Mitchell lived for a decade with the confusion and hallucinations of vascular dementia. But in that time she became a best-selling author and minor celebrity in the United Kingdom – offering insights into a condition that will end the lives of more of us than almost anything else.
Sarah Mitchell (left) and her mother Wendy,who died in February at 68,10 years after her dementia diagnosis.Supplied
Throughout that decade,she was consistent about one thing:she wanted to die before she finally “went over the edge”. That,according to her daughter,Sarah,meant losing her independence and forgetting who her children were.
In February,when Wendy was 68,that moment loomed. And so she stopped eating and drinking. It took 10 days for her to starve to death.
Sarah falls silent when asked about that time. “I’d rather not go into too much detail,but it was hard,really,really painful and difficult. She did it. Incredible. I mean,she was so determined. Didn’t waver. I don’t know how she did it.”
But though she chose the timing of her death,Wendy did not choose the method.
Sarah Mitchell in Sydney. She will tell her mother’s story at the International Dementia Conference next week.Edwina Pickles
In the UK,voluntary assisted dying is not legal. In Australia,there are such laws,but people living with rarely fit the criteria. Telling her mother’s story is Sarah Mitchell’s attempt to start changing that.
For 10 years,Wendy Mitchell spent her energy trying to convince people that a good life was still possible after a dementia diagnosis. With a co-author,she wrote a blog,,and three bestselling books. She was determined to reframe language away from dementia “sufferers” – and to argue there was “a beginning,a middle and an end to the disease – with so much life to be lived in between”.
To raise money for research,she did annual “wacky challenges”. In,co-author Anna Wharton wrote that these were “daredevil stunts that included walking across hot coals,skydiving,wing walking and,last autumn,a swim ... after she was forced to abandon her abseil down the Leadenhall building in London”.
Sarah says her mother’s exploits led to some controversy in Britain – people wondered if she suffered dementia the same way others did. But Sarah says her mother’s advocacy often masked the struggle going on in the background.
Wendy had “so many prompts and alarms to prop her up … she was so organised”,Sarah says. Dementia changed her gait,so she was “always falling over”. And when she was invited to an event,she’d print out how to get there and how to get back. Wendy could still speak in public,Sarah says,but only because “she was saying the same things over and over again,so she was really articulate”.
“But ask her what she had for breakfast in the morning,she really struggled with that.”
In her final blog post,published by her daughters after her death,Mitchell wrote:“Yes,dementia is a bummer,but oh,what a life I’ve had playing games with this adversary of mine to try and stay one step ahead.”
To write,Wharton would ask Wendy questions over email and WhatsApp. “She’d only be able to write a paragraph – something in response to what the writer was asking – and then she forgot what she’d written,” Sarah says.
Wendy Mitchell wrote on her blog she would have chosen assisted dying “in a heartbeat” if she could have.Supplied
About a year ago,Wendy had the inkling that the “edge” she feared was looming. She joined Dignitas,the Swiss voluntary dying organisation,and was planning her trip when she fell down the stairs and broke both wrists and damaged her neck.
“When that happened,she couldn’t travel and her quality of life deteriorated quickly,with a loss of independence,” Sarah says. “So she decided to stop eating and drinking.
“It took 10 days. It took 10 days for my mother to die,and it could have taken minutes.”
In that last blog post,Wendy Mitchell lamented “the last cuppa tea … my final hug in a mug,the hardest thing to let go of”.
‘I know my mum deserved choice,and I know she won’t be the only one. However this happens,I want this conversation to move forward.’
Sarah Mitchell
Sarah,a nurse with a background in palliative care,says Wendy had “the best death she possibly could” in a hospice. But it was not what her mother had wanted. “I can’t say it was good. Because she wanted to die with dignity,quickly.”
“If assisted dying was available in this country,” Wendy wrote on her blog,“I would have chosen it in a heartbeat.”
Australian advocate Anne Bunning,the secretary of the World Federation Right To Die Societies,says that “at every public consultation and every forum,every question we get,people say,‘What about dementia?’ Most people assume that you can use assisted dying for dementia,but ... mostly it’s impossible.”
except the ACT (where legislation will not come into effect until next year),the person seeking voluntary death must have a prognosis of no more than six or 12 months to live,and they must have capacity,until the end,to ask for death. Between them,those provisions prevent dementia patients from accessing voluntary assisted dying. In NSW,the legislation specifically prohibits dementia as a criterion.
But the disease is the leading cause of death for women in Australia,and the second leading cause of death overall,.
Professor Tanya Buchanan,the chief executive of Dementia Australia,says people living with dementia and family carers had diverse opinions about voluntary assisted dying,so the organisation neither supports nor rejects the concept. “What we advocate for is choice and a greater engagement with people impacted by dementia to understand how to best empower them to make decisions about their life and death,” Buchanan says.
Sarah Mitchell is in Australia to tell her mother’s story at the next week. She finds it hard to talk about,and says she would not choose to die voluntarily herself – she’d rather let “nature take its course”. But she wants to convey her mother’s passion for the topic.
“I know my mum,and I know she won’t be the only one. However this happens,I want this conversation to move forward. That’s why I’m sharing what I’m sharing,” Sarah says.
“It’s deeply personal,and I’m not doing it lightly,but I think it’s important.”
National Dementia Helpline:1800 100 500.
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