A year ago today, I was sitting at my desk preparing for a huge Thursday and Friday when I got a text message from my stepmother Rose, “Dad in hosp emergency fell on carpet 4am bad headache being checked. Will keep you informed. X r” I slumped physically. This could only mean a bleed on the brain. For Dad, that was incredibly serious. He had chronic myeloid leukaemia (CML) and he bled very easily.
Clotting is something we take for granted. In Dad, it did not work at all well. A simple scratch would take an uncomfortably long time to stop bleeding. Cleaning his teeth could set off gum bleeding. A bleeding nose was worrying. His body leaked in this sinister way and it was unsettling. For dental work, Dad would need a platelet transfusion the day before. Surgery was out of the question and meant he had to endure painful arthritic knees that were long overdue for replacement. His leukaemia led to chronic tiredness, which made Dad even quieter than he usually was.
Dad had been on expensive treatment that took weeks to obtain. It was not an overnight cure for his atypical form of CML but it had made some difference. In that month he had been able to walk around Dove Lake in Tasmania and survive a fall that gave him a big graze. He had renewed energy and the night before his bedroom fall, had had a lovely night out with friends, almost back to his jovial self.
But sometimes death comes from the most simple of activities. And it did for Dad. A faint in the bedroom set off a catastrophic bleed to his brain that no intervention could stop. His subdural haematoma was bilateral and they made the considered decision to not operate due to his bleeding risk, hoping it would abate. By 6pm when I arrived he was in the emergency department awaiting transfer to neurosurgical intensive care. But in retrospect, I see that at that time his level of consciousness was on a rapid downhill slide.
I see that evening as a series of events: He shields his eyes from the light and dry reaches, I look for a buzzer to call somebody but can’t find it, a nurse finally arrives to give Dad morphine for the headache, Dad crashes, “Dad, wake up, wake up Dad”. The Narcan fails. “He’ll need to go to resus” says the doctor urgently. They unlock the bed wheels but the decoupling of monitors and releasing of bed breaks is stalled and chaotic.
There is an undignified rush to the resuscitation bay where staff to patient ratios have increased eightfold, we are ushered into a waiting room, the head of ED arrives and screws up his face as he tells us of Dad’s fixed pupils. I fall apart. A kind volunteer offers me and Rose a cup of tea. The neurosurgical registrar seeks our urgent consent to operate, we mention his living will and desire for quality of life, the registrar gives us a fixed stare. I feel abandoned to this decision and wish he had been taught about shared decision making. Now intubated, we kiss him goodbye.
Leaving, we notice another patient in the cubicle next to Dad’s. Lying flat on his back, his face is the colour of marble and he looks terrible but no staff are attending him. Quickly we realise it’s a mannequin. Dad would’ve laughed uproariously.
Hours later, Dad returns from surgery where they tried to address the haemorrhage. His head is shaved and sutured like something out of a science fiction movie. We update family and get a few hours of sleep.
Rose and I arrive back in ICU the next morning. Dad remains deeply unconscious. When they organise a family conference with the social worker, two junior doctors, his nurse and the head intensivist, you know it’s about turning off life support. I learn later this is called the ‘black hat brigade’. With these sombre companions, we search the brand new ICU complex for a quiet room.
When I studied doctor –patient communication during my PhD, there were entire chapters in the Medical Library on how to deliver bad news. The head of intensive care did it well. He was straight and didn’t muck around. “I’m afraid we’ve reach the point of no return”. His compassion, his body language, what he said – everything made it easier. His life support would be turned off and he would die. But when? There are siblings overseas. In the end, he guided us in putting Dad first and giving him a death with dignity – to leave some time to say goodbye but to not draw things out.
So the next five hours was spent quietly with him. We mulled in the room, holding his hand, kissing his temple, being there. I was in constant contact by phone with my four siblings in Paris, Hong Kong, Brisbane and Melbourne. I held the phone to Dad’s ear as each of them said their last goodbye.
They turned off Dad’s ventilator at 4.30pm and he left us fairly quickly. His beautiful voice uttered its last groan as he exhaled one final breath.
It was the voice that had sung to me as a child “I see the moon and the moon sees thee, shine on the one I love”, or “Happy Birthday dear Julie” each morning of my March birthday. He was gone and I felt a strong sense that he wasn’t there anymore and it was time to leave.
His funeral was a joyous one, a celebration of his life with all five of us kids singing Neil Young’s Old Man and many tributes read. The crematorium chapel was packed.
At the funeral, I conveyed a few small memories that seemed to capture him well. His hand tremor that made us (and him) glad that he wasn’t a surgeon. He was a superb driver, and I always admired the way he would deftly edge in between cars to change lanes – all grace and calm competence. He had a cheeky sense of humour and especially loved telling the Wide Mouthed Frog joke, fingers stretching his mouth across to play the frog. He was quiet but loved just being around people – us kids, his 12 grandchildren, his many friends. He was a superb host and after a few wines was loquacious and fun.
He was also wise and pragmatic. He and mum divorced in 1975 but in the process, felt that the lawyers were trying to drive a wedge between them, so they fired them. They remained friends until his death. As branch manager of a paper merchant company, he described his management style as “benevolent autocracy”.
He was also extremely principled. He had been heavily involved in a rotary club which automatically appointed the local primary school’s principal to its board. When a new female principal was appointed, she was unable to serve on the board because at the time Rotary was for men only. Dad resigned from Rotary in protest and never returned. He was a gentleman, always leaping to his feet when a woman walked into the room and always opening doors. He also had a bite and could be pretty tough with you, although mellowed in his later years.
He was generous and humble. In his retirement, he volunteered for Meals on Wheels for many years, driving round with an esky of soup and hot meals in the boot, getting to know all the homebound and lonely people in the area. Then each week he would call the bingo at the Exodus Foundation and fondly regale stories of the colourful characters there. When he left Exodus he did not want his departure marked in any way, his modesty preferring to avoid fanfare.
Dad went at age 77 years. It was too early and seemed unfair. Many of my friends and colleagues are also losing their parents, and for some 77 is still a generous lifespan. It’s still hard to believe he is gone and, one year after his death, it seems fitting that I pay tribute to him.