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Carer on TV - Carers UK Forum

Carer on TV

Share information, support and advice on all aspects of caring.
Malcolm and Barbara: Love’s Farewell

The newly extended version of the BAFTA award-winning documentary Malcolm and Barbara: a love story will be broadcast on Wednesday 8 August, ITV1, 9 – 10.30. This heart-rending film follows Malcolm’s journey from being a highly skilled composer, husband and father to the last years of his life.

Barbara has spoken very movingly about her life with Malcolm at Carers UK events and is a great campaigner for carers' rights.
will have to watch
Thanks Gavin for letting us know when this will be aired. I did watch the 1st documentary in 2002, which was extremely moving and heartbreaking. I'm aware that this is going to be Malcolm's final hour, so I would warn anyone who is going to watch it to be prepared as I'm sure that for many it will get too much. I shall see how I feel around the time its on whether to watch it or not.

Take care
Maryann x
The love devotion & care of Barbara takes your breath away, because of her care Malcolm was able live, as long as he could....I am sure it will be heartbreaking and moving, they are both remarkable & inspirational people

I didn't see the first documentary
It was very sad to watch, but on the positive side, Alzheimer's disease was discussed informatively and honestly, both Malcolm & Barbara are both remarkable people, I learned so much about Alzheimers and the way Barbara worked tirelessly for the sake of her husband's health. I am sure that under her excellent care Malcolm lived as long as he could for 15 years.

Again what moved me was the words of Barbara toward the end of the film, she said that the goodwill of Carers are exploited by the powers that be, they know that we won't give up, money is available for good care to the most vunerable sectors of society, but she hasn't seen it, she mentioned that Carers save the treasury £57 billion a year, more than the NHS budget, something ought to be done to help the most vunerable members of society - I found her comments so selfless & courageous, She was also awarded an MBE for her services to Alzheimers.

What angers me is that there was a distict lack of help, the poor lady had to struggle all alone - I find this disgusting! Is this the way people treat human beings?
Alzheimer widow's care plea
By Barbara Pointon 10/08/2007

Barbara and Malcolm (ITV)



It is a bleak statistic - one in three of us will eventually suffer some form of dementia. Bleak for the sufferers, bleaker still, perhaps, for their families...

Barbara Pointon's very personal agony moved millions to tears on Wednesday night in a groundbreaking TV documentary of her 11-year struggle with her husband Malcolm's Alzheimer's disease.

Today, as the High Court rules on a decision by the National Institute for Health and Clinical Excellence to restrict access to vital - but expensive - drugs, Barbara, 68, explains why we must also do more to help the thousands of loving, but long-suffering carers...


'Ten close friends and family members came to my house to watch Malcolm's documentary. I needed them with me. We drank wine, ate nibbles and passed around boxes of tissues.

Since then I've had so many lovely messages of support, and it means so much to feel so many are rooting for me.

Life since Malcolm died in my arms in February has been strange. At first, the feeling of relief and release that my husband had been set free of his suffering meant I couldn't cry.

A month later we held a wonderful memorial concert for him, with classical music, jazz, pop, singing and tributes from many former colleagues.

That afternoon, sitting among 300 people, the Malcolm I knew before his illness was recreated. Suddenly I faced the enormity of what I had lost - a fantastically creative, funny, loving and affectionate man. That's when my crying period began.

I'm over that now, although I still feel desolate in the mornings. These days I remember all the amusing things he did and have flashbacks to our many happy times.

But now I have to look forward and work towards a legacy for Malcolm, which means trying to help the carer families who will come after us.

I've been invited by the Department of Health to join a group of experts to help plan better dementia care, which is good news for families. I'm thrilled to be able to do that for Malcolm.

There are 476,000 carers in the UK today, working constantly, tirelessly, selflessly. The least we can do is look after them. Firstly, they need free and flexible respite. Considering carers save the NHS £57.4billion each year, they have earned the right not to pay for breaks from caring. And dementia carers are on duty 24 hours a day.

But respite shouldn't just be about shipping the patient away to different places, especially when they become too frightened to leave home. We need more replacement care at home.

At one stage, I desperately needed a good night's sleep as I had put Malcolm to bed 15 times a night as he kept getting up.

We must also improve the education and training of people who help dementia patients.

The study of dementia isn't compulsory on doctors and nurses' degree courses. We already have dedicated nurses for diabetes, asthma and heart disease. Why not vital dementia care?

Today, over 700,000 people in the UK - and one in five people over 80 - have a form of dementia. This will soar to 1.7 million by 2051. We need to be sure that the people who help us care for a relative are trained to cope with perplexing behaviour.

And care should be consistent. Malcolm had 14 different carers in eight months - none of whom were dementia-trained. Would you like your underwear to be taken off by someone different each time?

I also want to push for more Admiral nurses - special nurses who would do for dementia patients what Macmillan nurses do for those with cancer. They could advise home carers, care home staff and hospitals.

The whole care system needs to be simplified. I had to wait four months for an essential hoist to help Malcolm stand because health and social services rowed about the budget. Carers get ground down writing letters and making phone calls to so many different agencies. Carers also need financial help. Looking after someone with dementia impoverishes a family, as so few meet the high eligibility threshold for state help. Most of dementia care is funded by families.

Yet care costs are extortionate. People with dementia need 24-hour vigilance, but agency staff can cost £15 an hour. Agencies take a large slice of costs for themselves, on the back of people who are sick and vulnerable. We need more non-profit care.

And, of course, we need better access to drugs so Alzheimer's patients can operate at a higher level. What's good for the patient is good for the carer.

In cases such as dementia, doctors need to work in partnership with carers.

My friend's husband insisted to his GP that all was fine. But when she went to the surgery, to discuss her husband's changed behaviour, the doctor said patient confidentiality prevented him from talking about it.

Perhaps most of all, carers need moral support and a shoulder to cry on.

The furore over the documentary and Malcolm's death bed scene has taken a lot out of me, but I still feel Malcolm's with me, looking over my shoulder and saying "Go, girl".

I dearly hope the programme has a lasting influence on people, and helps improve things for carer families coming after us. That would mean my husband didn't die in vain.'

The Alzheimer's Society Dementia Helpline number is 0845 300 0336 or visit direct@fordementia.org.uk.


BARBARA'S 10-POINT WISH-LIST

Free and flexible respite care.

Extra training and education for doctors, nurses and care professionals.

Simplified care system.

Appointment of special Admiral nurses dedicated to the care of dementia patients in the community.

Better access to drugs - what's good for the patient is good for the carer.

Moral supp ort from voluntary sector.

Financial help for carers - and more non-profit care.

Par Tner Sh Ips with doctors

More moral support from the voluntary sector

Meetings with other carers to share ideas and friendship.
Hi Lola,

I to watched Barbara & malcolm & like you said even though it was very sad it was very informative & honest. I didn't know alot about Alzheimer's disease but the way Barbara cared for the man she loved just goes to show that its the tenderness & love that see's you through day after day.
I just wanted to say I agree with everything you said!!
Take care Deb x