At 17 years of age, most teenagers are busy with friends, schoolwork and a hectic social life. They will be looking forward to hanging out over Christmas and doing little more than enjoying a well-earned break from their studies.
But for more than 50,000 young people in Ireland, the reality is somewhat different as their daily lives are punctuated by the efforts involved in helping to care for a loved one – and while most us will be enjoying the novelty of spending time doing precious little over the festive season, an unseen army of carers will be carrying on as normal.
Matthew McCartin (17) from Co Wexford is just one of the many teenagers behind the statistic as he devotes much of his time to helping his mother, Martina, care for his father, Eddie, who has advanced Parkinson’s disease with dementia and is wheelchair-bound.
And while there won’t be many parties happening in their house over Christmas, the family will do its best to make the season special.
“Our Christmas day is usually quiet, just the three of us together,” says mum Martina. “It used to be more difficult to see others going out, celebrating, visiting with friends and relatives – but now it’s not so difficult anymore as we have learned to take pleasure in the small things.
“So our best Christmas will be old and familiar – we keep up old traditions [such as Matthew putting the baby Jesus in the crib on Christmas morning before going to see what Santy has brought and watching re-runs of favourite programmes]. Then we will try as best we can to turn the clock back – and maybe we can – even just for Christmas Day.”
Of course, there is no going back to the way things were before and life is undoubtedly difficult for the McCartin family. But last month Matthew won the Family Carers Ireland Leinster Young Carer of the Year Award for his devotion to the father who he has only ever known as being unwell. Martina says he was only a toddler when his dad unexpectedly became ill, so caring has always been a part of his life.
“Eddie  developed symptoms of Parkinson’s when he was about 45,” she says. “It wasn’t picked up for a couple of years as he seemed far too young to have it, but what started with a limp, progressed to him dragging his leg around and he went to so many different doctors to try to find out what was wrong but no one suggested Parkinson’s disease because of his age.
“Eventually we did get a diagnosis and it was utterly devastating – but at the same time, there was a bit of relief as we finally had a name for his condition. He was put on treatment and the drugs worked well for a while, but after a year or two it started to progress very quickly, and our lives really changed. Matthew was very young at the time, so he has never known his dad as someone fit and healthy.”
As well as being diagnosed with Parkinson’s, a progressive nervous system disorder, at a devastatingly young age, Eddie unfortunately went on to develop dementia and is now completely dependent on his wife and teenage son.
“Not long after diagnosis, Eddie’s mobility became very bad and he is now wheelchair-bound and we have hospital equipment in the house to help get him in and out of bed,” she says. “But I wouldn’t be able to do it on my own and this is where Matthew has been fantastic.
“Because Eddie is under 65, he doesn’t qualify for the Home Care Package, but he does get four hours a week from Disability Ireland. So apart from those few hours, it’s just Matthew and I, and to be honest, I couldn’t manage without him. He helps me to move Eddie in and out of bed and also with his personal care and feeding – and even just minding him if I need to pop out to the shops.
“The father/son roles were reversed from an early age when he started looking after Eddie rather than the other way around.”
And while it is undoubtedly difficult for the young man, Martina says looking after his father has helped her son to become the caring individual he is today.
“Looking after Eddie has taught Matthew to be more mature and he is so considerate,” she says. “And because he has grown up with this as being a normal part of life, he is naturally caring and doesn’t even realise he is doing it. No matter what is asked of him, he never says no. He doesn’t see himself as a carer, but that is exactly what he is – he really is fantastic and to be honest, without his help, I wouldn’t be able to do it at all.
“There are many people in a worse off position than we are and, in some ways, we feel fortunate, but of course it has been hard over the years, for all of us. But Matthew has developed into the person he is due to the care he has given his dad and I couldn’t be more proud of him – for what he has done throughout the years, what he continues to do every day and for the person he has turned into.”
In recognition of the caring role he plays, Matthew, along with three other young carers (Lily Power from Munster, Haile Golden from Connaught and Áine Grant from Ulster) collected an award at the recent ceremony in Dublin.
“I was so delighted to be even nominated, let alone to win an award,” says the teenager, who is in fifth year at Gorey Community School. “Being a carer is of course hard work and there is a lot of responsibility involved but I never saw it as something I should be rewarded for doing.
“I would always be there for my Dad whether it’s keeping him company, looking after whatever needs he has or just helping my Mum – it’s something I’ve always done so I don’t see anything unusual about it.
“But I do think it would be very hard for someone who has had to adapt to the role unexpectedly and if I could give any advice, I would say to be patient and try not to get annoyed with the person you are caring for as they are not in control of the way they are. It is of course difficult, so do ask for help and advice but try to be understanding and kind – as they are family and they didn’t ask to be in the position they are.”
Marcin Filak from Kildalkey, Co Meath won the overall Carer of the Year award for the extraordinary role he plays in looking after his family – which include his wife Ola, who has locked-in-syndrome (which occurred following a catastrophic brain stem stroke just three weeks after the birth of their daughter) and their two children Piotr (13) – who has autism – and two-year-old Anastasia.
His love, dedication and unwavering commitment to his family all contributed to his suitability for the award. But he is just one of the 355,000 family carers who provide a similar level of care for their loved ones. And now in its 13th year, the Netwatch Carer of the Year awards seek to recognise, celebrate and shine a light on these remarkable people.
Currently one in 10 people provide care for a loved one at home- in some cases over 100 hours per week – and by 2030, that figure is expected to rise to one in five.
Catherine Cox, Head of Communications and Carer Engagement with Family Carers Ireland, says people like Marcin and Matthew don’t want to be put on a pedestal but it is important that we all recognise what they do and realise the important role they play in our communities.
“We are thrilled to announce Marcin as our 2019 Netwatch National Carer of the Year as his commitment to his family is an inspiration to us all,” she says. “And, as always, we are in awe of our four Young Carers of the Year 2019 and the maturity and dedication they show in helping care for their loved ones. We look forward to this event each year which not only gives family carers the recognition they deserve, but also shines a light on caring in Ireland today and the challenges that many face in their roles.
“The theme of this year’s awards is ‘No one should have to care alone’, highlighting the need for a shared responsibility for caring between the family carer, wider family, community and most importantly the State.”
The facts: Carers in Ireland
⬤ There are more than 355,000 carers in Ireland looking after loved ones in their own homes.
⬤ Over 50,000 of these are young people under the age of 18
⬤ Research into the ‘Hidden Impacts of Caring’ revealed that:
⬤ Over 70pc of carers surveyed said their loved one did not have access to suitable respite
⬤ 76pc of care recipients did not receive any home support hours
⬤ 74pc of care recipients requiring 100+ hours of care per week had no access to home support hours
⬤ 49pc of carers said that no supports and services were available
⬤ 79pc of carers supporting children with care needs found it difficult to make ends meet
⬤ 44pc of carers surveyed regularly deal with abusive behaviour
⬤ 25pc of carers could not access supports and services due to distance and/or transport issues
⬤ 43pc of carers said that supports and services were not disability, condition and/or age appropriate.
⬤ For more information on how to get support or to nominate someone for next year’s Carer of the Year Award, visit familycarers.ie
Health & Living