First off I would like to say I don’t like the term ‘Carer’, in mental health, as it gives the perspective of ‘doing for’ rather than ‘supporting’ . It is important to understand that as family members and friends that our role, primarily, is to support our loved ones in their recovery journey though there will be times when, due to acute unwellness, we will need to do things for our people. It is important to give back these responsibilities as soon as able so that they can maintain ownership of their recovery.
Our journey began some 20 years ago when Cathy first overdosed which began a somewhat difficult and, at times, frustrating experience through lack of knowledge, understanding, stigma (both social and professional) and non recognition of the legitimate role of Cares/Supporters.
I remember some of my first thoughts when Cathy was hospitalised for the first time. All I could think of was the movie ‘One flew over the Cuckoo’s Nest’ I thought she was going to be put amongst all these mad people and she was going to be turned into a zombie and I would lose the person I loved. I had all the prejudices that many in the community had at that time. It is something that, I am now, not that proud of.
They did turn her into one of those zombies but I learned that this was the initial impact of commencing Psychiatric meditation and was caused by the sedating effect of antipsychotics and that it would wear off over time. I also, after a time, found that when her illness was under control that I had an even better version of the person I fell in love with.
We had many years of overdoses, self harming, diagnosis changes, medication changes and fights to be heard both as a consumer and carer (family member). I also attending various carer courses and received support (only after developing my own mental illness) which allowed me to gain a greater understanding of what my loved one was going through and how it affected her functioning and social interactions. I also learned 3 of the biggest lessons during this time and they were:
- When your person is unwell don’t take things to heart. Things WILL be said or done that are hurtful but these are generally as a result of the influence of the illness particularly if they are psychotic or have paranoid thoughts.
- It was not my fault. Even though there were, and still are some instances, when my reactions and lack of knowledge and understanding had a detrimental effect on her symptoms it was not my fault. As I learned new strategies and understood mental illness better this gradually changed.
- Look after myself. This the most important thing a carer/supporter can do. If you become unwell then you are of no use to yourself or the person you are supporting. You need, what I call, ‘Me time’. Social and professional networks play a big part in this as you need to take time out and do things you enjoy doing. I talk about as the “emotional tank’ as you are giving your tank is draining and the only way you can replenish it is to do things you enjoy, taking time out to relax or people doing things for YOU! If you don’t then you can finish up like me and become mentally unwell. Don’t let your tank become empty.
The rollercoaster ride continued until Cathy received the diagnosis of ‘schizoaffective disorder with Borderline Personality Traits’ and a referral was made to ‘Spectrum’, in Melbourne. Spectrum is a program run by Eastern Health and specialises in interventions for people with Borderline Personality Disorder (BPD). This was literally a life saver for Cathy and was the last resort. I would like to say that a definitive and accurate diagnosis is important, not just a label, as it the opens the door to appropriate care. Imagine what it would be like being treated for indigestion when you were having a heart attack. This is what it was like for us for 14 years.
We had been told at different times along the journey that this was the ‘best things would be’ and ‘to get used to it!’ We believed there had to be something better and only wished this had been offered years before. Spectrum proved this. Other programs along the journey helped for a time but were only bandaids as was medication but Spectrum proved the difference and we thank them and their dedicated staff for where we are today.
Cathy learned how to take ownership of her illness and helped to develop strategies to maintain wellness. She still uses these strategies today to deal with the day to day happenings of life.
‘Spectrum was my last resort. I didn’t want to live the way I was.
They supported me through the hard times when I was learning about myself and why I was the way I was.
It was hard work but it has been worth it, I enjoy life, I like myself and I no longer run around looking for the much needed attention.’
I also learned that I needed to back off and let her make more of her own life decisions, only intervene or advocate when asked too and allow her to make mistakes but to be there to help her back up again. It was also important for me to set boundaries on behaviours and limits on what was expected of me but to also accept Cathy’s boundaries and limitations on what she wanted me to do.
It hasn’t always been easy but we are still learning and every new challenge is a new learning curve. We also have learned from others experiences and incorporated some of these strategies for ourselves. We still make mistakes but we try to learn from them and I believe has helped in our overall relationship.
Do not allow other people to put things on you that don’t belong to you. An old friend of mine, who was an early part of my social network, once said to me; ‘Own what is yours and leave the rest where it belongs’ I choose this mantra whenever stigma arises or judgements are passed, these are their problems not ours and we refuse to own them.
We hear a lot of nasty things about mental illness and in particular BPD bit most of these are untrue and it is important to understand that recovery is not only possible but DOES happen. No matter how dark the situation there is always hope.
‘Learn to enjoy the sunshine then bunker down and seek support when storms arrive, you don’t have to do it alone’