KOOTINGAL mum Shirley McCluand knows all too well the burden carers face – the hours they put in, the restrictions on work options and the sheer emotional rollercoaster of it all.
Shirley and husband John’s first child, Terry, who is now 35, was born 14 weeks prematurely and, after a case of measles, developed epilepsy.
But unbeknownst to the family, he also had cerebral palsy – something they didn’t pick up on at first, as he was their first child.
“To us, he was normal – he had his bottles, he had his baths. They told me in Sydney when he was born there would be some kind of problems, but they couldn’t tell me what,” Mrs McCluand said.
A survey conducted every two years by Carers NSW is seeking information from informal carers.
The survey is conducted to help the organisation stay up-to-date with the issues that matter to carers.
Mrs McCluand said frustration was a huge aspect of caring for someone – as was the importance of being able to find respite care for the person being looked after so the carer could recharge enough to keep coping.
She was unable to get respite care while Terry was growing up because “he didn’t fit into their criteria”.
Terry has only started, from late last year, going to Challenge Disability Services.
Although he’s not in the worst cerebral palsy category and his epileptic fits have dropped away, he can’t read or write and has stiff limbs, which make one leg shorter than the other. Toilet training is another area he will never get a grasp on, says his mum.
“This is what we were given and you just deal with it,” she said.
“We just thank our lucky stars that he is alive and he is as good as he is.”
Her husband works fulltime but she doesn’t.
Mrs McCluand gets the carers’ allowance of about $114 per week – not the better-paid carers’ pension.
But she said carers should be paid – which would take away one component of stress.
“Day to day, I think carers should be paid – carers shouldn’t be thinking ‘I need a job, but I can’t get a job because I can’t do the hours’,” Mrs McCluand said.
“I think being a carer is a fulltime job ... if they were prepared to pay me, I’d be happy to go out and do volunteer work every day while he’s at Challenge.”
To access the 2014 survey, visit the Carers NSW website.
If you have any questions, or would like a hard copy of the survey, call 9280 4744 or email firstname.lastname@example.org