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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13 Responses to this article
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Ilsa Evans June 19, 2012
I identify so strongly. My father also died of MND, although in his case he chose to bring forward his death. The collaboration required brought problems itself. A horrible, horrible disease that stripped our family’s defences and left a rawness that continues to this day. My sympathies.
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JessB June 19, 2012
Beautifully written Elizabeth, thank you for sharing. I’m so sorry that you lost your Dad, and that he died too.
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Lizabelle June 19, 2012
Thank you, Ilsa and Jess – and Ilsa, I’m so sorry to hear about your father. You’re right that it’s a terrible disease; every case is different, and differently horrible.
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Lizabelle June 19, 2012
Thanks, Pam. It took me a long time to realise how extensively my memories of my dad before MND had disappeared. Reconstructing that life is necessary, I think – I’m glad you can still do that with your own father to some extent.
And I’m so sorry you had to lose your dad at such a young age. It does such damage, even though we grow around the loss. As you say, it reshapes the world.
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Anna June 19, 2012
My Father had his mind until the end of his battle with lung disease. My mother however had Alzheimers and I really understand what you mean about losing your Dad before his death. It’s hard now to remember her as vibrant, clever and laughing when the other memories are so strong… Sometimes, just sometimes death is kind but doesn’t come as soon as you would hope – for their sake.
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Lizabelle June 19, 2012
Hi Anna – yes, it’s very difficult when the person “goes away” while they are still living. Your mother sounds wonderful; I hope you manage to hold on to those memories of her in the good times.
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speccygirl June 20, 2012
My mum is in NZ with MND – I think the fact that she doesn’t drink has probably helped with some apsects… sorry to hear about what a terrible time you and your family have been through
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Lizabelle June 20, 2012
Thanks, Speccygirl, and all the best to you and your mum in what must be a very tough time.
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Maree June 21, 2012
Thank you for such a heart felt story, it is very sad and I hope you can find some pre MND memory of your Dad to hold on to.
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Lizabelle June 22, 2012
Thank you, Maree – I really appreciate the sentiment.
