Undervalued, invisible, unheralded: Why we need to care about carers

Husbands with cancer, mums with dementia, neurodivergent kids. An army of carers — so often overlooked — are the hidden glue that keeps our communities soldered with their quiet love.

Carers are the invisible glue which holds communities together.

A decade ago when I met the bloke in my life he told me something I’ve never forgotten.

His wife had died four years earlier, from cancer, and his single regret from that time was that he hadn’t known she would become unconscious a few days before she died.

It just happened.

Before he was ready.

Before he had the chance to tell her what a wonderful woman and mother she had been.

Carers speak a language beyond hospitals and last-ditch treatments. Picture: Supplied.

Recently he was discussing this end-of-life experience with my aunt, who lost my uncle to cancer in 2023.

Together they shared their stories of those last days: of the awful chest rattle that develops in the dying; of the sudden transition to widow/er after years of caring.

CARERS’ SHARED LANGUAGE

I sat quietly, an interloper in this precious exchange.

Carers see each other in a way the rest of us don’t.

They speak a shared language beyond hospitals and treatment plans and PET scans.

They’ve had final conversations without ever realising they were final and they know the fatigue that comes with a role that has no clear end date.

The greatest fear for those caring for sick or disabled children, is their own death.

Who will look after their child once they’re gone?

If carers are society’s glue, it’s invisible – the opaque, translucent stuff that lives in the gaps: unheralded and unseen.

Documentaries are not made about carers; memoirs are not written about them.

In 2015, Julianne Moore and Eddie Redmayne won best actress and best actor at the Academy Awards for their respective roles in Still Alice and The Theory of Everything.

Moore played a woman with early-onset Alzheimer’s and Redmayne nailed the late Stephen Hawking who lived with motor neurone disease.

Moore and Redmayne in The Theory of Everything. Picture: Supplied

Can anyone remember who played their partners, their carers through their decline? It was Alec Baldwin and Felicity Jones.

Likewise, asked to name the key actors in Love Actually most would nominate Emma Thompson, Liam Neeson or Hugh Grant.

No one remembers Laura Linney who played Sarah, a woman who so tenderly — and with huge impact on her own life — cared for her mentally ill brother.

Stephen Hawking during a photo call for a gala screening of the documentary 'Hawking' — a film about his own life. Picture: AFP

And yet where would we be without our carers? The people who, day in, day out, deal with incontinence, or stop a loved one, now clouded with dementia, walking into the traffic?

I am currently in awe of two friends consumed with caring.

One, overseas, has given up work to look after his wife who has a degenerative disease.

He stays fit so he can lift her and wakes in the night to turn her.

He never seeks sympathy but his big life has become very small.

Another friend is caring for a husband with returned cancer and a mother with dementia. Watching her — soldiering, steeling — is extraordinary to behold because it’s not our friends’ homes or holidays that matter, but their mettle.

Sometimes, on the bad days, my friend laughs uncontrollably. If she sobbed she might never stop.

Podcast host Hugh van Cuylenburg’s recent open letter to parents of neurodivergent children went viral because it revealed the painful underbelly of caring.

Hugh van Cuylenburg opened up about the role of carers in poignant – and brutally honest – open letter.

Speaking about his child’s diagnosis, and research revealing parents of autistic children experience stress similar to combat soldiers, he said: “This is the hardest thing I’ve ever known … but I’m still here, still going because we don’t really have a choice do we?”

We need to elevate carers’ stories so I asked a friend, a health professional, what she’s witnessed.

She told me about Bob*, “a rough diamond”, who lived in social housing and was given a terminal diagnosis.

When she visited him, a neighbour popped in to ask Bob if he wanted anything from the shop.

HIDDEN GLUE

As Bob became frail and, consequently, scared and lonely, his neighbour started going to his unit every morning.

He’d help him up then push him over to his own unit where he spent the day on the couch.

As my friend explains: “We put in nursing supports at his friend’s place and learned that this chap had been making meals and feeding his mate for years. The hidden care and friendship between them meant my patient could stay out of a nursing home.”

Bob died with his mate holding his hand.

“This was the true meaning of friendship and I see it more in the poor suburbs than the posh,” my friend says.

She has learned not to judge. When her own grandmother, Peg, was diagnosed with dementia, a neighbour, Carl, who lived opposite would visit every morning to check on her and then drop an email to my friend and her parents, who lived out of town, documenting what she’d eaten and her mood.

One day Carl cleaned the moss off her path; another day he wrote amusingly of how he’d had to explain to Peg that the meal my friend had left her grandmother was risotto. The elderly woman thought it looked like maggots!

Yet Carl was dismissed by neighbours as a hoarder.

My friend saw the truth: Carl was a carer, the hidden glue that keeps our communities soldered with their quiet love.

*Not his real name.

ANGE’S A-LIST

NOVEL TREAT: It’s such a privilege to hear writers speak about their work. The brilliant Helen Garner and Gina Chick recently wowed audiences in Adelaide and both will be speaking at the Sydney Writer’s Festival in May. Brisbane’s festival is now in October and at the Powerhouse. Diary for a fantastic day out.

FOOD FAVE: Leftover rice omelettes, onion ring chips and crispy potato salad are just some of the easy recipes on @kalejunkie, the Instagram page of Nicole Keshishian, who has garnered 2.5m followers of her fun, tasty recipes.