This is what dying looks like

Dying looks like the erosion of a man-made beach.
Its contours form and reform in alarming ways.
Dying looks like an unsurprising surprise.
Each time the decay will have progressed, but its extent is unpredictable.
Dying looks like sleep.
The relaxation you should've afforded yourself for all those years.
Dying looks like struggle.
Your vascular, sinewy remains refuse to let your head hit the pillow.
Dying looks like you've lost control.
I wipe the drool from your lips when you eat, drink, sleep, walk, breathe.
Dying looks like panic.
I mean you no harm, I promise.
Dying looks like rebirth.
We don't know each other anymore. 

My timing may be a little off, but I'm pretty sure my dad is fourteen years into Parkinson's Disease. His diagnosis has become all the more complicated with the onset of Lewy body dementia which, for all intents and purposes, leads to the same outcomes as regular, old, life-ending dementia.

His situation is grim.

The irony is that, according to several medical professionals at least, Dad's biggest problem wasn't Parkinson's: it was depression. Depression brought on by Parkinson's interfering with what he enjoyed the most, and what was critical to his identity and sense of self worth. I'm talking about his ability to build and fix, which ultimately led to him providing for his family.

Put simply, in the beginning, dad's condition required medicine. Taking that medicine made him feel unwell and impacted on his ability to participate in his entirely-manual vocation. He abstained from taking the medicine which meant less nausea, but also increased the severity of his shaking. The shaking impacted on the quality of his work. Dad was embarrassed by producing low quality work. He couldn't do his job, and wouldn't take his medicine, meaning that he felt like a failure and his condition went untreated. The timing and severity of each of these inputs and outcomes is uncertain for me, but this was the foundation of woe. 

The decline in his condition warranted access to more-credentialed professionals. Their advice varied in terms of quality.

We had an arrogant innovator who had made a substantial contribution to the field, but was careless in terms of their advice in terms of supporting dad's care. One particularly negligent suggestion was responsible for the most significant incident we've endured in terms of both the degradation of dad's condition, and as a family caring for a loved one with Parkinson's Disease.

We had a softly-spoken, though wise operator who helped me make sense of the initial plateaus and the first big dips. At first, we were dismissive of his advice because he used words like "normal" and "baseline". When your dad starts seeing vampires among the branches of the Jacaranda tree at night, it's hard to reconcile that with the word "normal". When he ties down a bedside table with underpants, it's hard to recognise that as an acceptable "baseline". He responded to this, and changed his tact over time. I am genuinely thankful for his advice.

Complicating this was our family GP, who wanted to honour our dad's declining sense of agency. Their advice and inputs were, however, at odds with the reality of dad's decaying grip on reality, as well as the health and safety of various people tasked with aiding in his care. 

Throughout this entire ordeal, the roles of individual family members have changed too. Our attitudes and actions have been shaped by time and experience. If I could have my time again, I would absolutely be forcing us all out the door to speak to support groups. I would have continuously followed up on whether or not dad was taking his medication. I would have lobbied vigorously for compassionate public policy with regards to welfare and social services. If I had my time again, most critically, I would tell my mother that she is not alone. I would tell her that I love her and I'm proud of her. I would tell her that everyday.

Applying for support for your loved ones is overly burdensome and rife with cruelty. The policy, processes, systems and people driving this don't seem to be linked in a meaningful way. They require the meaningless confirmation and reconfirmation of self evident details, usually for arms of the same government department. The offices of Centrelink are a void where empathy and common decency go to die.

This may sound unrelated, but dying looks like waiting rooms, appointments, and a litany of forms.

Dying looks like your dad crying because he doesn't know why we've been waiting on the same green chairs for an hour waiting for the next available administrator.
Dying looks like tours of nursing homes that look slightly more cheery than the hospital ward where dad is currently staying.
Dying looks like your dad attacking you with anything he can get his hands on because, not only can he not recognise you anymore, he's also terrified that you're conspiring to have him killed.
Dying looks like thirty-two dollars per day in parking.
Dying looks like doctors pulling fifteen hour shifts just so they can see you and every other person who's in the process of dying right now.
Dying looks like burnt, over-priced coffee.
Dying looks like fish and chips sitting under the warmer in the hospital refectory for four hours.
Dying looks like a divorce so you can afford residential care for your husband.
Dying looks like the ward psychologist regretting their own advice.