Who cares for carers?
Caring for a loved one can be a financial, physical and emotional strain. It’s important to know what help is available.
If you’re not an unpaid carer yourself, you probably know someone who is – 2.7 million Australians care for someone, usually a family member, with a disability, mental illness, chronic or terminal physical illness.
The steadily growing number of carers makes a huge contribution to the Australian economy, valued at around $1 billion each week. Yet their own health, finances and careers often suffer. Despite this, Carers Australia CEO Ara Cresswell says, “we know that many derive real satisfaction from caring – usually because it’s an act of love and they know nobody else could provide the necessary care as well as they do.”
Meeting the challenges
That’s certainly the case with Helen Johnson and her son Ben, 23. Ben was born with Rubinstein-Taybi Syndrome, a disorder affecting approximately 600 people globally. It causes profound intellectual and physical disabilities, and Ben has endured 56 surgeries to date. He also has severe autism.
Johnson left her banking career when Ben was born and, with support from electrician husband Peter and older son Jayden, has cared for Ben his whole life.
In 2003, Johnson's father was diagnosed with terminal illness and told he had 12 months to live. He moved in with her and defied the odds to live until 2010, bed-bound for the final two years. The end stage of his illness overlapped with an event that “rocked our world,” says Helen: post-surgery complications left Ben a paraplegic.
Ben was in hospital for six months and, although Johnson had to abandon the social work degree she’d spent three years on, she juggled time with Ben, caring for her father and doing paid work. “I don’t know how I did it, but I’m proud I did and dad was immensely grateful for the support we provided,” she says.
Ben’s paralysis requires an abdominally inserted catheter and daily enemas. Showering and toileting can take 90 minutes each, and one of his parents must check the catheter every two hours through the night. A government funding package provides paid workers for Ben’s daily support and community access, but training workers to understand his needs can be very time-consuming.
It’s not the life Johnson, 54, imagined, yet she remains remarkably positive and has managed to return to part-time work, with a disability service and in banking.
“I’m grateful to have my job and to have Ben, although it hasn’t been easy,” she says. “I don’t know how I cope with the sleep deprivation at my age, let alone meeting Ben’s medical needs. But I’m so proud of our young man and we’re so lucky to have him here. And somehow my husband and I have sustained our relationship, we’re happily married, we have a beautiful elder son – we’re so blessed.”
The Johnsons’ finances are deeply affected by Ben’s disability. Cresswell says this is common and, along with stress-related illness, is one of many disadvantages carers face. As a group, they’re also “extremely time-poor, likely to be unemployed, and many are socially isolated”.
Johnson says Carers Victoria provided key information about practical, financial and general help the family was entitled to. The other things that have helped her prevent burnout are her job and counselling. “I would go crazy if I didn’t have my work,” she says, noting her employers are very flexible, something not all carers experience.
The kind of employment conditions carers need, says Creswell, include “flexible start and finishing times, working from home where the job allows it, job rotation, job sharing, and emergency leave. It’s very important to carers to be able to respond quickly to emergencies.”
Support from managers and co-workers is vital, she adds. “A truly carer-friendly workplace makes the effort to educate all its employees about the role of carers, not just the human resources department.”
As for counselling, Johnson says, “even though it’s not something I would have thought to do before having Ben, I’ve sought it at various times over the years and it’s been enormously helpful”.
The NDIS effect
The National Disability Insurance Scheme (NDIS), which began rolling out last year, is designed to give greater choice to people with a disability and more help for their carers. However, the eagerly-awaited scheme “hasn't necessarily delivered the stress-free life many carers had hoped for,” Cresswell says.
With its wide range of changes, the NDIS rollout has been slower than hoped, and some users and service providers are still adjusting to the changes. In one evaluation, 53% of carers were still providing care 24/7 after accessing the scheme and many others were providing the same hours of care as before. However, around half the carers involved said the NDIS had decreased their anxiety about future support available to the person they cared for.
Johnson is waiting to see how it will affect Ben. “NDIS rolls out here in October, so watch this space to see if life becomes better or more challenging.”
For NDIS information, carer resources and links to state organisations visit Carers Australia. At the government NDIS site you can also find the latest rollouts and see how other people are making the most of the new scheme.