April 21, 2024

Author-activist Wendy Mitchell, who has died aged 68, won hearts and minds advocating for life with dementia. She was determined to remind people that those living with the disease are not “sufferers” and that there is a beginning, a middle and an end to the disease – with so much life to be lived in between. She strongly believed that people should have the right to choose their own death, and campaigned for assisted dying laws in Britain – one of the subjects of her last book.

Wendy has written three bestsellers, Someone I used to know (2018), What I wish people knew about dementia (2022) and One last thing: how to live with the end in mind (2023) – I was lucky enough to be her ghostwriter on all of them. They have been translated into dozens of languages, and her advocacy won her honorary doctorates from Bradford and Hull Universities and a British Empire Medal last year.

When I met Wendy in 2016, she wrote a daily blog, Which me am I today? , which she started simply to document her daily life, although it soon had tens of thousands of followers. Following her diagnosis of young-onset vascular dementia and Alzheimer’s disease in July 2014, Wendy was shocked by the lack of information and support available to those newly diagnosed.

In Somebody I Used to Know, she wrote about her own depression upon diagnosis, until she realized: “I was still the same person I was the day before my diagnosis.” She threw herself into academic and medical research, talking to doctors, nurses and other professionals. What I wish people knew about Dementia describes how the disease affects different parts of daily life apart from memory, including taste, smell, hearing, gait and vision.

Her tips, such as wearing a scarf over a flat screen television to keep it from looking like a hole in the wall, or sticking pictures of clothes on wardrobe doors as a reminder of what’s inside, made all the difference for those who were newly diagnosed.

Wendy enjoyed finding ways to outwit dementia. As she wrote in her last blog post: “Yes, dementia is a bummer, but oh what a life I’ve had playing games with this adversary of mine trying to stay one step ahead.”

Born in Wakefield, West Yorkshire, to Violet and Ken Draper, Wendy described growing up in their bar in her first memoir. She went to school in Pontefract and was a keen sportswoman who excelled at tennis and running – after her diagnosis she swapped running for tumbling in the Lake District. She described the lakes as her “paradise” and Friars Crag as her favorite seat.

Wendy raised her two daughters, Sarah and Gemma, alone after her divorce from their father in the early 1980s (although she continued to use her married name). For many years she earned her living as a cleaner, until she began working in administrative roles within the NHS, and was promoted to become a non-clinical team leader. Eventually forced to retire from her job as a rota manager at Leeds General Infirmary, she later campaigned for workplaces to support those newly diagnosed with dementia to continue working: “We don’t lose all our skills overnight just because of our diagnosis,” she said.

In early retirement, Wendy discovered other skills, including writing, and enjoyed her “trunles” around the village of Walkington, in the East Riding of Yorkshire, where she lived, capturing local wildlife with her trusty Nikon camera. She reveled in the fact that villagers who were initially unaware of her diagnosis described her as “the lady with the camera”.

She met many dementia advocates, and was inspired to start a campaign when she heard Agnes Houston speaking at a women’s and dementia event in York. Wendy has become a guiding light for others, a regular contributor at Innovations in dementia and York Minds and Voices, part of the DEEP UK Network of Dementia Voices.

She assembled her own formidable team of friends living with dementia, who produced video content talking about the issues they encountered, calling themselves “the Four Amigos.” She advised on the BBC TV series Casualty and the film Still Alice (2014), and received a mention from Hollywood actor Julianne Moore in her Bafta acceptance speech.

Wendy raised tens of thousands of pounds for Dementia UK with her annual “crazy challenges”, as she called them, daredevil stunts that included walking over hot coals, skydiving, wing-walking and, last autumn, a swim in Derwentwater after being forced to rappel down the Leadenhall -building in London (the “Cheesegrater”) due to technical problems (theirs, not hers). She maintained that she was fearless after her diagnosis, having already faced the worst.

Wendy was a force of nature, but dementia made her life increasingly difficult. She ended her life by voluntary abstinence from eating and drinking (VSED), a topic she discussed in One Last Thing. In her final blog post, written in advance, in which she announced her death, she said: “Adjusting to this life with dementia is over, but I don’t think dementia has won because that would be negative… it is me calling time on my dementia – checkmate – before it plays its last move.”

She also advocated for people to fight for assisted dying laws in her memory.

Reviewing Someone I Knew for the Sunday Times in 2018, Jackie Annesley wrote: “The world could do with more Wendys.” I couldn’t agree more, but there was only one wonderful Wendy, who took people by the hand and showed them how to live a good life with the disease in tow, or indeed how to survive the end of the to talk life so they can focus on life instead.

Wendy is survived by her daughters.

Wendy Patricia Mitchell, author and campaigner, born 31 January 1956; Deceased February 22, 2024

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