Planning for Aged Care: A Real Story of Love, Loss and the Hidden Costs of Care

By Julie McMillan, 65, Melbourne

Understanding aged care, preparing financially, and navigating the emotional toll of a partner’s decline can feel overwhelming. Julie’s story is a powerful, honest account of caring for her husband Robert through a long dementia journey. It highlights what many families experience — and what they wish they’d known earlier. Her insights also reflect many of the themes uncovered in The 2025 Retirement Report, commissioned by Just Better Care Melbourne Mornington Group, which explores how Australians 55+ feel about retirement, savings and aged care.

Looking Back: What She Wishes She Could Have Done Differently

Julie spent her early working life balancing study, part-time work and raising a young family. With a 20-year age gap between them, she always expected she would continue working long after he retired. But life took another direction. After pausing her career to raise children, returning to Speech Pathology became difficult due to new mandatory postgraduate requirements. She created home-based businesses instead, fitting work around family needs.

When Robert began showing early signs of cognitive decline in 2004, everything changed. As his dementia progressed, Julie’s capacity to work steadily or contribute to superannuation was significantly affected.

“Had we not been forced into the dementia journey, I would have retrained, worked 3–4 days a week, and built our retirement savings significantly.”

Her experience mirrors the report’s findings in the Retirement Priorities and Worries section, where health, independence, and financial stability were the top concerns for older Australians.

Aged Care Costs: Not Exactly a Shock — But Always Stressful

By the time Robert required permanent care, Julie already understood the basics — RADs, daily care fees and means testing — thanks to hearing about others’ experiences in her dementia support group. While not shocked by the numbers, managing them on my own was daunting.

“Care is undervalued. We must recognise the true cost of providing it.”

The broader concern is reflected in the report’s section on Aged Care Savings and Planning, where many Australians reported feeling unprepared for the financial realities of future care.

Why Navigating Aged Care Feels So Overwhelming

Julie is tech-savvy, younger than her husband and has an allied health background — yet she still found the system extremely complex. She stresses that each person’s situation is unique and costs vary based on income, assets and timing. Advocacy, support and persistence are often required.

For people beginning this journey, local guidance can make a significant difference. 

Helpful pages include:

These align with the broader challenges highlighted in the report’s section on Choosing and Accessing Aged Care, where many Australians reported confusion about the steps involved.

The Value of Early Assessments

One of Julie’s strongest pieces of advice is to organise an aged care assessment early — even if you aren’t sure you’ll need services soon.

“You can’t assume you’ll have time to plan. Often it’s a fall or medical event that forces everything to happen at once.”

Early assessments create options. They also align with insights in Retirement Savings and Planning, where those who plan early express far higher levels of confidence about their future.

Respite Care: An Underestimated Support

Julie encourages people to see respite not just as relief for carers, but as a way to understand how different care environments operate. She observed that:

  • Respite helps someone gradually get used to a new environment.
  • It provides a real-world preview of day-to-day care.
  • Not all facilities are alike — the most expensive isn’t always the best.

However, she also warns that during a crisis, facility choice is often driven by bed availability, not preference. Moving later can be difficult, especially for someone living with dementia.

How the Age Gap Affected Their Nest Egg

While the 20-year age gap shaped expectations, Julie believes the dementia journey itself had the biggest financial impact. Caring full-time meant she struggled to maintain a regular income or super contributions, and savings were often needed for unexpected costs.

“I was torn between wanting to work, feeling I should work, and the duty of care I had for him.”

This reflects broader trends highlighted in the report, where women are more likely to have interrupted working lives due to caring responsibilities.

Are Australians Prepared for Aged Care Costs?

Julie doesn’t think so. She believes the system’s complexity and emotional weight make it hard for people to prepare effectively. She supports existing protections for partners staying in the family home and believes selling the home later to fund RADs is reasonable once neither partner can live there.

Her views align with nationwide concerns explored in Aged Care Savings and Planning, where many older Australians report they do not fully understand what their future care might cost.

A Final Reflection: Compassion Over Perfection

Julie recognises the importance of planning — but also acknowledges that in the thick of a long health journey, planning often becomes secondary to survival.

“When complex health issues arise, you can only do what you can manage at the time.”

Her greatest peace comes from knowing she ensured Robert felt safe, valued and loved in his final years, even though it affected her long-term financial position.

For more context on national attitudes and insights, you can explore About the 2025 Retirement Report.

Where to Get Help

Julie’s story highlights the emotional, financial and physical weight carried by carers. No one should have to manage it alone. If you or someone you love needs support with ageing, dementia care, respite or private in-home services, the following links may help: