Curated Care

Photography by Debi Brett Photography

Tube-feeding is not a one-size-fits-all thing, so why settle for anything less than a custom-made support team? We hear two stories of self-advocacy, both with a very special nurse in a starring role.

Twenty years ago, Peter Macaione had radiation treatment for head and neck cancer. “In those days it was a terrible, scatter- gun approach to radiation,” says the 62-year-old musician. “Just target the whole area and hopefully get it, you know?”

Since then, the lead guitarist has struggled to speak and swallow.

Having developed a chronic lung condition from food entering his airways, in 2023, Peter went for a speech therapy appointment at The Wesley Hospital in Brisbane – and came home with a gastrostomy (G) tube.

“I wasn’t eating and I was losing weight, big time,” says Peter. “All of a sudden I was in the emergency department and the gastroenterologist came in and said, ‘Look, we have no choice, we’re going to have to put a feeding tube in’.”

That feeding tube was a percutaneous endoscopic gastrostomy (PEG) with a long tube permanently attached. “And it was kind of getting in my way,” says Peter, who recently made the switch to a low-profile, button-balloon-style G-tube.

“It’s great – a lot more discreet,” he says. “I’ve got a grandchild now, so every time I pick him up he feels for it, saying ‘Poppy belly button! Poppy belly button!’”

While getting the majority of his nutrition through his tube, Peter still carefully swallows water and his daily coffee. “It takes about two hours to drink it, but it’s worth it,” he says.

“I’ll also have a beer. I try to maintain a social presence – I’m not going to shy away from being with mates, so I will sip on a beer or two.”

Soon after completing his cancer treatment, alongside some of those mates, Peter walked the Kokoda Track in Papua New Guinea. Now he and his wife, Jo, are preparing to tackle the Camino in Spain.

“I’m a glass half-full person – I’m not going to compromise participation,” says Peter. And registered nurse, Sarah Jane van Oosterhout, has ensured he hasn’t had to.

Sarah is part of the Abbott Homecare Connect program which, in collaboration with healthcare providers, sees a team of registered nurses providing nationwide support to people transitioning from hospital to home care.

“She’s just been enormously helpful the whole way along,” says Peter, who was put in touch with Sarah via the rehabilitation team at The Wesley.

Soon after he was discharged, Sarah began home visits to help with tube maintenance and, more recently, travel plans.

“She’s arranging for my Ensure* to be sent to our hotel rooms in Spain,” says Peter. “Sarah’s just been fantastic. I cannot praise her enough.”

In a show of his appreciation, last year Peter organised a fundraiser performance with a group of fellow musicians to raise money for new rehabilitation equipment at The Wesley.

“I’m already planning the next one and it’s going to be bigger and better,” says Peter. “Sarah and the team moved me to the point I felt I had to give something back. It brings me to tears, to be honest.”

Another 62-year old, Brisbane- based Peter – Peter Russo, who goes by Pete – is also supported by Sarah and Abbott Homecare Connect.

A former military serviceman and air-traffic controller, Pete has motor neurone disease (MND). In 2024, he had a radiologically inserted gastrostomy (RIG) tube placed as a precautionary measure.

“We’re geared up and ready to go,” says Pete. “We flush it twice a day and we’ve had some practice feeds, so I know what to expect.”

Pete can still eat safely and, as his partner Tess Nobile points out, amid Pete’s medical appointments and care team coming and going, sharing meals has become all the more important.

“It’s a connection for both of us – and it’s a social thing when we go out,” says Tess. “There’s been a lot of giving up stuff with MND. Pete can’t use his hands or arms and he’s barely walking. So to then concede that he’s got to take his massive enjoyment of food and put it through a tube, that makes us both sad.”

“But when the time comes when I need to rely on the feeding tube, my attitude might change,” says Pete. “I’m pleased the feeding tube is there because, to say it blatantly, I won’t starve to death. It’s the most important bit of equipment for me to sustain life.”

Uncertainty comes part and parcel with a neurodegenerative condition – but Pete and Tess can be sure that, throughout their tube- feeding journey, Sarah will be on-hand to help.

“She’s very responsive,” says Tess, who will often send Sarah photos of Pete’s tube when seeking guidance. “Sarah’s great at providing that support and reassuring us that we’re not going crazy.”

Pete also receives care at home from community nurses and support workers. “But they didn’t have any RIG experience, so Sarah offered in-home service,” he says. “She also trained our support workers and the community nurses. Nothing was too hard.”

In sharing advice with those who are building a team of specialists and carers, Pete says to be very selective.

“Many people do what the first doctor they see tells them to do, but we’ve learned to ask, what are our real options? Who can service us best? We’ve got Sarah as a single point of contact – our team are all single points of contact – so we don’t get inconsistent information.”

“It’s personalised support from someone that we’ve formed a relationship and rapport with,” adds Tess. “What I love about Sarah is that she has our whole care team’s details, so we don’t have to repeat ourselves. Everyone’s sharing information, everyone’s updating everyone.”

Tess also urges other caregivers to play “a more vocal role” when supporting their loved ones.

“I know Pete’s living through this, physically, but it’s a ‘we’ journey for us,” she says. “Find your voice and, without any shame, speak up. And don’t be afraid to handpick your team based on what works for you and your family. That’s really important.”

This article was made in partnership with Abbott Homecare Connect. To learn about their nationwide team of registered nurses offering comprehensive home support for patients, caregivers and healthcare professionals, visit their website.