‘Don’t lose sight of love – of course caring is hard work, but I love my son so much’

As every parent knows, once children arrive on the scene, the early years are pretty much taken up by caring, nurturing, teaching and loving our most precious creations.

Of course, during their childhood and teenage years, life is busy, but most of us still manage to get some time for ourselves; to work, to relax, to exercise and to have a social life. And then when they grow up and fly the nest, we are left pining for those busy hectic days when finding some “me time” was an essential way of coping with the stresses and strains of family life.

But for some people, having time to themselves is unheard of, a luxury so unattainable, they may as well switch their thoughts to winning the Lottery.

There are more than 350,000 family carers in Ireland who devote their lives entirely to their loved one, who is looked after at home. Many are on the go from morning until night and some don't even get a full night's sleep as their charge is either restless or needs medication throughout the night.

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The love they have for their family member is undeniable, but the relentless caring role can take its toll, particularly as many use their respite days to stock up on shopping, medical supplies or even just get an hour or two of total peace.

And while Catherine doesn't resent a moment of caring for her son, she is undoubtedly exhausted by the task

Catherine O’Connor is one of those carers. At 80 years of age, she has looked after her son Mark for 55 years. And while she doesn’t resent a moment of it, is undoubtedly exhausted by the task, which began when her perfectly healthy little boy developed encephalitis which rendered him unable to walk, talk or fend for himself in any way.

"When Mark was just 3 ½ months old, he got meningitis and was rushed to hospital where thankfully he was given medication and recovered," says the Kildare woman. "He seemed well but was a little behind in his development. Then when he was 13 months old, he got it again and this time (due to encephalitis) it left him severely disabled, he doesn't walk or talk, is doubly incontinent and has to have everything done for him.

“Right from the beginning Oliver, my husband who passed away not so long ago, and I did everything together. He was an amazing father and husband and I still miss him dearly. Losing him was very hard in so many ways and it obviously made it more difficult for me looking after Mark.

“But my two other children, Declan and Debra, are wonderful, particularly my daughter who lives nearby and comes in every morning to help me get Mark up out of bed, washed and dressed and into his wheelchair. She also comes back in the evening to help me get him ready for bed and throughout the day if I need her.”

As well as caring for her son, Catherine also nursed her husband for several years before he died from cancer. For the past eight years, Mark has been going to a day care centre three times a week and this gives her the opportunity to do a bit of shopping or get her house in order.

“Once Mark is up, dressed and in his chair, I will feed him and on the days he goes to the centre, will have him ready for when the bus arrives to collect him,” she says. “He has been going there a few years now and it is really great for everyone as the staff are lovely, it’s a change of scenery for Mark and I get to get a few bits done. I usually just do some housework and go to the shops or visit my sister before coming home in time for his return when it all starts again.

“On days when he isn’t at the centre, he watches the TV, but doesn’t really take any of it in and I sort out his food and his medication. He can only be in his chair for an hour or two at a time, so someone will come over and help me with the hoist to get him into the bed again for an afternoon nap or if he needs changing. It’s like a full time job really, but that’s just the way it is and always has been.”

But the thing I find difficult is that Mark's life was taken away from him

Looking after a growing child’s needs isn’t easy but a grown man is much more difficult, particularly as an elderly woman, but Catherine says it has been nothing but a pleasure to dedicate her life to her son.

“I have been Mark’s main carer for his entire life but he is an absolute joy and I couldn’t imagine life without him,” she says. “He is so gentle and very quiet, in fact in some ways, he still looks like a young lad as he is quite small. Anyone would love him as he is so easy and although it is has been hard on everyone in the family over the years, we wouldn’t change him for the world.

“But the thing I find difficult is that Mark’s life was taken away from him. He’s not aware of what is going on and doesn’t know who is who really. He didn’t know Oliver much, even though he did so much for him and that is very sad. I would have loved for him to have a different life, but unfortunately, that wasn’t to be.”

After five decades in a caring role, the octogenarian has some words of advice for others who are embarking on a similar route. “My advice is simple, you must realise from the beginning that you have to keep going for the sake of your child,” she says. “But take any help that is offered and be grateful for it– only for my daughter I would be lost. Also, make sure to rest when you can, just as you did when your child was a baby, when they go for a nap, you go too, it’s the only way to get through each day as otherwise you will be so tired.

“I take my relaxation time in the evening when Mark goes to bed for the night and that is important too. Make the evenings nice, watch something you like on TV or read a book, you need to wind down.

“But the most important thing to not lose sight of is love – of course caring is hard work, but I love my son so much and that makes everything I do for him worth it.”

For advice and support on caring for a loved one, visit familycarers.ie or call the Careline on 1800 240724