Jim Rogers on love, loss and living well with younger-onset dementia
- Replies 0
At the memory clinic, Jim Rogers is asked to reach out and touch his husband's left cheek with his right hand.
He does the opposite — left hand, right cheek — and Tyler starts crying because he knows something is very wrong.
Jim, whose life has been shaped by searing loss and serendipitous love, was soon diagnosed with younger-onset Alzheimer's disease.
"It's the most horrific, evil disease," Jim tells Australian Story, "but you can live well with dementia."
About 410,000 Australians are living with dementia — a number predicted to double by 2058 — and Jim hopes to reduce the stigma surrounding the condition.
The 58-year-old co-hosts a podcast with broadcaster Hamish Macdonald, whose own father died from dementia last year.
"I have learned that life is not over the minute you get a diagnosis — there is joy to be had," Hamish says.
But while Jim puts on a brave face, his family says the cracks are starting to show.
"We're on a train track to hell, and there's no stopping the train," his daughter Millie says.
A 'true soulmate' and a grim prognosis
Before there was Jim and Tyler, there was Jim and Lorna.
The "true soulmates" married in their hometown in central England in 1989, and children followed in quick succession: first Millie, then Harvey, then Daisy.
"We had three under three, so we had our work cut out for us," Jim says.
In 1996 they moved to Perth in search of adventure — but two years in, an irritating mole on Lorna's calf turned out to be melanoma.
After her surgery they returned to the UK to be closer to family, but six months later, Lorna found a lump.
The prognosis wasn't years, or months, or even weeks — but just days.
"It was unbelievable. This stuff happens in a film, and we were just normal folks," Jim says.
Outward strength, private despair
When Jim told their three little kids that Mum wasn't coming home, they didn't believe him.
Six-year-old Millie thought it was a game of hide-and-seek, and went off to find her.
"It was so heart-wrenching to destroy that innocence in a child," Jim says.
Jim became a "super dad", holding their world up — but privately, he was in ruins.
"I'd get them into school and drag myself home and slam the door, shut the curtains, lie on the bed, cry, not eat — just wallow in a black cloud all day," he says.
"I felt it was going to be an endless journey of sadness."
A literal sign that was impossible to ignore
Jim's parents eventually decided he needed a break; in May 2000 he reluctantly agreed to a holiday.
Jim went to the hotel pool — and sat down next to Tyler.
They hit it off and kept in touch. They both felt something bigger than friendship, but Jim was full of doubt.
"I started to think, this is ridiculous. Like, this is a man for a start. I've got responsibilities. I've got kids. I can't do this," Jim says.
"And he was like, 'No, there's something strong here. I can't just walk away from you.'"
They tried to map a future, but Jim wanted things to stay normal for the kids; being openly gay in an era of "massive homophobia" didn't feel like an option.
"He said, 'The only way this can work is if the house next door came up for sale," Tyler recalls.
That same day, a 'For Sale' sign was knocked into the yard next door.
"The exact day. You can't make this up," Tyler says.
Six months after they met, Tyler and Jim became neighbours.
"Behind closed doors we were living together, with the gardens and the houses shared," Jim says.
The kids knew Tyler as their dad's best friend, generous and fun.
Daisy was shocked when the truth eventually came out.
"I broke down. I thought my life was over, to be honest," she says.
"It took time to adjust. And I think moving to Australia made it easier for us."
A decade later, they were all living in Sydney, and Jim and Tyler were married.
"I see Tyler as a saviour of Dad because it brought him back to happiness," Daisy says.
A buzzing phone leads to a shocking diagnosis
The first signs of dementia appeared a few years before Jim's diagnosis: little errors at work, repeated conversations, being a bit forgetful.
But Jim worked a busy job flipping houses, and his GP put it down to stress.
"One day I went to my cardiologist and she was getting a bit pissed off because my phone was constantly going off," Jim says.
"She was like, 'Could you put it on silent?' And I had this blank; I couldn't think how to do it."
The cardiologist referred him to a memory clinic.
In 2022, at the age of 55, Jim was diagnosed with younger-onset Alzheimer's.
The silver lining in a very dark cloud
Jim's world suddenly became smaller. He gave up his driver's licence and retired from work. He spiralled into despair.
Finally, Tyler told him to "snap out of it" and stop wasting the now worrying about the future.
"I was so forceful with him because I want to enjoy that now with him, for as long as I can," Tyler says, fighting back tears.
Jim gave himself the weekend to wallow and started Monday with a fresh outlook.
"You can turn something sad and hard into something positive and upbeat. You just have to put your mind in focus and do it," he says.
He was given about 10 years, but nobody really knows how quickly it will develop.
Jim says his early diagnosis has been a gift because he can make time for things he would otherwise have put off; his bucket list has a lot of ticks on it.
He can also work to slow the disease: he takes medication, watches his diet, works with a trainer, swims every day and does yoga to relax his brain.
"I forget that he has dementia. There are times I have to remind myself because he is doing so well," son Harvey says.
A transformative friendship
Jim, who now lives in Brisbane, has become an advocate for Dementia Australia.
He co-hosts the Hold The Moment podcast, which shares stories about people living with dementia and their loved ones.
"It was like everything in his life has led to this moment," Millie says.
This is how he met Hamish, whose father had Parkinson's and Lewy body dementia.
"Going into this, I expected I was there to look after the co-host. The reality is it's actually me that needed help," Hamish says.
"I was feeling quite angry about dementia. It was not an easy ride looking after Dad."
Jim helped Hamish realise there was still room for fun and meaningful moments with his father.
"It adjusted what I did with Dad. As often as we could, we'd go for a swim at the ocean pool so that not everything we did together was centred around dementia," Hamish says.
"It was transformative."
'The dark of night is horrible'
Jim likens dementia to having layers of dust accumulating on his brain.
He gets lost in familiar places. He gets distracted easily. He struggles to sleep and has vivid nightmares, so he's exhausted all the time.
"In the dark of night is horrible. Your mind plays tricks on you," Jim says.
Jim can't protect his children like he did when their mum died — and they don't want him to.
"We're saying to him all the time, 'We're adults, we have kids of our own. We can look after you,'" Millie says.
Confronting the future
The family has spoken about what will happen when Jim inevitably goes downhill.
"The hardest conversations are about what it looks like when he doesn't remember us," Daisy says.
Jim has thought about euthanasia, but nothing has been decided yet.
"I don't know if it takes more strength to take control, or more strength to go where you're going to go," he says.
For now, though, he's focusing on what he loves: his husband, his children, his grandchildren, his advocacy.
"Dementia isn't all doom and gloom. I want to cram so much in," Jim says.
"I'm so full of life and full of love."
If this has prompted any questions or concerns, please call the National Dementia Helpline on 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au for live chat and email options.
Watch Australian Story's Forget Me Not, 8pm, on ABCTV and ABC iview.
Written by Monique Ross and Kirstin Murray, ABC News.
He does the opposite — left hand, right cheek — and Tyler starts crying because he knows something is very wrong.
Jim, whose life has been shaped by searing loss and serendipitous love, was soon diagnosed with younger-onset Alzheimer's disease.
"It's the most horrific, evil disease," Jim tells Australian Story, "but you can live well with dementia."
Jim says a dementia diagnosis is not all "doom and gloom". (Australian Story: Floss Adams)
About 410,000 Australians are living with dementia — a number predicted to double by 2058 — and Jim hopes to reduce the stigma surrounding the condition.
The 58-year-old co-hosts a podcast with broadcaster Hamish Macdonald, whose own father died from dementia last year.
"I have learned that life is not over the minute you get a diagnosis — there is joy to be had," Hamish says.
Hamish and Jim use their podcast to share uplifting stories about people living with dementia. (Supplied)
But while Jim puts on a brave face, his family says the cracks are starting to show.
"We're on a train track to hell, and there's no stopping the train," his daughter Millie says.
A 'true soulmate' and a grim prognosis
Before there was Jim and Tyler, there was Jim and Lorna.
The "true soulmates" married in their hometown in central England in 1989, and children followed in quick succession: first Millie, then Harvey, then Daisy.
"We had three under three, so we had our work cut out for us," Jim says.
Jim and Lorna had three kids in quick succession.
In 1996 they moved to Perth in search of adventure — but two years in, an irritating mole on Lorna's calf turned out to be melanoma.
After her surgery they returned to the UK to be closer to family, but six months later, Lorna found a lump.
The prognosis wasn't years, or months, or even weeks — but just days.
"It was unbelievable. This stuff happens in a film, and we were just normal folks," Jim says.
Lorna had a melanoma removed from her leg, but the cancer had spread.
Outward strength, private despair
When Jim told their three little kids that Mum wasn't coming home, they didn't believe him.
Six-year-old Millie thought it was a game of hide-and-seek, and went off to find her.
"It was so heart-wrenching to destroy that innocence in a child," Jim says.
Jim became a "super dad", holding their world up — but privately, he was in ruins.
"I'd get them into school and drag myself home and slam the door, shut the curtains, lie on the bed, cry, not eat — just wallow in a black cloud all day," he says.
"I felt it was going to be an endless journey of sadness."
After Lorna's death, Jim often broke down in grief after dropping the kids at school. (Supplied)
A literal sign that was impossible to ignore
Jim's parents eventually decided he needed a break; in May 2000 he reluctantly agreed to a holiday.
Jim went to the hotel pool — and sat down next to Tyler.
They hit it off and kept in touch. They both felt something bigger than friendship, but Jim was full of doubt.
Tyler and Jim met while they were on holiday and formed a quick friendship. (Supplied)
"I started to think, this is ridiculous. Like, this is a man for a start. I've got responsibilities. I've got kids. I can't do this," Jim says.
"And he was like, 'No, there's something strong here. I can't just walk away from you.'"
They tried to map a future, but Jim wanted things to stay normal for the kids; being openly gay in an era of "massive homophobia" didn't feel like an option.
"He said, 'The only way this can work is if the house next door came up for sale," Tyler recalls.
That same day, a 'For Sale' sign was knocked into the yard next door.
The house next to Jim's, in England's West Midlands, came up for sale at the perfect time. (Supplied)
"The exact day. You can't make this up," Tyler says.
Six months after they met, Tyler and Jim became neighbours.
"Behind closed doors we were living together, with the gardens and the houses shared," Jim says.
Jim and Tyler had separate homes, but joined up their backyards. (Supplied)
The kids knew Tyler as their dad's best friend, generous and fun.
Daisy was shocked when the truth eventually came out.
"I broke down. I thought my life was over, to be honest," she says.
"It took time to adjust. And I think moving to Australia made it easier for us."
Jim and Tyler married in an old abbey in the UK. (Supplied)
A decade later, they were all living in Sydney, and Jim and Tyler were married.
"I see Tyler as a saviour of Dad because it brought him back to happiness," Daisy says.
A buzzing phone leads to a shocking diagnosis
The first signs of dementia appeared a few years before Jim's diagnosis: little errors at work, repeated conversations, being a bit forgetful.
But Jim worked a busy job flipping houses, and his GP put it down to stress.
"One day I went to my cardiologist and she was getting a bit pissed off because my phone was constantly going off," Jim says.
"She was like, 'Could you put it on silent?' And I had this blank; I couldn't think how to do it."
The cardiologist referred him to a memory clinic.
In 2022, at the age of 55, Jim was diagnosed with younger-onset Alzheimer's.
The silver lining in a very dark cloud
Jim's world suddenly became smaller. He gave up his driver's licence and retired from work. He spiralled into despair.
Finally, Tyler told him to "snap out of it" and stop wasting the now worrying about the future.
"I was so forceful with him because I want to enjoy that now with him, for as long as I can," Tyler says, fighting back tears.
Tyler pleaded with Jim to try to focus on the positives in his life. (Australian Story: Floss Adams)
Jim gave himself the weekend to wallow and started Monday with a fresh outlook.
"You can turn something sad and hard into something positive and upbeat. You just have to put your mind in focus and do it," he says.
He was given about 10 years, but nobody really knows how quickly it will develop.
Jim says his early diagnosis has been a gift because he can make time for things he would otherwise have put off; his bucket list has a lot of ticks on it.
He can also work to slow the disease: he takes medication, watches his diet, works with a trainer, swims every day and does yoga to relax his brain.
"I forget that he has dementia. There are times I have to remind myself because he is doing so well," son Harvey says.
A transformative friendship
Jim, who now lives in Brisbane, has become an advocate for Dementia Australia.
He co-hosts the Hold The Moment podcast, which shares stories about people living with dementia and their loved ones.
"It was like everything in his life has led to this moment," Millie says.
Daisy, Harvey and Millie spend time with their dad at his home in Brisbane and at the family cottage in the Sunshine Coast hinterland. (Australian Story: Daniel Marsden)
This is how he met Hamish, whose father had Parkinson's and Lewy body dementia.
"Going into this, I expected I was there to look after the co-host. The reality is it's actually me that needed help," Hamish says.
"I was feeling quite angry about dementia. It was not an easy ride looking after Dad."
Hamish's father Iain lived with Parkinson's and Lewy body dementia before his death last year. (Supplied)
Jim helped Hamish realise there was still room for fun and meaningful moments with his father.
"It adjusted what I did with Dad. As often as we could, we'd go for a swim at the ocean pool so that not everything we did together was centred around dementia," Hamish says.
"It was transformative."
'The dark of night is horrible'
Jim likens dementia to having layers of dust accumulating on his brain.
He gets lost in familiar places. He gets distracted easily. He struggles to sleep and has vivid nightmares, so he's exhausted all the time.
"In the dark of night is horrible. Your mind plays tricks on you," Jim says.
The family's cottage in Maleny is called Forget-Me-Not. (Australian Story: Floss Adams)
Jim can't protect his children like he did when their mum died — and they don't want him to.
"We're saying to him all the time, 'We're adults, we have kids of our own. We can look after you,'" Millie says.
Confronting the future
The family has spoken about what will happen when Jim inevitably goes downhill.
"The hardest conversations are about what it looks like when he doesn't remember us," Daisy says.
The family has started conversations about Jim's future decline. (Australian Story: Floss Adams)
Jim has thought about euthanasia, but nothing has been decided yet.
"I don't know if it takes more strength to take control, or more strength to go where you're going to go," he says.
For now, though, he's focusing on what he loves: his husband, his children, his grandchildren, his advocacy.
"Dementia isn't all doom and gloom. I want to cram so much in," Jim says.
"I'm so full of life and full of love."
If this has prompted any questions or concerns, please call the National Dementia Helpline on 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au for live chat and email options.
Watch Australian Story's Forget Me Not, 8pm, on ABCTV and ABC iview.
Written by Monique Ross and Kirstin Murray, ABC News.
