Both my parents were diagnosed with dementia within 2 years of each other: my father with Lewy Body Disease, my mother with Alzheimer’s.
As I lived an hour and a half drive away, I became a long distance carer for four years.
Dad died in 2010 and Mum entered care 10 months later.
I still care for Mum – but as a daughter rather than the primary carer. I could not have done what I did without the assistance of my family, a wonderful group of friends and organisations like Alzheimer's Australia and various Homecare groups.
Even so I had several meltdowns during those four years. Including some illnesses. The combination of my emotional distress, the tasks that needed doing and the plans and decisions that I had to make, was overwhelming.
For me caring is necessarily coupled with advocacy, so whilst being a carer I challenged the medical system and the aged care system (with small wins). As well I gave praise to some absolutely fabulous people working in these areas.
There is a huge hidden workload undertaken by family carers, which currently saves the government millions of dollars.
This situation is not sustainable into the future without more research, support services and education. And a little creativity!