logo
Jim Rogers on love, loss and living well with younger-onset dementia

Jim Rogers on love, loss and living well with younger-onset dementia

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.
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.
Lorna died in January 1999.
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."
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.
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.
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.
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."
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.
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."
Watch Australian Story's Forget Me Not, 8pm, on ABCTV and ABC iview.
Orange background

Try Our AI Features

Explore what Daily8 AI can do for you:

Comments

No comments yet...

Related Articles

Spike in ADHD medication adverse event reports
Spike in ADHD medication adverse event reports

News.com.au

time4 hours ago

  • News.com.au

Spike in ADHD medication adverse event reports

Authorities are investigating a spike in incidents involving one of Australia's most widely used ADHD medications. Adverse event reports linked to medication Vyvanse have spiked massively this year, and the manufacturer says no changes in the chemical production have been made. 'The Therapeutic Goods Administration (TGA) is currently investigating a potential safety signal associated with Vyvanse, including independent testing of the medicine through the TGA Laboratories,' a spokesperson told NewsWire. 'The investigation is the result of a recent increase in adverse event notifications relating to concerns about the quality, safety, and reduced effectiveness of the drug.' 'There are no compliance signals currently under investigation for the facilities used in the manufacture of this product.' A 'signal' is detection of a pattern which requires further investigation. While not formally a pattern in the TGA's eyes, reports of adverse events such as anxiety, ineffectiveness and insomnia have increased massively this year. There have also been 88 reports of issues with the medicines label, which was flagged by the TGA earlier this year for minor typos; however, one of the typos added an extra 'S' to the word capsule; 'Each capsules contains 60mg lisdexamfetamine dimesilate'. The TGA maintains the Database of Adverse Event Notifications, where people report issues with medications. There have been 320 adverse events linked to Vyvanse in the first half of this year, compared to nine reports in the second half of 2024. Inclusion in the database does not confirm the incident is caused by the medication. Reports of ineffective Vyvanse have hit 150 so far this year, along with 88 reports of anxiety, and 73 reports that the therapeutic response has decreased. Prescriptions of Vyvanse have been steadily increasing for the past few years. More than 958,000 scripts were written by public system health workers in 2022, rising to 1.4 million in 2023, and then 1.8m last year, government data shows. In a statement, supplier Takeda Pharmaceuticals Australia said a change of manufacturing facility in 2024 did not alter the chemical composition of the medicine. 'There have been no changes to the formulation,' a Takeda spokesperson told the ABC. Vyvanse was produced with strict quality controls, in line with Australia's Therapeutics Goods Act, the spokesperson said. The labelling typo did not affect the quality of the medication, they said.

Measles alert issued across NT airports, tourism hotspots
Measles alert issued across NT airports, tourism hotspots

News.com.au

time5 hours ago

  • News.com.au

Measles alert issued across NT airports, tourism hotspots

Northern Territory health authorities have issued a measles alert after a man travelled through multiple tourism hotspots before ending up in hospital in north Queensland. NT Health issued the alert on Saturday morning, warning anyone who was on tourism trips in the state, at restaurant in Kakadu National Park, or travelled through Darwin or Alice Springs Airports on specific dates in July to be alert for measles symptoms. These include a fever, sore eyes, a runny nose, a cough, and a blotchy red rash. 'Check your vaccination status,' an NT Health spokesperson said. 'Measles is highly contagious but preventable with two doses of a measles-containing vaccine.' Health authorities suspect the man who travelled while infectious acquired measles in Indonesia. 'The NT Centre for Disease Control is urging Territorians to be alert following confirmation of a measles case who travelled through Darwin and Alice Springs while infectious,' the alert reads. 'The individual, likely infected overseas, visited multiple public locations in the NT between July 17 and 23.' NT Health says the man was likely infectious when he went on an all-day tour with Ethical Adventures in Litchfield National Park on July 17. The next day, he left for an overnight tour with AAPT Kings Jabiru, and was at the Mercure Kakadu Crocodile Hotel in Jabiru from 6pm to 8pm on July 18. The measles alert does not account for his movements the next two days, but the next listed location is the Museum and Art Gallery of the Northern Territory, from 1pm to 3pm on July 20. It is believed the man then went to Darwin Airport at 3.30pm and flew to Alice Springs on Qantas flight QF1960, arriving at 7pm. On Wednesday, July 23, the man flew from Alice Springs to Cairns on Air North flight TL361. 'Anyone who attended these locations during these times should monitor for symptoms … Symptoms can take up to 18 days after exposure to develop,' the alert said. 'The vaccine is safe and effective, and available from your GP, local health centre, Aboriginal health clinic, and vaccinating pharmacies.'

Queensland's homeschooling parents pleased with outcome from review
Queensland's homeschooling parents pleased with outcome from review

SBS Australia

time12 hours ago

  • SBS Australia

Queensland's homeschooling parents pleased with outcome from review

A win for homeschooling parents in Queensland, fighting to make the system more accessible for families. The Queensland government has accepted all 8 recommendations of an independent review into the Home Education Unit. The regulatory review, which published its report in September 2024, was prompted by widespread opposition to the previous state government's attempts to enforce legislation that would impose the Australian curriculum on homeschooling students. That move was firmly rejected by parents like Danika, who homeschools her neurodiverse 8-year-old son Ben. Danika says she's most excited about a recommendation to trial a shorter style of written reporting, alongside an online interview. She says this would offer a promising alternative for Queensland parents, after a positive experience with a moderator while homeschooling in Western Australia. "Whereas in Queensland, you feel it's just cross your fingers and hope that you can continue to do, and there's a lot of uncertainty around the processes over here, and it is quite daunting to submit a report every 12 months with no real guidance, no real reassurance that you are doing what they require. Having a person to report to would be humanising to the procedure, so that would be quite nice to have someone, a face, face to the documents would be nice. So yeah, I think that it is very exciting to have that process possibly come into play for us and just alleviate that kind of stressor." Sunshine-based parents Danika and her husband Joel, made the shift to homeschooling in 2022 after Ben's classroom anxiety reached a tipping point. Danika is among thousands of Queensland parents who moved to homeschool their children after 2020, with the Queensland government saying there was a 230% increase in home education over the past 5 years. It brings the current number of homeschooling students in Queensland to more than 11,000. Brisbane-based Patricia Fitzgerald is campaign manager of the Free2Homeschool movement, which gathered more than 21,000 signatures opposing the former Queensland government's attempts to enforce the Australian curriculum on homeschoolers. She says the government's decision to accept all of the report's recommendations is a great move forward for the community. 'I just think that with the reviews, the recommendations that have been proposed, it's going to be a really good opportunity for the HEU to connect with the community and build that connection and more support rather than just having the regulatory side. Having that educational leader there to bridge that gap and to build that supportive side as well is going to help a lot of the families who are trying to find that information and trying to find the community." Ms Fitzgerald pointing to the first of the recommendations - to transform the Home Education Unit, which will be renamed Queensland Home Education, to ensure greater practical support and regulatory oversight. There are hopes the appointment of education leader Dr Renae Acton will improve processes for families, alongside enhancing resources, such as program templates and exemplar annual reports. Queensland's Education Minister John-Paul Langbroek told SBS he supports a parent's right to choose the best type of education for their family. "We as a government support choice, I've done distance education myself or correspondence as we called it, partly because I lived in another country in Papua New Guinea. And the important thing is that if parents choose to do it, we want to make sure we support them just as we support them in the other frames of schooling that they might choose, whether it's state or non-state schooling." Minister Langbroek couldn't outline a date for when the recommendations would be legislated, saying his government prioritises consultation. This comes as legislation to raise the age cut-off from 17 to 18 for homeschooling students is still under review, after it was tabled in March. But Mr Langbroek says some of the recommendations from the regulatory review are already being enacted - including changing the name of the unit to Queensland Home Education, as well as extending the stakeholder consultation via the Home Education Expert group, by another six months. "We used to criticise the former government for consulting but already having made a decision about something. So this is genuine consultation with the group, so we want to keep the momentum going about the positive work we've been able to do with parents and stakeholders, and then continue parent engagement before we try to make any legislative change." One of the key aspects of the recommendations is to enhance resources and supportive tools for parents meeting regulatory requirements. Danika welcomes access to learning programs and reporting scaffolds, which are particularly helpful in teaching a neurodiverse child with individualised learning. "The learning plan that I have for Ben being neurodiverse, we very much follow his interests at the time. And having an online reporting scaffolding will really help me just report as we learn because we do have a plan in place, but obviously following just natural interests and natural ways of learning, it does change as we go. So having a formalised reporting structure will help us just keep tabs on where we're at and what we're learning and how we're learning it." But she would like to see state and local governments offer greater support for homeschooling co-ops, which allow groups of homeschooling families to collaborate and provide educational and social opportunities for their children. "We really need the support from local government backed by, sorry local councils backed by government, to ensure that we are setting up safe spaces for our children. All the boxes are being ticked to keep it a safe environment for our children and that they can continue to build regular foundational relationships within those groups instead of being shut down every couple of months because local councils are getting one complaint from someone who doesn't agree with the way that we are teaching our children. So I think that's another way that the government could help us all support us on our journey." The Queensland Family and Child Commission released a separate report in December 2024, in response to concerns raised by the Child Death Review Board in their 2022-2023 report. It "affirmed a parent's right to choose the most suitable learning environment for their child", but called for improved information-sharing between state government departments to ensure child safety. Minister Langbroek told SBS that his government are considering the work of the Queensland Family and Child Commission, acknowledging past obstacles around information sharing. "And Premier Crisafulli has been very clear that he wants me as education minister working closely with the Child Safety Minister Amanda Camm, the Attorney General Deb Frecklington, and

DOWNLOAD THE APP

Get Started Now: Download the App

Ready to dive into a world of global content with local flavor? Download Daily8 app today from your preferred app store and start exploring.
app-storeplay-store