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For 30 years, Tucker has been unable to work a normal job.
“I had to help him dress and clean, but sometimes he would collapse for no reason,” she said.
“You have to be vigilant 24 hours a day, and we’ve been doing this for 30 years.”
During this time, she had almost no rest.
“I don’t have days off, I’ve only had two nights off in the past 12 years,” she said.
“They said he could go to a nursing home and (let me) rest, but I can’t do that. He’ll be out soon, and he can’t use oxygen on his own. As a parent, I can’t do that.”
Tucker said that now that she and her husband are of retirement age, they have no savings.
They each live on pensions, and their son is eligible for maintenance grants.
The money was just enough to make ends meet, but not enough to give her son the life he deserved.
“We don’t go out, we don’t do anything. We just pay the bills and that’s it. No extra money,” Tucker said.
“He wanted an apartment, he had a girlfriend and he wanted to live with her, but, of course, we couldn’t provide him with any funds.”
Tucker is one of many New Zealanders who has taken on the responsibility of caring for a loved one.
The latest census found 432,000 people in a similar situation.
Laurie Hilsgen, chief executive of the New Zealand Carers Association, said this largely unpaid labour created billions of dollars in social value.
“We commissioned Infometrics to do some economic analysis, and they found that home care is worth at least $17.6 billion a year to the economy,” Hilsgen said.
Physical, mental, and financial stress can overwhelm caregivers.
Earlier this week, Hilsgen was in Whangarei to sit in on an attempted murder trial involving a family carer.
She said: “There is a social trend globally where family carers feel so hopeless and helpless that they see no way out… they feel the need to commit suicide and the family members they are supporting.”
“Two-thirds of care workers suffer from depression and anxiety, about the same number experience social isolation and loneliness, and more than 40% have been injured on the job. The risks to their health in the long term are high.”
These risks disproportionately affect women, Hilsgen said.
“Two-thirds of carers are women, so for them, choosing to care means they often have to continue working after 65 because they can’t earn enough to save for retirement, so there are health implications for them, there are financial implications as well, and it hurts women disproportionately.”
Tucker feels like every day is a battle for himself and his son.
She has fought to convince the government to provide funding for improved accessibility in bathrooms, which she believes are dangerous.
“They kept coming back to me and saying, ‘No, he’s not disabled enough,'” she said.
“My son did die in that shower. I got him out and I brought him back, but it wasn’t until then that the government actually stepped in and said, ‘Actually, maybe he’s disabled enough’.”
Tucker said with little opportunity to rest, she put her health on the back burner.
“I injured my shoulder a while ago but I refused surgery because I couldn’t sit still for six weeks,” she said.
“I’m just trying to cope because I don’t have time off.”
But Tucker has no regrets.
“He’s our son. You have to take care of him … because that’s your job. A lot of people can’t do what I do, but they still want to do something, and I’m content to be there for him,” she said.
“I love my son more than anything and I wouldn’t change anything I’ve done for him. I don’t regret anything I’ve done for him at all.”
Neil Woodhams’ wife was diagnosed with multiple sclerosis about three decades ago, and he says her condition changed both of their lives forever.
“That means I stopped working full time in 2002 and she stopped working about four years ago,” he said.
“I get her out of bed, get her dressed, put her to bed at night… for example, being away from home for a week, that’s just not possible.”
He felt the government did not value the work he did for his wife.
“Carers have been largely ignored by the government and I think many carers feel they are being taken advantage of. We are providing support and without that support the government needs to take action.”
Hilsgen said that despite the number of nursing staff reaching hundreds of thousands, the government did not represent their interests.
The New Zealand Carers Association plans to petition the Crown to set up a new department or commission dedicated to carers’ issues.
“We are calling on the government to establish a minister or commissioner specifically focused on family carers, their roles and the support they receive, as well as meaningful investment in them and a focus on their wellbeing.”
She said recent changes to the carer support subsidy should be reversed immediately.
“Carers are completely disadvantaged when the Department of Disability Affairs and the government re-impose strict policies on how carer support payments can be used,” she said.
“That’s the only state support most carers get and if you’re a carer you need breaks. You can’t keep working like a machine.”
After enjoying decades of unpaid labor, Hilsgen said it was time for the government to give back.
“If the government cares about ensuring its largest workforce of health, disability, aged care and social services can be sustained then they should absolutely resume providing flexibility.”
The Department of Disability Affairs Whaikaha said it was conducting an independent review of its disability support systems.
Despite the rule changes, it reiterated that the Carer Support Payment can still be used to cover some costs.
“The scheme provides reimbursement for some of the costs of care and support for people with disability whilst they are on leave,” spokeswoman Amanda Bleckmann told ABC New Zealand.
“A person’s Carer Support Payment is not means-tested and does not impact on any other benefits (or) superannuation entitlements they receive.”
In rare cases, she said, caregivers may be eligible for personalised funding.
Carers NZ said support services were too limited.
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