I believe that kindness is the key to enabling conversations about what matters. Kindness builds teams which then increases our quality of life, and in health care – patient safety. It breaks down barriers and changes mindsets.
Sharing one’s lived experience takes courage – this is my story.
Life doesn’t always work out how you think. Disability can happen to anyone of us at any time for various reasons : car accidents, work accidents or even a mozzie bite. We never know what life has in store for us.
I am a Carer for two very special people in my life. My Mum in Law who is a frail ages 90 year old lady with advanced dementia, and before he passed, my younger brother who suffered a birth injury resulting in an intellectual disability. Later in his life he was diagnosed with a rare genetic diseased called a “Leukodystrophy”.
Leukodystrophies are a group of rare, progressive, metabolic genetic diseases that affect the myelin sheaths protecting our nerves. Often the root cause cannot be found and there is no treatment or cure.
Intellectual disability or cognitive decline can be invisible disabilities. It takes time to fully understand and accept what is happening for your loved one. It’s like a grief process you need to work through for your own health and wellbeing, including disbelief at the time of a diagnosis – this can’t be true, you’ve made a mistake, can’t you just fix it!
OVERWHELMED & ALONE
I didn’t recognize myself as a Carer, as many people don’t. It just seems the most natural thing to do to look out for someone you love. Trying to come to terms with the illness of two very special people whom I loved dearly was not easy. I felt overwhelmed, frustrated, anxious, angry and guilty, especially as a health sibling. I felt alone and it was as if no one understood or even was listening.
One day I was feeling disgruntled and my dear friend just happened to pop over for a cuppa and a chat. She listened to me pour my heart out in a non-judgemental way. Then she asked me a very odd question -“Deb what do you want your life to look like?”.
My first reaction was “What, what sort of question is that? I’m not talking about me, I’m talking about my brother. I want him to be safe, to be happy, to be content and living the best life that he can live”.
But my girlfriends question played on my mind for a few days. What do I want my life to look like? How can I make a difference? How can I enhance my brothers life? Something had to change, I couldn’t keep doing what I was doing and expecting things to be different or better.
One day whilst out cycling I stopped at my local coffee shop for a well earned coffee. I was reading the local newspaper and I saw an advert calling for expressions of interest from local Carers/ Consumers to engage with the local health service to give their voice to the planning and delivery of health service. I wondered if I could do that, as I had no experience in the health sector I thought about this for about a week or so.
I decided to submit my EOI and to my total surprise my application was successful. This was the beginning of an extraordinary journey as a Consumer/Carer Health Rep that I never saw coming.
Carers WA conducted training for Carers interested in contributing their voice so I immediately signed up & completed the course. This built up my confidence & changed my life!
One simple act of kindness, one simple question had changed me life! It changed my mindset and enabled me to make positive changes in my life.
I was welcomed by the team at my local hospital, supported, encouraged, listened too, respected, reassured that my lived experience and feeling were valid and important. It gave me a purpose, a way to give back to my community, to make the journey just a little easier for the next carer/ consumer.
In my role I was able to contribute to improvements in the health and disability sectors at a local, State and more recently a National level. I would never have imagined these opportunities even existed, or even that little old me could make a positive difference.
This is what I want my life to look like.
KINDNESS IS THE KEY
I believe that kindness is the key to enable conversations about what matters to each of us.
Kindness doesn’t cost anything, but it can make a profound difference to others. It gives Health Consumers & Carers the confidence to ask questions, increase their understanding and health literacy, and it makes them partners in the planning and delivery of health care.
Kindness is life changing – it builds trust when then builds collaboration and partnerships. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.
Kindness is the enabler for everything that matters to each of us.
Lets all catch the Kindness Bug & Spread It!