Spreading the word about losing words
Writer Kate De Goldi has spent much of her life watching relatives spiralling into mental decline through dementia – a disease she thinks is often misunderstood and shut away.
Dementia, and the loss of language, is central to her children's novel, The ACB with Honora Lee, now reaching a wider audience as it has been turned from the page to the stage. Adapted by debut playwright and director Jane Waddell, The ACB With Honora Lee is on till the end of March as part of the New Zealand Festival.
Speaking from Adelaide, where the Wellington-based, award-winning writer is a guest speaker at the Adelaide Writers' Festival, De Goldi was inspired to write the book after spending time in a dementia unit watching her mother, Frances', decline from the disease. Her mother had been principal cellist in the Christchurch Symphony Orchestra and also taught music. Not long after she passed away, De Goldi's father, Ron, a former lawyer, was diagnosed, spending a year in the same unit in Christchurch's Santa Maria rest home before he died. Similarly, a maternal aunt also developed the disease. When the writer was a teen, her maternal grandmother moved into the family home as she couldn't live on her own.
"Granny also had dementia. She had her funny ways, and that was all part of where this story came from," says the Arts Foundation laureate.
"The thing that was interesting, especially for my father, was that he didn't particularly know who we were in the end, but he knew we were connected to him. He would often call me Rosa or Julia, which were his sisters' names. For a childrens' writer, I saw that some of the residents were living a second childhood, or back at that time of their childhood, and that's an incredible thing.
"Mum was very sweet when she had dementia. She would make comments like, 'Who is getting Dad's dinner?' and she would talk about the orchestra being in the next room. She ended up dying rather suddenly. A lot of people would ask me things like, 'Does she know you?', but that's not the right question. It didn't matter to me that Mum knew who I was or Dad knew who I was. Their quality of life doesn't depend on them knowing us."
De Goldi wanted to make the point that children shouldn't be shut away from rest homes and dementia units. In the book, and now the stage play, nine-year-old Perry visits her grandmother, Honora Lee, in a dementia unit to escape her overbearing parents. De Goldi often took her grandchildren along when she visited. At the time, the children's and young adult writer was living with her partner, photographer Bruce Foster, and an extended family of children and grandchildren in Wellington's Breaker Bay. "My grandson was quite young at the time. What I found was that I became so enchanted with the kids' world and being around them, and I saw the connections between their world and those in the dementia unit."
Apart from the joy these visits brought to the residents, she observed that their child-like imaginations and behaviours were not dissimilar. Her grandmother used to carry a doll around – in the play, Honora Lee, played by actress Ginette McDonald, carries around a special ragdoll.
"I noticed that the residents' faces would light up when they saw a child. I definitely do wish for better attitudes towards people who behave differently – those with mental illness and neurological dysfunction, the homeless and the mentally ill. A writer's job is to make people think about that. Hopefully the story makes people think and pause and take kids into those places. In an ideal world, we would have aged care facilities beside schools."
In the book and play, Perry learns her grandmother has an unconventionally strong interest in the alphabet, so she makes an alphabet book about her experiences. Language is a big part of the book. While Gran is losing her language, Perry is madly gathering it, and De Goldi plays with the intersection between the two throughout the book.
"A dementia unit is quite an amazing place. It's an incubator of the most amazing narratives. All those lives have been lived, and I wanted to honour that in some way. The people there have no short-term memory and they are living quite fervent lives, but I reject the notion that there's no quality of life inside those places. Narrative for me is a way of navigating the world, and gathering clues about people."
With so many relatives affected by the disease, does she fear dementia? "I couldn't not worry. I've read a lot about it. It's not genetic and I eat well, and I exercise, and I'm also well socialised. One of the things I've read a lot about is the need to learn new things."
She will be learning new things when she takes on a new challenge, turning her most recent young adult novel, From the Cutting Room of Barney Kettle, into a screenplay for a Sydney-based production company. Another book, The 10pm Question, is also being turned into a film script, which she says has been skilfully transformed.
"Having watched the way that Jane has transformed my book into a play, and the script for The 10pm Question too, has given me some heart about giving it a go. I should say yes to most things, even when they make me nervous."
The ACB of Honora Lee is on at Circa Theatre until Sunday March 20. Book at ticketek.co.nz