What happened after a grandma with dementia went viral: ‘I get the trolling – I didn’t enjoy it’

Hendrika van Genderen first came to the internet’s attention during the early days of the pandemic, after videos of her shopping at a pretend Coles went viral. Her son Jason and his wife, Megan, along with their four children, built the cardboard supermarket so that their mother and grandmother – who they all called Oma – could do her regular food shop at home. Having been diagnosed with Alzheimer’s and vascular dementia, it was crucial that her routine was not disrupted.

Oma’s shopping trip was featured on The Late Late Show with James Corden and Good Morning America, and received more than 100m views worldwide. Oma’s various social media pages (run by Jason) received hundreds of thousands of new followers, all eager to hear her story and follow her progress. But it wouldn’t always be a heartwarming ride.

Jason van Genderen, a film-maker on New South Wales’s Central Coast, didn’t realise when he started filming his mother’s life that the resulting footage would be so exposing and heartwrenching. Initially, he says, “it was a way of capturing moments that we could share with Oma, so she could remember things”.

But the footage morphed from being a memory aid to a documentation of his mother’s increasing struggle and the toll it took on his family life. In his new documentary, Everybody’s Oma, we see Jason and Megan fight over whether Oma should keep her cat, Oma becoming increasingly frail and having falls, and the 24/7 reality of being a carer.

“What we were wanting to achieve with this film was not always pretty. But what we wanted was for the audience to feel that they were living in our house. We were diarising the evolution of family at that time,” says Jason. “We didn’t know what was going to happen to Oma and what was going to happen with our marriage.”

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Oma moved in with Jason and his family in 2017, nine years after her husband died of cancer. Living independently in the family home, she began falling over and forgetting appointments. “Dementia starts very subtly. We realised she was very isolated,” says Jason. “She couldn’t drive. Her reliance on others was increasing. We thought, ‘It can’t hurt to have her with us’ – and she was really keen. We underestimated how lonely she had been.”

The family moved out of their rental and found a place to buy with a granny flat out the back. At first “it was fun,” Jason says. “Oma was independent enough to be on her own during the day. She made her own meals and joined us several times a week to eat. It felt like a nirvana at the start, living in a multi-generational household.”

In the beginning, both Megan and Jason could still leave the house and go to work, but in 2020, Megan says, “Routine went out the window. We couldn’t use carers. Her independence decreased, and as we were at home all the time, she relied on us more.”

Gradually Oma’s care became overwhelming. Jason closed down his production company so he could assist Megan and care for his mother full-time. The pair were sandwiched between generations, with a toddler and three older children who also needed them.

“Oma became our central priority in the home – we couldn’t leave the home. We knew one of us leaving the house would cause her such anxiety,” Jason says. He still can’t get the picture out of his mind of Oma at the window, looking distressed as his car pulled out of the driveway.

Over the years, all these small moments of joy, caring, distress and stress were being filmed, with editor Gavin Banks sifting through more than 300 hours of iPhone footage to make a feature-length film. Footage was shot by Jason, Megan, their son Levi and later Banks, who moved into the family home to capture footage when Oma’s need for round-the-clock care was becoming acute.

As Jason uploaded clips of Oma to her social media channel, Oma’s Apple Sauce, the mood also shifted. Having become an internet sensation following her home shopping clip, when Jason posted clips showing the family’s struggles, the backlash was intense. Jason was berated online for how he spoke to his mother, accused of neglecting her and not feeding her properly.

“I get the trolling – I didn’t enjoy it, but I get that people are passionate,” he says.

Oma had returned from a hospital trip, which had had a discombobulating effect on her. “We documented it and shared it to say ‘this is how difficult it is when her routine is disrupted’. But people who only saw that video and not the whole story got upset.”

Related: Patricia’s Room: a loving tribute defying the invisibility of living with dementia

Megan was less engaged with the commenters, “My lens with social media is that we had a real opportunity to do some good because our story resonated,” she says. “I got very overwhelmed by the amount of people interested in us. ‘You guys are amazing’ – neither of us need to hear that. When we were trolled, it didn’t really affect me because I knew we were looking after Oma with love and care.”

Oma died in February 2022, at the age of 89.

While the intimacy of Everybody’s Oma is one of its greatest strengths, it also raises questions about consent. As Oma was losing her cognitive abilities, was she truly able to consent to being filmed?

“At all times I would be making her aware of the filming, and where we would share it – and always making her aware that storytelling was happening,” Jason says. “She always loved the films I made. And she was always abundantly happy to be filmed. She really enjoyed it. There was a lot of touching base. Consent became increasingly important for us as she declined.”

Jason and Megan developed three criteria they’d use to judge whether they should film something: “Was it made with love? Was it educational? And what would my mum think of that when she was fully cognisant?”

Hypothetically, if he had dementia how would he feel if his children decided to make a film of his final years? Jason pauses for a moment.

“I guess I would be comfortable to be the subject. If my kids wanted to turn it around on me, I would be OK with that,” he says.

• Everybody’s Oma is being screened in select cinemas around Australia from Thursday. It will be available globally from 21 September to mark World Alzheimer’s day; to register, click here.