real life

At the age of 45, Trina was forced to live in a nursing home. She had no choice.

For close to two years Trina Stewart lived in what she now calls “a cell”. A small, dim room in a Brisbane aged care facility, a place where most of the residents were close to twice her age, where her few moments of pleasure came from what little time she could spend outside in the garden.

Trina, a former research scientist, was just 45 at the time, prematurely trapped as a result of her high-care needs.

The nursing home placement was the only one available to her when she left hospital after experiencing a stroke in 2013.

“It was a huge adjustment. There was no one really I could talk to. The staff were constantly busy, and the other residents really weren’t compos mentis [of sound mind] enough to speak with,” she told Mamamia. “That was the hardest thing, that and not feeling totally isolated from the community.”

Trina was among an estimated 6,200 Australians under the age of 65 with high-support needs living in aged care facilities – a number that’s remained largely unchanged for the past decade. These young men and women, some of whom are in their teens, typically find themselves in nursing homes due to a lack of suitable, accessible and affordable housing.

The issue is one of the issues to be examined by The Royal Commission into the Quality and Safety of Aged Care, hearings for which started in Adelaide last week. The investigation has been welcomed by organisations including Youngcare, a not-for-profit that advocates for and provides housing/equipment solutions for young Australians with high-care needs.

“Youngcare believes every young Australian with high-care needs deserves to live in age-appropriate housing and lead a life of independence, dignity and choice,” CEO Anthony Ryan said in a statement.

Mamamia’s daily news podcast The Quicky will get you up to speed on what you need to know today….

In Trina’s case, that independence, dignity and choice was lost in a single day.

The Queensland woman was in hospital being treated for stomach issues when her stroke happened. She noticed her left arm was difficult to control, but it wasn’t until she slumped out of a wheelchair that nurses observed the characteristic paralysis down one side of her body.

Stroke is among the leading causes of death in Australia, and though Trina is grateful she received life-saving care when hers occurred, it upended her entire life and entire future.

Within a matter of months, she went from being at the forefront of research into immunotherapy for breast cancer, to needing around-the-clock assistance with basic tasks. The left side of her body was immobilised, meaning she needs a motorised wheelchair to get around, as well as help using the toilet and getting in and out of bed.

But it’s the neuropathic – or nerve – pain that’s “the killer”, she said. The smallest movement or stretch of the muscles on the left side of her body leads to excruciating spasms – like “shards of glass” piercing her skin.

“I was such an independent person,” she said.

“I feel grief, loss, frustration. Grief at the loss of my previous life, anger at what I can’t do and frustration at how long it takes me to do what I can.”

ADVERTISEMENT
Image: Supplied.

When she was discharged from hospital after six months, the only way for Trina to have support she needs was to enter a nursing home.

Though she'd made gains in hospital rehabilitation therapy, already-stretched aged care staff were cautious of letting her manoeuvre on her own due to risk of a fall on their watch, and there was no ongoing access to allied healthcare professionals.

"There wasn't too much I could do. My sister actually called that phase my 'zombie phase'. Because at that time I was also on heavy painkiller drugs, so that made me a bit gaga," she said. "I went downhill both physically and mentally very quickly, which was very frustrating and very hard on my family."

It didn't help that intellectual and social stimulation were all but non-existent. Though she had support of her two sisters, friendships suffered. In the two decades before her stroke, Trina's career had taken her to the US and Melbourne, away from friends. As for those who'd remained... "Really no one wanted to come to an aged care facility to come and see me anyway," she said.

"I felt forgotten."

According to research led by the Summer Foundation and , isolation is a major problem for young aged-care residents: 44 per cent received a visit from a friend less than once a year or never, and 21 per cent either seldom or never went outside. That's one in five barely feeling fresh air or sunlight.

"What about quality of life?"

With the ongoing roll-out of the National Disability Insurance Scheme, there has been a concerted effort to connect young people in aged care facilities with funding to assist them make choices about their care - from where they live, to the therapy and equipment they need.

This 'facilitated access' program allows some Australians with particularly high-care needs to have financial support to enter Specialist Disability Accommodation (SDA). NDIA estimates suggest there are roughly 28,000 Australians eligible for this kind of funding, but the number of available placements remains woefully below demand. Sixty per cent below one study found.

ADVERTISEMENT

Researchers note that it will fall on the market and not-for-profit organisations to meet the shortfall. Relying on community and corporate donations, Youngcare for example was offered 138 grants over the 2017/18 financial year to assist young Australians with high care needs, at a combined value of $1,016,013.

Trina at one of the many parties held at her new home. Image: supplied.

Trina received one of these grants in 2015, allowing her to move into the organisation's Wooloowin share-house facility in Brisbane that August. The day she received the news she would be leaving aged care felt like "winning the lottery" - "I was in ecstasy, and a weight had been lifted off my family's shoulders as well," she said.

Her "cell" was replaced by a bright, airy studio apartment, with her own kitchenette and a workspace. She now feels equipped to consider studying or training so she can reenter the workforce in some way - possibly as a tertiary teacher.

"It feels like we're all incorporated back into the community," she said. "It's lovely to sit out on the front deck with a coffee and watch the world go by, and say hi to the dog walkers and that sort of thing."

Trina now has a dog of her own - an English Staffy/Bull Terrier mix named Booster, who's popular with the three other residents and visitors: "He's the light of my life," she said.

Also unlike her quiet existence in aged care, Wooloowin care staff ensure there's music, parties, outings to the beach, to a show. Trina chuckled as she explained she can now tell crude jokes and get a laugh from her housemates. A bit of normalcy in her far-from-normal new life.

But she knows there are thousands like her who remain trapped, forgotten and alone, in nursing homes around the country.

"Aged care needs to be more individualised. That would require more staff who have different skill sets, so that there could be more meaningful interactions, more therapy," she said.

"There a lot of places just assume that if people are fed and clothed then that's all people need. But it isn't. What about quality of life?"

FROM OUR NETWORK
00:00 / ???