MY DAD. WHAT MIGHT HAVE BEEN
There are an estimated 2.6 million carers in Australia.
The nominations for the NSW 2012 Carers Award have opened. They will “acknowledge the sacrifices carers make for a family member or loved one”.
“Carers are the unsung heroes in our community and they all deserve our recognition and thanks for their selfless efforts in supporting people with a disability, mental illness, chronic health conditions or people who are frail,” said NSW Minister for Ageing and Disability Services, Andrew Constance.
However, we know all too well that “caring” is not the kind and selfless word we like to think it is. Embarrassment, resentment, anger, denial and blame are just some the complex emotions we feel when we struggle to find the best in ourselves to “care”.
The guilt and sorrow never leave us as we ask: “Could I have done more?”
Today, The Hoopla presents Elizabeth’s story:
At the next table, the waitress placed a cake before a middle-aged man while his family sang Happy Birthday.
The man blew out the sparklers and dug in as cameras wielded by his kids – they were smiling, proud 20-somethings – flashed around the table. I smiled and then, unexpectedly, began to cry.
My dad died nine years ago after a lengthy struggle with motor neurone disease, a neuro-degenerative condition that wastes the patient’s motor functions until he or she cannot move, eat, speak or, eventually, breathe.
If I will never fully accept the manner of Dad’s death, I’ve done my grieving and have learned to live without him. What still takes me unawares is the way The Disease, as our family referred to it, robbed us of him long before the end.
Years before his diagnosis, the effects of The Disease had the family in turmoil.
A clergyman who worked long hours to promote social justice and help the needy, Dad began behaving erratically and self-destructively. He drank too much, and when drunk he lectured anyone within reach on his pet subjects. “How much do you earn?” he would demand of unwary punters at the bar. “How much do you give to the homeless?”
When we persuaded him to see a doctor, we anticipated a diagnosis of depression and a prescription of counselling. Instead, the doctor diagnosed MND, prescribed nothing and gave him four years to live.
I will never forget sitting down to lunch with my dad and watching his jaw shake as he related this.
At first, there was a flurry of activity: research, medical trials, mailing groups. Dad was so fit; he’d run his fifth Great North Run a few months previously. How could he be dying of a wasting disease? But within six months he needed a stick, and two years later a wheelchair.
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