Looming crisis: Nearly 500,000 unpaid carers and a rapid ageing population

Marilyn Wales with her late husband Geoff in one of their last moments together. Photo / Supplied

The Government has today announced that partners and spouses will be paid up to $25.50 an hour to look after ill or disabled family members. They are changes to a law that has been described as a "shame on society". Health reporter Emma Russell looks at the reasons behind the revamp.

Every morning Geoff Wales would wake at the crack of dawn - often distressed.

After resting her eyes for less than four hours in the neighbouring room, his wife Marilyn would rush to his side.

Their morning routine was well-practised. She would get him breakfast, make sure he took his medicine and wash his sheets. A carer, provided by the DHB, would soon arrive to help shower and dress him. In that time Marilyn would get ready for work.

The carer would leave after 40 minutes and a family member, friend or carer - who was assigned on a weekly roster and paid for out of her own pocket - would take over.

After a long day at the University of Auckland, where Marilyn works as a PA for management staff, she'd head home to the man who still, despite all their hardship, managed to put a smile on her face in a moment of sadness. Geoff would tell her he hadn't had dinner, despite the empty containers sitting on the kitchen bench, the effects of his dementia taking over.

"'Yes, you have', I'd say before he'd quickly reply 'it's not dinner without dessert'."

At 10pm she would settle him into bed and remind him how lucky they were to have found each other and she'd shed a tear as she wasn't sure if he understood. Then she would get started on the housework, prepping her husband's meals for the next day and re-checking the week's roster to make sure whoever was on the next day was still available. At 1am, she would take herself to bed - when she knows Geoff is settled. Four hours later their day started again.

Geoff battled Parkinson's for 15 years which slowly stripped him of his ability to walk, talk and move properly. In his final three years he also developed dementia which crippled his memory and took away some of his brain function. It's been almost two years since he died.

Marilyn, now 63, was one of around 480,000 unpaid New Zealanders whose life had been severely impacted as a result of caring for a disabled or ill loved one without any financial support.

Marilyn and Geoff's story

The pair had been mortgage free at their Newmarket villa but decided to move to a home at Stonefields in East Auckland that was more accessible for Geoff and better suited to his daily needs as his health started to deteriorate.

As a result of the cost of Geoff's carers and medical bills Marilyn will be paying off her new mortgage well into her retirement years.

She was only entitled to the carer for 40 minutes a day and respite care, which she didn't use. After paying for his medical bills and care during the day, there was very little left over which meant it was financially impossible to quit her job.

It's too late for Marilyn, but the Government is now changing a disability law so that spouses and parents will be paid to look after their disabled family members. The changes, announced today, will come into effect in 2020.

Being paid to care for her husband would have meant Marilyn could have quit her job, spent more precious moments with him without worrying about moving "financially backwards" while trying to pay a mortgage, and have been able to enjoy a good night's sleep.

In the end, the late nights took a toll and as Geoff's health worsened she had no option but to put him in a dementia unit. She describes getting to a crossroads - either pulling back on work - which was out of the question financially - or lowering her standards for rest home care.

"There are very few dementia units suitable for people that you love and your options become hugely reduced when their level of dementia worsens," she said.

"A lot were extremely run down buildings that were smelly and felt almost dirty, like very unclean - there were very few that made me feel comfortable and reassured he would be in good hands."

She lowered her standards and after checking into the dementia care unit, Geoff died less than a month later.

Changing the tune

In September last year, Health Minister David Clark and former associate minister James Shaw announced the decision to repeal a policy known as Funded Family Care that prevents spouses and parents for being paid to look after their disabled or ill loved ones.

Overhauling Part 4A of the NZ Public Health and Disability Act, which underpins the policy and also bans families taking discrimination cases about it to court is also being looked at.

Nearly nine months ago Health Minister David Clark announced the Government's decision to repeal the policy known as Funded Family Care. Photo / File

Funded Family Care policy excludes spouses but pays other family members a minimum wage. Under the policy, the disabled or ill loved one also has to be the employer creating a barrier for children to "employ" their parents.

This was rushed through under urgency by former Health Minister Tony Ryall in 2013.

Before 2013, the Ministry of Health had a policy of never paying carers of adults with disabilities if they were related.

Currently, spouses are not entitled to be paid for the care of their disabled or ill loved ones.

District Health Boards offer a temporary respite service to people who support a family member or friend living with them in their home. Depending on the need, this can be up to one week every three months.

Genter says she knows that people working hard to support their loved ones are awaiting a kinder and fairer agreement than under the previous Government.

"The policy is a nightmare for families involved and her office remains committed to a kinder and fairer agreement with carers.

"The Carers' Strategy Action Plan will represent an important step in helping carers get the support they need and both the Minister of Social Development and myself to support this work."

Associate Health Minister Julie Anne Genter, who is leading the issue, says she hopes to make an announcement within the next month. Photo / Mark Mitchell

A rapidly growing ageing population:

Health experts warn New Zealand's rapidly growing ageing population is a looming crisis and urgent Government action is needed.

Massey University sociologist Paul Spoonley says the Government has been relying on family members to do a job for which they are not being financially recognised for and the emotional toll it's putting on them has been ignored.

"They are being taken for granted too often and with the growth of people needing this care, it's particularly concerning."

In 2013, there were 600,000 New Zealanders aged 65 and over. By the mid-2020s that age group is expected to double to 1.2 million as lifestyle and modern medicine are keeping people alive longer.

At the beginning of this decade, 48,000 New Zealanders had dementia. By mid-2020s that number is forecast to jump to 75,000.

New Zealand Aged Care Association chief executive Simon Wallace says the pressure on family carers is huge and is likely going to get worse as the ageing population grows.

New Zealand has about 39,000 rest home beds and about 90 per cent are occupied. However, Wallace says there is a huge regional variance and in some districts, such as Hawkes Bay and Northland, demand was high.

He says by 2028 16,000 extra beds will be needed, especially for dementia care. Currently, we only have 4700 dementia beds and this is a population that is growing rapidly as people are living longer.

"We need to acknowledge this growth and then understand how we are going to best support it so people have options - whether that is in their own home or rest home care.

"It is hugely concerning the Government has no long-term plan for this."

Jill and Sydney's story

Jill Choy, 74, is the full-time carer for her husband Sydney, a 85-year-old former doctor, who has been battling Parkinson's for more than 15 years and is now blind in one eye.

The crippling disease is slowly stripping him of his ability to walk, talk and move on his own accord. Though the function of his brain is still intact he relies completely on Jill's support.

Jill Choy is the full-time carer for her husband Sydney, a former doctor, has been battling Parkinson's for more than 15 years and is now blind in one eye. Photo / Jason Oxenham

The only funded assistance she gets is for a carer for one hour each day to shower Sydney. She also gets three hours each Wednesday to herself, to get a coffee or her hair done, while her husband is at respite care. And every three months, Sydney is entitled to one week of respite overnight care to give Jill a break.

She is struggling and fears how she will manage in the future.

"Carers need help and it is wrong they are not getting it. I do feel like we are being taken for granted, not by our partners but by the system.

"It's my duty as his wife but it's really like looking after a 2-year-old but a 2-year-old grows up and they don't."

Jill struggles to not get emotional when she talks about how different their lives would be if they had better support from the Government.

The pair met 30 years ago when they worked together at the same medical practice.

"I was a nurse and he was a doctor. We both shared that same passion and bonded over it."

She laughs gently when talking about a time fishing for snapper off a boat in Great Barrier Island together - fishing was another passion they shared. They had planned a retirement of travel and adventure together but that has not happened.

"It's very lonely and at times quite depressing, with Parkinson's, it's difficult to hold a conversation.

"At dinner time we just sit there in silence, it can feel very isolating and you can't go far because you are very aware he could have a fall or something."

About seven months ago the couple moved into a retirement village.

"I didn't want to, but living in a large house and caring for Sydney there was taking a toll on my health," she says.

Jill struggles to not get emotional when she talks about how different their lives would be if Sydney didn't have Parkinson's. Photo / Jason Oxenham

For the past three years, Jill's life has been put on hold as she spends all her time caring for the man she loves.

"My needs get put on the backburner. At times I miss being independent, it can be really hard sometimes."

Jill has her own disabilities, including back issues chronic lumbar and sarcococca sprain, so lifting or moving Sydney can be challenging and she says she has to be extra cautious.

If he has a fall, he can try getting himself back up but it takes half an hour. Often Jill has no choice but to call an ambulance.

Emotional toll on unpaid carers

Advocates and carers say the financial strain is only one small part of the problem. The personal and social restrictions often mean the carers physical and emotional health takes a huge hit.

A 2017 University of Otago study revealed a high number of unpaid family carers having elevated symptoms of depression and anxiety.

Results showed that personal and social restrictions and physical and emotional health were comparatively more of a burden than the financial costs.

Of 48 unpaid carers interviewed in the study, 34 per cent suffered from depression and 36 per cent battled anxiety.

"There is an assumption that because you're a spouse you'll do more," says New Zealand Carers Alliance co-chair Janine Stewart.

"Whereas we are saying you should treat any family member giving that support the same.

"We are just asking they get paid enough to be able to pay the bills so they can keep their loved ones at home for longer."

She says making respite more accessible for families also needs to be looked at and she hopes it will be acknowledged in the Government's changes.

"Any New Zealander with dementia is allocated a certain amount of days of respite care but in some rural regions, that's just not available and it needs Government investment."

For Marilyn, continuing to work meant missing out on precious last moments with her husband that she can never get back.

"I would have liked to have been able to spend more quality time with him but I was always rushing - to go to the supermarket, to make his meals and then it was too late."

Marilyn stressed there was no "one size fits all" solution as everyone handles the situation differently.

"Some can handle being a carer and others can't but everyone should have options and proper support available to deal with it."

In her words, she "managed" the care if her husband but that's not to say she wasn't grossly aware of how much she relied on friends and family who were willing to give up their time to help.

"That played on my mind a lot."

• The carers in this article, share their stories in the book:

Living & Caring: A Guide for Carers and People with Parkinson's, by Ann Andrews and Jennifer Dann.