Dalanglin Dkhar and Shirley McKernan share their struggles as carers

"There's no manual out there that tells you, okay, this is what you need to do now that you're a carer," she said.

"You need to understand how the person you care for is going to survive and manage in a world that's not really built for them.

"The one thing in your mind is this is now my responsibility to make sure this person gets no less of a life, but the best life they possibly can, and you understand that that responsibility is entirely up to you."

Now the Charles Sturt University student is turning her life as a full-time carer into a PhD project, a documentary showing the challenges carers go through, in the hope of demystifying what life is like for her and millions of other Australians in her position.

Parked outside her son's school, engine off, laptop open and coffee at the ready, Mrs Dkhar settles in for a day's work.

Her moment of peace and quiet could last anywhere between one to three hours - if she's lucky.

"My son has disabilities and suffered from trauma at a previous school resulting in a PTSD diagnosis," she said.

"He couldn't attend school from May last year as a result and after we managed to change schools this year, he's been taking baby steps to be able to be there for a few hours now, but that reintegration started at just 20 minutes a day."

Mrs Dkhar is not alone in this experience. According to Census data from 2021, 13.4 per cent of Albury residents over the age of 15 provided unpaid care to an individual.

When Shirley McKernan's daughter Matilda Maxfield was born, she was immediately flown to the Royal Children's Hospital in Melbourne, where she stayed for six months.

As a result of her "life threatening disability", Matilda would have to live without being able to do "anything for herself".

The single mother of two from Wodonga said when Matilda was finally out of the hospital she was given no information about the services they were able to access and she was forced to adapt to the situation herself, "which was very confronting".

"There was numerous times when I'd cry at night or in the shower," she said.

"Matilda can't do anything for herself so we just had to be there, 24/7.

"On a good night I'm up three times to suction her airways, change her nappy - her bedroom is basically like a hospital in the home - she's got an oximeter pro monitor so that gets changed throughout the night as well.

"But on a bad night I could be up suctioning 10-15 times an hour and get no sleep at all."

The average day for Ms Maxfield starts at 2am to change Matilda's nappies.

She's then up at 6am to dissolve Matilda's medications as they have to be administered through a tube because she cannot swallow tablets.

She takes medications at 7am, 7.30am and 8am before going to school, where Ms McKernan works in case of emergencies.

At school two Royal Children's Hospital-trained carers take over the medications and care that's administered throughout the day.

Matilda is only allowed to be touched by the carers and Ms McKernan as she is "extremely" susceptible to germs and viruses.

She then takes a round of medication when she is picked up from school, another round at 4.30pm, dinner at 5pm, more medication at 6pm before she has a bath, then more medication at 8pm before she gets ready for bed.

"It's non-stop," Ms McKernan said. "Even now with Tilly you have to go through baby stages.

"If she starts crying, you have to ask is it her nappy? We know she's just had a feed, or could it be - because she was diagnosed with osteoporosis at 13 she's got a fully dislocated left hip and numerous fractures - so it could be just her positioning in her chair.

"We've got to go through a whole list of things until we can find out what it is.

"When we come home after work we're not just behind a closed door. We have still got to be on the run all the time.

"On some nights I might leave the dishes so they may pile up in the sink, but that's irrelevant because I need my sleep and she needs her medication."

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Ms McKernan agrees with Mrs Dkhar that there needs to be more awareness about what carers go through.

"The biggest challenge is keeping up the strength to keep going," she said. "To be able to give these people we love the quality of life that they totally deserve.

"We take a lot of things for granted in life.

"I mean, I look at Tilly and think to myself I can breathe, I can eat, I can bath myself, go to the toilet, brush my hair and get myself dressed - she can't do any of that.

"I can walk I can talk, but so many people out there can't do those basic things that we take for granted each day."

She believes there should be more funding for people with disabilities and hospitals should give parents all the information about the services they can access from the beginning, but most of all, she wishes people showed more respect.

"I'm a real advocate and a fighter," she said.

"But there's so many people in caring roles that don't have that fight at the end of the day; they're struggling just to get through each day, they are just basically exhausted."

Currently in Australia, there are approximately 2.65 million carers - that's one in 10 people.

Seventy per cent of carers in NSW live in regional, remote or non-metropolitan areas, according to a recent survey by the New South Wales Department of Communities and Justice.

Not only are there more carers, but more pressures in the regions. The survey also revealed financial stress was a major concern, exacerbated in regional areas by ongoing drought and flooding.

For support services accessible in person, regional carers are at a disadvantage again as reliable, affordable and accessible transport options, such as trains or buses, are limited.

Mrs Dkhar said despite the numbers, carers like her remain largely hidden from everyday society.

"In so many ways we are invisible, we take on this notion, this responsibility of caring because there is no other option and we don't want our loved ones to live any less of a life," she said.

"We live in your communities, we have children in your schools, or spouses, trying to get employment at your workplaces - we infiltrate every aspect of the community.

"But still the community, for the most part, doesn't understand how we live."

This lack of understanding can often lead to isolation.

Mrs Dkhar hopes her documentary project will reduce if not remove the invisibility while increasing awareness, support and compassion for carers across the country.

"If the community recognised and got to know how we live, that's when change can really happen," she said.

"There'd be acknowledgement and that goes a long way.

"People need to realise there is only ever a few degrees of separation between them and the world of caring; you might know a carer or be one in the future, or even need one for yourself at some point."

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