'Always on edge' - a carer's life

Three out of four carers have been forced to "breaking point", a poll published to coincide with carers' week has found. Here, BBC News speaks to two carers who themselves have, at times, been stretched to their limits.

JACKIE SANDERS, CARER OF HER YOUNG DAUGHTER

Raising Abigail has been tough, especially when at her most ill

Abigail Sanders was born with chronic epilepsy and suffered hundreds of seizures every day as a baby. The knock-on effects mean that now, aged nine, she has a complex range of medical needs and profound learning difficulties.

Her parents, Jackie, 41, and Keith, 42, of Croydon, who also have a 12-year-old son, are round-the-clock carers.

Jackie Sanders says the combination of physical and emotional strain, combined with the lack of sleep, can take its toll.

Abigail now has up to 40 seizures a day and every two hours requires something whether food, drink, medication or to be repositioned and settled.

"Even when she is asleep, you are still half awake," Mrs Sanders explains.

Caring is about a whole series of cogs working together, but if just one comes unstuck that can tip you over the edge, she says.

The Sanders have done what they can to ease the burden - their home has been specially adapted, Abigail attends a special school and they have some respite care.

But even when on a break, the job doesn't leave you, says Mrs Sanders.

"I trust her carers completely but you are always thinking: 'Is she ok?'"

"We are not at breaking point every day - you do learn to cope with it. But the worst times have been when Abigail's been ill."

Recalling her daughter's birth, she says she would like to see more support for new parents of children with disabilities.

"You are having your second baby when all of a sudden you are in another world. At that early stage there needs to be that support."

She also wants greater recognition for carers, particularly from professionals. She says in the past a GP has refused to sign a prescription for her daughter because it was too expensive, and booked an appointment on the first floor of the surgery, despite Abigail's immobility.

There have also been, what she believes are unnecessary delays, getting help from local authorities.

"I had to wait over six months to get a chair just for her to sit in. I had to sit there and look at her, knowing she was not comfortable. It's each one of these things that puts pressure on you," she said.

Her biggest concern, however, is for those carers having to cope behind closed doors.

"Many carers have gone beyond breaking point where there has been family breakdown. So many families don't even get out the door. How have they got time to fight for support or equipment?" she asks.

LINDA COCKSHAW, CARER OF HER ELDERLY MOTHER

Despite her supportive family, Linda Cockshaw has felt isolated at times

Linda Cockshaw has been looking after her 84-year-old mother, Evelyn Evans, who has severe dementia at her Middlesex home for five years.

"She can't walk, stand or feed herself. Her speech has gone and she doesn't see very well. So she needs everything done for her and every need anticipated," says Mrs Cockshaw, 62.

"She is jolly hard work, but it is very rewarding."

Mrs Evans does not recognise her daughter and has changed from the mother Mrs Cockshaw remembers, her personality all but lost by the severity of the dementia.

Another tough aspect has been putting her and her husband, David's, lives on hold.

"We are not free to come and go. We can't just go the shops together. We always have to arrange some cover.

"She is so helpless. It would be like leaving a newborn baby in the house alone."

A carer visits every Wednesday morning to look after Mrs Evans, allowing Mrs Cockshaw time to get her hair done, wander round the shops or see the dentist.

It may sound like a little thing, she says, but it makes an enormous difference.

She accepts more help is available now than in the past and has nothing but praise for her local social services department who helped adapt the Cockshaws' home. But she insists more change is still needed.

Now at pensionable age, Mrs Cockshaw is no longer entitled to the carers' allowance - an "anomaly" that needs correcting, she says.

She also says respite care could be better. Currently she has to go away on holiday before she can qualify for it, whereas she would like to see a day when her and her husband could go out for the day, while her mother is cared for at their home.

A very supportive and close family has made caring for her mother easier but she says there are times when she still feels the "sheer loneliness" of the job.