(file image) Photo: 123RF
New Zealanders looking after disabled family members say the long hours and lack of support is pushing them to the brink.
Carers NZ says it amounts to billions of dollars in unpaid labour, and is urging the government to offer more support.
At birth, Karen Tucker's son was given just eight years to live. Now he is 30, living with Down syndrome, Eisenmenger syndrome, and arthritis.
He uses a wheelchair and an oxygen supply, and needs 24/7 care.
For 30 years, Tucker has been unable to work a normal job.
"I have to help him with dressing and cleaning, and sometimes he just, for no reason at all, collapses," she said.
"You've got to be on the ball 24/7, and it's been 24/7 for 30 years now."
NZers looking after disabled family members calling for more govt support
In that time, she had barely taken a break.
"There's no days off, I've had two nights off over the last 12 years," she explained.
"They say he can go into a rest home [to give me] respite, but I can't do that. He would be out of that door before you know it, and he can't administer his own oxygen. As a parent I just can't do that."
Now at retirement age, Tucker said she and her husband did not have any savings.
They each lived on superannuation and their son was eligible for a supported living payment.
It was just enough to get by, but not enough to give her son the life he deserved.
"We don't go out, we don't do anything. We pay our bills and that's pretty much it. There hasn't been spare," Tucker said.
"He wants to go flatting, he's got a girlfriend he wants to go and live with, but of course we can't fund him into anything..."
Tucker is one of many New Zealanders who have taken responsibility for their loved ones' care.
The latest census found 432,000 people were in a similar position.
Carers NZ chief executive Laurie Hilsgen said this largely unpaid workforce generated billions of dollars in social value.
Carers NZ chief executive Laurie Hilsgen. Photo: SUPPLIED
"We commissioned Infometrics to do some economic analysis and they found the annual economic value of family caregiving is at least $17.6 billion a year," Hilsgen said.
The physical, mental and financial stress could push carers over the edge.
Earlier this week, Hilsgen visited Whangārei to observe an attempted murder trial involving a family carer.
"There is a global social trend of family carers feeling so hopeless and helpless, they see no way out... They feel they need to kill themselves and the family member they support," she said.
"Two thirds of carers experience depression and anxiety, about the same number experience social isolation and loneliness, and more than 40 percent get injured in their role. They have high wellbeing risks over time."
Those risks disproportionately impacted women, Hilsgen said.
"Two thirds of carers are women, so a choice to care, for them, means they often have to work well beyond the age of 65 because they aren't able to work enough to save for retirement, so there are wellbeing impacts and there are also financial impacts which largely hurt women."
Tucker felt every day was a battle to advocate for herself and her son.
She struggled to convince the government to fund accessibility improvements for their bathroom, which she believed was dangerous.
"They kept coming back to me and saying 'no, he's not disabled enough'," she said.
"My son actually died in that shower. I got him out and we got him back again, but it took that before the government actually got on board and said 'actually maybe he is disabled enough'."
With little chance to take a break, Tucker said she had put her own wellbeing on the backburner.
"I wrecked my shoulder a wee while back, and I've turned down having an operation because I just can't sit immobile for six weeks," she said.
"I'm just managing with it how it is, because I can't afford that time off."
But Tucker had no regrets.
"He's our son. You do it... Because that's what you do. There are a lot of people who couldn't do what I do, who still want to be doing stuff, while I'm quite content to be there for him," she said.
"I love my son more than anything, and I would not change what I've done for him. I don't begrudge one minute of what I've had to do for him."
About three decades ago, Neil Woodhams' wife was diagnosed with multiple sclerosis. He said her condition permanently changed both of their lives.
"It meant I stopped working full time in 2002, and she stopped working about four years earlier," he said.
"I get her out of bed, get her dressed, put her to bed at the end of the night... The thought of going away for a week, for example, just isn't on the cards."
He felt the government did not value the work he did for his wife.
"Carers are largely ignored by government, and I think many carers feel they're taken advantage of. We're providing support that, if it wasn't there, the government would need to pick up."
Despite carers numbering in the hundreds of thousands, Hilsgen said their interests were not represented in government.
Carers NZ planned to petition the Crown to establish a new ministry or commission entirely focused on carers' issues.
"We have called for a minister or a commissioner [to be established] in government that does focus on family carers, their role and supports for them, and alongside that meaningful investment and focus on their wellbeing."
She said recent changes to the Carer Support subsidy should be reversed immediately.
"Carers were absolutely thrown under the bus by the Ministry for Disabled People and the government when they returned to a highly restrictive policy of how people could use the Carer Support subsidy," she said.
"It's the only state support most carers get, and you need respite if you're a carer. You can't keep going like a machine."
After benefiting from decades of unpaid labour, Hilsgen said it was time for the government to give back.
"If the government cares about making sure its biggest health, disability, aged care and social service workforce is sustained, then they should absolutely return to offering flexibility."
Whaikaha, the Ministry of Disabled People, said an independent review of its disability support system was in progress.
Though the rules had been tweaked, it reiterated the Carer Support subsidy was still available to cover some expenses.
"It provides reimbursement for some of the costs of care and support for a disabled person while they take a break," spokesperson Amanda Bleckmann told RNZ.
"A person's Carer Support subsidy is not means tested and has no impact on any other benefit [or] superannuation entitlements they receive."
She said that in rare cases, carers could be eligible for individualised funding.
Carers NZ said those support services were too limited.