'We're afraid to die in case there's nobody there when we're gone to look after them'

HELEN KELLY, who cares for her 31-year-old son, Ross, says life at the moment is terrifying. Caring for an adult child is difficult anyway, but the climate of cutbacks and uncertainty about services is making things worse. “We struggle to live and we are afraid to die in case there will be nobody there when we are gone to look after them,” Helen says.

There is the emotional side, a perpetual sadness about caring for a child who will never be independent, “the sadness you feel at what your child is missing out on” – the debs, the graduations, the weddings. Then there is the practical side, the difficulty of accessing services, of finding out where to go and who to turn to at the various and different stages of a child’s life. For many, getting a proper diagnosis will be a challenge, according to Helen.

“We are all terrified at the moment. Afraid of what’s coming down the line. Will there be cutbacks? If my child’s programme is interfered with, it will be terrible on him.”

Ross is currently in a community-based programme run by the Brothers of Charity in Ennis, and is lucky to have a personal assistant.

The eldest of three children, he will always be his mother’s baby. Children with special needs make special demands on parents and siblings. Other children in the family are forced to make sacrifices and their needs take a back seat, says Helen, though they often grow up to be kinder people.

“They see the needs of others and they are caring people. That is not to say they didn’t lose out,” she says.

One of the hardest things to endure is the lack of recognition for being a carer. After decades of looking after Ross, Helen (and others like her) will not be entitled to a contributory old age pension when she reaches retirement age.

A professional care worker employed by the HSE gets paid about €13.65 an hour, while a family carer, if they qualify for benefits in the first place (all are means-tested) gets €1.30 an hour, according to Kelly.

JOHN BLAKE, from Liskeavy, near Tuam, looks after his wife, Sally, who was diagnosed with multiple sclerosis in the 1990s. The couple (see photograph above) have five children, now aged between 18 and 27. Male carers are in a minority and are often hesitant about seeking help, but Sally, in a wheelchair now, has home help and a personal assistant as well as a great attitude.

For John, her illness was, at the start, “going into the unknown . . . There is help there. It’s knowing how to access it.”

One of his first good breaks was going to a carers’ group in Kilkenny, where he was taught about lifting and handling.

There are thousands of carers in Co Galway alone, John says. “It’s mostly women who are carers. It’s difficult for anybody, but when it came to finding information, I had to go and do it myself. A lot of men would be shy about that.”

He had vital back-up from family, and is now chairman of the Tuam Caring for Carers group, where he finds that more men are now coming to meetings. He has also had support from the Irish Wheelchair Association, the public health nurse and so on, but the first step in seeking information and help for oneself as a carer is vital, he says.