“I would have felt I should have done more, stood up for him more,” said Julane.
Her story is one of persistence in the face of medical disregard – a story she’ll bring to #IDC2024 in a concurrent session and the ‘First on scene’ panel discussion.
This is her experience…
Julane and Jeff Bowen loved their life together.
By their late middle age, they’d been a couple for 30 years, were close to their children (both from Jeff’s first marriage), and spent their leisure time volunteering for the Rural Fire Service or messing around on boats and horses around their Picton, NSW, property.
Julane worked part-time in the public sector, while Jeff was an international commercial pilot, edging up on retirement. He was senior enough to only have to fly a couple of long-haul legs a month, giving them plenty of time to spend together enjoying the fruits of the labours.
Theirs was a prosperous, peaceful, active life.
Then Jeff started to change.
It was subtle at first and even Julane put it down to his age and approaching retirement. But it wasn’t long before the changes began to alarm her.
“He was spending less time with his mates, and he was previously a social animal,” she recalled.
“He seemed depressed. Physically, his cholesterol was going up, his blood pressure was going up, he was less active. He was stressed when I wasn’t with him, and that began to escalate to paranoia.”
His personality, habits and tastes were changing substantially, but their GP dismissed her concerns.
“The GP knew him as this sociable, intelligent, athletic man – he thought I was over-reacting,” Julane said.
“He just tuned out to everything I was telling him.”
(The GP) just tuned out to everything I was telling him.
After a few years, things came to a head.
“I fell in our bedroom and Jeff tried to pick me up, but he was too weak, so he dropped me and I hit my head,” Julane said.
Paramedics were called and one of them immediately noticed something was wrong with Jeff. Unfortunately, Jeff resisted their attempts to separate him from Julane, and police were summoned. The resulting distressing experience led to him being sectioned at a public hospital psychiatric ward for four months, where he was treated for depression and schizophrenia.
Once again, Julane felt brushed off by the medical staff. But after months of badgering, they finally gave Jeff an MRI, only to discover severe shrinkage of his left frontal lobe, a tell-tale sign of frontotemporal dementia (FTD).
Not long afterwards, he was transferred to the geriatric unit at Braeside Hospital and formally diagnosed with FTD.
“I kept saying every day, ‘He's psychotic,’ and they were just ignoring me, like, ‘You're not a psychiatrist. What do you know?’” she said. “They should have listened to me.”
Jeff is now cared for at home by Julane, seven years after diagnosis, long past the initial prognosis of only nine months.
Julane has since gained a law degree so she can advocate for people in similar situations.
Julane has since gained a law degree so she can advocate for people in similar situations.
She’s also been instrumental in the establishment of a nationwide network of support groups called Carer Conversations, developed and run by DSA and the Australian Frontotemporal Dementia Association (AFTDA).
“It's about spreading awareness, so somebody else does not go through the trauma we did,” she said.
At the very heart of the International Dementia Centre, and indeed everything The Dementia Centre does, are people living with dementia and their carers, families and loved ones.
Their voices, their stories, inform everything we do, so we are making sure you’ll hear from them at #IDC2024.
They are heartfelt, heart-breaking and hopeful tales that are bound to surprise you, disturb you, even delight you.
You are not going to want to miss what these speakers bring to the stage at #IDC2024 – the compelling, complicated reality of living with dementia.