Meet Sarah: a friend, a sister and a carer
Having cared for her father during his long battle with cancer, and then for her mother, who struggled with dementia for ten years, Sarah was no stranger to being a carer.
What Sarah didn’t anticipate was becoming a carer yet again – this time for her much-loved sister Susan, who was diagnosed with Primary Progressive Aphasia (PPA). PPA is today more commonly known as the Bruce Willis disease and is a progressive neurological disorder impacting a person’s ability to understand language, communicate and ultimately manage daily living skills.
Before caring
Sarah and Susan grew up west of Walgett on a sheep and cattle farm, and for many years did everything together. They did correspondence school together, went to boarding school together, travelled the world together, and bought property in Sydney together.
While Sarah held down high-level roles in corporate banking, politics, and government, Susan, who had trained as an interior designer, ran a successful interior design business before heading back to the regions to focus on her work as an artist.
In 2018, in search of a quieter, more balanced life, Sarah picked up sticks and joined her sister Susan in Wagga Wagga.
The caring journey
Sarah loved being back in the regions, especially as being there meant she could spend more time with her sister, but it wasn’t long before she began to realise that something wasn’t quite right.
And that is where her caring journey began anew.
“It took us about three years to get a proper diagnosis. Now Susan’s lost her ability to communicate. And it’s tough, it’s really tough. We’ve been pals all our lives – such good friends. We did so much together.
“Primary Progressive Aphasia means she has lost her ability to communicate and has a general loss of cognition. I have lost my best friend and am devastated by this loss. It is a very, very long goodbye.”
Sarah shares the caring responsibilities with Susan’s partner, taking over each morning after he’s given her breakfast, and staying with her until he returns from work at the end of each day.
Recently, after a long time waiting, Susan was allocated a Level 4 Home Care Package.
“I’d been trying to get some support for my sister for some time, and I’d have to say it’s a bit of a minefield. I think it’s a failing of the Government that they haven’t streamlined this and made it easier for older people to manage, because not all older people have someone who can do it for them.”
Susan’s prognosis is uncertain, but ultimately, her condition will be fatal. Sarah takes things one day at a time, cherishing the time she spends with her sister.
“I love the fact that she’s taken this on the chin and been so brave. She’s still smiling…she’ still in there, even though she can’t communicate. Her personality shines through – she’s kind, she’s such a loving person, and loves being with people.
Carer Gateway
Sarah has found that talking to Carer Gateway has been incredibly helpful.
“Just being pointed in the right direction and getting some help navigating the often-complex systems of care.
“I’ve also done some counselling through Carer Gateway – and I found it very useful.
“The person I’ve been working with at Carer Gateway has been fantastic – she really couldn’t have been nicer. I would absolutely recommend Carer Gateway to other carers.”
Top Tip – If there was one piece of advice you could give to other carers, what would it be?
“Maintain your own physical health. Maintain your own mental health. And give yourself a break.
“I was so depressed and miserable about the whole thing – it was all becoming too much…and then I came up for air. I saw my GP, who told me to take time out and look after myself. She put me on to Carer Gateway, and I’m doing a whole lot better now.”
