Imagine feeling like you’re walking on eggshells every day. Imagine your stomach dropping every time the phone rings. Scared your child is lying lifelessly on the side of the road. Feeling like you can’t turn to anyone or talk about what is going on.
According to Carers Australia, this is the reality for approximately 861,000 Australians who are carers for someone with mental illness.
Jacqueline Alexandre is one these Australians.
Her daughter has been diagnosed with Bipolar Disorder and Emotional Personality Disorder.
Mrs Alexandre identifies as a carer for her daughter and in her words “your role as a mother never changes, no matter how old your kids are”.
The 2020 National Carer Survey received a total of 7,735 valid responses from carers in every state and territory of Australia.
It found nearly half of these carers were experiencing high or very high psychological distress. One in three felt highly socially isolated with no time to keep on top of their own personal responsibilities. Services were less likely to meet carers’ needs and it was relatively uncommon for carers to be asked about their own needs. The most common challenges carers experienced when accessing services was getting information about what services are available, and the time and energy it took to organise services. Waiting periods to access services were also a common challenge and one in four carers reported spending more money than they made in the past 12 months.
There are acknowledged gaps in the available services for people with mental illness which result in non-timely support. Therefore, informal carers, such as family members or friends, play a significant role in the care of people with mental illness in Australia, providing a substantial number of hours of unpaid support.
Primary carers for people with mental illness work an average of 36 hours a week and this work is largely unacknowledged and mostly goes without pay.
Carers WA systemic policy officer Felicity Mitchell says caring for carers is so important because carers don’t get a break from the role.
“There is a huge range of things from medical appointments to providing personal care, showering, managing financial affairs, providing help to find housing and accommodation, providing emotional support to the person they care for a very broad range, it depends on the carrying situation.
“We know that carers have a lower wellbeing score than the rest of the population and if they can get some support for their caring role it certainly helps the person they care for as well.
“We want to avoid informal carers from leaving their role, as this often just complicates the situation even more.”
Perth clinical occupational therapist Claire Green has worked in inpatient facilities and knows first hand how families are not included in the healing process.
“In acute inpatient admission, we rarely see, from a therapy side of things, the family. I know at Hollywood hospital and Abbotsford hospital, it’s all group therapy, so they don’t receive one on one treatment.
“In terms of interaction with the family, there’s not a lot from a therapy perspective, which I think is backwards.
It’s left up to the patient to teach and educate their family about their situation, however, patients have come to our facilities because they are at risk to themselves. They’re suicidal.
“They’re at their worst when we see them, and throwing information at them about all the support available for them and their family members is almost never the correct solution.
“They’re highly medicated and very unwell at that time and its left up to them to first remember that stuff, and then access and share it with their family.
“Family members are often left confused and without knowledge of the resources available for them.
Miss Green said family involvement was crucial.
“Even just learning the language you can use day to day being able to approach difficult conversations with people about suicide and mental illness in general, would definitely make the individual feel a lot more supportive, a lot more comfortable to have these conversations,” Miss Green said.
Perth counsellor and psychotherapist, Stephanie Koutsoukos says it is so important to try and look after your own mental health because you can’t pour from an empty cup.
“So often, when we’re supporting someone who is having a mental health crisis we try to help them in different ways and different strategies to cope.
“So, if we can’t fill our own cup up, we’re not able to help someone else build theirs.
“It’s about doing what you say you will do and walking the talk because I think that we really need more carers. We’ll always need more people who are passionate and willing to do that
“The people that we need, we need them to be strong. And otherwise we can’t instil that strength into the people.”
She hopes the future holds a more inclusive and understanding environment for carers as the whole community benefits from their work.
“A sort of prerequisite kind of skills-based training for informal carers, in terms of dealing with crisis support for family members and people that they caring for is a huge area of need, not missing the general community, particularly in terms of those who have disabilities and, and those who are caring for family members who have a disability or have some grave mental health concerns.
“I think that getting some support in terms of how to actually respond to certain situations will be quite good. Maybe the government could provide, free online service, maybe some training in terms of some basic mental health skills.”
Embracing BPD support group is a support group for individuals with Borderline Personality Disorder and their loved ones.
Below are the experiences of seven girls who are part of the support group.
Carers WA is one of the main services available to carers, according to Felicity Mitchell.
“There is a new federal government system where you can either look on your gateway website, and there’s a bunch of resources there, or phone us.
When carers phone in they undertake an assessment of where they are at and what they need, and from there they can access WA carers services.
The most used service is care counselling, which is free.
“We also have a number of other programs around getting carers back into the workforce, social support program, respite programs.
“So, it’s quite a wide a range of support services that are available for carers.”
Mental Illness Fellowship of Western Australia offers carers a range of support.
These include one on one carer support, information and workshops, wellways peer education program, coffee groups, support groups, retreats and social events.
MIFWA also runs a Mental Health First Aid Course which focuses on how to assist someone who is developing a mental health problem or in a mental health crisis, the signs and symptoms of various mental health problems, where and how to get help, and what sort of help has been shown by research to be effective.
My Recovery and Rural Wellways manager Sharon Karas says MIFWA started as a grassroots organisation that grew with the needs of the people.
“For over 30 years we have worked alongside people affected by mental health issues in a way that is meaningful to them,” Ms Karas said.
Mental Health Foundation Australia vice chairperson Jim Goodin says mental health is probably the most prevalent underrated, misunderstood, stigmatised disability within society.
“We really need to address this issue because it prevents people from receiving help from the system and it was incredibly important that people do receive help, particularly if the early stages of an illness,” he says.
“Unfortunately, we don’t put those options out there as possible solutions early enough, because of the stigma and this can have a devasting effect on those who love and care for someone with a mental illness.
“My first advice for carers who are struggling is to put themselves first. You really have to put yourself first. You have to prioritise yourself in a number of ways and look after your soul. You have to look after yourself.
“It’s sad that support isn’t offered to those who need it but that doesn’t mean it isn’t there. Seek out the support, join support groups, do courses but most importantly look after yourself, because you are important and you matter,” Mr Goodin said.
If you or someone you know needs immediate attention please call 000.
For other situations please find the most fitting for you.
Mental Health Emergency Response Line (MHERL)
Metro: 1300 555 788
Peel: 1800 676 822
Available 24 hours a day, seven days a week
For anyone involved in a mental health emergency in the community – including individuals, families/carers, members of the general public or health professionals.
Free call: 1800 552 002
(4.30pm – 8.30am Mon-Fri, and 24 hrs Sat, Sun and Public Holidays)
Helplines for support and advice
Helplines can provide you with immediate access to support and advice. They are anonymous, free and confidential.
24 hour confidential telephone crisis support service.
24-hour, nationwide service that provides free telephone, video and online counselling.
24-hour Anonymous Crisis Support.
Callers have access to 24-hour support.
3pm to midnight every day. Online chat available.