<div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>To her family, Helen Lister was someone who made the world around her feel brighter.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She was warm and always knew what her loved ones needed, whether it was a meal on the doorstep or a phone call.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She was a hard worker who simultaneously ran her own hairdressing salon and a side hustle in catering.</span></div></div><div><div id="adspot-mobile-medium"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/howard-was-left-a-quadriplegic-after-an-accident-in-japan-then-came-another-cruel-twist/b08cf44a-7030-4612-8fb1-7976a390d7ca" rel="" target="_blank" title=""><strong><span>Howard was left a quadriplegic after an accident in Japan, then came a cruel twist</span></strong></a><span></span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>On top of that, she managed a horse stud with her husband, retired Queensland jockey Arthur Lister.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>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&amp;C.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>But for her daughter, Angie List, what people remember most about her mum is the joy she brought to everything.</span></div></div><div><div class="OUTBRAIN" data-reactroot="" data-src="//www.9news.com.au/national/hems-law-for-dementia-patients-as-helen-reached-her-final-days-she-was-unable-to-swallow-her-family-felt-helpless/c448f88c-a0a8-4205-806b-2e54e88dc547" data-widget-id="AR_5"></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"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.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She laughed with her whole body and she made every room she was in feel like somewhere worth being.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She didn't want to be called grandma, she thought that made her sound old, she was far too vibrant for that.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She gave herself a name her grandchildren could say that was easier than Helen - Hem."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE: </span></strong><a href="https://www.9news.com.au/health/alzheimers-disease-dementia-australia-blood-test/bb3e49cc-52ef-4ec1-b332-c657f00d79ee" rel="" target="_blank" title=""><strong><span>How a blood test could predict if and when you could get Alzheimer's</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>So when Hem didn't want to do anything for her 50th wedding anniversary, her daughter knew something was wrong.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"I knew immediately that was unlike her," List said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"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."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>In September 2023, Hem was diagnosed with dementia.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>List said what followed was a two-and-a-half year period that was "relentless from the start".</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><h3><strong><span>The long goodbye</span></strong></h3></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Each time Hem lost a part of herself to </span><a href="https://www.9news.com.au/dementia" rel="" target="_blank" title="dementia"><span>dementia</span></a><span>, her family grieved.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"To have the most vibrant and capable human you know become a shell of her former self was beyond devastating," she said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"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. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"We lost the woman we loved in pieces and grieved it every time we lost something again. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"There's a reason it is called the long goodbye."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>NATIONAL:</span></strong><span> </span><a href="https://www.9news.com.au/national/anthony-albanese-announces-new-plan-to-tackle-fuel-crisis-calls-out-fuel-hoarders/e357bea2-b7df-4aa1-b62d-4ad62fb4ecb6" rel="" target="_blank" title=""><strong><span>PM announces new plan to tackle fuel crisis, calls out fuel hoarders</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>For eight months up until her death, Hem struggled to swallow.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She required a minced diet and thickened fluids to get the nutrients she needed.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Soon her brain could no longer coordinate the act of swallowing at all.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She still had a huge appetite, that is the cruelty of it," List said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She was not choosing not to eat, the mechanism was gone."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/queensland-oil-reserve/c3952d81-23f7-4770-8eb2-bcc4d1def204" rel="" target="_blank" title="Queensland could fast-track the opening of an oil lake the size of Singapore"><strong><span>Queensland could fast-track the opening of an oil lake the size of Singapore</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>In Hem's final days, she weighed 24 kilos and her mouth was open continuously for 10 days.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Her mouth and tongue were dry despite her family's hourly attempts to moisten it with swabs and sprays.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Hem's family felt helpless as they watched her in pain from the starvation.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She did not have access to assisted dying as an option because she no longer had the ability to request it.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"The law had been designed for people who retained the capacity to ask for it themselves," List said.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"Dementia, by definition, takes that capacity away.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She did not deserve to die by starvation."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><h3><strong><span>Push to create Hem's 'greatest legacy'</span></strong></h3></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>List is now fighting for change to ensure no other Australian endures the same fate.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>Dementia, including Alzheimer's disease, is currently </span><a href="https://www.9news.com.au/national/dementia-now-leading-cause-of-death-in-australia/85713937-bb9f-4660-a0f6-71be97f114dd" rel="" target="_blank" title="Australia's leading cause of death"><span>Australia's leading cause of death</span></a><span>.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>The condition accounted for more than 17,500 deaths in 2024, according to the </span><a href="https://www.abs.gov.au/statistics/health/causes-death/causes-death-australia/2024" rel="nofollow" target="_blank" title="latest data"><span>latest data</span></a><span> from the Australian Bureau of Statistics.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>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.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She said this should only be approved once two independent doctors have confirmed the patient has reached the active dying phase.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><span>READ MORE:</span></strong><span> </span><a href="https://www.9news.com.au/national/fuel-crisis-measures-national-road-transport-association-truckies-knock-albanese/ef029c26-7bf4-4d98-b634-100d84247a49" rel="" target="_blank" title="'Businesses are going under now': Truckies knock Albo's fuel crisis plan"><strong><span>'Businesses are going under now': Truckies knock Albo's fuel crisis plan</span></strong></a></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>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.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>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.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>She has since started a </span><a href="https://www.change.org/p/hem-s-law-mercy-when-death-has-begun" rel="nofollow" target="_blank" title="Change.org petition"><span>Change.org petition</span></a><span> to gain support for Hem's Law.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>If the law were to become a reality, it would mean her mum's suffering was not in vain.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"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.</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"She spent her whole life raising money to improve people's lives. </span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><span>"If Hem's Law passes, her story becomes her greatest legacy."</span></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><strong><em><span>NEVER MISS A STORY:</span></em></strong><span> </span><strong><em><span>Get your breaking news and exclusive stories first by following us across all platforms.</span></em></strong></div></div><div class="block-content"><div class="styles__Container-sc-1ylecsg-0 goULFa"><ul><li><strong><em><span>Download the 9NEWS App here via</span></em></strong><span> </span><a href="https://apps.apple.com/au/app/9news/id1010533727" target="_blank"><strong><em><span>Apple</span></em></strong></a><span> </span><strong><em><span>and</span></em></strong><span> </span><a href="https://play.google.com/store/apps/details?id=nineNewsAlerts.nine.com&amp;hl=en_AU&amp;pli=1" target="_blank"><strong><em><span>Google Play</span></em></strong></a></li><li><strong><em><span>Make 9News your preferred source on Google by</span></em></strong><span> </span><a 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