Being less than able sucks !!
Moving through your world with Jacob Marley type chains in the form of mental and physical impairment or disability inarguably makes for a more difficult life. Those affected do not have a choice – it’s there and we’re living it. But what about those by our side, those that help us to live a more comfortable and fulfilled life, the ones that have chosen to join our journey? Unpaid carers. Our unsung and unremunerated heroes.
In 2015 there were 2.86 million informal (unpaid) carers in Australia. That equates to approximately 1 in 8 Australians being a primary or secondary carer for someone. This, alarmingly, includes an estimated 78,000 school age children under 15 years of age.
In 2015 informal carers provide an estimated 1.9 billion hours of care at an estimated replacement cost of $60.3 billion . Carers are far more likely to live in households with a lower than average income  and also more likely to be women aged between 35 and 65 . A total of 91.5% of carers are providing care to their partner, child or parent . In many cases this not only puts a huge strain on the emotional well being of the carer and the relationships with their recipient but also negatively impacts on earnings and household income. All these figures are set to rise significantly by 2025 due to many factors including an ageing population, increased life span and families travelling and living further away.
The carer gap (the supply of informal carers and the need for them) is also set to widen. Many carers do not see themselves as that. They see themselves as being there for their loved one because that’s what you do in a loving relationship – whether it be a teenager taking on home responsibilities due to his mothers mental illness. Or an elderly man taking care of his Dementia suffering wife in her last years. Or the devoted parents of a young child with the life shortening and severe Duchenne’s Muscular Dystrophy.
In our case HP (Gaz – my significant other) didn’t see my Adult Onset Limb Girdle MD (LGMD) as solely my condition – he saw it as our condition. That LGMD happened to us. And I gotta say I like his thinking.
Gaz would be called my primary carer for statistical and government purposes. Like thousands of other people in a similar situation we have made significant changes and sacrifices to accommodate LGMD. Gaz changed his fulfilling professional career to work from home giving us more flexibility with my gradually diminishing limitations. Fortunately he has developed the skill set to enjoy his consulting work but for many this is not an option. Many carers either continue to work full time and try to navigate the Governments Disability Support program (in the process of being rolled into the National Disability Insurance Scheme –NDIS) to get the home support required for the recipient. But many also choose to leave work and try to pick up part time work to maintain home flexibility.
Either way results in a lower quality of living for both parties. Option 1 means having a stranger attend to your personal functions, which can cause distress for the person being cared for and flow on worry for their family member. Conversely the obvious fiscal changes required when adapting to a lower wage while your expenses are increasing due to the purchase of aids, medication and other equipment is not an ideal situation either. Another impact on the carer is the restriction of leisure time. Even if this wasn’t a huge priority pre illness/injury, rest and recreation is certainly a vital component to the carer’s sense of well being. This outside stimulation can also provide another forum for communication back home.
We have ensured that Gaz continues to enjoy his hobbies and outside interests (SARDA) as much as possible – as if I had a choice – the man’s the Eveready Energizer bunny!! Informal carers, both primary and secondary, make a significant contribution to our community and to their cared-for person. They fulfil not just the physical demands of personal hygiene and food preparation, home maintenance and chauffeur but the necessary company, conversation and moral support that would have been there anyway but is now even more important to the mental welfare of the recipient.
I hope I have never taken for granted the value that Gaz has always added to my life and I am even more in awe and appreciative of his moral strength, adaptability and integrity shown in the face of some pretty trying circumstances.
In conclusion are People Who Need People (the song written by Bob Merrill and immortalised by Barbra Streisand in Funny Girl 1964) really the luckiest people in the world? I think not – I think that people who HAVE those people are the luckiest in the world.
Take care ’til next time,
 Def. (adj) An unwelcome removal of joy
 Deloitte Access Economics (2015) – Economic Value of Informal Care in Australia 2015
 Australian Bureau of Statistics (2014c)