- In 2022, Courtney’s beloved grandma began showing early signs of dementia, and just a few months later, she was diagnosed
- Courtney’s daughter, Billie, affectionately called her ‘Big Nan’ but Courtney struggled to explain what was actually happening to her grandma
- After ‘Big Nan’ took her last breath, Courtney became determined to write a book for families to explain dementia to their kids
Here Courtney Deaton, 35, Baldivis, WA, tells her story in her own words.
Sitting at Nan’s kitchen table, I watched as she dusted the flour off her hands.
‘What are you making?’ I asked.
My nan, Violet, smiled.
‘You’ll see,’ she said.
It was 1998 and I was seven. Every school holidays, my cousins and I travelled two-and-a-half hours south of Perth to stay with Nan and Pop, Bernie – a sheep shearer – on their farm.
There were cows, sheep and wide-open spaces to explore.
Honest, strong and straight to the point, Nan loved her family fiercely and always had a needle and thread to hand, working on jumpers, blankets and little keepsakes for birthdays and Christmas. To me, she was exactly what a nan should be.
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Later, I grew up and married my husband, Bryce, and we had our daughter, Billie-May, in July 2017.
Billie adored ‘Big Nan’ as she called her.
When I was at work as an education assistant, my mum, Raelene, often looked after Billie and took her to visit Nan and Pop. Billie and Big Nan shared a beautiful bond.
One night in early 2022, at my cousin’s 18th birthday, Nan was nattering away as usual, when suddenly she stopped.
‘Oh,’ she frowned. ‘I’ve lost my train of thought.’
‘I’ve lost my train of thought.’
All night, she’d forget what she was talking about or change conversations halfway through.
‘That’s odd,’ Mum said.
‘I’m sure it’s nothing to worry about,’ I replied, and we both brushed it off.
Only, a few months later, Mum called.
‘Nan has vascular dementia,’ she said gently.
My heart sank as Nan began forgetting everyday things, such as how to cook, clean, and even dress or put on her shoes.
READ MORE: Dementia diagnosis: I thought my unsteadiness was an ear infection
Mum and my aunties and uncle stepped up to help, while the rest of us visited as much as we could.
‘We don’t know how long she’ll know us for,’ I told Bryce sadly.
Pop was so stoic. When Nan went into hospital later that year, he was there every day.
But Nan declined quickly and, on occasion, it was as though she went backwards in time.
‘Where’s my baby?’ she once asked, distressed.
‘It’s okay, Nan,’ I soothed until the episode passed. It was heartbreaking to see.
Taking Billie, aged five, to visit Big Nan, I crouched down beside her before we went in. ‘Big Nan’s brain is working a bit differently,’ I explained. ‘If she says something confusing, we just go along with it.’
‘Okay, Mum,’ Billie said.
When Nan saw Billie her eyes lit up. ‘Courtney,’ she chimed, using my name.
Then she looked at me.
‘Billie…’ she said.
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Billie’s eyes widened and I forced a smile. ‘Hi Big Nan,’ Billie said softly.
‘I know what you mean now, Mum,’ Billie said later. ‘About her brain.’
It hit me – as an adult, I could barely understand what was happening, so how could my little girl?
From that moment, I started jotting things down – the questions Billie asked, the words I used and the moments that hurt.
‘Big Nan’s brain is very sick.’
I looked for resources, searching online, reading parenting forums and trying to find children’s books that explained dementia, but most were about grief after someone had died. There was nothing for the middle part – when the person you love is still there, but they are changing.
As Nan became more unwell, I stopped taking Billie to see her. Nan was bedbound and had lost a lot of weight.
‘I don’t want that to be Billie’s last memory,’ I told Bryce.
‘Big Nan’s brain is very sick,’ I told my girl honestly.
In March 2024, Mum called. ‘She’s taken her last breath,’ she stammered.
I’d seen Nan, 77, to say goodbye the day before, but I still felt numb.
That afternoon when Billie, then six, came home from school, I held her close. ‘Big Nan has passed away,’ I said. ‘She’s gone to heaven.’
‘Is that because of her brain?’ she asked.
‘Yes, darling,’ I said, as we cried together.
Speaking to Billie so openly, it dawned on me that maybe I could help another family with little kids navigate their loved one’s dementia journey.
‘I’m going to write a children’s book about this,’ I said to Bryce. ‘I want children to understand dementia without being frightened by it.’
So I wrote Through Billie’s Eyes.
Told from a child’s perspective, the story follows Billie as she watches her beloved great-grandmother change, and gently explains memory loss, confusion and the emotions that come with dementia, while reminding children that love never truly disappears.
After I met illustrator Stefanie Geyer – who lost her own grandmother to dementia – she brought Nan and Billie to life in the most perfect way.
I self-published the book through a Melbourne printing house, and in October 2024 when the first copy arrived, Billie cuddled up beside me to read it. With each word and turn of the page, her eyes welled with tears.
More than 500 copies have been sold, and we’ve helped raise over $14,000 for Dementia Australia through fundraising, walks and book profits.
It means everything when parents reach out to say their children finally understand what is happening to someone they love who has dementia.
‘There’s a book about me and Big Nan,’ Billie, now eight, proudly says.
The more we talk about dementia, the more we can help our children feel safe, and less confused about what’s happening.
Now, when I think of Nan, I don’t picture her in hospital, I picture her on the farm, baking in the kitchen, sewing blankets and telling us exactly what she thought.
She may have forgotten names and faces in the end, but she never forgot how to love.
