Little respite from labour of love

VIRTUAL PRISONER: Gwen Hyde, of Tabulam, is upset she is unable to obtain respite care for her husband and is lucky to get one day off every six weeks.
VIRTUAL PRISONER: Gwen Hyde, of Tabulam, is upset she is unable to obtain respite care for her husband and is lucky to get one day off every six weeks. Jerad Williams

FOR all but a few days each year, Gwen Hyde is a virtual prisoner of her remote farm about 45 minutes from Tabulam.

Mrs Hyde, 60, spends her days caring for her husband, Archie, 83, who suffers from dementia and severe arthritis. Only when she can get someone else to watch him can she leave to do basic jobs such as buying feed for the animals on the farm.

Under her current respite care arrangements, that works out at about one day every six weeks.

On the other side of the region, at Burringbar, Alex Alexiou and his wife Kelly Ryan just need a good night’s sleep.

For more than two years, the couple, along with Ms Ryan’s mum, have been giving around-the-clock care to their daughter Artemissia, 3, who has a rare brain disease.

Some hard fighting has yielded amazing gains in the little girl, but she still needs constant monitoring which means none of the three get to sleep through a night without the help of a respite care worker.

More hard fighting won the family funding for respite care, but Artemissia’s medical needs are so high the worker needs to be qualified as a registered nurse, and finding one of those around Burringbar has proven difficult.

The two families point to significant holes in respite services designed to provide back-up to people – usually family members – who often sacrifice their own quality of life to make the most of someone else’s.

Mrs Hyde said she had been caring for her husband since his dementia started to become debilitating 10 years ago. It’s still getting worse.

The easy option might be to put Mr Hyde in a nursing home and go on with her life, which is no option at all.

“I believe people should be alive to live until they are dead,” she said.

For Mr Hyde that meant being able to work the farm, under supervision.

“Archie is old – he’s done his bit and he should be cared for. When we went to war he left school to run the dairy farm – he was 12,” she said.

Mrs Hyde said she used to get a day of respite care for Mr Hyde once a fortnight, but since transferring to a new care provider that had been cut to three days every four months.

Ian Leven, senior service co-ordinator with Kyogle District Care Connections, which provides respite care for Mr Hyde, said the reduced care availability was because Mr Hyde’s previous provider had access to funding sources his organisation did not and was closer to them.

Mr Leven said his organisation was structured so every cent of the money allocated to caring for Mr Hyde was spent on him.

However, respite care generally suffered a Government funding shortage that left most carers without enough back-up, he said.

For Artemissia Alexiou, respite care is essential as she battles tobegin her life.

Her father, Alex, said his hard work fighting to get respite funding was being foiled by a lack of registered nurses able to help care for her.

Mr Alexiou said the Queensland-based care provider responsible for helping look after Artemissia had plenty of nurses on its books, but few prepared to travel to Burringbar.

Any registered nurse willing to help provide respite care toArtemissia should call the Crewe Sharp agency on 07 5504 7760.

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