In this episode, I want to unashamedly plug the session called 'The Forgotton Epidemic?' at the Nelson Arts Festival later this month. As my regular listeners probably know, I am the curator and programme manager of Pukapuka Talks, the festival’s literary programme. This year, I will be working with the fabulous Nelson Arts Festival team to deliver 18 events.
In the 'The Forgotton Epidemic?', bestselling authors Charity Norman and Wendyl Nissen join me on stage to facilitate a kōrero about what works when it comes to dementia treatment and care and what desperately needs to change to ensure our loved ones can die with dignity.
This session will explore how these two authors transformed death into art; both Charity and Wendyl have ‘been through the fire’ of supporting a parent with dementia, and their experiences enabled them to write two astonishing books.
Charity’s mother Beryl died with Alzheimer’s in 2016 and Wendyl’s mother Elsie died with the same disease in 2019. This is a really personal topic for me as my mum Robyn was finally diagnosed with both Alzheimer’s and vascular dementia a couple of years ago. I say finally because she had memory loss for some time before that, which caused her a great deal of anxiety, but a diagnosis was, for many years, elusive.
I know I’m not alone. So I invited Wendyl and Charity to join me in Nelson to discuss what happens when a parent gets dementia and how to respond initially as well as how their immediate whānau attempt to understand and process the experience afterwards.
In Charity Norman’s case, she wrote Remember Me, a compelling novel about a 40-something woman called Emily returning to Aotearoa to care for her father who has dementia. The story is also a ‘whodunnit’, as Emily gradually finds out the truth about the disappearance of their neighbour’s daughter 25 years earlier. When Catherine Woulfe, then The Spinoff books editor, described the novel as 'extraordinarily moving in its exploration of the notion of a good death', she concluded that one can't write a book like this without a real story behind it. So this Pukapuka Talks session is your opportunity to hear that real story.
Wendyl Nissen also attempted to come to terms with her mother’s final years by writing about it; in her case, a moving and often funny memoir called My Mother and Other Secrets.
In doing so, she unexpectedly exposed numerous skeletons in the family closet. Determined to uncover the buried truth, Wendyl’s journalistic training led her to some wild and intriguing stories of loss, grief, and love. My Mother and Other Secrets is a story about mothers and daughters, ageing, and the way deep family traumas echo across generations, spliced with practical advice.
So please join Charity, Wendyl and myself at The Forgotten Epidemic? at 3pm on Friday October 21, when we’ll consider how best to support a loved with dementia, discuss how to look after yourself in the process, examine theories about the contributing factors – genetics, nutrition, insomnia, physical inactivity, emotional repression – and look at what the latest science says about prevention.
The question mark in the session title is, by the way, deliberate because it seems to me that, although dementia impacts on so many families’ lives it is another one of those tricky taboo topics that we don’t talk about enough.