Grief is like the ocean. It comes in waves – some seem angry, some wash ashore with peace in mind, some seem to be trying to return to the centre of the world as if they could reverse the tide and tug of the moon above.
I miss my sister. It might seem strange to miss someone who could not speak for the last two years of her life. I missed her then too, but now I miss her in the bleak, dreary fashion of knowing I can never sit and hold her hand and feel her kiss on my cheek, or see her questioning glance.
I miss hugging my sister. She was the best hugger in the world, I think, even after her time in the aged care home meant she could no longer raise her arms in response. I miss her smell, of clean clothes and familiarity. I miss her orbit – when I entered it on my short visits to Brisbane, I felt I had come home.
Coming home is an instinctive laying down of burdens, shedding the external skin and putting on a far more comfortable layer. Even if we play roles with our loved ones, they are roles so ingrained we need not think how well we are playing them. This was my peace with Ally.
Not that it was easy to visit her. Every time I left her I felt a tearing sensation, and would cry a little, grieving the relationship we could not have, the life we did not lead. Some of this I blame on bad luck, illness. Some I blame on the system, because that is where the blame squarely rests.
There is a lot of futility in the disability system of Australia. My sister suffered a mini stroke when she was in compulsory transition care which caused or at least significantly sped her demise. Let me explain, because it will seem unreal to those of you with no experience of the system.
Ally kept having falls, and she could not be cared for at home by my mum any more. She could still speak, eat, walk (with a frame or stick). She suffered dementia, but she had periods of lucidity every day and in her own reality, she was mum’s carer, not the other way around – and in many real ways she was, giving my mother purpose and meaning.
Finally the disability system accepted that she really needed external care (after years of trying to get my sister an adult lifestyle package to prevent social deterioration, the system responded to a crisis which, who knows, may not have been so severe if they had acted sooner.) But to go into a care group home, she would have to first stay in transition care for several weeks – for some unknowable reason she could not go straight fro her own home.
When my mother and older sister took her to the transition home, Ally said as clear as a bell, ‘Don’t leave me here.’ My mum tried to tell her it was a holiday.
Ally started getting a rash and the carer gave her Phenergan, which was contra-indicated with Ally’s medication. Let me repeat this: the carer, whose job was to care for Ally and take care of her meds, gave her something which she would not have given her if she had been doing her job with a basic level of duty of care, and THEN (we believe) LIED ABOUT IT. Ally went into a deep sleep from which she never recovered. Days later she awoke, but could no longer eat or talk. We entered into a series of complaints, mostly concerned that this would not happen to others. The carer either deleted or did not enter the Phenergan in the record she was supposed to keep. The complaint unit is a part of the disability department itself. We never stood a chance.
Ally could still walk and move her arms and try to say mum. But time spent in the under-resourced and unsuitable system of aged care soon took care of that. After several months she lost even these abilities.
Finally a year later we got her into a beautiful group home for high care needs, with excellent care workers. Ally revived – she would never regain significant physical functions lost to neglect, ignorance and a broken system. But she started to sign with her hands, try to help with her care, go on outings, and generally engage in living.
But the lack of movement which resulted from the aged care meant that the fluid gathered on her chest and would not disperse. It was a matter of time before pneumonia would carry my sister away with it.
I hoped for a few more winters. I got just one.
It is natural to feel angry when someone you love dies. I don’t feel particularly angry as I write this. Mostly I feel tired. There are things we can do, things we can fix. What our politicians have forgotten: the reason to keep somone alive and well is not how productive they can be in material terms, but because we love them. Our politicians forget how senselessly unproductive so much of being human is. Grief itself seems a useless by product of attachment to an economic rationalist. Love too, a useful emotion only insofar as it creates a will to breed for the labour force.
But humans are not like that. I think it is time our treasurer Joe Hockey loved someone whom it is absolutely economically irrational to love; someone like my sister Ally. I mention Joe not because I don’t know that disability services are a state matter, but because for me he represents all that is ahistorical, morally bankrupt and dogmatically obtuse about the economic irrationalism of our times.
That said, I could do an impact evaluation for you, showing you the lives Ally touched, the people she inspired and the value this created for the economy. I could really do that. But why? If you have ever loved someone, you know that all the other stuff doesn’t matter.
If the system denudes us of love, derides us for our essential humanity, then it’s time to overthrow the system.
Let my grief come, let it wash over me, salt my skin with the tears of loss, chafe my soul clean. I grieve someone who could not speak, or swallow, who could not walk or move her arms. I grieve someone who could love, right to the end. When his time comes, will Joe Hockey be able to say the same?