Saturday 17 January 2015

A good death

My father, Jack Rheinberger, passed away in 2014. A brief obituary can be found at the ABC Open “In Memory Of” project.  And you can read about his life in his memoirs.  But this story is about how he died.

Dad had been struggling with plumbing problems all year. It was mostly due to old scar tissue on his prostate, the legacy of radiation treatment a decade ago.

He was constantly in and out of hospital, usually with blockages. The pain and indignity of the treatment was almost as bad as the problem.

One night the blockage was so bad that the Doctor couldn’t get a catheter in.

“Nurse, get the introducer,” the Doctor said. “And Jack, I advise you not to look.”

Of course, Dad looked.

You know how you can bend a coat-hanger to unlock a car? Imagine something similar, made of surgical steel, with a nice little bend in the end to get around that awkward spot in your urethra.

The Doctor spent five minutes poking around with it, trying to get it past the blockage. Dad gripped both sides of the bed, holding as still as he could, crying silently with the pain. Finally, something slipped past his lips.

“Oh Jesus!” he said. “Sorry, sorry...”

“You don’t have to apologise to me,” said the Doctor.

“I wasn’t,” said Dad, ever the staunch Catholic, “I was apologising to Jesus.”

These hospital trips were petty common over the last year, but the problem was gradually brought under control.

Then one night, Mum and Dad called their five children together to share some bad news. Dad told us that his GP had done a follow-up scan for something else and found a terminal problem.

“There’s cancer in my lungs and my bones. But my kidneys are the problem – they’ll pack it in maybe three or four months from now.”

There was the option for surgery, something to relieve the pressure on the kidneys, but that would gain him a few months at the cost of great discomfort. His answer to that was a clear no.

“When it’s my time, then I’ll go. They say the kidney thing is pretty painless, and I’d prefer to go that way than spend my last few months with even more tubes in me.”

So he began enjoying his last months.

He and Mum went out for big breakfasts. They planned a trip to Melbourne to see some musicals – a lifelong passion of theirs.

They sold off their two cars and bought a new one that suited mum. Dad cashed in some shares and put the money aside. He mowed the lawns and weeded the garden.

A couple of weeks later, he got a bit of a tummy bug and went to bed early. When he woke up, he was delirious.

So it was back to Accident and Emergency again, where Dad was now well known.

The doctors diagnosed an infection – maybe a UTI? – and put him into the Special Care Unit (SCU). I went to see him with mum that afternoon. He was still weak and sleepy, but able to hold a conversation.

Various doctors and nurses discussed his care and treatment with us. They wanted to install a central line to drip adrenalin into his heart, which would allow them to give him a bigger dose of antibiotics. Mum agreed.

I will forever be grateful for one particular doctor, who took us aside at this point and laid down the difficult truth.

“If the antibiotics work, he’ll be much better by tomorrow morning, and he can go home in the afternoon. But if they don’t work, which I think is looking likely, then you should be prepared to say goodbye. He probably won’t last for more than a couple of days.”

We were naturally pretty teary after that. But when we had to leave a little while later, Dad comforted us.

“It’s okay,” he said, “I’m cool. I’m cool.”

Yes, you are, I thought, even now.

I left the hospital and made a bunch of difficult phone calls to family members who were elsewhere – saying come home now. The clan jumped on planes from other states and countries.

At some point that day, my wife realised that dad was going to be alone overnight, so she went and stayed at the hospital.

He awoke several times in the night, often confused. Once he started calling for Zoey, his Jack Russell terrier, wondering why she wasn’t jumping into his lap like usual.

The next day, we started a roster to make sure he’d never be alone again. Because it was already clear that he wasn’t going to get better. The tests showed staph in his blood and his immune system was too compromised to beat it.

Now my wife and I had to come clean to our five year old boy. He was used to “Grumpy” being sick, but this was different.

We decided to tell him the plain truth.

Grumpy is dying. He will only be with us for a few more days. We’re all feeling very sad and it’s okay for you to feel sad too.

Then we all cried together and comforted each other as best we could.

After a while, we told our boy that we wanted him to be brave while we visited the hospital – put on a happy face, just for a little while, to make Grumpy happy.

He did it like a champ. Smiled and hugged his grandfather, talked at great length about dinosaurs, promised to be a good boy for Nanny, left the room with a skip in his step.

Then he took our hands, breathed out, and was sad again. Even at five, he understood it perfectly.

The SCU took great care of Dad. We tip-toed in, usually ignoring the signs about only having two visitors at a time, and gathered as a family around his bedside. New arrivals were put into the chair nearest Dad’s face so they could have a few moments together.

I got a text from my sister late that night, when she was taking a shift at his bedside.

Dad’s busy singing showtunes to stop himself from getting upset. Just had a rousing rendition of ‘Oklahoma’ before he went to sleep. Do come prepared if visiting!

By the next day we were getting concerned about being too loud in the SCU. There were a dozen of us coming in and out, playing ukeleles and singing. Should we move Dad to a private room elsewhere in the hospital?

Dave, the man in charge of SCU, wouldn’t have a bar of it.

“Please stay. We’ve had the privilege of looking after Jack this far, we’ve learned what sort of a man he is, and we’d like to see him through to the end.”

“But what about the other patients?” I said. “The Rheinbergers are a pretty noisy bunch.”

“No one’s complained about the noise. In fact two of the other patients complimented the young lady who sang ‘Molly Malone’ this morning. Just come and go as you please, you’re all welcome here.”

So here it would be.

The Doctor prescribed beer with Dad’s dinner, complete with a label so the nurses wouldn’t take it off him.

When my oldest niece arrived in the morning, she sat down to say goodbye to her beloved Grumpy.

“Eva! You’re here!” he said weakly. “I’ve seen you, so now I can let go.”

“No you can’t,” Eva replied, “Nicky J hasn’t arrived yet! He’ll be here by midday, so you’ve got to hang on for three more hours, okay?”

“Okay sweetheart, whatever you say.”

He promptly fell asleep again.

When Nicky J arrived at miday, Dad woke for long enough to murmur a goodbye. When I came back to the hospital that afternoon, Dad was asleep, his face blank, chest rising and falling like a metronome.

He’s gone, I thought, that’s just the machinery ticking over.

We sat and watched the machinery tick. Deep gasping breaths with long spaces in between, the spaces gradually growing longer.

My brother and I took turns swabbing his mouth with clear apple juice, keeping it from becoming dry and uncomfortable. A ritual which allowed us to feel useful. A small demonstration of our love.

And finally, later that night, the ticking stopped. He gave a final sigh and let go.

Ten minutes later he gave a sort of coughing noise and scared the hell out of my sister, but the nurses explained that it was just his body settling.

The family gathered at his bedside to say goodbye. We touched his face one last time and gave him into the care of the funeral home.

My father was very well known in Hobart, so I’ve had endless people express their sympathy since he died. And in reply I generally say that though I miss him terribly, he had a good death.

He knew what medical care he wanted and what interventions he didn’t want, as did his family and his doctors. So a lot of the possible decisions were already made. This is enormously comforting in moments of stress, where medicine tends to err on the side of keeping someone alive no matter what.

His pain was kept at minimum. Even when when he was unconscious, his dosage was adjusted to keep his breathing from being too strained. This was a blessing for both him and us.

He had enough time to organise himself and say goodbye to the people he loved, without it being drawn out and painful.

But perhaps the greatest contribution to his good death was his good life. Jack lived with integrity, so there was no unfinished business for him – no person he had hurt without apologising, no relationship that needed mending, no wrong he had done that would wrack his last moments with guilt or shame.

Jack was a man of honour, I have no higher compliment.

Rest in peace, Dad.

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  1. Joel, I only know you through Nerdzilla, but I thank you so much for sharing this- even though my eyes are now streaming with tears for a man I knew even less. You honour your father well.


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