An unbreakable bond

When you think about teenage daughters and their mothers, it often conjures images of hollywood-attitude-induced eye rolls, hair flicks and slammed doors – but Rebecca and her 16 year old daughter, Zaiba, have a relationship that runs far deeper than hormonal mood swings.

They are each other’s family, extended family, partners, friends, and support crew – and have an unbreakable mother-daughter bond forged from their shared experience as unpaid carers.

Rebecca is a mother of four, and a full time carer for her seven year old daughter, Ganeve, who has autism and a developmental coordination disorder; as well as her two year old son, Diego, who is currently undergoing diagnostic testing for autism.

With Rebecca’s eldest daughter no longer living at home, Zaiba – a year 10 student who loves woodwork and fighting for women’s rights – is Rebecca’s right hand woman, and takes on the role with bashful pride.

“Mum has Type 1 Diabetes, so while she’s a full time carer for Ganeve and Diego, she also needs someone to look out for her,” Zaiba says.

“I help Mum, as well as my siblings, as best I can, I’m really the second support person in the family.”

It’s an essential role that her mother, Rececca, doesn’t take for granted.

“I’m very lucky with Zaiba,” Rebecca says.

“As a sole parent, I don’t have a huge support system, if any, so Zaiba takes a lot of it on herself.

“She’s such an amazing support, I wouldn’t call her your typical teenager, she’s so respectful and caring.”

Rebecca says that every day in their household is “full on” from sunrise to sunset, which makes it hard for her to find work or have any kind of life outside of the home.

“I’m looking to get back into work, but caring really does take a toll on that,” she says.

Every day you’re waking up to it, there’s no stopping or rest, there’s no down time, it’s not just your normal parenting – supporting Ganeve emotionally, physically and mentally is constant.

“It’s about making sure that she’s looking after herself, wiping herself properly when she goes to the bathroom, moving with her from one step to the next – it’s a constant battle, and I know we all struggle with it a lot, because it can be frustrating.

“We love her to bits, but a child who has a developmental issue can be stressful – everything takes three or four times as long to get through, it’s tough.”

In addition to ensuring Ganeve is safe and happy at home, their days also involve a lot of appointments, which can be extremely difficult, both logistically and financially.

“We’re constantly travelling to and from therapeutic appointments and psychology appointments, there’s no end to it,” Rebecca says.

“In one week we’d have at least three appointments, and that’s just for Ganeve.

“Then there’s Diego who’s going through the diagnosis process, so we’re attending new sessions constantly – and it all costs money.”

While the NDIS provides financial support for people with disabilities, qualifying for the funding can be challenging and costly in itself.

“If you don’t have money the process can be very slow. It took me four years to get Ganeve diagnosed, even though I could see it and knew it, because I didn’t have the funds,” she says.

“I was able to get NDIS funding eventually, but I had to go to my local MP to fight for that. 

“Everything’s a battle, you’re not only a carer, you’re an advocate for your children.

“It’s easy to feel like you’re getting lost in the system.”

This extra administrative workload – the appointments, the funding loopholes, and the endless paperwork – can be difficult to manage, often pushing unpaid carers, like Rebecca, to the edge.

“You get burnt out, burn out is huge,” she says.

“Having Type 1 Diabetes, I’m constantly having to monitor my sugar levels, it’s like walking on a tightrope, if sugars fall or rise then everything has to stop, and I can’t afford to stop.

“Knowing that my life is delicate, and could be very short, makes me even more determined to make sure my kids are supported.”

Rebecca says that the support she’s received from organisations such as Carers SA has been essential for her physical and mental health.

“Carers SA has really been our support system through all of it,” she says.

“I access regular psychology sessions and education support through them. It’s been a huge help to have those services in place and to know that the carers community is there for us.”

Through Carers SA, Rebecca was also recently introduced to a program called Your Caring Way, which has given her the time and the confidence to register for a part-time paid carer position.

“They understand your limitations as a carer – in terms of time and flexibility – so to think I could get a job for just two days a week is amazing. It would allow me to get back into the workforce, without compromising my caring role at home.”

And Rebecca isn’t the only one in the family looking at pursuing a career in support care.

“I want to work in disability support when I leave school,” Zaiba said.

“I’m drawn to disability support, because I’ve grown up being a part of that world. 

“My sister has a disability, and there are a number of people in our family who have some sort of disability, so I feel like I can use my knowledge to do something I’ll enjoy and have an emotional connection to.”

A natural compassion for others is something that comes with the territory of being a carer, Rebecca says – a skill that often translates well into paid support roles.

“It’s a bit of a pattern with carers, being a supportive person. I grew up caring for my dad, and now the kids. You tend to feel like it’s your second nature,” she said.

“Sometimes it can be a burden, but sometimes it’s a reward because you have this enormous ability to put yourself in others shoes,” she said.

“I find that those who have gone through a lot in their lives tend to be the more empathetic and compassionate souls.”

If you’re an unpaid carer and looking for support contact us today to find out more about Carers Gateway Services at Carers SA.