My life would be so unimaginably ‘less than’ without my wonderful, supportive, unpaid carer AKA my husband, Gaz, (despite his frustrating and endearing husband like faults) since the symptoms of Limb Girdle Muscular Dystrophy have taken up an unwelcome residency in my body. And like millions of unpaid and loving carers around the world he doesn’t question his role because he’s that kinda guy and we have always been a team.
This caring role has ramped up in significance quite rapidly over the last few years in particular and has unquestionably come with compromises, some of which I have mentioned previously. So much more consideration and planning in every aspect of our well loved life; social events, finances, work roles, home renovation decisions and car choices.
We have been able to make the whole Carers function work because we have resources behind us, the ability to change the direction of work and a huge flotilla of family and friends (many also unpaid carers at times).
But what about the 16 year old caring for her mother with depression; the tiring, elderly parents that don’t want to relinquish the duties of caring for their adult disabled son but now have their own health issues, or the single mother of 3 children – one of which has Duchenne Muscular Dystrophy? Where do they find care, financial and aid resources and emotional support for themselves ?
Here in Australia we are so lucky to have a fabulous body for Advocacy and independent Government advice and Carers support in Carers Australia. The first independent body for carers advocacy began in 1980 with the Carers Association of NSW. Since then each State and Territory has it’s own Carers Association under the umbrella of Carers Australia. Since 1997 the current Governor General is always the National Patron of Carers Australia. Parliamentary Friends of Carers has been an annual conference since March 2007 and in 2010 the Rudd Government legislated a Fair Work Bill granting parents of children with a disability under the age of 16 the right to request flexible work arrangements. A Young Carers Program and Young Carers Bursary Program have also been implemented helping some of the 272,000 young unpaid carers in Australia.
The 7th International Carers Conference – ” Caring into the Future – The New World?” – will be held in October – details in the link and associated poster. These Conferences are a fabulous avenue for education, understanding and sharing. Bringing together stake holders from many sectors of society including Carers, the cared-for, allied health professionals, political figures, business leaders and advocates. My main mission in writing this Blog is to raise our understanding and acknowledgement of Limb Girdle Muscular Dystrophy in particular.
There are, however, so many more disabilities and conditions being lived by so many members of our community and the ramifications are far reaching to that of family, friends, carers paid and unpaid and also the economy.
Our carers have to be supported and at the very least, acknowledged and appreciated. Whether you will be attending the Carers Conference or not I know with certainty that your support to a carer you know in the form of the odd meal provided, a phone call or simply asking how they are is so welcome.