Stories & Achievements: Fleur’s Story

Fleur’s story: living in the moment

“I am a country girl. I love the space. It’s a different feeling when you’re here. It’s beautiful!”

Fleur’s father Peter adds: “She’s a country girl who loves the city! Fleur grew up in the 80’s on our dairy farm. We then had a poultry farm which we since closed. We’ve still got a few cattle.”

Fleur’s brain injury happened in 2004 when she was 25.  Our interview was assisted by Fleur’s father due to Fleur’s memory difficulties. “Sometimes she thinks it was a skiing accident but that’s not the case. Fleur was living in Mammoth Mountain in California. It was the morning after a New Year’s Eve party. She went into a diabetic coma and had a cardiac arrest that stopped her heart beating. It was a tragic incident. She’s not diabetic and the doctor’s have never been able to identify the cause. ‘Etiology unknown’ they say.”

“Of course we weren’t  there. I got a call from the hospital saying that if we don’t get there fast we may not see her again.

“We got to LA and our daughter was on a ventilator and in a coma for about ten days. When Fleur came out it she didn’t know where she was.  She couldn’t see properly and couldn’t walk properly. They treated her in intensive care for quite some time before she was moved to the Centre for Neuro Skills in Bakersfield which is basically a live in rehab unit. Sandra stayed with Fleur while she had intensive rehab for five or six months: physical therapy, speech therapy, and more.  It was very clear from early on that her memory was absolutely shot and she couldn’t form new memory.

The medical bill was astronomical so fortunately her US employer had medical insurance. We would’ve been unable to pay it. In June we were finally able to bring Fleur back to Australia”.

Fleur adds, “It was great to be back in the country but I remember pretty much nothing, unfortunately. I went back home though most of my friends lived in Sydney.”

“Fleur’s memory is good from about six to twelve months before her brain injury, with a reasonably good recall of her early years,” says Peter. “But more recent events are a blank and Fleur finds it very hard to converse on any sort of recent memories.”

“Fleur’s global intellect is not as high as it was.  She was a very smart girl when she was younger.  Physically she had problems in occipital lobes which had to do with spatial awareness and they have largely resolved, interestingly.”

Fleur had been married to an American for about a little over a year when this happened. It’s many years later and she’s now in the drawn out process of a divorce.

“Our journey with Headstart began reasonably early on. They were fantastic with Fleur and kind to her.  I don’t know what we would have done without them.”

We asked Fleur how her support workers (CSW’s) help out. “I’m not quite sure,” shares Fleur openly.  “It’s just good to have someone come and help me out.” Her father continues, “Fleur would not remember even going to school. A support worker picks her up here in the morning and they take her up to school three days a week.  Vacy School is a little country primary school of about 125 kids where the CSW’s help her carry out her duties as a volunteer teacher’s aide. Fleur does meal prep, pencil sharpening, photocopying and listening to kids read. She works predominantly in one classroom with a teacher named Maree, a delightful lady who’s putting time and effort into making sure Fleur can work using checklists and things.

Support workers are accredited with all the necessary checks and things go into the classroom to help Fleur do her job properly. They don’t just sit in the corner and we encourage them to also be active alongside Fleur.

I’ve been teaching on and off at Vacy School for 20 years.  I had retired but now I’m just doing some casual as Fleur and her daughter Abbie are back living with us so the extra income is helpful.  Vacy is a very supportive community.   I just can’t speak more highly of the way the community have taken Fleur in, helped her out, and given her some meaning and purpose in life for so many years”.

“It’s a very normal social situation amongst all the staff,” says Peter. “While she may not contribute a lot verbally, Fleur enjoys the banter in the staff room and it’s good to think she’s doing something with people who aren’t all old like her parents!

Thursday and Friday’s supports are different. CSW’s take Fleur to the gym and to yoga. They may have a bite to eat somewhere and do a few other things. So it’s a little bit of a social outing for Fleur as well.  Other times like holidays they’ll go to the movies together or go walking. That gets Fleur outside our home instead of being in our direct care all the time.  Fleur is very much a social butterfly and this dramatic change to her life has caused her many  friendships to decline over time. This way she has a different outlet as it can otherwise get claustrophobic for her just being home.”

“I like going to the gym in Maitland. I love yoga too. I feel so much better like mentally as well as physically.  It just makes me feel good,” shares Fleur.

Peter says, “Since she’s been back living with us she’s probably lost 16 kilos. She’s fit, trim, taut and terrific! Fleur’s daughter, Abbie was born in 2008 and she’s also now living with us.”

“I like being a mum,” says Fleur, “but it’s a challenge being a mum when you don’t remember many things.”

Peter adds, “They’re very close to each other in a fractured sort of way. They cuddle every day but also fight a bit so it’s an interesting little dynamic.”

We asked Fleur about her goals. “That’s an interesting question,” she responds. “Basically I wish this brain injury would just fix but that’s not going to happen, unfortunately.  I want to just keep doing what I’m doing.”

Peter says, “We are working with NDIS to get some part-time independent living because we want Fleur to spend time with younger people.  That’s unlikely until Abbie’s finished high school in four years.

Fleur’s condition is one where she comes across perfectly normal at face value. But when she engages in a conversation and tries to bring something it becomes clear what a debilitating condition it is.

You can’t leave her anywhere or have her do anything by herself, especially in public. So the responsibility on the carer is very significant to make sure she’s fully looked after.  She’s got little stock standard answers for things. People ask her what she’s going and she often responds with “Oh, just the usual.” This is because she’s got no recollection of what she has done.”

“She went away on a little inclusive holiday retreat for a few days and a minute after stepping off the bus she had no idea she’d been away. Her memory is very much in in the present tense so it’s very, very difficult to manage. If you showed her a photo she could tell you what’s happening in the photo but it wouldn’t be saved in her memory. Very much like a computer if you forget to press the save button nothing gets locked in.”