Carers require a bit of looking after too

As a result there are six million people in Britain – 480,000 in Scotland – who are providing unpaid care to a relative or friend who is ill, frail or disabled, saving the state an estimated 87 billion a year. And with three in five people becoming carers at some point in their lives, the numbers are only likely to increase as the population ages.

Research by Carers UK has shown 76 per cent of people looking after an ill, frail or disabled loved one do not have a life outside their caring role.

This week – Carers Week – the plight of carers is being highlighted to ensure greater support for carers to allow them to maintain a life of their own and to make them aware of the services and benefits to which they are entitled.

Here, two Lothian carers tell how their lives have been radically changed by caring for a loved one.

CAROLINE LAMBIE

"I am just coming out of the closet really," laughs 39-year-old Caroline, from Addiewell, West Lothian. "I am finally admitting that I am a carer, that I do have to be a carer for my son, not just his parent. It's been a major step for me."

Sean Mason, Caroline's son, is a strapping 14-year-old, but still has the developmental age of a one-year-old. He suffers from ataxic cerebral palsy and has also recently been diagnosed with a separate heart condition.

"He has really severe and complex learning and mobility difficulties, and I've been dealing with that since he was two because I knew he wasn't developing properly.

"You do go through a grieving process at that point, but I was on my own with him then so I just had to get on. I always just regarded myself as Sean's mum, but as he's got bigger there have been more issues to deal with, because he's really still a baby."

As a result of Sean's problems he can walk short distances, but is mostly wheelchair-bound. He has no real language skills. His digestive system doesn't work well, which means that at least two nights a week he is up all night being sick, and he is still in nappies.

He has also recently been diagnosed with SVT, an irregular and fast heartbeat which can make him collapse.

Caroline says: "It's so hard trying to lift him when he's like that. It was much easier when he was smaller, but he's so large now. However he's been on medication to help with the SVT for the last month so things have slowly improved. I think what is lucky though is that he's such a lovely boy, he has a great personality."

Caroline says she has had to build a flexible life for herself. "I am not sure I could have worked full-time for anyone but myself given the job I have with Sean as well," she says. "I work freelance as a magazine editor, plus I'm a humanist celebrant and I also have a lifecoach business, and an online training business. I have plenty of things going on. Sometimes I think it's how I cope with Sean's difficulties, I have so much to take my mind off them.

"It does mean I don't qualify for Carers Allowance, but because Sean's needs are so complex I do get a lot of support from social services, unlike other carers."

Sean attends Beattlie special school in Livingston so Caroline is able to work during school hours, and her husband Daniel, Sean's step-dad, also plays a major part in his care.

It was his letter to the Tartan Army's Children's Charity, which saw Sean win its Inspiration Award last year. His prize was to be the mascot at Hampden when Scotland played the Czech Republic and to meet Scotland coach Craig Levein.

However, Caroline has recently looked for more support. "I do think there's a taboo about caring. It is difficult to talk to people about. But I went to a training course run by VOCAL, which is part of the Princess Royal Trust for Carers Network, and that's when I had finally admitted that I was more than Sean's parent.

"It made me look at myself as a carer in a positive way and meeting other people in the same position was great."

JULIE TARTAGLIA

"Carer is the wrong word," says 47-year-old Julie emphatically. "I'm not just caring for someone, I'm doing a full-time nursing job. If I wasn't here my husband would be in hospital or a nursing home, so that's more than just caring for him. It's a misuse of the word."

Julie's husband Tony, 46, suffers from secondary progressive multiple sclerosis, a condition which has seen him change from being a partner, father, bus driver, a man full of life, to a wheelchair-bound invalid, incapable of doing many daily, ordinary things for himself – all in the space of four years.

In her immaculate home in Port Seton, East Lothian, all is quiet, because Tony is in Liberton Hospital for respite. "He goes there every eight weeks for two weeks to give us both a break," she says. "We are together 24 hours a day now, and in some ways it's brought us closer together, but it is hard for both of us.

"He used to be happy-go-lucky, but not any more, it's changed his personality. We've been married almost 22 years and he's not the same man.

"He can be paranoid and quite volatile. I think it's very scary for him. I try and stay calm, but there's a lot of crying. Sometimes it's the only thing that works."

Tony was diagnosed in 2006, and the following year he had to give up work.

"Tony had been a house- husband looking after our son Dominic while he was at school while I had my career in IT in the financial services sector. The doctors think he might have had the MS for years, and you know I'd come home from work to find he'd spent the day sleeping. We never thought it was a sign of anything – other than his laziness," she says.

"It wasn't until he began falling for no reason that eventually he went to the doctor. It was a real shock to be told it was MS, and he did go downhill pretty quickly.

"Our plan was that I would retire at 50 and that Tony would go back to work then. That's just not going to happen now.

"I have to keep working, and I'm lucky that my employers allow me to work my four days from home so that we can pay the mortgage.

"Tony gets his benefits, but I don't qualify for Carers Allowance, and as that's just 53 a week, who can live on that? Most carers who don't have flexible employers are living in poverty."

The impact of Tony's illness has also meant that Dominic, 17, will now be staying at home while he starts his music and maths degree at Edinburgh University.

"He could have gone away to study but he wants to be here to help with his dad," says Julie. "And to be honest I rely on him to help. I couldn't lift Tony on my own.

"Mind you if anything happened to me Tony wouldn't want Dominic to become his carer. That's when he would have to go into a care home. That's why it is a real job."

For more information on the rights of carers please visit www.carersuk.org or www.vocal.org.uk

INFORMATION'S VITAL IN ANY LANGUAGE

ACCESSING information and support when caring for someone can be challenging – but what if you're also from an ethnic minority or English isn't your first language?

In Edinburgh the answer is MECOPP – the Minority Ethnic Carers of Older People Project – which works in partnership with carers, the voluntary and statutory sectors, to ensure carers from black and ethnic minority groups receive support and respite.

The charitable organisation, which has been running for 13 years, also aims to challenge and dismantle barriers that deny minority ethnic carers access to health, social work and other social care services.

Director Suzanne Munday says: "Carers Week is a fantastic opportunity to highlight the situation of many carers in Edinburgh and beyond. Yet within this, there is still scant recognition of the many difficulties faced by black and minority ethnic carers in accessing services. Many carer support organisations cannot accommodate the specific needs of these communities."

For more information on MECOPP visit www.mecopp.org.uk or call 0131 467 2994.