Carer: 'The last thing you feel like is an angel'

Eight years after Feilding mother Janine Albury-Thompson strangled her 17-year-old autistic daughter in desperation, other New Zealanders caring for sick, disabled or mentally ill relatives say they still have not got the support they need.

About 225 family caregivers and welfare agencies met at Te Papa in Wellington on Thursday and Friday in the country's first "carers' summit" organised by the advocacy group Carers New Zealand.

American-born technology journalist Laurie Hilsgen, who co-founded the group in the Far North in the 1990s, said when she found herself caring for her seriously ill husband it was hard to find anyone to support her.

"I had never looked after a sick or disabled person. I arrived at hospital with no money, no clothes. I became a carer overnight," she said.

"The thing that really got me was the toileting and the continence thing. The worst thing is that there are some really great products for incontinence. Nobody ever told me that the state funded that.

"He got urine infections because I was ignorant. There is a cost in that."

Since she and Dorothy McCaw, from Otago, set up Carers NZ, she has had many calls from caregivers saying they feel "out of control".

"When Janine Albury-Thompson killed her daughter, what surprised me was how many carers said, 'I have been abusive,' or 'That could have been me'," she said.
"It's a huge thing that is not acknowledged. The last thing you ever feel like is an angel. You feel quite the opposite sometimes because in intensive long-term roles, if there is not a lot of support, you tend to snap."

Caregivers, she said, had rights as well as the people they cared for.

The conference heard that about one in five New Zealanders cares for another adult with physical or intellectual disabilities or mental illness.

That number has grown rapidly since many mental hospitals and institutions for the disabled were closed in the 1980s.

It is expected to keep on growing as medical advances allow disabled people to live well into adulthood.

Carers Australia president Louise Gilmore said Australia had a national toll-free phone counselling service for family caregivers backed by eight carer resource centres and 82 carer respite centres.

"We have an excellent framework. We just don't have sufficient funding."

The numbers

* One in five New Zealand adults provides unpaid care to an adult aged 18 or over.

* 35,000 adults with disabilities in 2001 were getting help from someone else with their personal care, such as bathing, dressing or taking medication.

* 67,000 adults were getting help with preparing meals.

* 100,000 were getting help with groceries and other shopping.

Sources: Carers NZ; Ministry of Health, Living with Disability in NZ, 2004.