Fatigue, a constant companion for Tweed Heads woman.
Fatigue, a constant companion for Tweed Heads woman.

Carer?s endless battle


SOME days, Aileen Cantoni of South Tweed throws up her hands and shouts, "I can't take it any more".

But she always struggles on. The youngest of 18 children, lifelong battler Aileen is an at-home carer for her wheelchair-bound frail-aged mother Helen and Down syndrome daughter Robyn.

This week was the first anniversary of the accidental death of Aileen's grand-daughter Jessica, who was killed after falling from the back of a ute on south Kingscliff beach. Jessica was just 18.

Aileen, 57, was divorced 11 years ago and has osteoporosis.

She estimates she has about one day off from her round-theclock caring duties every three months, when a respite carer is available.

"I feel guilty about ringing and asking (for respite care) because they always say there's no funding," Aileen said yesterday.

She applied for a respite carer for eight hours on Thursday, so she could commemorate the anniversary of Jessica's death.

"They could only give five hours. My daughter came down from Brisbane.

"We went to Jessica's memorial and to the beach where she was killed and lit candles."

Aileen's mother Helen, 93, is waiting for placement in an agedcare hostel.

"I've approached the nursing homes and asked how long do we have to wait and they all say, 'how long is a piece of string'," Aileen said.

Helen was offered a bed in a Piggabeen hostel "but it was in a dementia ward and she's really better off here. She does have her mental faculties".

A visiting carer bathes Helen at home every morning, but Aileen says the carer can stay no longer than 15 minutes.

Richmond MP Justine Elliot this week called on Ageing Minister Julie Bishop to explain why care providers for the aged and disabled had been given less than three weeks to complete a compulsory tendering process to retain their funding.

"Will the government guarantee that no person with a disability or older Australian will lose their community care service as a result of this rushed tender process," Ms Elliot said.

Twin Towns Friends Association organiser Doreen Welsh, who co-ordinates 100 volunteers providing a companion service for 250 aged people living alone, fears "big operators" are about to take over the home-care industry, forcing up fees and creating pressure for pension increases.

Ms Welsh agreed some people who did not really need at-home care were taking advantage of the system and suggested more stringent means testing.

A spokeswoman for Ms Bishop accused Ms Elliot of "trying to scare people", saying the government had massively increased funding for aged and disabled-care services, but there were numerous different care programs and "we are trying to make the process easier".

Ms Bishop's spokeswoman said new operators should be given every chance to provide care services.

"We recognise people want to remain in their homes and we are increasing funding to support carers," she said.

Aileen Cantoni's Down syndrome daughter Robyn, 37, attends an Endeavour Foundation training centre on the Gold Coast every day.

Aileen drives Robyn to a Surfside bus stop at Coolangatta each morning and then collects her from the bus stop at the end of the day. Robyn used to travel on an Endeavour Foundation bus, but had to move to public transport when the Endeavour bus fees went up, Aileen said.

Aileen's osteoporosis limits her mobility, so she relies on a homecleaning service two hours a week. She spends $140 a month for incontinence pads for her mother, because she says there is a five-year waiting period before the pads are provided by the federal government.

Aileen receives disability pensions and carer payments and estimates at least half of her income goes on care-related services.

"We just live from week to week," she said.

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