Caring through grief – the Fear family's story

The 2019 Continence Foundation’s Carer of the Year Award recipients are Vanda and Keith Fear, from Curlewis in Victoria.

“It was like landing on Mars,” Vanda Fear says.

The unknown territory of her youngest child, Paul, acquiring a hypoxic brain injury in 2001 at age 17 was unlike anything their family had ever expected or prepared for.

“It was like landing in a new world and having to learn everything from scratch.”

In this world Vanda and her husband Keith Fear found themselves in an acute care hospital environment, struggling to come to terms with what medical professionals were telling them.

“We were told they didn’t think Paul was going to survive. And then when he did survive, they didn’t hold out any hope whatsoever,” Vanda says.

Paul’s injury resulted in multiple other health issues, meaning he is now non-verbal, dependent on a wheelchair, cannot eat orally and requires very complex care.

“We were told we were taking up an acute bed and that he had to go to a nursing home without any mainstream rehabilitation because he didn’t qualify for any, as he was so severely injured.”

Vanda and Keith were adamant that aged care wasn’t the place for a 17-year-old.

“His soul just wouldn’t have survived in that sort of environment,” Vanda says.

And so Vanda and Keith took Paul home - while still in shock and processing their grief.

Suddenly their family home in Drysdale, near Geelong, where they had lived for most of Paul’s life, was no longer suitable.

Essential equipment like a hoist and electric bed didn’t fit in his room and Paul had to be relegated to the lounge room, where Vanda and Keith started rehab and caring for him around-the-clock.

Continuous 24-hour, high care resulted in hardly any sleep for the couple but, of course, usual stressors like paying bills and working didn’t stop.

“Keith and I slept beside Paul for the first two-and-a-half years. I did the days and nights while Keith returned to work. He worked shift work, so when he had his days off he took over so that I could go back to my own bed and catch up on some sleep,” Vanda says.

“We did that with very little support, just cobbled together for the first eight years.”

For the Fears, it was slow progress to adjust their physical world to the new, post-injury planet they were living on.

Their bathroom wasn’t made accessible until 2004, and the lounge room arrangement continued for over five years, until they could build a house that accommodated Paul’s equipment. 

That was far from the only challenge. With no previous medical background, Vanda and Keith were brand new to caring and they had to try and wrap their head around all of its aspects, including peg-feeding, suctioning and continence care.

“Eighteen years down the track, we still have our times where we struggle,” Vanda says.

“No matter how tired… you know we’ve been doing it for a long, long time… we can still go in and give him a kiss. That means everything to us.”

“I’ve got lots of beautiful memories. Paul’s the centre of our family – he’s still here.”

The slow and unpredictable nature of rehabilitation after an acquired brain injury (ABI) means the Fears take every milestone as it comes, and with gratitude.

“We have been really lucky. I’ve met the most beautiful people that help us along the way,” Vanda says.

“It’s been very slow but we’re still seeing improvements now. Paul didn’t smile for two years after his injury. It was eight years until he laughed for the first time. Just this year, we’ve introduced music therapy and he’s started making sounds back for the music therapist, which is just brilliant.

“Paul has just had his best couple of years in a long, long time. Mainly due, I’m sure, to the great team of support workers, allied health team and other therapies, including massage.

“Without this support, Paul could not live at home in his community that he loves so much. We are very grateful and thankful to everyone who has helped Paul on his recovery journey.”

While bursting with praise for the team around her, Vanda is more modest about the strong support she has been for others.

She takes every opportunity to spread positivity and what she’s learnt from her own experience, by giving her phone number to other carers going through the same thing.

“If we can help any family going through a journey similar to ours, then we just do what we can, when we can,” Vanda says.

In addition to helping her local community, Vanda has made significant contributions on the national policy level.

In 2005, she gave evidence to the Inquiry on Aged Care, calling for suitable care arrangements for young people with disability so that aged care was not their only option.

Currently, there is still no suitable respite option for Paul, so Vanda and Keith wait until they can coordinate enough support workers around him to give themselves a few days to rest and visit their other children and grandchildren. They can now take regular breaks from their full-time caring roles - made possible thanks to Paul’s transition to the National Disability Insurance Scheme (NDIS) in 2013.

Vanda has never stopped her passionate advocacy and was a vital part of the Every Australian Counts campaign which successfully fought to get the NDIS over the line in Geelong.

“That was - and still is - one of the proudest days of my life,” she says.

After recognising that there wasn’t anything in Geelong to support carers of people with an acquired brain injury, Vanda undertook a training course and co-founded BRAINS Carer Support Group in 2012.

When she has a spare moment - of which there aren’t many - her creative outlet also involves spending time with other family carers.

She shares Paul’s love for music and is part of a carer’s choir - performing all kinds of music with other “non-traditional” members.

Despite being immersed in the world of caring, Vanda sees her relationship with Paul in a different lens.

“I don’t think of myself as a carer, I think of myself as a mum,” she says.

“It’s no different than if they’re sick when they’re growing up. Your parent side comes out where you still want to look after them.”

Vanda and Keith want to keep looking after Paul for as long as they can, but after 18 years things are changing. They’re both getting older, growing more tired, and the future still holds many unknowns.

“We lose sleep over trying to figure out what’s ahead in the future, so we try not to think about it too much and just try and enjoy every day that we do with Paul,” Vanda says.

“Our biggest fear for the future is what’s going to happen to Paul when we’re not here – where is he going to be? And what will that look like? Because I don’t think he’d survive in care.”

In addition to the very real, very immediate future, the dreams of what the future could have been cast a cloud over their lives.

“Our other son and daughter still struggle. They miss their brother; they miss not being able to do things that they should be doing with him now. They miss him not being able to get married and have a family of his own, like they’ve got,” Vanda says.

Family time like spending the holidays together is difficult, with an extraordinary amount of logistical effort involved in travelling up to regional Victoria where Paul’s siblings live.

While the future is uncertain for now, what’s clear is that the Fear family is full of love. Vanda and Keith’s love shines through in every interaction with their son.

“Paul is treated by his family like he has no disability. They see it as their responsibility and a privilege to be able to care for their son. They have the highest respect for their son and make every effort to ensure he is respected and treated with dignity.” – Monica (nominator)

The Continence Foundation’s Carer of the Year Award is proudly sponsored by Hartmann.