Lost in the maze: A carer’s struggle with Australia’s aged care system

When Nicholas Smith moved back to his childhood home in Nowra to care for his mother after her dementia diagnosis, the 30-year-old engineer thought his organisational skills would help him navigate Australia’s aged care system.

What he found was a patchwork of services, My Aged Care portals, specialists, and support programmes, that didn’t connect, forcing him to become an expert in a system that often left him repeating his mother’s needs.

For Nick and the 1.7 million Australians caring for someone with dementia, his story highlights the resilience required to overcome systemic chaos. Through love, sacrifice, and an evolving sense of purpose, Nick’s journey reveals the profound challenges of caregiving and the urgent need for reform in a fragmented system.

A son’s devotion tested

Nick was living in Brisbane, building a career as a structural engineer, when his mother, then 68, was diagnosed with dementia in June 2022. Initially, he returned temporarily to the family home in Nowra on the New South Wales South Coast, to support her alongside his sister. “I was really close with my mum,” he recalls.

“She raised me as a single parent, working hard to give me opportunities.” His mother’s efforts to provide him with a good education and a strong start in life left Nick with a deep sense of gratitude. “When the opportunity arose, I was happy to repay even a portion of what she gave me,” he says.

The decision to become her primary carer wasn’t immediate. “I wasn’t planning to be a carer,” Nick explains. “It was a hundred little decisions that grew into that role.” By March 2023, as his mother’s condition deteriorated rapidly, he made the permanent move back home. Expecting a newborn, his sister needed to step back, leaving Nick to take on the primary caregiving role.

This shift meant leaving his full-time job, initially working part-time remotely before stepping away entirely by late 2023. “It’s hard to focus on work when something so pressing matters more,” he says, reflecting on the emotional and practical toll of prioritising his mother’s care over his career.

The early days were marked by a steep learning curve. Nick’s mother could still engage in familiar social interactions, masking her condition to outsiders. “She’d talk on the phone like she always had,” he says. But his sister, FaceTiming from the UK, noticed a vacant expression and subtle signs, like their mother getting lost in familiar places, that prompted a visit to the GP.

The formal diagnosis of Alzheimer’s, confirmed through scans and specialist consultations, was a heavy blow. “It was like The Notebook,” Nick recalls, referencing the film’s emotional depiction of dementia. “You think, is this the end?” Yet, he soon learned there was a life to be lived post-diagnosis, requiring constant adaptation to his mother’s changing needs.

Nick’s transition to caregiving was not just about managing his mother’s condition but also about redefining his relationship with her. He had to shift from being a son who organised logistics to identifying as a carer, a role that demanded emotional resilience and practical skills.

“I had to change my mindset,” he says, noting how this shift allowed him to seek support for himself, including counselling through Carer Gateway, which helped him cope with the stress of caregiving.

A system riddled with gaps

Navigating Australia’s aged care and health system became Nick’s greatest challenge. Expecting to rely heavily on doctors, he was surprised to find that personal care workers, physiotherapists, and occupational therapists were the backbone of his mother’s care.

Coordinating these services through My Aged Care, Services Australia, and specialists was a daunting task. “The most frustrating part is retelling your story,” Nick says. “I know what services Mum’s on, but every new provider needs the whole history again. There’s no single source of truth.”

This lack of continuity forced Nick to act as the system’s memory, a role prone to errors and exhaustion. “How easy is it for someone to fall through the cracks?” he asks, noting the risk for carers with longer, more complex journeys.

The administrative burden was immense. Nick accessed programmes like the Commonwealth Home Support Programme and a Level 3 Home Care Package, which he self-managed to keep his mother at home. This involved arranging home modifications, coordinating extra support, and navigating a maze of paperwork and digital platforms.

His engineering background and digital literacy helped, but he recognises these are barriers for many. “I listed the digital skills I used for a presentation,” he says. “People were shocked, saying they couldn’t do that. But the system expects you to.”

Tasks like scanning documents, managing online portals, and understanding what services to request, such as physiotherapy, required a level of health and digital literacy that Nick believes excludes many carers, particularly older or less tech-savvy individuals.

The system’s fragmentation was stark.

“You’re talking to different groups, and they only know their own world,” Nick explains. “Ask something outside their scope, and they point you elsewhere.” Specialists, GPs, and aged care providers operated in silos, leaving Nick to bridge the gaps. For example, during his mother’s hospitalisation, he repeatedly provided her care history, as hospital staff didn’t seem to tap into her My Aged Care records.

“The doctor would say, sounds like you’re on top of it,” Nick recalls. “That means they don’t have to be.” This reliance on carers to coordinate care highlighted a system that often fails to support those it serves.

Nick’s persistence paid off, but not without cost. He leveraged support groups, webinars, and advice from clinicians, like a geriatrician who urged him to act quickly due to long wait times. “She said, it’s going to take a year,” he recalls. “That turned the light on in my head to keep pushing.”

Yet, the emotional toll of navigating the system while caring for his mother was significant. “It’s exhausting,” he says, “but you dive in because you have to.” Support groups and online resources became lifelines, offering practical tips and a sense of community. “You get gems from webinars or people saying, have you tried this website?” he says.

Adapting to a relentless disease

As his mother’s dementia progressed, Nick faced constant changes. “No two weeks were the same,” he says. “Just when you think you’ve got a routine, a fall or new need forces you to problem-solve again.”

He implemented home modifications, like ramps and safety aids, and coordinated services to maintain her independence. But the rapid progression of her Alzheimer’s, described by specialists as “significant,” made home care increasingly challenging. “You can’t fight it with logic or anger,” Nick says. “You can only be patient and use the tools available to cope.”

A turning point came in late 2024 when his mother contracted COVID, which inflamed her brain and intensified her symptoms. “One minute I was enemy number one, the next she couldn’t let me go,” Nick recalls. Unable to secure respite care, he had her admitted to hospital, a decision that marked the beginning of her transition to residential care.

The hospital system’s holding pattern and lack of communication between state health services and aged care providers added to the stress. Eventually, Nick secured a permanent bed in a facility in Kiama, 40 minutes from their home in Nowra and less than two hours from Sydney where he planned to move to return to work.

“She’s coping as well as we could have hoped,” he says, though the transition was far from seamless, with repeated explanations of her needs underscoring the system’s disconnects.

Throughout, Nick learned to balance supervision with his mother’s dignity. Early on, he was a “helicopter child,” constantly watching her. A talk on the dignity of risk changed his approach, allowing her small freedoms, like shopping independently in familiar stores, while using tools like Find My iPhone for safety.

“It was about maintaining her independence in a controlled way,” he says. This balance was a delicate but essential part of caregiving, reflecting his growing understanding of dementia’s complexities. He also learned to manage his own anxiety, moving from constant vigilance to a more sustainable approach that preserved his mother’s quality of life.

A new purpose and hope for reform

Nick’s experience reshaped his life’s purpose. “It made me realise to do something I love, because life can change fast,” he says. Inspired to help others, he now works with CaringCo, a platform that uses technology, government data and provider information to simplify finding aged care services, addressing the very challenges he faced.