Don Mackay was born in Moree, NSW, in July 1950, the youngest of the four Mackay children. His father worked for a construction company during the building of the Snowy Mountains Hydroelectric Scheme. Don’s first memories were of men (mostly refugees from the war) teaching him to swear in many different languages and sending him home to repeat the words to his parents.
Don’s brother, Ian, has a favourite story from their youth.
“When we were just kids…I had just shot a frog and Don said, ‘Give me a shot.’ I gave him the slug gun and he said to me, ‘See how you like it,’ and promptly shot me in the foot.”
The family moved to Swansea, near Newcastle, which was where Don developed a love of the beach. He could swim like a dolphin and surfed on a long board. From there the family fragmented. Don and his parents later moved to Port Hedland in Western Australia, which Don loved.
When Don was 15 his dad died of cancer. This sudden family tragedy prompted him to head a year later, in 1966, to Blackwater Mines, 400kms west of Rockhampton in Queensland, where he worked and learned to live life in the present – it was this quality that Don and I would later recognise in each other and be attracted to.
In 1969 his heavily-pregnant sister, her husband and their son were killed in a car accident—hit by a drunk driver. The family, once so rock-solid, was fractured by all this tragedy in such a short space of time, and yet despite these dreadful events, there was no self-pity in Don.
Such bravery would stand him in good stead in the years ahead.
We met at the Star Hotel in Newcastle in 1972, and joined forces about three weeks later. It felt like a sense of coming back home. He was so familiar to me. Melissa was born in 1974. At the time, Don was working for a company installing underground petrol tanks and bowsers all across NSW and his boss offered us the use of a large caravan so Don could be with us while working. Being close to family was always a major drive with Don. He craved that intimacy and the surety of home and of love.
We had a wonderful 18 months in that caravan. There were few areas of NSW we did not visit. Blayney in winter in an uninsulated caravan was certainly an experience. We moved to Port Macquarie in 1976. When Alison was born in the following year our little family was complete. We lived in a small house on the edge of town. Chooks, ducks, a dog called Boris, cats, Don’s horse ‘Lucky’, two little girls and just enough money made this a happy home for us. Don worked on building sites, drove a backhoe and truck, and was able to turn his hand to most things he tried.
Then, one sunny day in January 1982, life changed.
Don was working on the canals at Settlement City, Port Macquarie. He and a workmate were told to get into the water and remove all the timber shoring in case kids jumped in on the weekend. He told me he was happy to be in the water because it was January and a very hot day.
Don could never figure out what he hit when he dived into the water. Before the lunch break, the bottom of the canal had been as smooth as a swimming pool and deep. He later thought he may have hit a hump of sand from a dredging operation upriver.
But whatever it was, it broke his neck.
Don was conscious the whole time, which saved his life as he was able to tell people not to move him. Sadly he knew what had happened as he’d once seen it happen to someone else.
Later that night, the girls and I were down at Royal North Shore Hospital. A Spinal Specialist told me Don was a Quadriplegic – that the spinal cord was completely severed. Don stayed in the Spinal Unit for seven months, during which Melissa, Alison and I moved to Sydney. For years after I had vivid dreams about our first home – the chooks, ducks, cats and the dog called Boris – perhaps a link to sanity in chaotic times.
Don had received a fair settlement because he was injured at work. With this he bought a home for us and a commercial building as an income-producing investment. He kept that building fully tenanted for almost all of the 20 years we owned it. He paid for all his own nursing costs and all his own equipment as he believed that by doing so he freed up the system for those who could not pay, despite being clearly entitled to such.
That was Don.
Despite his physical limitations, Don looked out for not only his mother until her death in 1997 but also mine, and was always quick to see when others had difficulties. He had a great compassion for those who were suffering illness or other problems. When his beautiful sister Judy was dying from cancer he and I spent the last three months with her, only leaving a few days before she passed away. This was a special time and he spent many days quietly sitting by his sister’s bedside, talking and laughing about family.
In 2004, we moved out of town to a few acres. The sense of peace we drew from this beautiful place still sits in my heart. On those few days when Don was pain-free he would comment on how wonderful the day was.
As the years went on, though, his pain became much worse. His courage and endurance—still being able to be concerned about others, smiling, fooling about, being involved and interested and most of all never complaining—was truly wonderful to experience. There was nothing middle-of-the-road about him. As many people didn’t like Don as did. He couldn’t hack snobs and truly believed in an egalitarian society, “where all people really are treated equally” were his words.
Our world was so precious to us but it was also terribly fragile, and we knew it.
Don understood it was unlikely he would live the longest of lives.
Towards the end of 2006 I first began to notice a change in the way Don was breathing.
He was visibly struggling to get more air into his lungs and at times his lips lost colour, more than once becoming tinged with blue.
Don’s doctor suggested he might have Sleep Apnoea—a condition that causes one’s breathing to stop for intervals of more than ten seconds at a time during sleep. He attempted to continue life normally, but as his breathing became shallower he found it harder to get his sentences out. His tiredness was such that some mornings he’d fall asleep, his breakfast spoon still in his hand. I’d been with Don for 35 years at the time and he’d been in a wheelchair for 25 of those years, paralysed from the neck down – he had never been this ill.
In February 2007, several months after I first noticed his breathing problems, Don went for an x-ray and ultrasound prior to being admitted to hospital for routine bladder surgery. The radiologist spotted fluid pooled in the pleural lining (a thin lining around the outside) of Don’s right lung.
Had Don undergone surgery in this state it was unlikely he would have survived.
A week later, the hospital’s radiologist and doctor performed a partial drain of Don’s lung (a complete drain would have been fraught with danger) and for a short while Don’s breathing was easier, but he had become so frail that soon he began to struggle again.
Given that as a young man Don was so very much a part of the land, water and air, revelling in the natural world, years later the failing lungs of my brave husband represented the cruellest irony of all.
A month after the lung drain, we harassed a young locum into organising a CT scan. The scan showed that the fluid in the pleural lining had re-accumulated. Local doctors liaised with staff at a major urban hospital and it was decided to send Don in as no one was willing to perform the necessary lung drain and biopsy procedures locally.
On April 10 Don went to the local base hospital knowing he was to be transferred by air to the city the next day. Before Don left our local hospital, a physiotherapist did a Spirometry test on him, measuring the air capacity of his lungs. In the results the physio wrote “lung age of over 100 years”.
Don was 56-years-old.
At 10pm on the April 11, 2007, Don arrived at a major city hospital. He was immediately signed up for three procedures—two of which we were fully aware (a drain to remove the fluid from the pleural lining and a biopsy to determine its source), but the third (a Pleurodesis procedure, which uses a powder slurry to stick the walls of the pleural lining together) was completely unknown to either of us.
As I was driving to the city early the next day, Don was in surgery having the Pleurodesis performed. When I arrived, he told me the hospital staff had not performed the standard pre-ops. He was clear on this and said that before the operation they had neither x-rays nor scans to go by—we knew they were still back in our hometown with local practitioners. No one knew anything about his multiple conditions before surgery. In fact, the first time Don had met his anaesthetist and cardiothoracic surgeon was in the operating theatre.
The first day after surgery Don appeared much better, but in the evening I noticed several things that concerned me. A few sentences came out in a disconnected way. He began experiencing pain in his chest but nobody seemed to react or show interest. Melissa (our eldest) came in to see her father on Friday April 13. The next morning he expressed hurt that she hadn’t come to see him. He was fast becoming confused and distressed. Later in the day he began saying a few more odd things and had more trouble breathing. It became a sort of panting and I noticed that his tongue was poking in and out as he breathed.
He seemed completely unaware of this.
More than once I drew a nurse’s attention to Don’s condition but was just told, over and over, “His SATs are OK”.
No one seemed to be actually looking at my husband.
Don’s quadriplegia made it hard for him to breathe while sitting upright. The staff on the ward were ignorant of this and ordered him sat up in his wheelchair. He rapidly deteriorated. I begged the Spinal Nurse to return him to bed but she refused. She told us we would have to wait for the ‘Lift Round’ (nurses and wardsmen who lift patients unable to move themselves) to return in three hours. I couldn’t lift him as the bed was too high. He suffered three hours of extreme torture trying to breathe against gravity.
After this he began to hallucinate and gasp for breath. At 4am on April 15 Don had the first of his respiratory arrests. According to his roommate he called my name for three hours. I was five minutes away and had given the nursing staff instructions to call me at any time if he needed me or if things got worse, but I was never told.
The next five weeks in the hospital’s Intensive Care Unit were horror-filled. I try to remember him as he was before this traumatic period, but it is difficult. I see my beloved husband tied and gagged by tubes, both lungs drowning and full of fluid. MRSA (Golden Staph) and Klebsiella Pneumonia filled them with bloody mucus. I still see him with his tongue being forced painfully in and out as he reached another respiratory arrest. One time his breathing reached 50 breaths per minute. He was so frightened and I could not help him.
Finally, Don was allowed his wish: to leave the filth and chaos of the hospital, go home and die. The wish was granted with a condition: that the respirator be taken away as soon as he got home.
With all the family gathered, Don indicated to the doctor who attended our house that he wanted to keep the respirator for a little longer. He only wanted a few more hours to be with us all in his own home. I believe it was his right to keep that ventilator till he was ready.
“I have to take it,” the doctor told Don as he disconnected the ventilator.
To this day I don’t know why I didn’t act.
It was as if we were in shock.
I remember I couldn’t feel the skin on my face.
Don died two hours later.
I have tried every avenue within the system I can think of to expose what I believe were critical errors in the way Don was treated. I contacted our local MP; I commenced a case with the Health Care Complaints Commission who declared that all treatment was “acceptable”; I approached the Coroner’s Court to hold an Inquest; I even took part in a major inquiry into the public hospital system
It is still my firmly held belief that Don was shamefully treated by a variety of health professionals in a hospital that was both filthy and chaotic. An unnecessary and dangerous procedure was performed on him which, in my opinion, led directly to his death. During and after all of this there was a breathtaking lack of honesty and openness about his treatment.
From my experiences, I believe the system set up to investigate medically-caused injuries and deaths does not work. Time and time again those who are the victims of gross medical negligence never receive justice. The system is a construct that appears to work until you try to get through the maze thrown down to protect hospitals, doctors and medical staff. This bureaucracy actively works against the interests of the people injured and killed inside our medical system.
In Don’s case there has never been an explanation for the dozens of bizarre actions and errors that caused him so much suffering and that to all outwards appearances eventually killed him.
I do not believe Don died naturally.
All I want is justice.
When I think of Don these days I remember a smile or a laugh at some silliness from our shared life. I consider myself very lucky. I have had what most people often only could hope for. I have been loved by the best and nothing anyone can do can take that away.
I will leave you with these parting words (from my book)…
“So now, my lovely man, I gather up the cards, as you would have done, and throw them high in the air behind me, never looking back and ‘let the devil take the hindmost’.
“I will go forward, still grieving terribly but full of hope for our daughters and grandchildren who will carry the spark I held so dear. I have done my best, Don. I have left no stone unturned. I have loved you forever and will always do so, and nothing mankind can inflict upon me can take that away. The late winter sun is going softly down behind those trees you loved to lie out under. There is a chill in the air. It’s a gentle time of the year and not long now till the spring comes.”
Learn more about Therese and Don Mackay, and her book at www.withoutduecare.com