Karen runs a busy hair salon in Sydney’s western suburbs by day and at night cares for her sister.
Karen runs a busy hair salon in Sydney’s western suburbs by day and at night cares for her younger sister, who has an acquired brain injury.
One day her sister was a bright, high achieving 27-year-old university student. The next day she had suffered a traumatic brain injury caused by falling off a balcony at a birthday party.
“It was that sudden,” Karen said. “She fell and banged her head on a concrete step and had a bleed on the brain. It caused significant brain damage.
“When my sister was released from hospital she was a completely different person. She was someone I just didn’t know anymore and couldn’t easily relate to.
“She went to live with mum, who was retired. Mum was more than happy to care for her and make sure she did her physio and speech exercises and that sort of thing.
“Initially, I had very little responsibility for what happened to my sister. I helped mum here and there – not doing much really. I would go over and visit once a week and maybe bring a cake, or a meal I had cooked. Sometimes I stayed with my sister so mum could go out and visit friends, or I would bring her over to my house for a visit.
“It was awkward as we were never really that close because of the age difference. I sort-of kept my distance and I didn’t want to get too involved in her life with mum, or the management of her condition.
“Plus, I was pretty busy running my hairdressing business and looking after my own family. I didn’t have much time to spare anyway.”
Unexpectedly, Karen’s mother was diagnosed with lung cancer, just six months after her sister’s accident. The cancer had already metastasised.
“The prognosis was not good – we were told we would have a few good months. But mum never left hospital as the cancer just seemed to rapidly escalate. She died within four weeks of being admitted. It was just devastating for my sister and there seemed to be no option other than for me to take on her care.”
Karen’s journey as a carer has been challenging. At 43, with two grown children and two grandchildren herself, she was at the point in her life where she could enjoy her independence and freedom.
Her salon was busy and popular and she had good staff who could run the business if she wanted to take a short break or have a holiday.
But becoming a carer for her sister has meant that all her free time is now taken up with running around managing her sister’s medical, physical, social and emotional care needs.
“I take her to the physio once a week, to the speech pathologist once a month and to the occupational therapist once a fortnight. I take her to the doctor a lot, as she suffers from anxiety, depression and aggressive behaviour. When I can make her take it, she is on medication to help moderate her mood and behaviour.
“She is losing weight and the doctor is worried that she is becoming malnourished. I am not a fancy cook – I do the basics – but mum was a great cook and my sister really misses all the special treats mum used to make for her. She doesn’t like my food and will often just spit it out or throw it in the bin.
“She has nightmares and doesn’t sleep much at night, so this affects my sleep as well, because she comes into my room upset and it can take a long time to settle her.
“She forgets absolutely everything – what she is supposed to be doing that day, where something is, where she lives, who her family is, even her name. She argues and yells at the drop of a hat and is not capable of contributing much to the running of the household. It is very frustrating for us both.
“She was at Uni at the time of the accident but there is no way she can work or study now. Initially her Uni friends came over a bit, but that has dropped right off now as she can barely communicate with them.
“I did have access to some support services in the beginning, but stopped these because having people in the house really distressed my sister and she refuses to go outdoors without me being there anyway.
“All of this impacts on my business as it takes my focus away from what I need to be doing to get ahead.
“I don’t have the time at work to train new staff properly, or do training even for myself, and I am often stressed, because I am racing to get something done for a client so I can race out for a medical appointment with my sister. My customer service is not what it used to be and I am slowly losing long-term clients, which has a financial cost.
“So yeh, I am a carer, for my sister, and for my kids, and for my grandkids… and I am a small business owner trying to make ends meet…and it is damn hard.”