Leaving Cert student Sean Collins (17) has spent his life caring for his older sister who has a severe chromosomal disorder, and now supports his dad in caring for his mum who has breast cancer. He talks about how rewarding he finds his role, and his mum talks about her remarkable son
Recent research from Family Carers Ireland has shown that almost 67,000 young people (aged between 10 and 17) across the country provide regular unpaid care for loved ones. Because of this, they are at greater risk than their peers of emotional and mental difficulties.
Annette Collins says her son Sean can be included in those figures as the 17-year-old has spent his entire life helping her to care for his older sister 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.
“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.”
As the children grew older, they also grew in height and Annette found it more difficult to care for her daughter, so her son became her right-hand man while his dad was at work.
“When Kathryn was young, she would cry if she wanted something as she is non-verbal so cannot communicate,” the mother-of-two adds.
“But as she got older, she began to become aggressive instead and this is particularly hard as she is 6ft 2in and I’m only 5ft 6in. Sean is 6ft 4in 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. I will do most things and he might help with putting on shoes and socks. He is also very good at doing her hair.”
Sean says that despite her disabilities, they are as close as any siblings would be.
“Kathryn has a chromosomal disability called SATB2, has no speech and while physically able, requires 24/7 care,” he says.
“But although she doesn’t speak, we have a very strong relationship and share many social activities such as the Special Olympics and Faith and Light. 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.”
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.
“For a time, Kathryn was coming home every weekend, and this was sometimes problematic as she would get very excited, which would flip over into aggression and again Sean would step in and calm her down. Also, she uses a little bit of sign language, but only with her forefingers, and when I wasn’t around, he was the only person who knew what she wanted or needed. He has been fabulous, both with looking after his sister and also helping me.”
Along with pitching in 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. 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.”
But the latest lockdown restrictions have meant that he is finding it difficult to study and all of the family are missing Kathryn who has been confined to her residential home for the foreseeable future.
“Sean is finding working and studying from home very difficult,” Annette says. “He finds it very stressful as we have very poor Wi-Fi, so the classes keep cutting out and the added stress of the uncertainty around the Leaving Cert isn’t helping. He also finds it very isolating with not seeing friends from school, as he has no one to talk to and break up the repetition of every day being at home.
“On top of that, we are all finding it very difficult that we can’t have Kathryn at home. Her visits every weekend were always our focus and now the weeks are just dragging and home feels very empty without her. She also loved coming home but now she doesn’t understand why she can’t. We try and keep the connection with her through FaceTime, but it is hard because she is non-verbal, although we do enjoy even being able to see her and she us.”
Catherine Cox, of Family Carers Ireland, says while many young carers like Sean are committed to their role and even find it rewarding, it can take its toll.
“Our report shows that young carers are less likely to report high life satisfaction than other young people in non-caring roles,” she says.
“It also highlighted that they can be more prone to bullying, are more likely to miss school and a worrying statistic is that almost 25% of young carers surveyed reported that they go to bed or school hungry which may suggest food poverty in some caring homes.
“It does, however, depend on the level of care they are taking on and who they are caring for. In situations where a young carer is supporting their parents to care for their brother or sister, this can be a very rewarding experience which creates a very strong bond between siblings.”
Annette says this is true of her children, despite Sean going through some difficulties as a result of his caring role when he was younger.
“Sean is very defensive of Kathryn and she adores him,” she says. “But it has been hard on him over the years, particularly when he was growing up as kids can be hurtful and say nasty things and sometimes his friends didn’t always understand the situation.
“As a child, he was always late for everything as Kathryn would have a meltdown before we went anywhere, so even if he was just going to football or rugby training, we would always be late, and he would often be in tears in the car on the way there. But he really has been amazing over the years. He is so good natured — of course he can be a stroppy teenager too, but that’s understandable.
“Sean is just very kind to all of us. He is a great lad and truly is the laughter in our house.”
And while there have undoubtedly been difficulties associated with being a young carer, the Monaghan teen says he wouldn’t have it any other way.
“While caring is often perceived as negative and is sometimes stigmatised, I believe there can be many benefits such as learning from an early age to really appreciate your family,” he says.
“I intend to go off to college next year and believe my caring responsibilities have instilled a sense of maturity and independence that many my age would not have encountered yet.
“What I would say to other people my age in a similar situation to mine, is to try to focus on the positives and care with a sense of pride and dignity as you are fulfilling a tough and often thankless role out of nothing but love.”
Catherine agrees and says it is really important for young carers to have somebody that they can confide in — either a close friend, family member or professional who can support and advise them.
“Caring can be difficult, both physically and mentally and they need to be kind to themselves and recognise that they can only do their best,” she says.
“They need to take time for themselves also and where possible do the things that young people of their age should be doing. Covid-19 has certainly added to the pressures that many caring families are facing with loss of services, supports and day centres closing down, all of which can have a negative impact on a young person’s mental health.
“So where possible young carers should connect with others in a similar role as they can truly understand what they are going through. Family Carers Ireland, through our young carer support manager, offer this peer support along with many others; including access to online counselling, information and advice, training, and one-to-one support.”
Family Carers Ireland provides a range of services to those caring for others. For more information contact email@example.com or call Family Carers Ireland’s National Freephone Careline on 1800 24 07 24