LIFE

What Happens When You Suddenly Become An Everyday Carer

From tragedy to a new normal.

18/10/2016 12:08 PM AEDT | Updated 19/10/2016 9:51 AM AEDT
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Emily James, pictured with her mother, became quadriplegic following a snowboarding accident.

In February 2012, Rachel James, a nurse and mother of three, was at her Sydney home surrounded by boxes. With two children pursuing work and travel overseas, she was packing to relocate to Singapore with her husband.

"Everyone was incredibly independent. All of our children were grown up, in relationships and on their own paths," Rachel told the Huffington Post Australia.

Then came a phone call. Her daughter Emily, 22, had suffered a spinal cord injury while snowboarding in America that rendered her quadriplegic.

Emily doesn't want me as a carer; she wants me as a mum. She expects me to be myself and have my own life because that's the mum she knows.

"I hadn't seen Emily for about 14 months. All of a sudden, that call drew me right back. It threw us all into disarray," Rachel said.

"That was the first point of impact. When the doctor phoned me, there was a great deal of calmness. Emily and I are not the first, and unfortunately, won't be the last to experience this kind of trauma."

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Emily James was overseas on a two-year working visa when tragedy struck.

Every day, an Australian is paralysed by a spinal cord injury. The numbers currently sit at 15,000 across the country.

In 2012, Rachel unexpectedly joined approximately 2.8 million other unpaid carers who are working tirelessly in Australia.

This National Carer's Week, she has released an e-book, 'Suddenly an Everyday Carer', that recounts the stages of her journey -- from tragedy to a new normal -- and provides honest advice to those who will follow.

Early trauma

Following the accident, Rachel travelled to Vermont to repatriate her daughter to Australia, where she was transferred to Royal North Shore Hospital. Ten months of intensive rehabilitation followed.

"You go through a wave of emotions. At that initial point, there was nothing that a mother or family could do," Rachel said.

"Then you go through this intense, anxious and stressful episode of rehabilitation. It was a long time before I was even able to handle Emily myself."

Caring in the home

With 30 years of nursing experience, Rachel was ideally prepared for her role as an informal carer.

I was doing all the work myself. But on the tenth day, when a care worker stepped in the door, I collapsed.

"I knew how things worked. For the first ten days at home, I was doing all the work myself. But on the tenth day, when a care worked stepped in the door, I collapsed. I was utterly exhausted," Rachel said.

Rachel's book devotes chapters to tackling the various changes that come with this newfound role, as she, too, learnt to 'facilitate' her daughter's recovery towards independence, health and well-being.

"It's an enormous learning curve -- even getting used to people coming in and out of the house everyday. My message to people is it's tough," Rachel said.

"You soon realise that you have to have everything at hand -- otherwise you'll be running around the entire time. But there are the simplest things that can make your life easier. That's why this e-book is helpful and accessible."

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An honest account after an instant life change.

Caring for carers

Caring for others can come at a cost -- a consequence that Rachel deals with in her book.

"I think guilt as a carer can lead you to feeling compromised -- you start to feel guilty when you consider going out cycling with friends, or nipping up to the shops for a coffee," Rachel said.

I know that I am a better carer because I cycle with my friends, because I come to Emily with news that is fresh and exciting.

According to a recent study conducted by Carer's Australia, in conjunction with Amcal, many of our carers are putting their own health at risk due to the physical, financial and mental strains of their role.

Almost two thirds of survey participants were unsatisfied with their personal health, with many -- particularly those aged 18-24 -- reporting significant financial pressure. Fifteen percent said they felt socially isolated due to being time-poor.

For Rachel, maintaining her own well-being is imperative.

"I know that I am a better carer because I cycle with my friends, because I come to Emily with news that is fresh and exciting, and because I am not resentful when I am with her.

"Emily doesn't want me as a carer; she wants me as a mum. She expects me to be myself and have my own life because that's the mum she knows."

Rachel recommends considering caring needs as those that are done in passing.

"We don't dramatise our caring needs. I just say to Emily, 'if you wan't to do something, we'll just find you a way to do it'."

"She is an incredibly capable young lady -- she just can't walk. And that's the way I see it."

We are not unhappy people. Of course Emily would prefer to be walking, but she has a very full and exciting life now.

But there have been moments that have tested her.

"I remember when Emily was a volunteer at Taronga Zoo, six months after her accident. I watched her being loaded into the taxi...you just never as a mother envision watching your child being strapped into the loading bay of a large, wheelchair-accessible taxi.

"You have to take deep breaths at that stage, and think about the fact that she was working and doing so well."

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Life after trauma

Four years post-accident, life for Rachel and Emily has returned to a new normal.

Whilst Rachel maintains her role as an informal carer, she has returned to work. Emily is continuing her studies, with plans to work with trauma and rehabilitation patients as a clinical psychologist.

"We now lead divergent lives," Rachel said.

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When navigating your new normal, a support network is key.

"The time I talk about in the book is the time when we were incredibly united on this path towards recovery, health and well-being. When you get there, you find that you can drift off quite organically into your own lives again," Rachel said.

"I'm sitting here now and realising that the person who wrote this book is not me. That is me four years ago and I am a different person now. You do move through this and you do come out the other side.

"We are not unhappy people. Of course Emily would prefer to be walking, but she has a very full and exciting life now. We have really had fun and we wouldn't have seen that in the beginning.

"That's the message I want to send to people through this book: you will pull through."

'Suddenly an Everyday Carer' is available now on Amazon. All proceeds are going to Spinal Cure Australia, an organisation committed to funding research to end paralysis.

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