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MAREE Brown* spent six years looking after her daughter at home, who suffers from a combined mood disorder and schizophrenia, known as Schizoaffective Disorder.
As you can imagine, it was no easy task.
“I am a very resilient person, but I think all carers by nature are resilient because they have to be,” Maree tells MedAdvisor.
“Even so, it was very tough.”
Her daughter was prone to escaping outside in the middle of the night, was drinking heavily, and was unable to be left by her own.
In the end, due to her daughter’s complex needs, she was moved into a 24-hour care facility.
“She has been in the facility for a year and it has been good for her,” Maree says.
“She is a very gentle person and talks to herself, but has the most amazing mind. She is hopeful of one day being able to study quantum physics.”
The journey from her daughter’s diagnosis to receiving adequate care was a long and arduous process, and in that sense Maree’s struggles are typical of many carers: it took a while to get the right help, it took a while to be heard.
“Frustration is a big emotion and many times I wanted to just scream,” Maree says.
But more than that, it took Maree a while to learn the importance of self-care, and as National Carers Week begins this Sunday, it’s time to remind the nation’s carers that they can only look after others, if they look after themselves too.
“If we don’t validate ourselves by making our health a priority at times, how can we expect the government to value our role and crucial need for respite,” Maree notes.
A Carers NSW 2018 Carer Survey found that of 1830 carers in NSW who responded only one in four felt their caring role was recognised by their community.
Fewer than half said they were asked about their needs when supporting the person they care for to access disability or aged care services.
Furthermore, one-third of carers supporting someone under the age of 65 said the support they access as a carer had decreased over the past two years, even though the people they were caring for were likely to have seen an increase in support.
It is worth noting, however, that many carers who pointed to positive aspects of their caring role, reporting that caring made them feel needed (58 per cent), useful (52 per cent) and appreciated (52 per cent).
CEO of Carers NSW, Elena Katrakis said carers often feel isolated or have little social contact due to their caring role. She encourages carers to take some time out during carers’ week for themselves.
“For this year’s National Carers Week we aim to show carers that they’re not alone, as well as raise awareness and give the nation a chance to acknowledge the invaluable contribution carers make to the community,” she says.
In Maree’s case, she makes sure she looks after herself by never missing her regular Zumba dance classes and allowing for “me time”.
“When my daughter first became unwell, there was a lot of wondering why this was happening and then I thought, ‘Well, this is just how it is’,” she says.
“One thing that never waivered was my belief that it would get better. My gut instinct told me so. Mum always said to me, ‘Have faith in life’ and that stuck with me.”
A positive mind-set, meditation and a great group of friends has helped her as well.
“I am extremely lucky to have created a large network of genuine friends over 22 years. I am open, laugh and love life and no matter what,” she says.
When asked what carers need in order to feel more supported, Maree is unequivocal.
“Funds, funds, funds for breaks,” she says.
“We need to replenish like any other person, we are not invincible robots with large bank accounts.”
*Name has been changed.
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