A young carer’s journey. By Lisa Sweeney
My journey as a carer began at the age of 10, some twenty years ago when my older brother experienced his first psychotic episode. Initially I thought he was playing a new game, the rules of which he had yet to let me in on - spending hours in his room, holding conversations with the heater, muttering to himself. As the situation deteriorated and self-harm set in, a new reality dawned on me. He wasn’t well. He wasn’t himself. And he was desperate to escape this life and leave me behind. My brother. The brother who taught me to tie my shoelaces, shared his pocket money to buy me ‘Disney Adventures’, and the person who would carry me on his shoulders when I was too weary to walk home from school.
Our family unit consisted of me, my disabled mother and my brother. Everyone else was either overseas or decided to run a very quick mile from the situation. From that point on my childhood was spent bandaging his arms, doing my homework in psychiatric wards during visits, finding cryptic suicide notes, asking psychiatrists to spell out his medications so I could research them H.A.L.O.P.E.R.I.D.O.L. ; not your usual spelling bee material and a far cry from normal ‘kid stuff’. I’d tell my friends that he was in hospital because he broke his leg because as much as I couldn’t understand his illness, I knew well enough that this was not something people, let alone kids, would want to talk about.
During that very prolonged first admission in 1995, no one asked us how we were coping, no one gave us information about his diagnosis, and no one offered us strategies to support him in his recovery. It was at times a very lonely road and thankfully events like today remind us of the importance of sharing lived experience and providing support for carers – hopefully a sign of how far we’ve come.
The past two decades have had their various struggles. My brother travelled along OK with some speed bumps along the way. That is to say he was largely episode free, but I would never say that he was living a healthy and full life. Fear and perceived stigma about his illness kept him hidden in books and the garden, together with a determination to manage his illness on his own. If I had a magic wand and a loaded bank balance I would have bought him a house, paid a full-time carer, found him a wife, and hired the best mental healthcare money could buy.
If his illness manifested with some speed bumps during those years, then you could safely say that in May of last year we encountered the equivalent of a giant sinkhole (much like that found on the Bruce Highway last month). As I had neither said magic wand nor loaded bank balance, we were cursed to again fumble our way through the depths of the public mental health system.
Older and hopefully wiser, the realities of acute clinical care left me with many unanswered questions:
Why did we constantly experience unnecessary delays and such frustrating encounters with service providers?
Why is it that the situation needs to reach crisis point before an admission can take place?
Why is the sole determining factor for a public admission resting on a “plan” to commit suicide, or worse still – an attempt?
Why does it feel like ‘prevention’ is treated as a buzz word rather than a genuine therapeutic aim?
Why, in 2014, are clinical services not capable of managing electronic health records and are still reliant on fax machines, often causing lengthy delays in treatment and forcing carers and consumers to repeat their story multiple times?
Why am I becoming desensitised to the threat of suicide because the system has failed to intervene in time on repeated occasions?
More specifically:
Why would you discharge someone after one week, without a diagnostic or treatment review after they tried to drown themselves in the Yarra River?
Why, after a seven and a half hour wait in emergency department, following the aforementioned suicide attempt 9 days prior, (those of you keeping count will realise that this equates to 48 hours after discharge) did a psychiatrist tell me that my brother’s suicidal ideation was an example of ‘maladaptive coping’ and hospital wouldn’t help him?
Yeah – that one didn’t end so well for the psychiatrist. The beverage I was clutching very nearly ended up all over his nice clean suit.
Why him? Why me? Why do we have such an overburdened and underfunded system when mental illness affects 1 in 2 Australians?[1]
In asking any of these questions I am struck by the hopelessness, and sometimes complacency, on the face of many service providers. “Well, that’s just the public mental health system”. Not for a lack of desire to see it changed for the better, but a strong sense that it’s never going to change. It is difficult to explain the fear that erodes your sleep, not knowing if your loved one will still be alive tomorrow. It is therefore impossible to convey to decision makers the sometimes devastating effects that their policies and procedures can have on consumers and carers. Again, another reason why events like todays’ are so important, so that those with shared experience can unite and ensure their voices are heard.
Our experiences have taught me the importance of carer involvement at every stage of an admission, discharge planning, community follow-up, accurate and timely referrals, showing gratitude when things go right, and providing feedback when they don’t.
As the years have passed and I have become the sole carer, my own personal devastation from our situation has taken a backseat. I have become increasingly committed to improving the experience of clinical and recovery care for consumers – including ‘numero uno’ – my brother. That means countless strongly worded letters, perhaps addressed to some of you in the room today. It is my strong belief that any improvement for consumers will inevitably improve the lives of carers. It also goes without saying that perhaps in this instance more than any other, prevention is better than the cure and more needs to be done in that space.
12 months and 6 hospitalisations later, my brother finds himself with two feet placed on the path to recovery. If nothing else, the past year has reminded me that recovery is not a linear process. It is unfortunately reliant upon the carer to pick up the shortfall of the system and that is something we truly need to address to reduce the number of carers becoming consumers. I’m no economist, but on a simple cost-benefit analysis our mission should be clear.
In my case, working full-time, studying part-time, and being a carer was the recipe for the most difficult year I have ever faced – on top of the heart wrenching journey of seeing my brother so incredibly unwell and not knowing if he would survive.
I emerge from this battle even more committed to my brother’s recovery and to improving the experience of carers and consumers so that an experience that knocks a family to the floor by its very nature, is not made even more destabilising by an at times insensitive and deficient system.
It's been a hell of a journey, and one we will continue to face head-on, side by side. My brother remains the most courageous and resilient person I know, and I thank him for allowing me to share our journey with you today.
Lisa Sweeney
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[1] Statistic taken from Mental Health Services Australia http://mhsa.aihw.gov.au/background/