15 Jun 2015

Young carers: At home, unheard and often alone

8:43 am on 15 June 2015

There is a group of young people in New Zealand that very little is known about and despite the vital role they carry out, their world is mostly invisible to the rest of us.

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Young carers are children and young adults who provide significant ongoing support for loved ones who are ill, elderly, or disabled, and those experiencing a mental illness or addiction.

Based on 2013 census data, and with help from global young caring expert Professor Saul Becker, Carers NZ estimates that 8 per cent of New Zealand's under 24-year-olds are young carers - about 40,000 people.

But the term “young carer” is not widely recognised so many those who fit into the category aren’t even aware it exists, not much is understood about their experiences, and very few policies are in place to support them.

Many young people end up carrying the weight of caring on their shoulders alone.

There are only a handful of studies on young carers in New Zealand, but based on international research, young carers have less opportunities to socialise, lower educational achievement, and greater unemployment than their peers.

While there are challenges, many young carers emphasise that caring is a positive experience that they wouldn’t take back. However, without adequate support, their own health and wellbeing can be seriously affected.

‘MY LIFE WAS SO DIFFERENT’

 Alicia Wong and her mother Kai, who suffered a stroke.

Alicia Wong and her mother Kai, who suffered a stroke. Photo: Diego Opatowski/RNZ

Alicia Wong can tell you about the day her mother had a stroke with impressive detail.

“It was October. The 5th of October at 5 o’clock. I was working on an art project for school and waiting for my sister to come home with the cakes.”

That day, Alicia and her sister were planning to surprise their mum, Kai Wong, with sweets and flowers. They were celebrating the news that the cancer in her bowel was receding. “The doctors had just told us that mum could stop her chemotherapy early. We were really happy,” Alicia says.

Just before 5 o’clock, the doorbell rang. Her sister’s then-finance had arrived with a bunch of flowers for Kai, but something was seriously wrong.

“Mum started to speak and she was trying to say that she wanted to get a vase for the flowers, but she couldn’t. She was slurring and looking really lost."

Alicia’s mother suffered a stroke and spent the next two months in hospital, paralysed down the left side of her body.

The first few years were especially hard and Alicia, who was just 16 at the time of the stroke, says her mum had to learn everything again - talking, moving, showering, brushing her teeth all with one hand.

“Her condition was really poor so we did everything for her. We had to grow up really fast.”

Alicia and her sister helped Kai with showering, dressing, and eating. The girls drove their mum to therapy and doctors’ appointments, they cleaned, cooked and did the laundry while juggling study.

Something I would think, ‘I wish my life was like that,’ especially when other mums could do stuff for their kids.

It’s been six years since Alicia’s mum had a stroke and her condition has improved immensely. Though she’s still paralysed in her left arm, she is mobile again. Alicia knows she’s had to deal with more than most people her age.  

“My life was so different when I compared it to other people. Something I would think, ‘I wish my life was like that,’ especially when other mums could do stuff for their kids.”

Despite the struggles, she sees the silver lining in the hardship, saying the stroke brought the family closer and made her relationship with her mother stronger.

Alicia, now 23, is one of thousands of New Zealand’s young carers providing ongoing care for someone with a disability or illness. Although she’s been caring for a quarter of her life, Alicia never thought of herself in that way, in fact, she had no idea the term “young carer” even existed.

“I think it would’ve been quite nice if I had that label and knew that there was a community of other young people who were also like me. Kind of like a support system where we’re all in the same boat.”

INSPIRED BY ‘BEEFY’

 Lauren Donnan and her brother Beefy play games together.

Lauren Donnan and her brother Beefy play games together. Photo: Diego Opatowski/RNZ

Lauren Donnan, a former young carer and PhD student at the University of Auckland, wants to help set up the support all young carers need.

Her research looks into the lives and experiences of young carers in the country and she’s interviewed almost 40 current and former young carers as part of her work.

The stories the young people told her hit close to home for Lauren who spent years caring for her older brother, Beefy, who has autism and an intellectual disability.

Lauren’s mother died of Melanoma when she was 14. Her dad, an international flight attendant, had to go back to work and his job meant he was away for weeks at a time. While he was gone, Lauren took over looking after her brother.

“He’s certainly not your run-of-the-mill guy,” says Lauren. “He’s seriously funny and very unique.”

Nobody's quite sure where the nickname “Beefy” came from, but it’s stuck. So has the name Beefy gave Lauren - “Nerd”.

“The other day Beefy said to me ‘wow Nerd, you have huge teeth! That’s weird!’ and cracked up laughing. He certainly keeps me humble.”

Lauren chuckles remembering how Beefy once decided he didn’t want to take showers anymore. The family tried every trick in the book to get him to wash, but for three months he refused.

Beefy says all the time ‘you’re so much like Mum’ and that’s the biggest compliment he could ever give me.

“It got to the point where dad got a hose through the lounge window and just hosed him down. I remember looking at him thinking ‘this is your own making.’”

As well as trying to keep Beefy clean, Lauren cared for her brother every day by helping him take his medication, preparing their meals, washing their clothes, doing the shopping and keeping the house tidy.

Looking after Beefy was a challenge, but Lauren carried out her role with pride. “Beefy says all the time ‘you’re so much like Mum’ and that’s the biggest compliment he could ever give me.”

“I think anyone in that situation would’ve done the same. That’s not saying that I was always cheerful and did it all singing Mary Poppins, but in that situation, you do what you have to.”

Lauren’s aim is to use her own story, as well as the stories of other young carers, to effect policy and establish support that will help them deal with the unique struggles they face. She’s also launched a campaign on Givealittle to raise awareness and funds for young carers in New Zealand.

One of the pressing challenges Lauren has seen for young carers is trying to keep up with school while trying to provide care.

Some of the carers Lauren spoke to described having to get up in the middle of night to change soiled sheets or take the person they’re looking after to the bathroom. That meant they were tired at school the next day, making it hard to concentrate and be present in class.

Young carers can also miss out on school when they’re taking the person they care for to appointments, or just having to be home to care for them during the day.

Another difficulty, says Lauren, are the higher rates of anxiety and depression among young carers - something she knows firsthand.

“For me, I’ve definitely suffered from anxiety. I have a real need to keep everything under control because it’s what I’ve always done. I guess for some of the young carers, they’re grieving while caring, too.”

Lauren can’t remember a time where she didn’t go home after an interview with a young carer, curl up on the couch and cry.

“My research was one of the hardest things I’ve ever done.I saw a counsellor because I wasn’t coping,” she says. “It’s just incredible what these young people are doing without support and it just made me feel like I needed to do something.”

LISTEN TO LAUREN DONNAN'S INTERVIEW ON RADIO NEW ZEALAND:

But she’s wary of focusing solely on the negatives without taking in consideration how much caring benefits young people.

“One of the things that really stuck out for me in the interviews was that the young carers would never take that caring experience back. They loved it, and if anyone had tried to take it away, they wouldn’t have let them.”

She says young carers get the chance to develop skills that others might miss out on, like organisation, time management, and a sense of maturity and responsibility.

“I wouldn’t be doing a PhD if it wasn’t for my understanding of what ‘hard work’ means, thanks to Beefy really.”

Before being able to put support in place for the carers, says Lauren, young New Zealanders first have to recognise that they are young carers.

“If you don’t know something exists, how can you see it and how can you help? It’s about how we reach young carers to self-identify.”

‘IT’S JUST LIFE’

 Saffron likes to have her hair brushed by Dee.

Saffron likes to have her hair brushed by Dee. Photo: Diego Opatowski/RNZ

Dee Davies, 21, had no idea she was a young carer, even though she’s been doing it since she was about 9 years old.

Her 17-year-old sister Saffron was born with autism and when their parents split up, the responsibility to look after her fell more heavily on Dee’s shoulders.

“I remember having babysitters come in when mum had to work, but they didn’t really know how to deal with her, so I had to step in and babysit for the babysitter.”

Dee helps Saffron with almost everything. She showers her every night and helps her go to the toilet. She gets her dressed for school, cuts up her food, and puts on YouTube clips for her to watch.

Saffron can be handful, but on a good day, Dee says she brings joy to everyone around her.

It wasn’t until Dee started going to high school that’s she noticed she wasn’t like most teenagers. Her friends were surprised at how much she did for her sister.

“It’s still kind of weird thinking about it because I don’t really think of it as being different. It’s just sort of how it is. It’s just life.”

The reality of looking after Saffron ment Dee often missed out on being with her friends.

It’s still kind of weird thinking about it because I don’t really think of it as being different.

She remembers not being able to go to sleepovers if her mum was starting work early because she had to be there when her sister woke up.

“I did used to get upset sometimes. I couldn’t just go out and do what I wanted to do. I had to think about Saffron first.”

Dee realised she was a young carer after finding a Facebook group that was launched last year. She says before that, she didn’t know she was unique, because caring was “second nature” to her.

Caring for her sister has helped Dee forge a career path. She’s been able to use her skills to land a job as a caregiver with Health Care New Zealand in Whakatane.

LEARNING TO LOVE AND LAUGH

Auckland student Manusiu Latu’s has also used her experience caring for a loved one to shape her life plan.

The 24-year-old spent years helping care for her grandma, and she's now using the knowledge in her master's degree, looking at Tongan family caregivers for the elderly.

Manusiu and her family moved to New Zealand from Tonga 11 years ago. They bought their grandmother along, knowing that she needed to be looked after.

“In our culture caring for the elderly is the family’s job,” says Manusiu who is named after her grandma. “It’s almost frowned upon to put them in homes. We wanted to take care of her ourselves.”

Her grandmother suffered from dementia and her condition deteriorated over time, until she didn’t recognise anyone in the family. The severe arthritis in her knees means she was bed-ridden for about seven years.

“At the beginning she would just talk about random things and then it became gibberish. Eventually, she lost the strength to speak. We had to look at her body language to see what she needed.”

Manusiu’s grandmother lived at home with her and seven other family members. Everyone did their part to care, especially Manusiu’s aunty who looked after grandma during the day while the family were at school and work.

On the weekends, Manusiu would give her grandma a bath with a wet towel since she couldn’t walk to the shower. She would change her diaper, feed her and help dress her.

Eventually, she lost the strength to speak. We had to look at her body language to see what she needed.

It wasn’t easy seeing her grandma’s health get worse so Manusiu says she used humour as a way to cope.

“We used to joke about the fact that grandma had so many near-death experiences in the past, but she was still going,” she giggles.

“If someone outside the family heard us, they might have thought we were being insensitive, but it was a way for us to see the bright side of things. Otherwise, it would’ve got really depressing.”

Manusiu’s grandma died in June last year and it was just before she did that Manusiu read about the term “young carers” in a textbook at university.

“It was so wonderful meeting other young carers because they share the experiences you’ve had and they’re able to empathise. It’s quite empowering.”

For Manusiu, being a young carer was a life-changing experience and she wouldn’t change it for the world.

“Despite all the challenges you do face, it’s really positive. It makes you stronger.”