Pascale’s story: The long goodbye

The news no family is prepared for

Fifteen years ago, Pascale sat beside her older brother in a specialist’s office. Their mother, Ingrid, wasn’t in the room.

“The doctor spoke and I couldn’t breathe,” Pascale says. “Early onset frontotemporal dementia. Two to four years to live.”

Until that moment, she hadn’t understood how serious things were.

“Life changed in an instant. But nothing prepared us for what was to come.”

Today, Ingrid is 71. She can no longer talk or feed herself. She no longer knows her daughter’s name – or that she has a longed-for grandchild. A recent brain scan showed almost no remaining activity.

Before the diagnosis

Ingrid had spent her life caring for others. After raising her children on Sydney’s northern beaches, she retrained as an aged care worker, supporting people living with dementia with warmth and compassion.

Then came the devastating irony: she was diagnosed with the very disease she had dedicated herself to caring for.

At first, the signs were small and easy to dismiss.

Pascale remembers a family dinner her mother had carefully planned. Ingrid placed the chicken in the oven – but forgot to turn it on. Then one evening, Ingrid called in distress. She was standing outside her own front door, convinced someone had changed the locks. Pascale drove over and opened the door immediately. ‘I don’t know what’s wrong with me,’ she said.

Soon, post-it note reminders appeared all over the house – on the fridge, walls and television.

At first, the family thought it was forgetfulness. Until it wasn’t.

“I became my mother’s carer”

With her father working overseas, Pascale became Ingrid’s primary carer. Every day after work she would visit, watching the changes accumulate: the stove left on, food left out for days, hygiene slipping.

After six months, it was no longer safe for Ingrid to live alone.

“We made the decision for Mummsie to move in with me. It was one of the hardest things I’ve ever done. The living grief – all tied up with the guilt, the sadness and the exhuastion ”

FTD often causes severe behavioural and personality changes alongside memory loss. Pascale says the emotional toll was immense.

After about a year, Ingrid needed full-time nursing care. Pascale visited facility after facility, devastated by what she saw.

“Nothing felt right for a woman who had just turned 59.”

Finally, one aged care home offered Ingrid a place immediately – despite a years-long waitlist.

Ingrid moved in at 59. She is still there today, aged 71.

The long goodbye

In the early weeks, Ingrid was still lucid enough to know she didn’t want to be there.

“She kept saying, ‘I want to come home with you, darling. Please. Let me come home.’ It still breaks my heart to think about all these years later.”

Pascale visited before work and after work. Each time, her mother asked to come home.

“And every visit, there was a little less of her there.”

Today, Ingrid no longer recognises her daughter.

“They say memories are all we have near the end of our lives,” Pascale says. “Sadly, Mummsie was robbed of all of hers.”

When Ingrid was diagnosed, the family also learned that FTD can be hereditary. Pascale and her brother each have a 50 per cent chance of carrying the gene.

Neither has been tested.

“There’s no cure,” Pascale says. “So right now, there’s nothing that can be done with that information.”

But the possibility changed everything.

Pascale threw herself into life with an urgency she now recognises as grief-driven. She accepted her dream job in Antarctica, spending months away each year.

“The diagnosis changed how I lived and how saw my future.”

People rarely talk about this side of dementia, she says – the quiet unraveling of the lives surrounding the person being lost. The double grief.

What research means

Across Australia, researchers are working to change the future of dementia, but more needs to be done. 

At Neuroscience Research Australia (NeuRA), Brain Foundation grant recipient Dr Timothy Couttas is studying the earliest biological changes linked to dementia – damage that begins years, even decades, before symptoms appear.

“The most important message is that progress is accelerating,” he says. “We are beginning to genuinely understand the biology behind these diseases.”

In the same laboratory, Dr Oana Marian is developing a blood test designed to detect markers of frontotemporal dementia earlier – potentially giving families more time to plan, intervene and access future treatments.

“If there had been more research when Mum was diagnosed,” Pascale says, “maybe we could have had more years with her while she was still herself.”

She believes her mother would be proud that her family chose to speak openly about dementia and its devastating impact.