To her family, Helen Lister was someone who made the world around her feel brighter.

She was warm and always knew what her loved ones needed, whether it was a meal on the doorstep or a phone call.

She was a hard worker who simultaneously ran her own hairdressing salon and a side hustle in catering.

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On top of that, she managed a horse stud with her husband, retired Queensland jockey Arthur Lister.

She also taught hospitality skills at the local TAFE, spearheaded charity fundraisers, wrote a column in the local newspaper and served as the president of the school's P&C.

But for her daughter, Angie List, what people remember most about her mum is the joy she brought to everything.

"She adored entertaining and boy did she do it with flair – taking any excuse for a party, hiring karaoke machines for Christmas parties, even hosting a luau complete with fire dancers around their backyard pool," List said.

"She laughed with her whole body and she made every room she was in feel like somewhere worth being.

"She didn't want to be called grandma, she thought that made her sound old, she was far too vibrant for that.

"She gave herself a name her grandchildren could say that was easier than Helen – Hem."

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So when Hem didn't want to do anything for her 50th wedding anniversary, her daughter knew something was wrong.

"I knew immediately that was unlike her," List said.

"When I pushed, it turned out she didn't feel she could manage it herself anymore, so I stepped in and organised it for her."

In September 2023, Hem was diagnosed with dementia.

List said what followed was a two-and-a-half year period that was "relentless from the start".

The long goodbye

Each time Hem lost a part of herself to dementia, her family grieved.

"To have the most vibrant and capable human you know become a shell of her former self was beyond devastating," she said.

"To see her face but missing that huge smile, to struggle to hear a meek voice saying incomprehensible words instead of her loud voice and vivacious laugh. 

"We lost the woman we loved in pieces and grieved it every time we lost something again. 

"There's a reason it is called the long goodbye."

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For eight months up until her death, Hem struggled to swallow.

She required a minced diet and thickened fluids to get the nutrients she needed.

Soon her brain could no longer coordinate the act of swallowing at all.

"She still had a huge appetite, that is the cruelty of it," List said.

"She was not choosing not to eat, the mechanism was gone."

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In Hem's final days, she weighed 24 kilos and her mouth was open continuously for 10 days.

Her mouth and tongue were dry despite her family's hourly attempts to moisten it with swabs and sprays.

Hem's family felt helpless as they watched her in pain from the starvation.

She did not have access to assisted dying as an option because she no longer had the ability to request it.

"The law had been designed for people who retained the capacity to ask for it themselves," List said.

"Dementia, by definition, takes that capacity away.

"She did not deserve to die by starvation."

Push to create Hem's 'greatest legacy'

List is now fighting for change to ensure no other Australian endures the same fate.

Dementia, including Alzheimer's disease, is currently Australia's leading cause of death.

The condition accounted for more than 17,500 deaths in 2024, according to the latest data from the Australian Bureau of Statistics.

List is calling for a new standalone legal provision called Hem's Law, separate from existing assisted dying legislation, to permit a family member or legal representative to choose a peaceful death on behalf of a person with dementia.

She said this should only be approved once two independent doctors have confirmed the patient has reached the active dying phase.

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Under List's proposal, the legal provision would also require a speech pathologist to confirm the complete and irreversible loss of swallowing, and a palliative care specialist to confirm comfort care is the only remaining pathway.

List is also proposing a clear and legally binding opt-out provision for anyone who does not want this option available to them for any reason.

She has since started a Change.org petition to gain support for Hem's Law.

If the law were to become a reality, it would mean her mum's suffering was not in vain.

"It would mean my own children may not have to suffer the trauma of seeing their mother in pain and be helpless like I was," she said.

"She spent her whole life raising money to improve people's lives. 

"If Hem's Law passes, her story becomes her greatest legacy."

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