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A carer goes on holiday: 'Catching a glimpse of the life you once hoped to lead can be painful'

Visiting friends showed me the life I can never have and it hurts, writes Candi O’Reilly.

Candi O'Reilly

IT’S NO SECRET that I don’t enjoy life as a carer. Of course I love my children, but I am impatient, intellectual, impractical, confrontation averse, easily bored, love being outdoors, hate routine and drudgery and many other characteristics that make me completely unsuited to the role I now have.

So it was unfortunate and perhaps even careless that I found myself at the age of 44 as a lone parent to three children and a carer to two of them.

My family

My middle child (now 20) is non-verbal and non mobile, with severe physical and intellectual disabilities.

She is completely dependent for all her needs. For some things she requires two or more assistants for health and safety reasons – unless it’s her mum doing it. I also care for a teenager who needs a lot of additional support.

I worked part-time in my career for a few more years until the increasing needs of my children combined with austerity driven cutbacks to services and supports made that no longer possible.

Carers have to live forever

Now my days and nights are filled with caring duties, a long list of them, which would be too boring to describe here. But I don’t neglect myself either, because as carer Johanne Powell said on Newstalk recently, “The state hopes our children will die before us so they don’t have to provide for them.”

So I have to live forever. Or at least for a very long time, if I want my children to have a good life.

Parenting my eldest child was a breeze. It still is. Even when she has problems in her life, I embrace them and almost enjoy dealing with “normal” issues, the kind you can have a little moan about.

And anybody can give you good advice, if you can’t work it out yourself, which you usually can. It’s not the same with the disabilities and the differences that affect my other two children.

Glimpsing a different life

I cried on Sunday morning when she asked me had I enjoyed the weekend with my friends who were visiting from the UK. The truth is I enjoyed it too much.

But before you think I was dancing on tables, I didn’t even drink any alcohol. I didn’t stay with them either and I was home every afternoon to meet my disabled daughter when she arrived home from her day programme.

I helped her use the toilet, eat her dinner and set everything up so I could go back out to see my friends in the evening. She even came with me on Saturday when we went to the beach, the pub and a bistro that does the best chocolate cake in Dublin (my daughter LOVES chocolate cake).

It can be easier to stay in your bubble

These are friends I have known for more than 30 years. I shared a house with them in the early 1980s. In their company my worries and anxieties just melted away. It was a glimpse into normal life. Don’t get me wrong: they have their problems too, and perhaps they felt sad on the plane back to England, I don’t know.

But as I wrote recently, when you’re living inside the special needs bubble, it’s sometimes easier to stay there. Sometimes a taste of the life you could be living can be painful.

It was so much fun, but now I’m paying the price, with the fall back into anxiety and depression, and a huge pile of housework and administration that piled up over the two days when I took time out.

I pulled myself together and got on with it, but first I took a few minutes to grieve for the life I once hoped to lead.

If you want to help the carers of Ireland please support the #sharethecare campaign with Family Carers Ireland and also the Disability Rights Protest on Thursday March 30th at 11am at Leinster House. Visit oftencalledcathy.wordpress.com to read about Candi O’Reilly’s life and adventures with her disabled daughter.

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Candi O'Reilly

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