Its a long wait and still hopeful that out of the 18 manuscripts sent out with six returned I am still in there with a chance.
Two publishing companies said they were too small to take on this sort of book…they were two man operations… Simon and Schuster said “We found it gripping, shocking and moving, as well as well written. Unfortunately, though, we have decided not to pursue this for our present publishing list as we feel the market for this book would be restricted to NSW…” so I am going to try to downplay the NSW bit and use the word Australian more.
Wakefield Press wrote, “Thank you for your submission. This is a powerful and tragic story and I offer you my sympathy. No one should have to suffer as you and your daughters have done. And sadly I know that the issues addressed in your story are not yours alone. It has been assessed and unfortunately does not suit Wakefield Press’s publishing list.”
Penguin was not accepting unsolicited manuscripts. MacMillan just wasn’t interested apparently and sent out a form letter. Random House suggested a book and told me where to get it and the book lists all the world's publishers and what genre they accept...advice which i will take. I don't give up easily, but especially not on something as important as this. I think apart from being a mother, and loving Don and family this is the mopst important think I have and probably will do...so worth sticking with.
I have enclosed a chapter here....the manuscript is 266 pages long...and a lot had happened and been done to Don before this chapter. Some medical terms were explained in previous chapters, so if medical issues don't make sense they will when the whole thing is read. This chapter only covered a couple of days in ICU...Don was there for over five weeks to put things in prespective. It is not a nice read, and I suggest if you are feeling a bit down or sad not to read it... any feedback appreciated. It has clear paragraphs etc but the format was jumbled a bit when i pasted it in here...still learning
When the phone call which should have been made hours earlier came at about 4am, I rushed up to ICU. As I made the short walk, I called Melissa and Alison and then my sister Veronica. I wasn’t allowed into see Don straight away, so I phoned his brother’s house and spoke to his wife. They live in
Don was in ICU from 15 April until the afternoon of 17 May 2007, when he was ‘discharged’ on a ventilator. We were told the ventilator would be taken away as soon as he arrived home and that he would die a few hours later. This provision was the only way they would work towards getting him home. As Don knew he was dying and had a horror of dying in RNSH, he took the offer.
I have spoken with our daughters and my sisters about this five-week period, and especially that dreadful last day, and we agree that it was as if we were all just going through the motions in a state of shock, such that it all felt unreal and surreal. Some things which happened in those last days are only just starting to sink in for us. I had whole periods when the surface of my face felt either numb or prickly, and at night when I looked at myself in the mirror, I felt like I was looking at a stranger, a robot who had my face. It was bizarre. The atmosphere in our part of ICU was that of total chaos. There seemed to be a shifting sea of faces, with nobody wearing any name badges. It seemed almost like a sensory assault at the time. My sister Veronica likened it to the painting by Hieronymus Bosch ‘The Temptation of St Anthony’. (See photos)
No matter what happened to Don in Spinal, and it was an awful few days, the five weeks he spent in ICU was the stuff of nightmares. He suffered dreadfully. I watched my husband’s sister Judy die painfully from cancer over a three-month period, which even the palliative care nurses involved described as a ‘disaster of palliative care’. That experience was graphic and shocking. But this was different. It was so impersonal; dehumanised. Everything followed a set process, and it seemed the process was much more important than the person suffering. There was little compassion shown to my brave husband. At least the people surrounding Judy were filled with love for her. The nurses were kind and the doctor caring, as they should be.
Don would not have ended up in ICU at all if he had had, as a member of the Spinal Outreach team which once visited us in Port Macquarie told me she expected he was being sent to RNSH for, “a simple lung drain and biopsies”. She spoke at some length about this to me soon after Don died.
There is not one bit of doubt what caused Don’s respiratory arrest. Most of the ICU doctors and respiratory doctors mention failed pleurodesis in their notes. When I asked and asked them over those five weeks, not one of them would tell me the truth. Yet their notes are damning as to the cause.
Don’s suffering in these five weeks was so shocking to watch, so awful, that I have trouble remembering a lot of details. What I do remember is hard enough to bear. It was as if it was just one long, continuous, never ending day; a day full of filth, cruelty and the unbearable pain of watching my lovely husband suffer more than I thought anyone could. Judy’s son Rod summed it up in a recent email where he described his impressions of ICU and Don’s treatment. It all just flooded back in a wash of what I can only call horror. Somehow, maybe for my own sanity, I had forgotten the worst things.
“I recall arriving at the RNSH approx 10.00pm Sunday night… after talking to Melissa that afternoon I could tell that things were not good, this why I flew down from
When I returned the next morning I remember I was actually appalled by the state of the hospital, it was filthy. The floors, the walls, the toilets, the elevators you actually felt you were in a third world country, I clearly remember thinking this. Then there were the nurses, one man (this is in ICU!) who could hardly speak English. Not one was helpful in explaining Don’s condition. The doctors, well they seemed non-existent, apart from one tall doctor; however she would not even acknowledge you were in the same room. The next couple of days all I tried to do was be with Don and talk about old times. Not once did a nurse or doctor try to comfort Don or explain what was going on with him.”
When I read this, it all flooded back. No one explained anything. They thought they did, as I read in the ICU notes that we ‘understood’ everything they said, but their so-called ‘conferences’ were a joke. We were not informed when Don contracted MRSA and he was moved to another part of the ward. I had to find where they had moved him to. I was not told when the MRSA and then the infection Klebsiella Pneumoniae went to his lungs until about four or five days later when a nurse happened to mention it because I noticed her suctioning up bloody mucus from his lungs. ICU at RNSH felt like a madhouse with the inmates running the show. I sometimes felt that the patients and relatives were the only sane people there. There were many times and incidences too numerous to mention when I was kept uninformed and Don, who could hear and understand, was just entirely bypassed. He had no rights at all. The reasons for the extreme agitation he displayed in there were never explained to us. There was a certain amount of juggling about with his medication for extreme pain and his anti-anxiety medication, which would not have helped, but we were not told about that either.
All the time Don was in ICU, even though I asked many times, I was never told the cause of his original respiratory arrest in Ward 7D, and never told why he was unable to manage off the ventilator and had to be reintubated five - or was it six? - times. I lost track. A good quarter of ICU notes, from both doctors and nurses, are illegible, which is dangerous as a day or two after being written it would be impossible for other staff to really get the full gist of what had happened and what had been written. This just added to the lack of continuity. But now I have read their notes, or the ones which are readable at any rate, it is clearly evident that the doctors and nurses, and most importantly the respiratory doctors, knew exactly why Don had his first arrest and remained reliant on a ventilator until finally he was so diseased, so septic with their infections, full of fluid, his lungs full of hospital infections, that he was ‘discharged’ to die. Unbelievably, Don does not appear in the death rate of that diseased hospital; he was classified as a ‘discharge’, not a death.
Frequently the notes say his respiratory arrest followed a failed pleurodesis, or words to that effect, and that he had developed ARDS following an inflammatory reaction to the talc. They all knew. Yet when I asked one of the respiratory doctors if the pleurodesis may have caused my husband’s condition, he became aggressive and told me I was spending too much time worrying about this and should worry about other things. I said to him that he had no reason to speak to me like that and if it were his wife or child in here like this, how would he feel? Later he came back to say he was “sorry I felt that way”. Not exactly an apology. Melissa and Don watched this exchange. She was very angry and I have no doubt in the world that if Don could have raised himself out of that bed he would have laid that unctuous doctor flat for talking to me the way he did, with hands on hips and pelvis thrust forward in a very aggressive and intimidatory stance. Not one you would expect a doctor to use in front of a dying man and his family. But in the notes, this doctor wrote exactly what had happened to Don. At the time I asked him, he knew the truth. He refused to answer me. He should be called to account for that.
I thought it was a legal requirement that doctors fully inform patients about the cause of their condition and every relevant bit of treatment decided upon, every infection. In fact, we are meant to be kept fully informed at all times. But as it was, they only included us when they wanted a signature on a bit of paper or if we demanded to know so often that they would call one of their damn conferences as if they were doing us a favour. Just having loved ones in Intensive Care shattered relatives, without this sort of treatment. One day I asked a young man, whom I found in tears in the waiting room, what was wrong. His mother had been badly burnt and he seemed to be always on his own. He was terribly worried about her and, like me, in shock. He said that when anyone tried to get information out of them about a relative, “they act as if you are trying to steal their lunch.” This was spot on. It was as if you had committed an offence, or needed placating. There were few exceptions to this that I saw.
Furthermore, the duty doctors seemed to all disappear after about a week and a new set would come in. As the notes were so poor and illegible, mistakes in times and dates were made and perpetuated by sloppy record-keeping. In the notes, Don went from having a diving accident in 1982, which was fact, to a driving accident in 1988, to having a driving accident in 1982. Then they got it right, as a diving accident in 1982, until the last doctor flipped it back to his being a quadriplegic for only 15 years. Even in sorrow, you have to laugh. In between the tears I would find myself starting to laugh like a crazy woman. They made so many and such stupid mistakes, and even tried to tell me (incorrectly) when the accident had happened – as though I wouldn’t know! This is just one minor example. The HCCC later stated that much of the information we requested was passed on ‘verbally’, but we experienced little of that – and anyway, how does the HCCC know that, I wonder? Maybe because the doctors and nurses involved said so.
Don became what they did to him, and by the end not one of the staff had any idea of the original person who entered that place.
One nurse, the soul of tact, even said to me over his bed, when he was wide awake and could hear, “Is he always like this?” I don’t remember my answer, but when you muck about with ventilators and drugs, bugger up fluid and take so much blood the haemoglobin levels were too low most of the time, why would an ICU nurse not have the common sense to comprehend what had been and what was being done to him? It’s got me beat.
Not good enough for a ‘modern’ Intensive Care Unit in 2007. It’s probably still the same in 2009. Nothing I have seen, understood or been told gives me any faith that a patient in the same condition as Don would not be treated in the same disgraceful manner today. As far as I know things as bad as those that happened to Don have happened since then, are still happening now and will continue to happen - because there is no one to stop it. There is no effective body to make the hospital and its staff accountable. No will to comprehend what it is they are doing to people and their lives inside that dark metropolis.
I have also noticed that when I go through the notes, I can’t find Don’s ward and bed changes noted. He had four position changes in ICU and yet there seems to be no mention of when these happened and to which bed he was taken. There’s no real central nurses station which serves all of ICU, so when you turn up to see anyone in Intensive Care and they’re not where you last left them, the first horrible thoughts are accompanied with a sinking feeling, “Has he died and they haven’t told me?” - which is entirely possible in that place, based on past experience.
I am sure most staff in ICU had no idea that when Don was admitted to
One time, when a nurse was suctioning Don a part of the equipment fell onto the floor. Melissa and I saw that nurse pick it up and put it back in my husband’s mouth, bold as brass. This was only days before the bacterial infections MRSA and Klebsiella Pneumoniae invaded his lungs so disastrously. Later, friends of ours saw another nurse do exactly the same thing, not too long before Don died.
Another time Melissa and I noticed that Don was very nauseous. We saw a lot of clear fluid coming out of his mouth and running down into his beard. We called his nurse over to suction him so he didn’t choke. She was quite begrudging and on her way over complained that she’d just suctioned him. She did it again and then just walked off, leaving us to clean Don up as best we could. Then we saw it happen again and had to call her over once more. He was her only patient, but she was quite angry. We told her he was really sick and asked if she could give him an anti-nausea medication that worked well for him at home through his drip. By this time he was wet from this fluid from his mouth running down his neck, behind his head and underneath his shoulders. He was cold and shivering, feeling really ill. He had so many tubes, we asked her to help us clean him up because we were afraid of disconnecting something. She told us he’d have to wait for the lift round. That was that. We cleaned him up and got under him as best we could and he watched our faces with the saddest eyes. Poor Don. How could she do this to him? How could she act so horribly towards a suffering and dying man? Who knows what her name was? Melissa remembered that she was “a harshly spoken English nurse”. Melissa's words. This nurse was horrible to Don and very slow to act in any direction. Some of them seem to even resent being at work at all.
Here again, my sincere apologies to those nurses who cared. They carried the others, and did their best to be compassionate inside a disgracefully run, run down public hospital. I remember a small fair-haired nurse who always sorted out the cables and tied them together and got the room in order first. I remember a dark-haired one who wrote lots of notes and really took notice of what was going on. There was a tall slim one who wore her long pants on the hip and was excellent and another who covertly told me about the ‘Top Secret’ pressure area.
The staff had hidden from Don and me that a pressure sore had developed under his scrotum, but this one nurse had the decency to tell me, after her shift caring for Don ended. Why they thought it acceptable and correct not to tell us is hard to decipher. Any pressure sore developed in hospital is caused by bad nursing practices. That’s it in a nutshell. No excuses. If I, basically alone in the house with Don for all those years, could ensure he never had a broken area of skin, or pressure sore, even when he spent six months straight in bed, how on earth could this happen in Intensive Care, with shifts of nurses and one nurse to each patient? And what purpose and whose purpose did it serve to hide it from me?
There were others too over the long five weeks but I am sorry, I can’t put any names to faces because none of the staff had name tags. How they work in that system cleaning up the messes and mistakes others leave for them is a miracle.
As I go through the notes for each day, almost all the nurses have written that Don was ‘agitated’ or ‘extremely agitated’. The cause was never explained. As a C5/C6 quadriplegic, when Don was upright in his chair he had a little arm movement, no hand movement and little strength. Confined to bed, Don’s arms were even weaker. But almost every day, Don’s arms had to be tied to the bed, and he would be constantly pulling on the restraints. Sometimes the agitation was so extreme he would be able to lift his back off the bed by pulling on those restraints and this would go on for hours, often all day. He had never been able to do that in the whole time since he became a quad in 1982, and then he was a young healthy man. This went on for five weeks, and it was awful to watch.
Even I had to tie his arms down on the really bad days, every time I left his bedside because he tried many times to pull out the ventilation tube and he would get his hands all tangled up. I hated tying his arms down. I tried to do it as gently and loosely as possible so he didn’t feel so restrained.
I knew his agitation had many causes. A lot of it was just uncontrollable movements, and he was on so many drugs often he was not truly with it, although he understood me and we had a lot of eye contact. But I know also that he wanted those tubes out. He knew the consequence of this was death - full stop. He had asked me some months before that if ever he was unconscious and on a ventilator, I was to make sure he was taken off. No quadriplegic was going to survive the massive damage done to Don’s lungs and he knew it. I knew it. The staff knew it too. I am stumped as to why they would not admit it. He did not want to be like this. Being a quad, a slight flu is enough to kill. Don was never going to recover from the massive damage pleurodesis did to his lungs. I know – not believe; know – he knew that and that he had made his decision and wanted out. Removing a ventilator from a morbidly ill person is not euthanasia. Euthanasia is actually introducing something which actively causes death. There is a huge difference.
Don had the right. But they kept doing what they were doing, holding out little slivers of hope, in a hopeless situation. Some of them knew what he was doing too. But I saw almost nobody medical give him any comfort for the misery of his dying. There were a few notable exceptions.
At this time NSW Health was not just broke, but deeply into the red. After his death I was told by the
RNSH is well known for its high level of “bed to bench” research. Something Prime Minister Rudd has rewarded financially at a time when NSW health is in debt to suppliers of services right across NSW. As of September 2009 (ABC News 14 September 2009) NSW Health is in debt to suppliers for over $70million and suppliers are considering stopping supplies of bandages and other things, yet there is a billion dollars for research on top of what they already have.
On 10 March 2009 the Sydney Daily Telegraph reported:
Prime Minister Kevin Rudd is to approve a $1billion rollout for a network of medical research units across
A mass bailout of the hospital system now appears to be unlikely with the PM said to be unwilling to throw money at the NSW Government to fix its Budget problems.
Instead, sources in
Don’s agitation was often accompanied by hallucinations and I would see him follow things around the roof of the ward, and fixate on something as if it was moving or alive. He was obviously terrified of whatever he was seeing – always in the same area of the room. I would quietly pat his shoulder, say his name softly and he would look at me and drop his shoulders in relief. For that moment he would be not seeing anything but my face or Melissa’s but soon he would be back in the nightmare world he alone could see. There were weeks of this. It was especially appalling for him and for those who visited. There was nothing we could do to stop it. But during those days when I sat with him with my hand under his neck, warm and touching, he and I knew. There was a lot of very deep and lucid communication. Remembering the days spent like this brings tears. I wonder to myself, why didn’t I just stamp my foot and demand to see the head of ICU and ask that he go to Don during his good hours and ask Don what he wanted? How many nights have I dreamt that this is what I did? I don’t even recognise the ‘me’ that was there at times. Having to come to terms with this has been the hardest internal battle I have ever fought. Writing this now in 2009, my heart breaks open again for Don, Melissa, Alison and for myself. I have learned to deal with shocking memories which crawl out of my brain like maggots. Going to sleep each night, I pray it will be light when I wake. The long nights bring too much thought and suffering. This is the legacy I have been left with. I have no doubt that my girls also suffer. But I hope not to this degree.
Much of the time, the tube in Don’s mouth was tied around the back of his head to hold it in position. The edges of his mouth were red raw and sore at times and the skin of his mouth was all sloughing away from the Candida Albicans(or thrush) infection which was throughout his digestive system as a result of the very strong antibiotics he was on.
The only tooth left in the front of Don’s mouth had been knocked out of position at the time of the first respiratory arrest, presumably when doing the emergency ventilation, and left in a sharp dagger in the front of his mouth. (Don had lost all his other teeth due to the medications he was on, and had false teeth.) He lacerated his lips and fingers from this razor sharp, broken tooth. His body became so swollen it was horrible to see, the skin stretched so tight with excess fluid I thought it would just split open. Don’s reaction to unrelieved pain was Autonomic Dysreflexia, and one blood pressure reading I noticed was 214/110, which for a quadriplegic is shocking as they sit usually on 80/50. Don felt intense pain internally, and with all the swelling he had to be suffering. Although he’d only had a moderate right-sided pleural effusion when he left Port Macquarie, the pleural lining of both lungs now had fluid in them. But it was not just fluid; they were also full of infection, which was blood-tinged from the pneumonia and the MRSA. His lungs crackled with these infections.
Don’s disastrous treatment – which I have only touched upon up until now, just the tip of the iceberg – was a horror story. It plays almost continually in my mind. Even when sitting around a table with people, there is little ease from these pictures. It feels like I’ve become two different people. One, the public face, is trying to hold calm. The other is private, one I can’t share. This person will sit on the floor howling with inconsolable grief. Not because of Don’s death. We all die. It’s the manner of that death. At present I feel so terribly damaged, as if I’ll never really be myself again. Occasionally I’ll find something so funny that I start to laugh out loud like I used to do so often. More often than not, the sound of myself laughing in the quietness brings tears and I end up a mess. If I found something funny or interesting, I’d come tearing to wherever Don was already talking or laughing and he’d listen and be interested or tell me where to go in his unique style. Sometimes we laughed so long together we’d have to try not to look at each other because it would set us off again.
I feel emotionally wrecked. Just wrecked.
Not one bit of this would have happened if Don had received the right treatment when he came to RNSH and been accompanied by his scans and x-rays and comprehensive discharge notes. And why include the word ‘pleurodesis’ in discharge papers when the only doctor to raise that issue had never seen Don and had no idea of what state he was in? It’s all one huge mess. It feels as if they murdered him, except that would imply intent.
Don’s death was the result of people being disconnected and disorganised, I realise, and not intentional. But once the damage had been done for whatever reasons, it appeared that those who knew covered up what had happened and extended his suffering with extreme lack of care and cruelty, not intentional I realise but it still caused Don such a level of suffering it has to be mentioned.