This is the case for Canberra-based Charles Sturt University student Dalanglin (Dalang) Dkhar, who has turned her life as a full-time carer for her son into a PhD study in the form of a documentary.
In light of National Carers Week which runs from Sunday 15 to Saturday 21 October 2023, Dalang said she hoped her study would continue raising awareness beyond just one week a year.
The documentary will follow the stories of four carers, as part of her PhD in the Charles Sturt University School of Social Work and Arts through her research study titled ‘Lifelong carers – the lived experience as witnessed through a documentary’.
“Being a carer myself, I thought I had a really good understanding of what that means, but there’s a lot more revealed when you talk to other carers and dig a bit deeper, which is exactly what this study is,” Dalang said.
“We live our lives in constant hyper-vigilance, waiting for the next thing to fall apart; every day is new and unexpected.”
Dalang has now wrapped up filming for the documentary and is moving on to transcribing and data analysis before the ‘big reveal’, but already she’s noted the data provided has been ‘rich and layered’.
“One thing which really delighted me is that I found out we all had a bit of a ‘carer’s language’ going on, you know, we get each other,” she said.
“There’s this shared comradery of caring. It has been an incredible process, and I hope people beyond the circle of carers will have these kind of ‘ah-ha’ moments when watching the documentary and recognise the important life-giving work of the unpaid carer.”
Currently in Australia, there are approximately 2.65 million carers, which equates to one in 10 people.
Despite these figures, Dalang said carers can seem invisible to everyday society.
“We need to fix this, and while occasions like National Carers Week are great, we need more recognition year-round,” she said.
“Recognition of the carer and what we do can help significantly in numerous ways when it is practiced in community settings.”
The impact of caring on the carer’s mental and physical health can be significant.
“As a carer, our own health tends to get left by the wayside sometimes, and you end up as the backdrop to the person you’re caring for,” she said.
“Recognition could prompt a GP to ask how you are at an appointment for the person you’re caring for, which could make you stop and think - I do need support or care myself.
“It can also help empower a carer when they’re advocating for the person they care for, whether it’s the NDIS, schools, medical settings, therapy support, or even for themselves at their place of employment.”
This is the aim of the documentary, which will be released early next year, and Dalang said she hoped it would encourage the wider community to look out for one another.
“When I reflected on the four interviews and participants who signed up, I truly realised just how amazing they were,” she said.
“No one decides to do this, it’s by necessity, so for them to be so generous and share their story just makes me so in awe of them.
“They have brought so much courage to the table. It’s a big deal to put your vulnerabilities out there for everyone to hear.”
The study is supported by an industry partner, Carers ACT, which is funding the production in alignment with its hopes for better awareness and advocacy.
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