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Author's Name: Clare Alexander
Date: Thu 15 Oct 2020

National Carer's Week- A Carer's Perspective

As part of National Carer's Week we offer this article written by Lyn, who attended our Winds of Care program; a respite sail around Sydney Harbour for carers, offered free of charge by us. As a carer, she offers an insight into the challenges many carers face and the opportunities we have as a society to make things better.

This article was first published in the Parramatta Mission newsletter.

The challenges for those caring for someone who is mentally ill are unpredictability, emotional exhaustion and trying to remain positive. Add to these the fact that many carers are ageing and often dealing with their own health problems and those of partners or family members and friends.

It is not too surprising that many then find dealing with the mental health system at times frustrating and tiresome. This is not to deny that many of those working within the system are dedicated professionals, but at times carers can be treated with disregard at best and disdain at worst. For many carers especially those with considerable life experience and the desire to learn as much as possible to assist the person or persons for whom they are caring, being treated as if they are a nuisance to staff or ignorant of the deep complexities of a myriad of mental health illnesses and getting in the way by asking unnecessary questions and hindering treatment.

Doctors can be aloof and patronising. Nursing staff seem too busy with paperwork, chatting to other staff or staring fixedly at computers behind the protective glass and locked doors of the administration hub of the ward, referred to as nurses' stations. The impression given is that they need protection from patients but also their carers, family and friends who visit. The other impression is general disregard.

We have come a very long way from padded cells, straight jackets and the sinister environment of asylums, but in many ways the memories of those days linger on against a backdrop of fear and surveillance. Another major cause for concern to carers is that treatment or containment includes the use of a variety of drug cocktails with names too complicated for those not trained in the medical profession or pharmacology. These concerns are real and should not be treated as general interference by carers.

Over the years of caring, I have attended many courses, mostly organised by not for profit organisations and those associated with religious faiths such as Parramatta Mission, Bradfield Park Carer Wellness Centre now relocated to Kirribilli Community Centre and Northside renamed Yourside. Most of the courses including CBT training and Mindfulness have been very informative and helpful.

In attending many of these courses, I have met many other carers, some of whom have expressed bewilderment and feeling intimidated by "the system" not universally, but the feeling has been often expressed of feeling treated as a hindrance and being overwhelmed. Many have said how difficult it had been to ask questions especially with regard to the serious side effects of many drugs their loved ones had been prescribed.

Most recently I attended a workshop featuring Dr Henry Berman who stressed the importance of establishing relationship between doctor and patient before weighing in with pharmaceutical treatments. Carer input and personal experiences and observations of family members and friends can be of great value in understanding the person who is unwell so carers need to be included in the conversation.

Transiting patients back into the community and providing them and their families with sound professional support is vital. Much support may be needed for daily living and especially safe and affordable housing, social and constructive connections, including access to education, employment and training. For ongoing physical well being and mental health there needs to be comprehensive support. Costs of support and real rehabilitation are negligible when compared to the unacceptable alternatives of homelessness and readmission to mental health hospitals which can become a destructive revolving door.

There is no doubt that a great deal of effort is being made to improve the system which is commendable. It is always important to remember that mental illness is not as visible as physical illness and there is still a great deal of ignorance and stigma attached to those who are diagnosed with a mental illness, which does not happen to someone with a broken limb.

Let us be mindful of the emotional pain associated with much mental illness and try to treat all in pain, be it physical or mental with compassion and respect and this also applies to inclusive and respectful relationship with carers.

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