Who cares for the carer? New research that studied their wellbeing in rural and regional areas confirms what many carers already know about the challenges they face each day.
FRIENDS expressed disbelief when Pauline Cash didn’t recognise everyone they saw while out and about in their small North East town.
“’Why don’t you know them?’ ‘Because I haven’t spent enough time out here, I’ve spent it at home’,” she would say.
Social isolation can be a common experience for those who care for a family member or partner with a disability, illness or age-related frailty
Fifteen per cent of the adult regional population reported being carers in the University of Canberra’s 2016 Regional Wellbeing Survey, released this week.
Lead author Associate Professor Jacki Schirmer said geography proved significant in the lives of carers.
“The further away from the city, the more likely you were to be spending a lot of hours caring each week and to be experiencing financial stress and hardship as a carer and also you’re less likely to getting those breaks from caring,” she said.
Carers aged 30 to 49 years found things most difficult, for example 51 per cent of this group had been unable to pay their bills on time at some point in the last 12 months.
As well this age group of carers reported higher rates of feeling isolated owing to their caring role (40 per cent), having no access to respite care (42 per cent) and feeling the contribution of carers was not recognised by the broader community (53 per cent).
“So we’re seeing big financial stress for younger carers, a lot of time spent caring, a lot of difficulty accessing breaks and we really need to make sure we’re delivering services that support those younger carers in particular,” Dr Schirmer said.
Life stages made a difference, with those who became carers aged 65 or older more likely to be retired, perhaps owning their own house and not having to choose between work and caring.
“There's a bigger hit to your life as a whole when you’re a younger carer,” she said.
“There’s less of a place for them, they feel so much more isolated than the older carers.
“And then they have a huge financial hit with that because they’ve lost an income, usually at a time when they’ve got a mortgage and they’re bringing up kids as well.”
Wodonga’s Redcliffe family knows all about this demographic.
Paul works two jobs so his wife Katrina can be available to care for their three sons, Jarrod, 18, who has autism, Jack, 14, with chronic pain, and Nate, 10, chronic fatigue.
“Every day is chaotic, very unpredictable, especially with chronic pain and chronic fatigue, you never know what the next day brings,” Mrs Redcliffe said.
A youth worker with a psychology degree, Mrs Redcliffe has been unable to remain in the workforce since Jarrod’s birth.
“I’ve tried, but you just get to a point where the emotional stress of having to care just doesn’t leave anything left in the tank to do paid work,” she said.
“Just to get to work some days was such a struggle, you’re just exhausted.
“I was getting no sleep, we were at the hospital all the time.
“It would be hard for an employer to run a business when your staff member’s off all the time.”
Hard, too, for outsiders to understand what’s going on.
“It’s like any situation, you don’t get it until you’ve been there,” Mrs Redclffe said.
“So I can tell someone what my life’s like; they don’t understand or they think you’re over-exaggerating.
“Most of the time we’re telling you only a small portion of what it’s like to be a carer.
“This is why carer support groups are so important too because you’re dealing with other carers and they get it.”
One of the things we can do right now is to make sure carers feel recognised and valued. If you know carers, get out there and tell them just how much you appreciate the work they doAssociate Professor Jacki Schirmer
Pauline Cash, of Tawonga South, said that need for support didn’t end when the person being cared for died.
Mrs Cash, one of the facilitators of the Kiewa Valley Carers Support Group, moved to a purpose-built house in the North East with her husband Don, “a seven-foot-two quadraplegic”, in 1989.
“It took somebody two years to get me to go to a carers group,” she said.
“I just didn’t think I was, you just don’t think you are a carer when you’re their husband or wife.”
Mr Cash died in 2006 and now his wife uses her experience to help others, some of whom are also widowed.
“People have had a go at me for being in the carers group and I say, ‘No, carers don’t have enough time to run a carers group’,” Mrs Cash said. “Some of them have never got over the loss and they just come together because they know people listen to them.”
Dr Schirmer said taking time out from their responsibilities, simple to say but hard to achieve, remained a key factor for carers.
"The ones who had a really high level of wellbeing, they had that access to breaks from caring, they had supportive family and friends, they felt recognised by their community," she said.
"They're all things we can do to help some of the others.
"It's not necessarily taking care of the person that someone's caring for, it might be helping by cooking a meal once a week or by helping out with housework, things like that."
Mrs Redcliffe said extended family helped out, but her family received no formal respite assistance.
“We just push on,” she said.
“My hope is that the NDIS will make things easier for carers in that there’s more support for the person with a disability.”
Also useful would be carer umbrella groups receiving the certainty of ongoing government funding.
“It would be a huge relief for carers to know that there are those carer agencies, such as Carers Victoria, Carers NSW that will be continuing to advocate for the carer and also will provide some financial assistance for programs for carers,” she said.
Mrs Cash highlighted the costs government would incur if carers did not take on their roles.
Her husband had been living in a facility before they married and they received no outside carer help for nearly half of their 25 years together.
“I worked out how much I’d saved the government and it was something like $7 million,” Mrs Cash said.
Dr Schirmer said everybody had the opportunity to improve a carer’s lot.
“One of the things we can do right now is to make sure carers feel recognised and valued – quite a few actually feel they’re kind of invisible,” she said.
“If you know carers, get out there and actually tell them just how much you appreciate the work they do.”