National Carers Week – Reflections of a Carer

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National Carers Week (October 15-21) was an opportunity for the community to recognise the 2.7 million unpaid carers in Australia who support a family member or friend who has disability, chronic illness, mental illness or frailty due to age. It is estimated that carers provide more than $1 billion worth of unpaid care per week. To put this into further perspective 36 million hours of unpaid care are provided per week across the nation.

Our team member Mary Gurgone, took the time to reflect on the significance of National Carers Week in paying recognition to our ‘silent workforce’, her journey as a primary carer for her mother, Elena, and how we as a society, can provide better support to carers across the country.

“During Carer’s Week, I felt more deeply the huge chasm in my life. After 26 years of being a carer, my mother recently passed away. She was an incredibly strong woman who lived a hard life both through the depression, war and fascism that robbed her of food, her husband, her baby. She overcame all that and more as she single-handedly ran the farm, raised her children and bravely came to the land that promised her children a good future, Australia. Here she worked as a kitchen hand, starting at 7am and finishing at 6pm, six days a week so her children could achieve their career goals and their life dreams.”

“So when she needed care, I did not hesitate. For the first 13 years she lived in a granny flat attached to my home. I was there to smooth the way by overcoming language barriers, mobility issues, emotional stress and all the daily demands of banking, paying bills, shopping, cleaning and providing avenues for her passion in cooking and gardening while juggling my role as wife, mother and professional woman.”

After 13 years of being cared for at home, Elena was diagnosed with dementia

“So started the merry-go-round of care workers and home help” Mary recalls “who did not speak her language, understand her Mediterranean food preferences or her abhorrence at having strangers in her home to assist her for showers and toileting. I managed her ravings, often throughout the night, alongside my demanding senior public service role, parenting duties and having time with my husband. There was no time to consider my own needs.”

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 were unsatisfied with their own personal health, with many – reporting financial pressures. Fifteen percent said they felt socially isolated due to being time poor.

The 2015 Survey of Disability, Ageing and Carers reported 12% of the Australian population aged 15 years and above are providing unpaid assistance to a person with a disability, long-term illness or problems related to old age [1]. However, it is likely that this figure is conservative due to the under-reporting of carer status, a lack of self-identification, misinterpretation of questions, or non-response. Of this figure, it is estimated that between 25 – 30% of carers in Australia are from CALD backgrounds with key issues for CALD carers including; problems with the cultural appropriateness of assessment processes and eligibility criteria; lack of choice between mainstream and culturally-specific carer services; concerns about the cultural appropriateness and competency of services; lack of individual and systemic advocacy; lack of involvement in service planning, implementation and evaluation; lack of availability of bilingual and culturally and linguistically diverse staff and lack of carer information and resources translated into different languages to name but a few.

“When she went into residential care, it was a temporary, welcome relief. She found other women her age who spoke her language, and shared rosaries, coffees and Italian biscuits as well as knitting and sewing. Till the deterioration of the dementia meant she was moved to high care and gradually lost ability to move, converse or have a life.”

Unfortunately, earlier this year, Elena lost her brave battle and passed away at the age of 98.

“When I reach out to carers of migrant elderly people in my role in the Partners in Culturally Appropriate Care (PICAC) program, I deeply respect and honour the carers. In an instant, I am walking in their shoes and as I look back on the journey of my mothers life and my role as a carer I understand the sacrifices that carers make to support their loved ones and the physical, emotional, mental and financial challenges. Supporting this group of people and recognising the invaluable contribution they make in society is crucial to the ongoing challenges the disability and aged care sector faces in the future. I hope that my role as PICAC State Director for WA and the work that we do across WA and beyond goes some way to providing that support and recognition”.