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Tuesday, August 9, 2022

Inside Everybody’s Oma – the doco on family, hope, love and learning while living with dementia

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Through the ups, the downs, and the most endearing of moments, Hendrika Van Genderen became “Everybody’s Oma.”

Accumulating more than 140,000 followers, the Oma’s Applesauce Facebook page has shared Oma’s journey with dementia through a series of short video clips taken by her filmmaker son, Jason Van Genderen.

Oma sadly passed away in February, but her legacy will live on as the short clips that have inspired millions online have been stitched together into a powerful, feature length film: Everybody’s Oma.

Having launched at the Sydney Film Festival on June 11, Van Genderen tells Aged Care News that it was amazing to finally share his family’s story live, on the big screen.

“It was incredible, just to feel everyone’s energy and their connection to the story,” he says.

“It’s funny, because a lot of people that come across our story thought that we’d almost engineered this to be a feature film from the get go, but we hadn’t.”

In fact, the Van Genderen family’s online fame came as an unexpected consequence of sharing home videos made during the lockdown period as Van Genderen, alongside wife Megan and kids Arty and Evie, cared for Oma full-time in their NSW Central Coast home.

With work wound back as the pandemic persisted and the kids home schooling under Megan’s supervision, Van Genderen decided to let his camera roll at home and document the unprecedented time in his family’s lives.

“It was just that whole perfect, messy storm that every family was going through and trying to work out the new way of making every week count,” he says.

We decided to use lockdown as a learning opportunity: how can we use dementia as a bit of a teacher for us as a family? What can we learn about each other? And what can we learn to navigate this in a better way?

Jason Van Genderen

“I wanted to still keep storytelling from home and we wanted to still do good for Oma and find little ways that we could create new meaning for her.

“We decided to use lockdown as a learning opportunity: how can we use dementia as a bit of a teacher for us as a family? What can we learn about each other? And what can we learn to navigate this in a better way?”

As Oma’s cognition declined, the Van Genderen family’s creativity sparked, developing in-home solutions to keep life as normal and engaging as possible.

A heart-warming idea that resonated worldwide was bringing the supermarket home to Oma, with Megan, Arty and Evie manning a makeshift shopfront stocked with a variety of grocery essentials so that Oma could maintain her routine whilst staying safe from COVID.

“[Those videos] were initially for our family and friends that we were connected with on our Facebook page … and then we woke up one morning and found that it all been shared so many times by other people, and then all of a sudden news networks have picked up on it.

With home isolation cancelling her weekly shopping routine, Oma’s family came up with a new way to take her to the shops. The full video is available to view via this link.

As the family’s bite-sized bits of inspiration rocketed past 100 million views, they understood their story had resonated.

“We thought that there was an opportunity to use our story for good, that maybe there was a good level of interest for a deeper, more meaningful story than what we were providing with the three or five minute bites that you might see on Facebook.”

And it wasn’t difficult to rally a production team around the project.

“We got a fantastic producer on board and then … people just started being drawn to the project that had a connection to it.

… we all felt that there was a really important reason to help make our very personal story quite universal, but still do it in a delicate and loving kind of way.

Jason Van Genderen

“Either they had a history of dementia in their family, or just cared for someone who was unwell,” Van Genderen recalls.

“And I think that really connected the core people in our team together; we all felt that there was a really important reason to help make our very personal story quite universal, but still do it in a delicate and loving kind of way.”

The public agreed, with the online community contributing the funds needed to get the film project off the ground.

“We had not only the Oma’s Applesauce community on Facebook step forward and really support us emotionally through that journey; they also voted with their wallets,” Van Genderen says.

“We had 700 odd people crowdfund the initial $68,000 to get the film started, then Screen Australia and Screen New South Wales jumped on board and funded us as well.

“So it all just felt like the planets were aligning and that the opportunity was something we really needed to embrace.”

Film a candid account of caring

While the highlights of the Oma’s Applesauce page are overwhelmingly bright, positive moments of connection in the Van Genderen family’s lives, Everybody’s Oma also acknowledges the moments of pain and frustration that befall both a person living with dementia and their carer.

“We owed it to everybody else that’s on a similar but different journey to make sure that they felt seen and heard and represented,” Van Genderen says.

“The ‘happy-clappy’ stuff was great, but also showing the difficult stuff vindicated the fact that that they felt their presence represented in the story and that they felt human.

“You are going to feel frustrated, you are going to feel sad, and you are going to feel lacking in some skillset at some point.

We owed it to everybody else that’s on a similar but different journey to make sure that they felt seen and heard and represented. The ‘happy-clappy’ stuff was great, but also showing the difficult stuff vindicated the fact that that they felt their presence represented in the story and that they felt human.

Filmmaker, Jason Van Genderen

“But you’re also going to feel incredible joys and incredible elation, and a wonderful sense of connection with someone that you are helping.

“And it’s keeping yourself open to the fact that you’re going to feel all those human emotions as part of the experience: that is both the curse and the gift of being a carer.”

Jason Van Genderen, in capturing Oma (pictured) and her journey with dementia, chose to document as many difficult moments as he did positive, to provide families impacted by dementia a true, candid resource.

Guilt, he says, can easily creep into the psyche of a carer, with his message to the 2.65 million Australians who are caring for an elder being: go gently on yourself.

“No matter how much time you have to care, how dedicated you are in your care, how much presence you feel you have, you will always find carers guilt knocking on your shoulder,” Van Genderen says.

Something we learned very early on was to be gentle on ourselves; we have to remember we’re only human.

Jason Van Genderen

“You never feel that you can do a good enough job because it’s a difficult job, and because you always want to do more.

“Something we learned very early on was to be gentle on ourselves; we have to remember we’re only human.”

Film clips a valuable asset in their own right

There is an emerging body of evidence in Australia, signalling that home-made films can be a therapeutic tool for persons living with dementia and their families.

How beautiful it was to have a memorable moment together, as a family, film it, and then if [Oma] forget it the next day, we could play it back to her

Jason Van Genderen

And while education and advocacy became the powerful by-product of Oma’s documented journey, Van Genderen says that the film clips were a great source of joy and comfort for Oma.

“How beautiful it was to have a memorable moment together, as a family, film it, and then if [Oma] forget it the next day, we could play it back to her,” he says.

“As the disease progresses, sometimes there is no conversation.

“So just being able to sit down and enjoy a cup of coffee and replay something that we did together as a family, you’d see that moment light up in her eyes.

“You’d see the recognition and you’d see her enjoying that all over again.

“To have that whole library of moments captured on video was a complete blessing.”

Jason Van Genderen, pictured with Oma, says captured moments were a priceless asset, both to replay to Oma as her memory declined, as well as keepsakes for the family to cherish now that she has passed away.

Van Genderen strongly encourages all families to capture precious moments with their loved ones, so that their legacy is tangible and accessible beyond their passing.

“One day, you’ll long to hear their voice and you want to hear them say something the way they used to say it.

“Where possible, recorded little bits of video of you enjoying times together because sometime in the future that stuff’s going to take on a whole new presence.”

Intergenerational connections an asset

Jason and Megan were amazed by the extent to which their own young children taught them simple yet effective ways to connect, even once Oma’s dementia had significantly advanced.

“We as adults, get really upset when we can’t have a conversation with someone, whereas a kid will sit with someone like Oma and just be happy to look at each other and smile with their eyes and enjoy a meal, tap each other on the hand and listen to music.

It was beautiful to actually have our kids teach us that and show us how important it is to be present as a family and to be present as individuals in every day.

Jason Van Genderen

“As adults, we’re very, very good at complicating things … whereas when you approach something through the eyes of a child, it’s very much the same as the way Oma was approaching things with dementia.

“It was beautiful to actually have our kids teach us that and show us how important it is to be present as a family and to be present as individuals in every day.”

Film launch signals Oma’s ongoing legacy

While Oma’s passing marks a poignant end to a chapter of their journey, this is not the end of the Van Genderen family’s advocacy journey.

“It’s really nice just to take the foot off the pedal for a little while and let the story get out there … but we want to really advocate for better visibility of families and carers in our position want to do whatever we can do to help build those conversations and create meaningful change where it’s going to be most helpful,” Van Genderen says.

“It’s why we’ve called it ‘Everybody’s Oma’, because our lived experiences are representative of millions of other people’s.”

With the film rolling out nationally on August 11, Van Genderen says he is keen to continue constructive conversations with viewers, extending the community his family has created throughout Oma’s publicly documented journey.

“Megan and I are both super big on trying to do as many Q&A’s as we can, because honouring and recognising other people’s journeys, what brought them to the cinema to see this film is what we want to do and it’s going to be a beautiful pleasure for us to do once we open up nationally.

“There were so many beautiful remarks that came out of both screenings [at the Sydney Film Festival]: people wanting to share their story, people feeling like they finally had an opportunity to actually share something beautiful or share something difficult in conversation.

“For us, it’s a great pleasure now to go out there and become part of the audience and to learn alongside them.

“That’s just a wonderful honour for us to be able to do.”

  • Everybody’s Oma is a 90-minute documentary following the life of the Van Genderen family as they care for their mother and grandmother, known affectionately as ‘Oma’, the Dutch word for grandmother.
  • The film will be rolled out in cinemas across Australia on August 11, with specific times and locations to be announced.
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