Young Carers

Parents everywhere are aware of how all-encompassing their role is, while their children remain largely oblivious of the work involved. But there is one group of people who know exactly what is involved in looking after someone’s every need – young carers.

According to Family Carers Ireland (FCI) there are almost 500,000 carers looking after loved ones across the country and 67,000 of those, either helping or providing a large amount of care, are children and young adults.

Padraig McGrath, Young Carer Development Officer with FCI says the average age of young carers in Ireland is 15 and their duties vary, depending on the nature of the illness, disability or addiction and the level and frequency of need for care and support.

“It will also depend on the structure of the family whether there is practical support and home care available,” he says. “However, duties typically include cooking, housework and shopping, physical care such as lifting, or helping with physiotherapy and personal and intimate care tasks such as dressing, washing and helping with toileting needs.

“It also involves household management such as budgeting, collecting social welfare and prescriptions. Young carers may also administer and manage medication, look after younger siblings, and provide emotional support. Sometimes they may need to interpret, due to hearing or speech impairment or because English is not the family’s first language.

“The majority of young carers we encounter are secondary carers meaning that they help the main carer with these tasks but some are the primary or indeed sole carers for their loved one with care needs.”

Lily Power is one of those carers. At 20 years of age, she looks after her mother, Catryn, who has been living with early onset Parkinson’s Disease for the past two decades. Her role has varied down through the years and although it can be difficult, she doesn’t resent any of it.

“I’ve always helped my mom, but her condition has been worsening dramatically since I was about 13, so I have been caring for her more in recent years,” says Lily, who lives in Cork. “During the day I provide her with whatever she needs and while each day varies, it usually involves tidying the house, preparing dinner, providing medicine or assistance with taking on and off clothes and shoes. I will also reposition her when she can’t move and assist her with cleaning her Duadopa pump (for administering medicine) at night.

“Being a young carer has its ups and downs and the negatives include not being able to leave the house on a whim. But I see the positive side of things as I can repay my mom for everything she has done for me over the years, even though the circumstances are unfortunate.”

While Lily has sole responsibility for her mother’s care (along with some outside help), Sean Collins helps to look after his older sister, Kathryn who needs around the clock care.

“Kathryn has a chromosomal disability called SATB2, has no speech and while physically able, requires 24/7 care,” says the 17-year-old. “But although she doesn’t speak, we have a very strong relationship – I understand her and her signs well and we have our own little jokes.

“As she is my older sister, I have always helped mum to look after her, even if just means distracting her when she is agitated and keeping her occupied.”

Their mother, Annette is the main carer and says Sean has spent his entire life helping her to care for Kathryn, who has severe mental difficulties – a duty which he carries out without complaint.

“When Kathryn (19) was younger and his Dad (Donal) was working long hours, Sean was invaluable,” she says. “I don’t think I even realised that he was doing a caring role as when he was young it would just involve keeping an eye while I had a shower or prepared dinner.

“Then as they both got older, I began to rely on him more as Kathryn doesn’t like to sit still and has no interest in things like television, so she is always on the go. But her gait is very unsteady and intellectually she has the understanding of a three-year old, so he would keep her occupied while I got other things done.

“When Kathryn was young, she would cry if she wanted something as she can’t communicate, but as she got older, she began to become aggressive instead and this is particularly hard as she is 6ft 2 and I’m only 5ft 6. Sean is 6ft 4 and big and strong, so he will stand between us if she is going that way, or sometimes all he needs to do is say ‘Hey Kathryn, what’s up,’ and this often diffuses things, as she really loves her brother.

“I try to limit what he has to do for her, so for example I don’t often ask him to help with personal care, even though Kathryn finds washing and dressing very difficult as she has no patience. So I will do most things and he might help with putting on shoes and socks – he is also very good at doing her hair.”

The home situation intensified when Annette was diagnosed with breast cancer which has unfortunately spread to her bones, leaving her unable to cope with the needs of her daughter, so the family reluctantly agreed to place Kathryn in weekly residential care.

“This was a very difficult decision for us to make, but with Sean coming up to his Leaving Cert and my cancer having travelled to my hips, spine and ribs, we just couldn’t manage,” says the Monaghan woman. “I went into hospital for a month to have a hip replacement and it was very hard. But Sean has been fabulous, both with looking after his sister and also helping me.”

Along with helping to care for his sister, the young man now also helps around the house and offers support to his father who is taking care of his mother.

“Since mum is in a lot of pain from the cancer, my role in the house has moved from assisting with the caring of Kathryn to assisting mum in whatever help she needs, especially after her chemotherapy which happens once every three weeks,” he says.

“This involves general household jobs such as hoovering and shopping as Mum struggles with bending because of the cancer in her spine. While I am often busy with school or work around the house, when I do have any time to myself, I like playing rugby and listening to music. And I am also helped by my dad as he gave up work in order to become mum's full-time carer and give me the time to concentrate on my Leaving Cert.”

According to Padraig McGrath, for the majority of young carers like Sean and Lily, caring is a rewarding experience. But many find it difficult to balance housework with helping to look after siblings while also trying to keep on top of their schoolwork.

“The long-term effects on these young carers can be devastating,” he says. “Young carers are more likely to experience educational disadvantage than non-carers because of time missed from school, responsibilities encroaching on time available for homework and study, inability to participate in extra-curricular activities, and an increased risk of early school-leaving.

“They may also experience social disadvantage and isolation, meaning that they don’t have the same opportunities as their peers – and this can affect relationships with both family and friends.”

A recent FCI Young Carers in Ireland report shows that, almost 25% of young carers surveyed report going to bed or school hungry which may suggest food poverty in some caring homes.

“Young Carers tell us that the best way to support them is to raise awareness in schools and in the community, provide home help and respite services so the burden of care is reduced, and create support networks,” says McGrath. “They also want access to information and advice about issues affecting them.

“Our young carers project offers a range of supports and services to help reduce the negative impacts – these include online workshops and webinars, a network of young carer groups and online groups, counselling, educational supports such as grinds, a free Young Carer Card and opportunities for breaks away from the caring role at home.

For more information contact youngcarers@familycarers.ie or call Freephone Careline on 1800 24 07 24.