Saturday, 7 April 2012

Letters From The Edge

'I'M SCUNNERED with folk asking how he is," reads the letter.
It is from a woman who is caring for her father, who has dementia. “Nobody ever asks how I am. I am an exhausted, nervous wreck of a person. Each excruciating day that passes scrapes another welt in my soul which is now blowing in tatters in the wind.”
The letter, from a carer in the Highlands, is one of dozens received by Tommy Whitelaw, a 49-year-old Glaswegian who four months ago set off on a tour of Scotland to raise awareness of dementia – a condition his own mother suffers from – and to seek out fellow carers. The response still stuns Whitelaw; strangers volunteering stories about their despair and isolation, their sense of inadequacy, their lengthy battles to get official help. Some have given up their jobs to become carers, while a number have had to use up their savings.
“There are so many heartbroken people out there, of all ages, who are caring for their loved ones,” says Whitelaw. According to the charity Alzheimer Scotland, some 82,000 Scots have dementia, 3500 of them under the age of 65. The number is expected to rise to 164,000 by 2036.
Whitelaw will hand the letters over to Nicola Sturgeon, the Deputy First Minister and Health Secretary, at Holyrood on November 10. Sturgeon officially opened the Alzheimer Scotland Dementia Research Centre, in Edinburgh, in September.
He will also give MSPs a screening of his short film detailing the scale of the problem facing those who care for people with Alzheimer’s.
In the film, Whitelaw – who before he began to care for his 72-year-old mother, Joan, toured the world several times, selling official merchandise for such groups as U2 and the Spice Girls – says that Celtic Park, Ibrox, Hampden and Fir Park would together not be enough to house all the sufferers, their carers and their families.
At his home off Paisley Road West, Whitelaw tells how his life has changed over the last four years. The strain of being the sole full-time carer for his much-loved mother shows on his face.
“I’m doing the very best I can to care for her, but what I’ve come to realise is that everybody else is facing the same struggles, fights and dilemmas as I have. There are so many Thomases out there, many of them with a harder time than me.
“I have often heard professionals say as their first reaction, ‘Don’t you think it’s time to put your mum into a residential care home?’ That hits me hard. I think their first reaction should be, ‘How can we help you?’
“I’ve been waiting for 11 weeks for someone to assess my mum, so I can get help with her personal care. I know I’m not alone in that. I’ve been waiting seven weeks for an incontinence adviser. I understand the problem is one of under-staffing.”
Whitelaw has had an “amazing journey” since doing his walk around Scotland and believes he can now speak up on behalf of other carers, and the struggles they face.
“I’ve been overwhelmed by the carers I have met – husbands caring for wives, wives caring for husbands, daughters and sons caring for parents – but behind their stories are difficulties similar to mine. But I’m broken-hearted by the sheer scale of the problem.
“My only fight should be with dementia, even though that’s a fight we’re not yet capable of winning. We don’t have a way of taking the dementia away and making my mum remember who she is, or remember who I am. It’s a huge fight on its own, but many carers also have to fight to get the correct advice or medication and, ultimately, to get the right help that will allow my mum and others like her to endure this with as much dignity as possible.”
“There are success stories out there about people who are doing an amazing job, but I don’t see too many carers who are getting the right guidance and help they so badly need. Trying to care for a loved one at home is like trying to do a jigsaw blindfolded. There are always pieces missing.
“The picture is fractured. You find yourself speaking to a doctor, and community psychiatric nurses, and social workers, and everybody says, ‘It’s not really us – you’ll have to approach the others for that’.
“Like other carers I do my level best to care, having had to learn the hard way about how to do things. But I have a feeling that the system will beat me before dementia beats my mum. I’m tired of hearing people saying, ‘Sorry, that’s not my department.’
“Surely it is not too much to ask for the Government, local authorities, to set up a one-stop shop where carers, on the day of diagnosis, can get all the advice, help and personal guidance where and when they need it most, where somebody, a long-term point of contact, sits you down and asks, ‘This is what you need to know and do now.’ That would help us care for the people we love with dignity and respect.”

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