I must check on her. I know she is okay. Nothing can happen. But what if it does? It is my responsibility. I need to go help get out of bed. She may need help getting to the toilet. What if she is hungry?
This is the reality of being an unpaid carer. At 21 years old, I know this well. My whole life my family and I have cared for my sister who has arthrogryposis. This condition means she often needs help getting up, putting shoes and socks on or simply carrying food from one end of the house to the other while she is on crutches. However, her condition changes regularly. With it, so does the amount of care, stress and worry.
But I am not alone. There are more than 2.65 million unpaid carers across Australia. They form part of a silent volunteer force taking on some of the heaviest responsibilities. Caring for their loved ones with a disability, mental illness, chronic condition, terminal illness, an alcohol, or drug issue or are frail aged. Their stories are all unique. The demand for them is also increasing every year. Many fear whether Australia will be able to keep up. This story examines why.
In a 2020 report commissioned by Carers Australia, it was estimated that 2.2 billion hours of unpaid care is provided every year, which accounts for over 42 million hours every week. If the government were to pay for this, the bill would be just under $77.9 billion per year. Unpaid carers are incredibly needed.
Carers WA is the peak body representing and providing services to unpaid carers in Western Australia. Carers WA business development and disability services manager Paul Rodgers explains it’s important carers are recognised.
“If there were no carers in the community the cost to the government would be astronomical. It would bankrupt Australia. The amount of care that families and individuals provide to their care recipient is huge and ongoing and it doesn’t stop. When you are a carer it’s 24/7, 365 days a year, all the time. You don’t finish at five o clock. You are always caring.”Paul Rodgers, Carers WA.
Like most developed countries Australia’s population is ageing. Carers Australia’s report found by 2050 our ageing population will have tripled. With the population ageing and disability numbers increasing, who will be left to provide this care?
At 24-years-old Young Carer Ambassador Jasmine Uitermark from Nollamara has been a carer her whole life. It’s all she’s ever known. From seven years old Uitermark cared for her mum who had multiple sclerosis. After her mum passed, she now cares for her grandmother with Alzheimer’s.
Uitermark and her sister are the guardians and administrators for her grandmother after the State Administrative Tribunal determined someone needed to make decisions on her behalf. The pair share the load of paying her bills, filling out forms, and ensuring she is well looked after. Despite feeling burnt out from caring for her mum, it’s a sense of family responsibility leaving Uitermark needing to continue.
Carers like Uitermark play a significant role in the provision of aged care. As the population ages, demand for carers increases. Policy makers and service providers are committed to retaining existing staff and attracting new ones. While unpaid carers step in, according to Carers Australia demand is expected to outstrip supply within the next 30 years. As the number needing care increases, the number of family members available to provide care will decrease. Experts are calling on the government to step up, including Carers WA.
“We need to come up with systemic answers to some of those problems…It’s a whole community approach needed…It’s a very complex issue and I don’t think it’s been thought of very much,” says Rodgers.
Although she transitioned her grandmother into an aged care facility, Uitermark is still required to play a significant caring role.
“Without us she wouldn’t function. Even in her aged care we must make sure they are brushing her teeth. We have stuck signs up to make sure that’s happening because otherwise we will visit and see there is lots of build-up on her teeth because it hasn’t been done.”
A lifetime of caring means Uitermark had to reach out for emotional support to deal with the trauma she carried. She missed her teenage years. Many young carers report to the Young Carers Network caring restricts their ability to achieve, socialise, participate in extra-curricular activities, and build a sense of belonging.
“A lot of the time when I was in primary school, I would get pulled out of school regularly to go and help if something was going on and my dad needed extra assistance. In high school I remember missing four out of five math classes a week because I would rock up at school at 10 because I had been awake since three or four am the night before helping look after my mum,” says Uitermark.
This is what is encouraging her as a Young Carer Ambassador for Little Dreamers, Australia’s leading young carer organisation. Jasmine and 15 other Australian young carers are creating a report on what services and support young carers have access to, and improvements. This will mean federal and state governments will face the carer crisis.
“At the moment the consultation hasn’t been good enough for young carers, particularly on carer gateway. The only people who were young carers that were consulted were within the 18-25 bracket, so there is a massive portion of teens and kids who missed out on talking about what services they are needing,” says Uitermark.
The carer gateway was created four years ago to ensure services and support were the same across Australia. Uitermark is hoping to improve the services available.
“I think people realise how common it is to have someone in your life who needs extra support, but I don’t think they are putting the linkages in with being a carer, or calling it a caring role, and I think that’s what’s missing in identifying support for what people need.”
Jesse Closel carries a carefree smile, but at 21 years old he holds more responsibility than most his age. Jesse cares for his 23-year-old brother James who has autism. Despite this affecting James’ ability to speak, the two don’t stop. Jesse talks passionately about James and all he is doing and learning.
A lack of funding in James’ NDIS plan means Jesse cares for him every Sunday because of the extra rates paid carers would cost. Otherwise, James lives in a care home with four others.
According to Carers Australia, one in 11 carers is under 25, classifying them as a young carer. Even more go unrecognised. However, Carers WA Paul Rodgers explains recognition is getting better.
“Up until relatively recently it was just part of what families did. As that growing awareness of understanding what a carer is increases, I think people are more likely to reach out for services, which means there is more need for services, which mean services grow.”
The pair grew up in Albany. Here, Jesse cared for James for as long as he can remember. When Jesse was 18, he moved to Perth to study teaching, leaving James behind.
“I missed him a lot. I was always used to having him around. Even though he was quite challenging to live with I love him to bits. He has such a huge personality. There was no one to look after. There was no one to keep an eye on.”
It wasn’t until four months ago that James moved to Perth and Jesse recommenced his caring role.
“Like riding a bike, I slipped right into it. I guess I forgot how much I missed him. That’s why I’m so happy to be a carer again.”
While caring brings challenges, Rodgers says Cares WA try to focus on the positives.
“Being a carer builds a lot of self-reliance, it builds a lot of skills and abilities that are really useful for life in general. It builds a lot of self-recognition, self-understanding. For individuals it can be a really positive experience as well,” says Rodgers.
Jesse can’t help but light up when he talks about caring for his brother. His grin is ear to ear. But his eyes are always on James. He is watching what he is doing, how he is feeling, what his next move will be. He runs after him whilst answering my questions. He laughs as his brother throws the ball at a little girl.
“Sorry! He wants to be friends with everyone!” Jesse yells the little girl’s mum.
He gets a lot of confused, and often judgemental looks.
“The worst thing is the stares. Walking through the shops you see people’s eyes follow. It can be embarrassing,” Jesse admits.
“But most people are nice right?” I suggest.
“I’m not so sure about that,” laughs Jesse.
Family carers such as Jesse face a time-consuming job, with one-third of primary carers providing 40 hours or more of unpaid care per week. Support services from Carers WA allowed Jesse to properly care for James. Rodgers explains the support is needed to allow individuals to continue caring but, like any group facing barriers to inclusion, there is always more that can be done.
As Anthony Pyle rushes into to the café I notice his tired eyes.
“I need a coffee,” he says.
It may not seem like it, but it’s a quiet day at his work. It’s his mind that’s busy.
Pyle, from Armadale, cares for his mother who has significant mental health issues. While he’s done this his whole life, the situation is different now. The pair are separated by thousands of miles. His mum is in the United Kingdom, while he made the decision to distance himself in Perth. Despite this, Pyle is still her carer by providing emotional support and making decisions on her behalf.
“Even when I am 10,000 miles away you can still feel the role is present… I can’t physically be there so it’s very strained and stressful. I have to navigate being far away, knowing that my mum isn’t coping.”
While unpaid carers are formally recognised in Australia and the UK, Pyle has never received any support. In WA, carers can receive support from Carers WA without formal carer identification. However, Pyle believes there are still hurdles.
“I think it would have been nice for someone to recognise my mum was struggling, and she had two children in her care that needed to be looked after, as well as look after her. Things really need to fall apart quite significantly before anybody recognises that people are in those caring roles.”
For as long as he can remember, his mum’s mental health meant she didn’t leave the house. As the oldest child, Pyle cared for her and the family. Before he was even ten years old, he spent his days grocery shopping, cooking, cleaning, and picking up his younger sister from school.
“I don’t think I had a choice. Mum wouldn’t get out of bed. I was eight years old, my sister was five. If I don’t do something we don’t eat. It was very much a survival point. I didn’t know what to do beyond just sorting something out.”
Many carers sacrifice their health and well-being to tend to loved ones, usually for years on end. According to Carers Australia, carers for people with a mental illness often don’t have the same visibility, which can provide further obstacles to recognition and support. Pyle didn’t recognise he was a carer.
“When you are in it you don’t realise how strange it is. I always just thought kids had to do these things, we had to cook for the family and organise everything. There was never anything in school that said, “hey this might be you!” I think a lot of young carers do it in silence in the back of society.”
Carers WA Paul Rodgers says many, particularly young people, don’t realise they are carers because it’s simply part of their family reality. Recognising the role can put feelings into perspective.
“One of the most important things carers WA does is talk to the community about what carers are. They can be anyone. You can go into a caring role tomorrow. And that’s important, particularly for young carers. Young carers don’t have the framework to understand what they do is different to other people.”
As the population ages and carer numbers increase, Rodgers says greater recognition for carers and solutions to the problem need to be assessed to allow carers have needed support.
“As the population ages carers will have different expectations put on them… It’s often seen as an individual issue whereas realistically it’s a societal issue because as a society we are ageing…everybody thinks other people age, other people end up in aged care. But it’s not only other people. It can be you, it can be me, it can be our parents that end up in that situation. And what is it that we want for us, rather than what we accept for others.”