After watching her mum die in agony, Angie wants to change the law for other people diagnosed with this disease

It’s slow, painful and inhumane. This is how Angie List describes her mother’s recent death.

“It was a combination of sadness and relief that he was going through,” List says.

“But he shouldn’t have suffered this much.”

Warning: This story contains a harrowing image of Helen Lister in the weeks before her death.

List’s mother, Helen Lister, 79, weighed about 24 pounds at the time of her death. It remained gaping for more than 10 days, its interior cracked and dried out.

He lost his ability to swallow and slowly starve to death – late stage symptom Alzheimer’s diseaseHe was diagnosed in 2023.

Following his diagnosis, List helped his parents move into a flat in Ascot.

But his efforts to keep his mother comfortable there in her final weeks (hydromorphone for pain and sedatives to ease agitation) were hampered by the pressure sores that appeared on her emaciated body.

“The palliative care staff were wonderful and caring,” List says.

“But I knew [the pain relief] “It wasn’t 100 percent effective because when we tried to gently reposition it… it would grimace.”

List’s experience of watching her mother slowly die from dysphagia and cachexia, medical terms for difficulty swallowing and wasting syndrome, served as inspiration. a campaign He called for the introduction of the “Both Law”. (“Hem” was his mother’s nickname for “Grandma.”)

Such an independent legal provision – which voluntary assisted dying legislation – would allow a family member or legal representative to “choose a peaceful and humane death on behalf of a person with dementia” based on a set of specific criteria.

“This is not a quality of life decision, it’s a quality of death decision,” List says.

“This is not a decision about whether to end a life. This is a decision about whether the death will be prolonged and distressing for all involved, or whether the death will be merciful and quicker.”

Helen Lister grew up in rural NSW, and her upbringing shaped the quiet toughness she carried throughout her life, her daughter says.

“He had an extraordinary warmth and an instinct for knowing what people needed,” List says.

“He was extremely talented, creative and generous.”

Their occupations were many and varied; From hairdressing to catering; to help her jockey husband Arthur Listermanages a horse stud, later writes a book about his racing career; writing a column in the local newspaper, teaching at TAFE and organizing charity fundraisers.

“He loved to have fun… He had business cards called ‘Lister’s Fun House’ that listed his and his father’s names as directors,” List says.

“Change in organizational capacity” was one of them first signs Hem’s cognitive decline. He spoke to his doctor, who referred him for further tests.

Eight months later, in September 2023, Lister was diagnosed with Alzheimer’s disease.

Alzheimer’s is the most common form of dementia, accounting for approximately 70 percent of diagnoses. Alzheimer’s Research Australia.

List says a lack of education about the progression of the disease, especially in the later stages, is the driving force behind his campaign.

“Before this happened, I was naive about dementia and how Alzheimer’s kills,” she says.

“I was always confused about how someone actually died… I didn’t fully understand how the brain and body were disconnected. [creating] neurological difficulties.

People late stages of dementia gradually loses the ability to walk, communicate, eat, drink and swallow. As the body becomes weaker, it begins to fight infections and diseases; Pneumonia is a common cause of death.

Research shows dysphagia – inability to swallow – is “an extremely important comorbidity of Alzheimer’s” and is estimated to affect 84 percent to 93 percent of patients in the moderate to severe category.

“It’s not a risk. It’s a destination in end-stage dementia,” says List.

“The brain systematically destroys the cortical areas that coordinate swallowing. Once they’re gone, they don’t regenerate. This is the mechanism by which dementia kills.”

The possibility of cachexia is similarly obscured in conversations about the condition, List says.

“Dementia is no more leading cause of death In Australia… people should be able to say if it reaches a certain point [they can enact end-of-life wishes].

“But if we don’t tell people what the ending is going to be like, how are they going to indicate which option they want?”

Cognitive neuroscientist Professor Peter Nestor is also an associate professor of neuroscience. Queensland Brain Institute and Mater Hospital are concerned that too much information may disturb patients during early diagnosis.

“If it were you [relaying] each [death] “In this scenario that could happen, you would only overwhelm people,” Nestor says.

“Generally speaking, in my clinical experience, people [diagnosed with dementia] “I don’t want to know the end in the beginning.”

Dementia progresses differently among patients, he says. As with the timeline of deterioration, it’s difficult to tell people exactly what their “last few days will look like.”

need for improvement death literacy Discussions about dementia have emerged in other quarters, with some advocates of voluntary assisted dying calling for legislation to include the neurodegenerative condition.

Under current legislation, people living with dementia in all parts of Australia Access to VAD is deniedThere are two main reasons for this: The situation affects decision-making capacity and the time period people have to live in varies. Some people live decades after diagnosis, while others, like Lister, may live several years.

Ben White, professor of end-of-life law and regulation at QUT, says expanding VAD to include dementia is important but presents complex challenges and any changes to the law must be based on Australian evidence.

“This should include: Perspectives of people living with dementia“he says.

“Of course, if Queensland or anywhere is going to get in the way advanced request modelBy definition, you need to be very clearly and carefully informed about possible trends. [end-of-life] decisions.”

List is adamant that the Hem Act should exist separately from VAD legislation, and says a version of what he proposes already exists in palliative settings.

“Decisions about levels of sedation, the pace of comfort care, what constitutes ‘adequate’ symptom management—these are made every day, behind closed doors, by individual clinicians acting with conscience and compassion, without legal protection for themselves or their families,” he says.

“The Hem Act does not create anything new. It replaces the clinician’s lottery with a legal right.”

About an hour after he begins talking about his mother, a memory of List’s early 20s surfaces.

It was time to put the family’s 19-year-old dog, who was suffering from arthritis and could barely walk, to sleep.

“My mom said, ‘It’s about time,’ and I said, ‘How do you know?'” List said. “I said,” he recalls.

“He replied: ‘I can see it in your eyes and the way you look at me.’

“I knew my mother would want this too. It was heartbreaking that I couldn’t give it to her.

“If [Hem’s Law] “This is his legacy, this is what he left to the world, and I know it will make him happy.”

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