by Ross Sharp

In the mid 1970’s my father’s father was moved from a retirement village to a nursing home where he could gradually lose his mind and die in what was thought to be a more appropriate setting, a bed in a ward.

I remember little of him, but I do remember one night when my father returned from seeing him. He walked through the front door of the house ashen-faced, saying nothing, looking at no one, and went straight into the bedroom for an hour or so.

His father had no longer recognised him.

“Who are you?” he had said, scared of this stranger in his room. He sat on the edge of his bed, thinking he was fishing, fishing being a thing he had once loved, and this stranger was scaring all the fish away.

“Who are you?”

My father is now 84 and hasn’t been out of the house in almost two years. A respiratory disease.

His life consists of walking, slowly, from the bedroom to the kitchen table, from the kitchen to the lounge room, from one chair to another, to the front verandah, to the back, where there may be sun in the cooler months, or shade in summer. His shoulders seem permanently hunched from wheezing and gasping and coughing, a paper bag beside his chair to catch the tissues full of phlegm, cupboards full of pill bottles and ventilators at the ready, oxygen at night to sleep.

He can’t manage getting in and out of the shower or bath anymore.

Last time I saw him, I noticed a large bloody scab on his leg, and asked my mother what it was …

“It’s from the cortisone he has. It makes his skin so thin and it breaks if he knocks it on something. The sheets were covered with blood.”

Sometimes he forgets that he’s asked a question, and asks it again a few minutes later. Sometimes he gets his days confused, but as all the days are the same, that’s not so surprising.

Sometimes he apologises because “I can’t do anything anymore. I’m sorry.”

“I’m sorry I’m sick.”

Sometimes he rings and says “I can’t go anywhere. I just stay here all day, going crazy. What are you doing?”

Every sentence a struggle to get the words out.

A couple weeks ago in the SMH, Mike Carlton wrote of his mother

“Her life has no quality to it. She has no knowledge of her five grandchildren and one great grandson. Once she was a voracious reader and a keen gardener and knitter, but all that is beyond her now and she is too frightened and confused even to turn on the TV. We had to take her telephone away because she was running up huge bills making the same call to say the same anxious thing to the same person, every half hour. Her days and nights are spent lying on a bed in a small, beige room, staring at the walls and waiting to die.”

A discussion subsequently took place, with Carlton receiving “hundreds of emails” in response, “Every one … a cry of anguish at watching a parent die in pain, fear, confusion, or humiliation.”

Like this

“My dear Mum, who died recently, had chronic osteoporosis and was stuck in a chair in a nursing home for five years unable to move anything except her head and arms. She had to suffer the indignity of being hoisted naked up in the air to be washed and to ask for absolutely everything to be done for her. Unlike your Mum, mine had all her marbles so she was absolutely aware of her plight and each day I went to see her she would tell me she was disappointed when she woke up that morning and how she wanted to die. It was absolutely heart-breaking.”

But you also get letters like this

“The feelings of those supporting a euthanasia law are understandable but those people need to face the harsh reality that, however stringent the safeguards, smart people will find loopholes and the law will be used by unscrupulous people, whether enemies, acquisitive relatives or nursing home staff fed up with a fractious resident with no relatives, to bump off defenceless people.

Just one such murder makes the price too high. Moreover, as the years go by, interpretation and application of the law will become looser and distinctions between appropriate and inappropriate cases will be harder to recognise.

The ”right to die” is, I suggest, a euphemism for ”right to kill”.”

Douglas Simpson, Lapstone

Change a couple words in the first paragraph, Douglas could well be writing about Sydney property developers.

Mercy is a quality, not a fault.

What we want, as human beings, is the right to die for ourselves, not to “kill” our relatives or friends – ourselves.

I would not help my father die, if he wanted to, if he asked.

If  he had the choice for himself, I do not know if he would take it, and if he did, I would be shattered, as would his wife of 54 years.

The normal response. Not the glass darkly and simple-minded ideology of opportunistic cruelty that sees the world as a washing machine of dank and dirty slippery slopes, venal in our true hearts, murder forever on our minds.

I am now 53.

I want a choice.

For myself.

Or I will take it myself if and when needs be.