I am the child of a disabled father. I am disabled. My 78 year old Mum has needed high level care for the last five years.
My 78 year old Mum fell in early March and broke her arm and gave herself a bump on the head. She was insisting on walking her little dog. Both my adult son, who is her carer, and myself were out and unaware she was out walking.
This is not a criticism of her, her stoic personality fought so many battles with the health system on the part of my father until his death in 2002 – that fighting spirit has kept her going. Until it was Mum that needed care, she had decades of thinking only about who she was caring for, which meant she had neglected her own health. This is the nature of a world (particularly for Mum’s generation) that largely expects, in fact demands, that women to do all the caring, to sacrifice their lives and ambitions.
This last week the national press has been dominated by the PM’s gaffe. To which the disability pride movement responding. Including myself with a tweet from my academic Twitter account that went a little viral.
Mum fought tirelessly for Dad’s care and for a period, for mine for most of her life. Only to fall walking the dog and slip away from the world in hospital – as her liver disease (for the record she was never a drinker) escalated since the fall rapidly. She now has end stage hepatic encephalopathy.
Because of COVID, she was moved four times between four different hospital locations during an 8 week period. We had to battle for her to be taken off opioids, that we felt were incorrectly prescribed without proper assessment and they had horrendous side effects. Her care was sporadic and we know staff were forced to make tough calls. As she descended into encephalopathy it only got worse and we had ‘those’ phone calls from doctors telling us how little they could do.
Mum is now in and out of a coma and family have come and gone saying goodbye.
It’s been a hard few weeks, but this week, even harder with the words of a Prime Minister who has sold his soul for coal and does not care about those of us accessing care through Medicare.
I really want to share the photo of her and I, Mum with a big beehive in the early 1970’s. But I am too tired and overwhelmed to find it.
But she had a wickedly dark sense of humour (not as dark as my Dad’s though) – and she would have loved me sharing this photo as a testament to her fashion bravery, as well as her ‘I don’t give give a shit what other people think’ approach to life. We didn’t always get along, but there is a lot about her that I admire, despite a complicated history.
She is one tough cookie. She stood up and fought for my Dad’s rights through the 1970’s and secured help and navigated an unfeeling health administration system for them both. We’ve had many long conversations in the last two years, healing old traumas, understanding each other better.
So much I didn’t know until her 70’s, because of the social stigma of talking about trauma, family of origin abuse, mental health etc. So much that now, my son and I talk about these issues often – as part of our lives and that was why I was super angry at the PM’s comments.
Shame about disability is one of the most destructive social stigmas there is. It helps no one.
So when I tweeted “Disabled and blessed with a vote”, I was more distraught than angry.
And here we all are, in the COVID world, after the last few weeks of hell trying to navigate Mum’s care, when we couldn’t visit for most of it. When an overstretched hospital system had to make tough decisions, because of her age and advanced disease, Mum didn’t stand a chance.
We don’t need politicians who say “someone’s got to pay for it”. That’s the most ridiculous thing I have ever heard. My mum had the best care available under the public purse, under Veteran’s Affairs and the last few weeks has really, in reality, cut her life much shorter than it should have been.
If you take care of the health system, you have a healthy workforce that does not need a system in damage control because it’s so poorly funded. Putting dental on Medicare will save the government millions long term and increase workforce productivity. Neo-liberalism and austerity only benefits a small amount of the population while the rest of us pay for it with our health and well being.
We hoped to bring her home last week. We made her apartment ready, planted pots of flowers on her balcony.
She’s not coming home. I will miss her sarcastic dark humour when she was faced with huge health and disability challenges over the years for her and her family. I will honour it, by continuing that legacy.
We laugh, as part of a survival strategy.
Since 3 days ago, Mum is not in pain and she’s seen family she hadn’t seen for a few years, even if her delirium was so bad she asked them to line up like school children and told them to behave. Which we all laughed about, because it’s an extension of her life of being a bossy hard ass who stood up for others and put herself last. However, this is not a legacy I want for future women or for anyone.
And now we wait. We wait for that moment when we know we won’t see her again.
And I look to this election.
Please don’t vote for the continuing stripping of Medicare.
Please don’t vote for US style user pays healthcare.
Please don’t vote for further privatization of aged care and other health services.
Please don’t vote for further corporatisation of health care.
Vote for compassion. Vote for community, not profit.