For years Danie didn’t realise she was a carer, she just did what she could to support her daughter.
Diagnosed with Autism spectrum disorder and ADHD at three years old, Danie’s daughter also lives with oppositional defiance disorder and pathological demand avoidance.
This means additional challenges with everyday activities from getting out of bed to getting dressed, eating meals, and even going to sleep at the end of the day, as she struggles with instructions.
It often takes Danie and her daughter two hours to prepare to leave the house.
“Even if it’s something she wants to do, just the way her brain works stops her from participating in things she enjoys and when she realises she’s missed out she’s quite upset,” Danie says.
“So I have to be mindful of that and emotionally supportive of her in those moments. It takes a skill set I didn’t know I had and that I’ve developed over the years.
“I never realised that I actually was a carer, it’s just living in this pressure cooker where it’s just the two of us. That’s where I thought, ‘actually what I’m doing is above and beyond what other parents are dealing with’.”
Now nine years old, Danie’s daughter attends school, which gives Danie time to put her house back into order following the morning meltdown and do tasks like cleaning and shopping.
When her daughter comes home from school they deal with another meltdown and try to have dinner before spending time preparing for bed.
Danie often doesn’t go to sleep until midnight - as she has to tidy the house once again from the evening’s activities - and her daughter is yet to sleep through the night, meaning Danie often operates on much less than the recommended amount of sleep.
“If I wrote down what I did as a job advert no one would apply for this job,” Danie says.
“It really is a labour of love.”
During National Carers Week, a Carers Australia initiative run from 10-16 October, the country’s 2.65 million carers are celebrated by the broader community for the amount of unpaid care they provide.
Last year the work of unpaid carers added up to 2.2 billion hours of care, or more than 42 million hours every week.
The estimated cost of that care if it was provided by paid carers is $78 billion or almost $1.5 billion each week.
For Danie, National Carers Week is an opportunity for carers to raise awareness of how much work they do to look after their loved ones and to advocate for more accessible and affordable respite.
“It would be really good if the Federal Government realised how much unpaid carers saved them a year and would happily give organisations like Carers SA more funding so that we can get what we need,” she says.
“If I do need a night’s sleep it’s nearly $900 a night, so it’s really expensive and I can’t afford that.
“I’m at burnout point now and it’s sad that we have to get to this point.
“I want to be able to do this for as long as my daughter needs me to while I’m trying to support her to develop the skills she needs to be more autonomous.”
Chief Executive Officer of Carers Australia, Liz Callaghan, says the theme of this year’s National Carers Week, ‘Millions of reasons to care’, is about raising the profile of carers not just for Governments but also in the community.
“This year’s theme is a challenge to all Australians to increase their understanding about caring and how they can make a difference to the lives of carers,” says Ms Callaghan.
“We want the wellbeing of carers to be a responsibility shared by all Australians.
“Carers need the ongoing support of all Australians – from Government to businesses, classrooms to families, and medical professionals to communities.”
The results of the first-ever National Carer Wellbeing Survey have been released this week, show that carers are lonelier, have worse physical and mental health, and poorer household financial situations than the average Australian.
Two thirds of carers responding to the survey regularly fear for the future of the people they care for, while almost 45 percent of carers believe their caring responsibilities often impact their relationships with family and friends.
“It is distressing to see the impact caring can have on a person. The caring role can be a rewarding one, but is often so demanding,” says Ms Callaghan.
“While the majority of carers identify caring as a positive experience, this research shows that caring can impact all aspects of a person’s life; from the way they engage with the community to how they access support services.”
Danie’s message to all carers is to allow themselves to feel a full range of emotions to ensure their emotions aren’t bottled up inside, which can impact their mental health and wellbeing.
“I often feel guilty for feeling frustrated or overwhelmed or if I’m not coping or if I need a break. I feel guilty because I think [carers] are made to feel like we have to do it all without complaining or without feeling any negative way about it, but we are all human,” says Danie.
“We are allowed to have those feelings and once we allow ourselves to have that I think it’s really empowering and liberating.”
Carers Australia is hosting online events throughout the week to celebrate and support carers, and has also produced resources for the community to use to support carers.
For more information visit the National Carers Week website.