Caring for a child with Down’s syndrome: What is life like for Australia’s 2.7 million caregivers



Tarryn Coleman wasn’t ready to be as much of a caregiver as a mother when her daughter Isla was born with Down syndrome 16 years ago.

“At first it was like every new mom’s experience with a baby, but as I get older I have [moved] more in the role of doing things for herself that she was unable to do, as a typically developing child would. “

A caregiver is defined as someone who provides unpaid care and support to family members and friends who are living with a disability, mental health issue, long-term health issue, dependence on alcohol or other drugs, or who is frail elderly.

According to Carer’s WA, there are currently 230,000 people caring for someone in the state of over 2.65 million nationwide.

Currently, Carers Australia is the main national body representing Australia’s unpaid caregivers, advocating on their behalf to influence policies and services at the national level.

The organization works collaboratively with caregivers, caregiver associations, government and leading organizations to develop policies, advocacy, programs and events to improve the lives of Australia’s 2.7 million caregivers.

A new resource to help caregivers

The Australian government recently introduced a Caregiver Gateway website and the call center as an entry point for caregivers to access practical information and advice, online support and services in their region.

The new national network of Carer Gateway service providers offers a range of support services to unpaid caregivers.

Ms Coleman says taking care of Isla has gotten easier as she gets older, but she still needs help.(ABC News: Provided)

Ms Coleman said she really took advantage of asking for help to better understand her role as a caregiver.

Her respite is being able to work full time for the local government while her daughter goes to school, where Coleman is a parent representative.

Being able to contribute to society helps her find an outlet outside of family life, she said.

“My daughter is in a school vacation program with a disability service provider and there has been other informal supports through her teaching assistants at school,†she said.

Although Ms Coleman had no choice but to take care of her daughter, she says it has become easier to age.

But she concedes that she is worried about her daughter’s future.

“I’m worried (…) for her and who will take care of her once we’re gone and I’m worried that people will take advantage of her and her money,” he said. she declared.

“Confidence is a huge thing. Being a caregiver as well as a parent is complex, it’s an added layer of family dynamics and can impact many areas.”

Tarryn and Isla kissing on the couch
Tarryn balances her role as a caregiver with other activities to give her a bit of a break. (Provided)

Ms. Coleman receives funding through NDIS, but it only happened a year ago.

“It was difficult before that, because we had to totally self-finance all of my daughter’s supports until the age of 15,†she says.

ABC disability reporter shares his story

Having been my sister’s caregiver, I can tell you from personal experience that it was exhausting and exhausting, but ultimately rewarding.

The hours are long and you don’t have sick leave.

A man with glasses and a gray sweater sits at a desk and works on a laptop next to a window.
ABC reporter Nick McAllister says he doesn’t regret taking care of his sister, but admits it was a difficult task. (ABC News: Hugh Sando)

I was constantly stressed, tired, overwhelmed, angry and resentful, but these emotions were an accumulation of what I was feeling.

I had a bit of a break where two days a week I was working for a local supermarket.

It was the only time I had for myself, and a time I could reflect and, to some extent, relax.

At the start of my process of helping my sister, I participated in a conversation where all avenues were explored.

Personally, I don’t think bringing a stranger into the house is an option we’ve ever considered.

I accepted, albeit naively. I say this because no one can prepare you for the realities of being a caregiver.

For this to work, there had to be a structure and a routine in place.

It was agreed that I would start to keep busy from 7:30 am until 9:00 pm each day.

I don’t regret my decision, but I regret that I was not prepared for the enormous undertaking of being someone’s caregiver.

Ms. Coleman recognizes that as a caregiver, her eyes have opened to a different view of the world.

She says being the caregiver for her daughter has given her life purpose and meaning.



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