In the care of children

It is estimated there are up to 5,000 carers under the age of 18 in Ireland, but there is very little support for them

THE LAST day at primary school is a milestone for any child but for 12-year-old Maria Maher it shaped her life in a way she could never have anticipated.

That June morning in 2003, her mother, Mary, was taking a bag of rubbish out the front of their home in Ballincollig, Co Cork at ten-to-nine, when she tripped over the lip of the door and fell badly. Obviously in pain, she was helped to a chair in the kitchen and a doctor was called.

Mary, then aged 48, sent Maria and her three older siblings off before an ambulance took her to hospital. “It was my last day at school and she didn’t want four of us at home worrying about her,” recalls Maria, now aged 19. None of them had any idea they would never see her walk again.

Having broken her right leg in five places, Mary was hospitalised for a number of weeks and then sent home in a wheelchair to let the bones set. “I had to have my leg straight out in front of me,” she explains, which severely restricted movement. “When I went to the shop I couldn’t reach anything – things you take for granted. I found it a big, big change.”

Maria, being the youngest, was at home most and immediately assumed the role of her mother’s carer. “She just took it on. There was nothing discussed,” says Mary. “It made her grow up very quickly. She helped me with washing, dressing; helped me to the car. She never talks about what she does. That’s the way she is.”

More than a year after the accident, having endured various complications and a bone that wouldn’t reunite, Mary was told at the end of a physiotherapy session that she would not be able to walk again. She did not say anything initially when she got home, but reflected on what it was going to mean.

“There were two things I could do,” she points out, “I could sit and mope about it or just get on with life.”

She chose the second. Maria says her mother is an optimistic person and makes light of her problems, which made it easier for all the family. Mary can drive, but always needs someone to get herself and the wheelchair in and out of the car.

The accident did not “put a downer on her”, Maria explains. “It’s not too bad, basically. Everyone has the same attitude and it is kind of accepted and they just get on with it.”

Ever since that summer of 2003, Maria has been Mary’s main carer. Maria’s father, Richard, is self-employed and has to travel for his job, while her siblings, Eileen, now aged 24, Martina (23) and Michael (22) are all at college but still live at home.

Throughout secondary school, at Coláiste Choilm, Maria managed to cope with her studies and caring for her mother, not to mention her own adolescence. “For her age, she was very unselfish,” says Mary. “There were two ways she could have gone: she could have either gone wrong or gone right and thank God she went the latter.

“She never seemed to resent it. She never said ‘I can’t do this’ or ‘I can’t go there because of you’. She would come home and help with housework and anything I had to do at home, and then she’d do her homework. She did her Junior Cert and Leaving Cert and did great, thank God, and she juggled it all together.”

It was easier once Maria was allowed to leave the school at lunchtime from transition year onwards and was able to come to the house in the middle of the day. Mary knows she could have asked for Maria to get out of the school, which is only 10 minutes away, when she was younger, but she didn’t want to single her out.

“We organised around it,” she says simply. Once Maria was allowed out, two of her friends would always come home with her.

“I was delighted with that because it meant she was included; they could go down the village [as well] and her friends were a great support.” She says Maria has a great group of friends who “know her situation and organise anything well in advance”.

Did Mary feel compromised as a parent? “Not really,” she replies. “I don’t think it affects them; it is more an inconvenience than anything else. Mentally I was grand. I am still their mother at the end of the day. They and their friends, they don’t see the chair, they see me as the person I am and they don’t treat me any different.”

Maria, who is now in her first year studying food science at University College, Cork, does not believe her caring responsibilities have hampered her life in any way. She was “completely fine” doing the Leaving, “I had time to study”.

What about those years when she should have been a rebellious teenager? “I am the youngest of four. Everything had been done before!” she says wryly. “At least I am kind of lucky that there are a lot of my family and friends around and we live in the middle of a village anyway,” she continues. “But I would say for a lot of young carers it could be very difficult and they could feel really isolated.”

Until Maria won the 2009 “Young Carer of the Year” award (for which her mother secretly nominated her), she did not even see herself as a carer, she admits. She realises now that this is a problem with many other young carers.

Indeed, this is “one of the biggest stumbling blocks” to identifying and helping young carers, according to the Carers Association.

“We have to get to the stage where there is self-recognition,” says its chief executive, Enda Egan.

“It is very hard for young carers to come forward as that usually means a family member, often a parent, has to come to the conclusion that they are being cared for and that their young child is a young carer.”

Traditionally, this does not happen in Ireland, unlike in the UK where, he estimates, “they’re 15-20 years ahead of us in terms of how services and supports for young carers are organised. We are in the embryonic stage in this country in terms of supporting young carers and identifying them.”

It is estimated there are up to 5,000 carers under the age of 18 in Ireland but it is difficult to quantify because, he says, the Census has not, up to now, picked them up under the age of 16.

One of the difficulties of defining young carers is that many of their experiences have been, and still remain, private and to a large extent invisible to those outside the family, concluded a report entitled Caring Before Their Time?which was published jointly by Barnardos and the Children's Research Centre at Trinity College, Dublin.

“A particular issue when it comes to recognising young carers is fear – fear on the part of the adult that the young carer will be taken away. In addition, there is fear on the part of the young carer that the relative they care for may be transferred to long-term care or a hospital,” commented the report’s authors, Robbie Gilligan and Ann Marie Halpenny.

In response to this 2004 report, the Office of the Minister for Children commissioned the Children and Family Research Centre at NUI Galway to carry out research on young carers in Ireland, which is due to be published “within the next few months”, according to a spokeswoman for the Minister. Egan believes its main findings will include the “need to develop systems and protocols in how we find young carers and how we engage with them”.

To illustrate how far we are behind the UK, he cites the city of Glasgow, with a population of about 600,000, where there are 22 young carer co-ordinators. Their full-time job is to organise support services for young carers and liaise with the providers.

“It is like a mentor working side-by-side with you,” he explains, “making sure the education system is aware of the needs of a young carer and that they are flexible enough to deal with that. They have 22 in Glasgow; we don’t have one in Ireland.”

Although Maria finds college hours easier to combine with caring for Mary than those of secondary school, she and her mother are frustrated that she is not eligible for a carer’s payment, even though she is now over 18. Apart from the fact that spending more than 15 hours a week at college disqualifies her, Maria also got a letter, says Mary, telling her that the person she was caring for wasn’t so disabled that she needed a carer.

“I thought I ticked all the right boxes but obviously not,” says Mary with her irrepressible good humour. Mary herself has been told she is not old enough to qualify for home help.

“I think the Government exploits all the young people who are doing this. I wouldn’t expect them to get the same as an adult, but it would be a bit of pocket money,” says Mary.

Maria feels it is “unfair” that she is ineligible for the carer’s allowance. Looking after Mary means that seeking a part-time paid job is out of the question.

There is a lack of recognition of the contribution of young carers, says Egan. “The State doesn’t come in and say thanks for doing this because you are saving us having to put that support in there.”

Looking after a disabled or ill parent can have a widespread impact on a teenager's life. Caring Before Their Time?highlighted the potential emotional, psychological, social and educational effects (see panel) which may continue into adult life.

“It certainly curtails their studies outside school and can have an impact on their attendance at school and their concentration levels,” says Egan. “Young carers can be picked upon and bullied because they are different and not able to engage in outside school activities. They tend to have to deal with a lot of household duties and chores which a child that age would not normally have to do.”

However, studies show it is not the caring responsibilities as such that are likely to cause teenagers major problems, but possible knock-on issues such as poverty, marital disagreement and impaired parenting.

Maria says in her case there was no question of the parent-child role being reversed. “Her accident was just to do with her legs. She is still completely functioning otherwise. It’s not like I have to feed her, or anything like that.”

But she agrees it changed her relationship with her mother. “I think if anything it got closer as I would spend more time with her, bringing her places, than if this hadn’t happened.”

Mary too feels that her relationship with all four children has been strengthened since the accident and it had some positive effects.

“They were always understanding but I think it made them more aware of other people’s problems. It didn’t do them any harm that way,” she adds. “I would still give the orders and be giving out!”

Physical:Lifting a sick or disabled person can lead to back strain and the increased likelihood of back problems in adulthood. In addition, increased stress and limited sleep associated with the role of caring for an adult in the family can also cause health problems.

Emotional and psychological:Being a young carer may put additional pressures on children and young people at a time in their lives which is already stressful. A Welsh study of carers found most of the children and young people interviewed experienced feelings of sadness, anxiety and difficulties with friendship and family relationships.

Social:Caring duties at home may prevent a young carer spending time with peers or taking part in sports and other after-school activities.

Educational:At least a quarter and probably one-third of young carers in the UK experience difficulties with school attendance and academic achievement, concluded a 2002 report. Punctuality, attendance and problems with homework and course work are among the educational difficulties experienced.

Future adult life:According to young people involved in looking after a family member, caring can have both positive and negative impacts on their lives as they grow into adulthood. Positive impacts include earlier maturity, learning to take responsibility, developing life-skills and a close, loving relationship with parents. Negative impacts include stress and sometimes depression, restricted social, educational and career opportunities and impaired psycho-social development.

Source: Caring Before Their Time? – Research and Policy Perspectives on Young Carersby Ann Marie Halpenny and Robbie Gilligan

• swayman@irishtimes.com