Two stories. One message: Palliative care changes everything

Two Goulburn Valley locals whose experiences could not be more different, say palliative care was not about counting down the days but instead, making those days count.

With National Palliative Care Week running from Sunday, May 10 to Friday, May 16, this year’s theme, ‘Getting to the heart of it: Big Questions. Real Answers’, urges people to reconsider what palliative care really means and ask the big questions earlier.

Not when time is running out, but when it can still be shaped.

For Peter, it began with a devastating timeline. Six months.

His wife was diagnosed with an incurable cancer and a referral to GV Hospice had them preparing for the end.

However, it was the start to five more years together.

“We came to realise that the concentration was on how to get the most out of the limited life you have,” Peter said.

“We had a fabulous five years, and to a large extent because of the support we had from hospice.”

Rosina’s experience was almost the opposite.

Twelve days. Her husband living with serve kidney failure chose to stop dialysis.

The hospice nurse first arrived on a Thursday; he died that Saturday.

Yet in those few days, she says hospice transformed their final moments.

“It’s amazing how close you can become in just a couple of days,” Rosina said.

Their stories sit at opposing ends of the palliative care spectrum — one long, the other short, one filled with years of support, the other with just days.

Yet both reveal the same truth: palliative care is not what most people think.

The biggest misunderstanding is that palliative care is only for the final days. In reality, it is support for anyone with a life-limiting illness. It can last months or years and usually alongside treatment.

Peter learnt that slowly.

Hospice nurses became a safety net, training him to administer medication, reassuring him when he doubted himself and insisting he call at any hour if things were tough.

“The nurses are the emergency button,” he said.

They helped friends visit when they weren’t comfortable to come alone and gave him the confidence to care for his wife at home.

“They went above and beyond,” he said.

“I wouldn’t have done it without hospice.”

Rosina learned it quickly in those final days.

The hospice organised equipment within hours — a hospital bed and a concentrator to help her husband breathe — and supported her through every moment.

One of her final memories captured in a photo: her husband in the family room, watching Carlton play, eating a slice of pizza.

“That was his passion,” she said.

“You wouldn’t be able to do things like that in hospital.”

Both Peter and Rosina’s loved ones died at home, exactly where they wanted to be.

Peter’s wife received years of support, Rosina’s husband just days. But both families were able to stay at home. Both were able to choose comfort.

“I think without hospice we wouldn’t have been able to keep them at home,” they both said.

After their passing, that support didn’t stop — phone calls continued, check-ins continued, care continued.

That is something that GV hospice prides itself on — palliative care does not end when a life ends, it extends to the family left behind.

Now, both give back.

Peter has been volunteering for nearly two years, Rosina has just recently finished her training and will soon take on her first client.

“It’s the simple act of giving back,” they said.

Their stories also reflect a national challenge: only 38 per cent of people with a life-limiting illness receive specialist palliative care, often just 15 days before death, even though nearly 90 per cent of Australians say they want to die at home.

That sense of reflection will be shared at GV Hospice’s annual community memorial on Wednesday, May 13 at Victoria Park Lake behind SAM from 5.30pm.

Free and open to all members of the community, the candlelight event offers a space to grieve, connect and remember.

Because for Peter and Rosina, the core message is clear: palliative care isn’t about dying but about living fully, meaningfully and with support at every stage.