was what happened with my dad.
    Difficult one
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    a comment from a friend, after the programme and newspaper coverage:
  11. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England
    I think you are right Sheena when you say that if Malcolm had been cared for in a Nursing home that she would have not been as tired and could have more quality time for him
    After the programme I was filled with a guilt feeling that perhaps I could have looked after Ron for longer but my family and friends assure me that he is in the best place and now that I am relieved of the stress and sleeplessness I can go every other day and have real quality time with him.
    Our local newspaper has been on to me again this morning asking my opinion on the High Court decision as they are doing another piece on the subject. I told them that I thank my lucky stars that Ron was given Aricept from his first diagnosis.
    I still pay £2-50 a day for Ebixa and touch wood he is doing very well at the moment.
    I told the reporter about Talking Point and what a great help it has been to me.
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Good for you, mocha. Keep spreading the word!

    I agree with you that there comes a time when it is kinder to both patient and carer to allow the professionals to take the strain, provided a good care home can be found.

    The problems are a) finding the good home (though I know there are many out there), and b) knowing when the time has come.

    I'm glad Ron is doing so well, you've obviously got it right. Well done!

  13. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    I posted fro the first time on here after watching this documentary.

    In many ways now I have been through a lot of the grief at losing my Mum. When she went into care I knew at the time that I couldn't look after her as my twin sons had jsut had their second birthday and it was hard enough looking after them.

    What struck me was the fear that my Mum, who has already been at death's door once with a UTI may last yet another 5-6 years. Like others while I am frightened of her dying I am also not wanting to see her slowly deteriorate and hang on..but she seems incredibly strong.

    Malcolm reminded me of my Dad who dies from cancer 9 + years ago at the end. But he was Dad until the end. My Mum has mostly already gone, although there is a different lady I have come to love, she isn't my "Mum". For those who care at home it must be so hard. When my twin sons were wee we said that they learnt to smile just at the time you can't cope anymore, so that you now they recognise you and care! Dementia is so cruel as it robs the carer of even this little grace!

    I hope this programme helps educates others as to what a truly dreadful condition this is.

  14. Big phil

    Big phil Registered User

    Jun 27, 2007
    East Sussex
    what did I start?

    Well this has run and run.... I didn't watch the prog. but taped it. I was able to watch about 1/2 to 3/4 hour of it but was too upset to continue. Its all so familiar, so like but also just so slightly different from my experiences.

    I just hope it raises awareness and my step son has watched as he doesn't seem to appreciate what it was like caring for his mother.
  15. chelly06

    chelly06 Registered User

    Aug 17, 2007
    Derby UK
    Unfortunetly i missed this documentery but i saw the adverts 4 it and it had me in tears nearly, esp at the end when she said " i will always love you" so sad :(
  16. nicetotalk

    nicetotalk Registered User

    Sep 22, 2006
    Hi All

    I watched the documentery and though it showed especialy in my mums case the end of this awfull illness. I know that some may not choose to watch it reason being to upsetting and that. But i am glad i did, my mum looked just like malcom at the end aged 62 and 4foot 12 it was awful to see. This should be made publicaly alzheimers is the second killer to cancer and yet there is hardley any funding. More so now everyone including doctors and nurses shoud now in there studying be made to read up and research everything on alzheimers especialy early onset. It should come high in any medical training now.
  17. frederickgt

    frederickgt Registered User

    Jun 4, 2005
    I wish I had a copy of this program,does anyone have a copy I can download?
    want to show some people esp my Bishop.
  18. wendy2

    wendy2 Registered User

    Apr 9, 2005
    Can I say a big thank you to Sue.
    Very much appreciated.

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