Who is left to take the load when a life-long carer dies?

Carol Nader

November 22, 2010

     

    EVEN as Yvonne Graham lay in hospital dying, she was thinking of her son. For much of her life she had known little else – she was a 70-year-old woman looking after a man, 44. For years, she had been anxious about who would look after him when she died. Last month, she did.

    As a baby, David Graham had been tiny, born very premature at just 24 weeks. As a grown man he was still vulnerable. He had lived in the safe world provided by his mother – a world that, a few months ago, collapsed around him when she was taken to hospital, screaming at the pain shooting through her back.

    When she was finally given a diagnosis, it all happened so quickly. The lung cancer had already spread to her spine. They gave her nine months to a year, but she died within weeks of being diagnosed.

    ”She was terrified that there was nothing in place for him,” says her daughter, Leah Humphreys, who has now inherited the role of worrying about her brother.

    For a man with multiple disabilities, Mr Graham is quite high functioning. He has an intellectual disability, epilepsy and is legally blind. A few months ago, bowel cancer became his new challenge. Despite everything, he tries hard to be independent. ”I don’t let anything stop me,” he says.

    Mr Graham needs supported accommodation. But 1239 people with disabilities are registered with the Department of Human Services for such accommodation.

    According to the Department of Human Services, it costs on average $125,000 a year to keep a person with disabilities in supported accommodation. In a small number of exceptionally difficult cases, it can cost as much as $500,000. To build a facility housing five people costs on average $1.5 million. Labor has pledged 50 new places specifically to accommodate people with disabilities living with an older carer.

    Last week, the opposition promised $50 million to build a rail line linking Avalon airport to Melbourne and Geelong, and the government pledged $77 million on new and expanded school camps.

    ”It’s the difference between the convenience of a transport option and the absolute basic right of living with dignity for carers and their adult children with disability,” says National Disability Services state manager Rhonda Lawson Street.

    What Mr Graham needs is to be cared for, someone to supervise him, to do the cooking and cleaning and make sure he brushes his teeth. He wants a place of his own, with a support worker to help him.

    A meeting will be held later this month with his case worker and the department to try to work out a plan. But it will all depend on how ”urgent” the department decides he is.

    So, he waits, still in the same house in which he lived with his mother, where his brother also lives. But, Ms Humphreys says, this is not an appropriate living situation as his brother cannot be his carer. Ms Humphries has three of her own children, a husband, and her own business. It is not possible for her to look after her brother as well.

    Carers Victoria chief executive Maria Bohan said many carers in their 60s and 70s and 80s were saving the government billions of dollars by caring for middle-aged children.

    ”We also know some of these ageing parents … are now frail themselves, suffering ill health, and some of them are caring alone because they’ve lost their own life partner or their relationship has broken up because of the stress,” she says.

    It is a stress that Brian Broughton is familiar with. He is 72. His wife, Betty, is 74. Their daughter, Debra, 42, has Down Syndrome.

    When their baby girl was born with the condition, a doctor told them, ”Take her home and love her.” And that’s what they did. They even dipped into their superannuation and bought her a house where she could live, with three other young women with intellectual disabilities also living there and paying them rent.

    They have since sold that house and bought a unit closer to them, where Debra lives on her own.

    With the money left over, they have set up a disability trust to pay for Debra’s care and accommodation. She has part-time carers whom her parents pay for.

    As she loses more function, her parents’ worry grows. They have added her name to the register of people seeking supported accommodation.

    But, Mr Broughton says, ”with very little likelihood of getting in”.

     

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