• Ali Isaac

Caring for the Carers

Updated: Mar 11, 2020

carer's week 2

Carers Week is all about recognising the hard work, dedication and self sacrifice carers make every day in caring for a loved one. These are not paid staff employed either privately or by the state to look after a disabled person; these are people who give up their own lives to in order to improve the life of a friend or family member who can’t look after themselves.

In the Census of 2011, 4.1% of the population were giving unpaid regular assistance to someone who needed it; of these, 98.3% were family members, mostly spouses, two thirds of them female. It is hardly surprising to find that separation and divorce is higher among carers than in the rest of the general population.

Sadly,  the 2011 Cencus found that 4,228 children aged under fifteen years were also engaged in providing care to others, accounting for 2.3% of all carers. Some of these children are under nine years of age.

38% of carers looking after someone in the same household reported feeling completely overwhelmed by their caring responsibilities, and many suffer anxiety and depression as a result.

Carer’s Week aims to relieve the pressure a little by organising fun events for carers, raising publicity, and offering support and advice. However, there’s not a lot going on. In Co Cavan, where I live, there is only one event, a coffee morning and pampering day in Cavan town; it doesn’t really cater for male carers, or those elderly carers who live in rural areas and have no transport. It is hardly going to sound like much fun for the younger teenage carers, or the children, either.

Although the state recognises me as a carer (unpaid, of course), I never think of myself as one. I’m a mother, and caring is what we do. But in terms of caring for a disabled family member, be it an ageing parent with Alzheimer’s, a partner with cancer, or a child with a disability, we do it firstly for love, and secondly because we have no choice.

I care for my daughter, Carys. She has a rare syndrome, which means she has the abilities, physically and mentally, of a one year old. She can’t communicate, she can’t walk, she can’t feed herself, she wears nappies (diapers), she can’t dress herself, get in and out of bed, and so on… I do it all for her. Administer her meds, mash all her food, do her speech therapy, physiotherapy, occupational therapy, bath her, clean her teeth, taking her to all her Dublin hospital appointments, regular and emergency, and so much more. Caring for someone like Carys means going above and beyond what any parent ever expects to do for their child, until you, or the child, expire.

But I do it because I love her with all my heart. I want to take care of her. She’s my child, flesh and blood, wanted as much in her imperfect state as the day we decided to try for our third baby. Perhaps that is a choice.

I’ll give you an example why caring for her is not the same as caring for any other child. For three years, she never drank fluids. At all. It’s not something you can force someone to do. Yes, we tried. We tried a lot of things. Eventually, after trying every bottle, cup and beaker on the market, I found one she accepted.

Now to actually get her to drink from it. In the end, I had to cut holes in the teat. (she would only take a soft teat, but didn’t know how to suck, so it had to be free-flowing… have you ever tried to find a child’s cup with free-flowing soft spout? Let me tell you, they don’t exist.) I filled it with chocolate milk shake. She allowed me to put it in her mouth. She even swallowed a little. Success!

After a while, on a good day, it would take me 15 mins to get 150 mls into her. Eight times a day. I spent two hours of my day just getting her to drink. Two hours. And I still had to feed her, clean her, etc… and look after the rest of my family.

That’s one of the nicer jobs. You don’t want to know about some of the not so nice jobs. No, really, you don’t!

I am not alone. I know parents whose children have feeding tubes directly into their stomach, or bowel. I know parents whose children have to wear oxygen masks over their faces just to survive, or tracheotomy tubes. That’s tough. And I have friends who are working, raising their children, and caring for elderly parents with dementia.

But mothers are perhaps the lost, secret, hidden carers. It’s expected of her, and she gets on with it, and it goes unnoticed, because mothers are expected to look after their families. No one sees what she does. It takes place in the privacy of her own home. No one looks too closely; it would after all make you feel quite uncomfortable.

The best thing anyone ever did for me was take the responsibility of being a carer away from me for a couple of days. I have good friends, very good friends, who surprised me round about this time last year, by taking care of Carys and the boys in our home so that Conor and I could have a night away together. That was the first time since she had been born that we ever spent a night away from her. (it helped that one of my friends was a nurse). Conor and I had a fabulous care-free time, it rekindled our relationship, and refreshed us.

No one I know would give up their caring role, or want to be paid to do it. But we would all appreciate a few hours off now and again… you have no idea how much!

So maybe this Carers Week, if you know someone who fulfils a caring role, maybe you could offer to help out by giving them some time off. Take it from me, they’d love you for it! Carers do a great job, and save the state an awful lot of money. Let’s show them some appreciation, and remember to care for the carers.

You can find out more about Carer’s Week here.

Last year, I appeared on local radio during Carer’s Week. You can listen here.

#CarersWeek #CFC #specialneeds #motherhood #CoCavan #carer #disability #Ireland #disabled #CardiofaciocutaneousSyndrome #Carys

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