For Dad. Love Michael.

Ten Things I loved about Lucky. (In No Particular Order).

·       Dad was always there to help me repair all those broken-down cars I had collected. And with endless good humour and patience. I distinctly remember a motor we rebuilt for the Ford Consul. The motor, unfortunately, never had a chance to live up to expectations. All because I then rolled the car.

·       Dad worked at sea on the State Ships as a marine engineer. We would wait for Dad's ship at Robb's Jetty. a boys-own paradise of sights and sounds. After the cargo of cattle was unloaded, we would board the ship between Robb's Jetty and Fremantle. Everything about the ship was really big and I loved exploring all the nooks and crannies. I was particularly fascinated by the anchor chain locker and the propeller shaft. And that on the other side of the hull was the ocean.

·       July 2010 was one of the darkest periods of my life. Kate and I were north of Perth, on the bush block at Wanerie. I'd had a breakdown and was anxious, desperately sad and skeletal. Dad, at the age of 83, drove up to Wanerie, slept on a camp bed with a swag and stayed for three days. He came to look after me, to spend time with me, and support me.

·       Dad was always there in my younger and wilder days as well, bailing me out of trouble with the law on more than one occasion. And he never dumped guilt on me.

·       Whilst I was working in Port Hedland, as a reasonably fresh and not particularly eager mechanical fitter, Dad allowed me, after much grovelling, to borrow his beloved Holden HQ station wagon and trailer to take my 900 Kawasaki from Port Hedland to Carnarvon for repairs. I rewarded his faith in me by abandoning his prized car on the return trip after I hit a kangaroo on the Port Hedland side of Whim Creek late at night. At least the bike was repaired so I was able to complete the journey home.

·       With three weeks to finish on my apprenticeship, Dad talked me out of quitting in order to become a landscape gardener. 

     During yet another period I wanted to throw in my apprenticeship, Dad took me under his wing to work with him at the seafood works in Exmouth. He really did have to intervene fairly frequently to keep me on track.

     When I was working at Port Hedland Hospital as a mechanical fitter, I lived in the Green House at the entrance to the harbour. I would wave to Dad as he worked on the tugs heading out to sea to bring in the iron ore carriers.

    Dad's cautious and sedate driving was legendary within the family. Then came the day he was booked for speeding on Mount's Bay Road. He had failed to notice the 40 kilometres an hour road works sign and was clocked at nearly 70 kilometres an hour. He was almost labelled a hoon driver. That may have been Lucky's only blemish as a driver of sixty years. What a hero!

·        

·       The last ten days of his life were mostly filled with shared memories and lots of laughter. The best conversation I had with Dad whilst he was in hospital was telling him how much I loved him and that he was the best Dad in the world.

Dilemmas

This morning, our family gathered to farewell Lucky. Given his amiable, sincere and honest nature, the funeral service was absolutely packed. Michael wrote a beautiful tribute to his Dad -  but he was concerned the flood of memories may have overwhelmed him.

First dilemma. I had gently reminded him of this task for a day or so. If he did or he didn't compose a written piece for Lucky was irrelevant to me. The love and respect Michael has for his Dad is wound into his heart and soul. In the end, he dictated the words he wished to say to me last night.  He just wanted to express these emotions without breaking down. We organised a contingency plan. Which he didn't need. I was so proud of him.

These posts about Lucky's last days and his death I have composed has caused some angst. Lucky was a self-reliant and private person. And I understand that. But he was important. He counted. As a man who would have done anything for his family and friends, I believe he would have been distressed by the ordeal of his last day and would not want anybody else to suffer as he suffered.

Second dilemma. How much do I share? I have bitten the bullet and posted on this blog, on Facebook and I have written to the hospital, the Health Minister and the ABC. There will be those who believe I should not have gone to these lengths. However, I have been overwhelmed by the level of positive support I have received. And all the other stories that demand attention.

What happened to Lucky should not have occurred. We were promised dignity and comfort for him. This was not forthcoming. There was no palliative care plan for Lucky. Midland Hospital does not offer palliative care services. This has been confirmed by the hospital's Consumer Liaison. All to do with funding.

Yet, I have read and heard stories of peaceful deaths within hospital settings. If peaceful deaths can occur in hospital settings, why is this not the normal course of events?

Third dilemma. Death, although the end for us all, is still a taboo subject. Those of us who watch our loved ones experience more comfortable deaths are relieved and thankful for their lack of suffering. Those of us who witness the cries, the terminal restlessness and the obvious trauma of other deaths, such as my beloved father-in-law, are left devastated by these experiences.

I accept that I may be viewed as both whistle-blower and pariah.  But I am driven to follow justice. And I need to speak whilst my memories are raw and clear and savage.  If I remain quiet and honour Lucky's privacy above all else, then these awful deaths will be accepted as reasonable. When they are not.

And the total absence of comfort and dignity that Lucky experienced will be in vain.

For Lucky

To Whom This May Concern

My darling father in law died at five o'clock in the afternoon of 28 March. His death was not unexpected due to increasing frailty and the conditions of being elderly. What was unexpected was the traumatic nature of his personal path towards death.

He had been admitted to the Intensive Care Unit on 18 March via Midland Hospital’s Emergency Department. Initially given a very bleak prognosis, he seemed to rally for twenty-four hours. However, this rally could not be sustained and he embarked on a long slow deterioration.

He was given medication to support his blood pressure and heart rate. Daily blood tests painted a poor picture. As long as he remained on a drug regime that needed to be closely monitored, he remained in ICU. Faint hope for recovery gave way to the unpleasant inevitable – he was not going to survive this final admission.

Five days on, he became very anxious, battling to understand what was happening to him. A day of verbal accusations and uncharacteristic behaviour illustrated his fear and frustration. Here was a vulnerable elderly man facing death.

Weaning him off the supporting infusions took time. He was eating very little, drinking not much more and becoming increasingly agitated at night. Whilst he remained in ICU, there were nurses available to tend to him and give comfort to his family.

One of the consultants on ICU whom we liked and trusted talked a great deal about three words - comfort, dignity and family.

She assured us that he would be treated in a palliative environment that would concentrate on keeping him comfortable and dignified.

On March 27, he was transferred to an adjacent ward. Placed in a room accessed through an airlock, (an infectious setting?) the staff appeared to have received very little information and openly stated they were unsure how to nurse him. The first nurse we saw expressed outright frustration with the lack of a plan. We were quite astonished when we were questioned for his history by the ward’s registrars. Then, one of the registrars also remarked that this was the time to say goodbye.

My husband and I had agreed to stay with him overnight. There had been other family members coming in and out during the day. We were then informed that the nursing staff would no longer be performing observations. Unless we rang the nurses' bell, there would be minimal nursing support. All his drip lines had been removed in ICU. This was unfortunate as he became increasing unable to swallow.

We realised that he would need a line inserted for pain medications. And so it began.

As that final evening wore on, he became increasingly vocal and agitated. He was thrashing around in his bed, hitting his unprotected legs repeatedly into the bed rails. He also pushed his legs past the bed rails and needed one of us to place his legs back onto his bed as gently as possible. His purple fingers were curling inwards and clutching the rails like a terrified animal. We were concerned he might actually throw himself out of the bed.

With the intervention of the outstanding ward co-ordinator, we had been provided with two recliner chairs. But sleep was impossible for any of us.

He moaned and cried and tossed and turned. Around midnight, we requested drugs to help his obvious distress. A subcutaneous line was inserted into his abdomen. The last word we heard him say was "ow".

Then the night nurses expressed their concern about giving him too much hydromorphone. We were incredulous.

We requested extra medication. After an hour, the nurses gave him a calmative as well as another half dose of hydromorphone. We were berated for ringing the bell. One of the night nurses complained she had eight patients to look after and the other nurse had seven patients. We were asked - "Do you know it's only half an hour since you rang the bell?"

When he needed his pad changed, two of the night nurses spoke forcefully to him to let go of the bed rails. They moved him backwards and forwards like a sack of potatoes. We struggled to recognise any decency in their treatment of him.

We then asked for an urgent review by the night doctor and an increase in his medication. This was refused. Finally, another dose of hydromorphone started to sooth him. Or he was spent. Sometime between three and four o'clock in the morning, his cries became softer and subsided and his body ceased his frantic movements.

One of the night nurses was outstanding in her compassion. She listened empathetically to us in those grim small hours of the last night, offered us a cup of tea and coffee and obviously spoke to the other nurses about their lack of care. Around four thirty, one of the other nurses came into the room, washed his face and swabbed his mouth.

We both slept fitfully for a couple of hours. Morning shift began. My sister-in-law arrived. We were shattered. We grabbed tea and coffee in the cafe. My husband was so upset he could not return to his Dad’s room. We decided to go home for a sleep. I collected our gear from that isolated outpost and we drove away, grieving not for his approaching death but for what had been the last night of his life.

My sister-in-law rang us to let us know when he died. We were incredibly sad. And we were so angry. Where had been his comfort and dignity that we had been promised? After nine days in ICU, he was taken and effectively dumped in a place that wasn't prepared to receive him and didn't know what to do with him or us. And his last night on earth was harrowing for both him and us.

Here is a summary of our concerns –

·         Why was my father-in-law taken from ICU to a public ward that did not cater for terminally ill patients?

·         Why were all lines removed from his body in ICU when he needed another line inserted later? This procedure only added to his distress and discomfort.

·         Why was my father-in-law not transferred to the Private Hospital as was his request?

·         Where was the nursing support that we required to care for a dying man?

·         Why was there such reluctance to give him adequate medication to sooth his very obvious distress?

·         Midland Hospital (public and private) does not list palliative care as one of their services? If not, why not?

·         Why were there insufficient nurses on Ward 1B to cater to a dying man? We believe that there should be mandatory checking of the patient and family at least once at hour during this time.

·         Why did we have to beg for a medical review and additional medication? Why was this review and additional medication refused?

·         Why was my father-in-law reduced to terminal restlessness before his body finally relented and he fell into unconsciousness for his remaining hours?

Midland Public Hospital is administered by St John of God, a Catholic organisation. We are concerned that their religious dogma may dictate the care of patients. The dignity and comfort he had been offered was completely lacking. We saw only resistance and excuses.

Midland Hospital is not a hospital for all. The former premier, Mr Barnett, has compromised the health of Western Australians (particularly the Wheatbelt catchment) in agreeing to the terms for the administration of this hospital.

What Price for Dignity and Comfort.

Lucky died at around five o'clock yesterday afternoon in a secluded room within Midland Hospital. He had been admitted to the Intensive Care Unit two Saturdays ago. Initially given a very bleak prognosis, he seemed to rally for twenty-four hours. After Sunday, he embarked on a long slow deterioration.

He was given medication to support his blood pressure and heart rate. Daily blood tests painted a poor picture. As long as he remained on a drug regime that needed to be closely monitored, he remained in ICU. Faint hope for recovery gave way to the unpleasant inevitable; Lucky was falling into the 80% that were not going to survive this admission.

Ceasing the supporting infusions were delayed as Lucky rebelled against his fate. He was afraid and battling to understand what was happening to him. A day of verbal accusations and uncharacteristic behaviour illustrated his fear and frustration. I am ashamed to admit I took his assaults personally. I should have seen beyond the words to see an elderly man facing death.

The weaning process off the medications took two days. Lucky was eating very little, drinking not much more and becoming increasingly agitated at night. Whilst he remained in ICU, there were nurses available to tend to him and give comfort to his family. Sandra and Darryl had stayed overnight with him, but they had not been left on their own with Lucky for any extended period.

One of the consultants on ICU whom we liked and trusted talked a great deal about three words - comfort, dignity and family. She assured us that  Lucky would be treated palliatively in an environment that would concentrate on keeping him comfortable and dignified.

Two days ago, he was transferred to an adjacent ward. Placed in a room accessed through an airlock, the staff received very little information and openly stated they were unsure how to nurse him. The first nurse we saw expressed his frustration with the lack of a plan. Michael and I had agreed to stay with Lucky overnight. There were other family members coming in and out during the day. One of the registrars remarked that this was the time to say goodbye.

We were informed that the staff would no longer be performing observations. Unless we rang the nurses' bell, there would be minimal nursing support. All his drip lines had been removed in ICU. By late afternoon, Lucky was finding drinking increasingly difficult. so swallowing was an impossibility. We realised that he would need a line inserted for pain medications. This was not a welcome thought.

As the evening wore on, Lucky became increasingly vocal and agitated. He was thrashing around in his bed, hitting his unprotected legs repeatedly into the bed rails. He also pushed his legs past the bed rails and needed one of us to place his legs back onto his bed as gently as possible. His purple fingers were curling inwards and clutching the rails like a terrified animal.

With the intervention of the ward co-ordinator, we had been provided with two recliner chairs but sleep was impossible for any of us. Lucky moaned and cried and tossed and turned. Around midnight, we requested drugs to help his obvious distress. A subcutaneous line was inserted into his abdomen. The last word we heard Lucky say was "ow". The staff expressed their concern about giving him too much morphine. We were incredulous.

We requested extra medication. After an hour, the nurses gave him a calmative as well as another half dose of morphine. We were berated for ringing the bell. One of the night nurses complained she had eight patients to look after and the other nurse had seven patients. We were asked - "Do you know it's only half an hour since you rang the bell?"

Lucky was soiling his pad frequently. We watched two of the night nurses changing him. They spoke forcefully to him to let go of the bed rails. They moved him backwards and forwards like a sack of potatoes. We struggled to recognise any decency in their treatment of him.

We then asked for an urgent review by the night doctor and an increase in Lucky's medication. This was refused. Finally, another dose of morphine started to sooth him. Or he was spent. Sometime between three and four o'clock in the morning, his cries became softer and subsided and his body ceased his frantic movements.

One of the night nurses was outstanding in her compassion. She listened empathetically to us in those grim small hours of the last night, offered us a cup of tea and coffee and obviously spoke to the other nurses about their lack of care. Around four thirty, one of the other nurses came into the room, washed Lucky's face and swabbed his mouth.

We both slept fitfully for a couple of hours. Morning shift began. Sandra arrived to be with Lucky. Michael was shattered. I was not much better. We grabbed tea and coffee in the cafe. Michael was so upset he could not return to Lucky's room. We decided to go home for a sleep. I collected our gear from Lucky's isolated outpost and we drove away, grieving not for Lucky's approaching death but for what had been the last night of his life.

Arriving home with relief, we slept soundly for three hours. Upon awakening, Michael could not face returning to the hospital that afternoon. He rang Sandra to explain his feelings. Lucky was quiet at last. Michael believed Lucky's spirit had left his body sometime during that awful dark night and relayed his belief to her as well.

Sandra rang us to let us know when Lucky died. We were incredibly sad. And we were so angry. Where had been the comfort and dignity for Lucky that we had been promised? After nine days in ICU, Lucky was taken and effectively dumped in a place that wasn't prepared to receive him and didn't know what to do with him. And his last night on earth was harrowing. Just as well the two of us were with him. With scant support from the nursing staff, we were continually challenged to prevent Lucky from hurting himself further in his high state of agitation.

This is our reality of Lucky's decline. Michael and I remain very concerned about some of the attitudes communicated to us. The staff's overwhelming desire seemed to be following drug protocols, rather than easing Lucky's suffering.

Midland Public Hospital is administered by St John of God, a Catholic organisation. We believe that their doctrine may dictate the care of patients. No abortions in this public hospital for starters. And what about easing the distress of palliative patients. We saw only resistance and excuses in our pleas for Lucky.

I will be writing to the new premier and the new health minister. The previous premier's name is proudly displayed in the foyer for the opening of this hospital. This public hospital's policies have been dictated by religious doctrines. This is not a hospital for all.  The former premier compromised the health of Western Australians ( particularly the Wheatbelt catchment) in agreeing to the terms for the administration of this hospital.

Deja Vu

Another morning has followed another night that we did not go home. Staying at the Rose and Crown, this time in one of their uber swish, ultra modern motel units. The familiar choruses of planes overhead and trains nearby. And no stairs. A bonus.

Michael had a rotten night, restless with an unwelcome bout of his reflux. Yesterday he had needed a neb due to congestion. Last night was a combination of air conditioning (I should have turned it off and opened the door), unease about Lucky and those disorientated jolts when we wake up in unfamiliar surroundings.

So, this morning we are a little worse for wear. I let Michael sleep on after I left the bed. A hot shower with plentiful water has helped. And we will have a slow start. We have been forewarned that Michael's children are coming to visit their grandfather this morning. So we have to stay away.

I am sitting here, surrounded by swirling thoughts, emotions and memories whilst Michael is having a long soaking shower. I thought I had become more used to hospitals and their smells, sights and scariness. Living with Michael is a reminder that I have to be on my toes. Especially as we are entering the cooler weather.

This has been an ongoing process over the last few days. I think I have finally worked out exactly which demons are at my door. Thirty years ago, next month, Christopher was born. Nine weeks premature with a host of health issues battering his baby body. How quickly I entered a routine of normality intertwined with chaos. I used to complete some housework whilst Vanessa (then seventeen months old) had her first sleep. Then I'd pack her and me off to the Children's Hospital, her to the Child Care Centre and me to Neonates to spend another terrifying day with my little boy.

Vanessa was already showing signs of distress but I was so wound up with daily crises that I didn't notice my daughter. This was a time of utter madness. On the surface, I was coping admirably, juggling a toddler, an absent husband and a critically ill baby. Those days in Neonates were the stuff of nightmares. We lurched from disaster to disaster. Necrotising enterocolitis and a metabolic disorder and Noonan's Syndrome and a horrendous congenital heart disorder. Coupled with severely premature lungs. He really didn't stand a chance. There was no happy ending.

My tiny Chris lived his forty-eight days in Neonates and died on a wild and rainy June evening. Suddenly I was left without a purpose. I'd become used to the ride. What on earth was I going to do with myself?

This is Ground Zero all over again. We are all dancing as fast as we can, trying to behave like this situation is acceptable. We are taking shifts sitting with Lucky so one of the family is always with him. He has been moved out of ICU into a sheltered room in an adjacent ward.  He has been disconnected from all the machines that go ping. He is sleeping most of the time, open-mouthed as if he needs to catch his breath. The miracle is now highly unlikely.

So Michael and I are with Lucky. Michael's holds his Dad's hand and struggles to listen to his odd whisper. Lucky's beloved Nana Mouskouri is singing in the background. I hope Lucky can feel Michael's hand and Sandra's hand and Darryl's hand and all the love enveloping him. So he knows he isn't alone.

For the best father-in-law ever.

A Brief Respite from the Maelstrom

Friday was a particularly awful day. We were all tired from a week of shuffling in and out of the hospital to be with Lucky. He was uncomfortable and crotchety. His condition remained the same and his prognosis remained uncertain. Visitors wore him out but he voiced his loneliness when on his own. For a man who had prided himself on being physically busy, Lucky's illness had become excruciating. And he was frightened and fretful. Who wouldn't be under the same circumstances?

We had all gathered early. The day wore on. I was on edge from weariness. Eventually, I had to leave. We had secured a room at the Rose and Crown Hotel in Guildford earlier in the day and I needed a break away from the emotion that was swirling around us all.

So I checked in. The Rose and Crown is a delightful pub and offers very pleasant accommodation. At over one hundred and seventy-five years of age, she is a grand Georgian old lady, the oldest operating hotel in Western Australia. Kathy on reception was a marvellously cheery and compassionate presence. She had upgraded us into one of the Heritage Suites on the first floor of the original building. I was almost overwhelmed, firstly by her empathy and then by the stairs.

Feeling rather like a pack horse, I gasped my way up and down the stairs several times, bringing in enough luggage for a remote expedition. By the time, I staggered into the Emerald Room for the last time, I was completely shattered. This was one of the few times I regretted my complete absence of fitness.

The bed was soft, luxurious and welcoming. I was enveloped in a cloud of warm crisp comfort. I had opened the French doors to the balcony overlooking the garden and I was eventually lulled to sleep by the murmuring of guests below and the warmth of the afternoon sun on the bed.

Michael woke me via the phone after five. I collected him from the hospital and we retreated into another world. We sat in the garden with our evening drinks and then were second in line when the restaurant opened at six. Beautiful food, a superb and outrageously expensive bottle of Shiraz and convivial surroundings transported us to a temporary paradise. Post dinner, we traipsed our way down into the cellar, Michael pointing out the entry to the tunnel that had used to traverse the underground to the river.

We retired to our room to watch Michael Portillo and his gentle railway journeys. Once in bed, our eyes progressively drooped towards full closure. We were both asleep by nine o'clock and slept soundly with only a couple of brief moments of wakefulness to attend to personal ablutions. If there were any ghostly apparitions flitting around, we were blissfully unaware.

A beautiful morning, we checked in our key before breakfast. We also had to report the commencement of some alarming eruptions from the loo. Horrified that we had somehow blocked the pipes, we were most relieved when Kathy assured us that the old lady's plumbing was in a somewhat delicate condition and we were not the only ones to experience burblings of water from the facilities.

We had a very friendly and enjoyable chat with both Kathy and Mark Weber, the owner of both the Rose and Crown and the Mahogany Inn. We discovered shared passions with Mark of historic buildings, earlier times of Western Australia and the delights of red wine. He remarked that Michael obviously had very discerning taste in choosing the Shiraz made in heaven we had consumed the previous evening.

The 1841 breakfast was luscious, substantial and fortified us for the rest of the day. We left, feeling more rested than we had for several days.

Back to reality.

Paraphernalia within ICU

Scary for patients and scary for families.

How Lucky was feeling...

So we stopped the world for a night...

and enjoyed wonderful hospitality...

Vale Rose and Crown!

Return to Reality.

Another Memorable Encounter with Centrelink.

Having had no correspondence from Centrelink for a couple of weeks, I knew this situation was too good to last. Yesterday, yet another automated letter was spat through our post slot in the front door of the Gallery.

Centrelink required me to submit bank statements from the last three months of 2016 in order to assess the correct amount of my "Age Pension". What the fuck?! I know I have been looking a tad ragged lately but I didn't think I yet resembled one of the elderly set.

What really infuriated me was these were exactly the same bank statements (give or take a month) that Centrelink had received from us thirty-eight days ago. Those same bank statement were to check Michael was receiving the appropriate amount of his Disability Support Pension, according to Centrelink. Even better, these are exactly the same bank statements we submitted to Centrelink in January this year after the sale of the house.

Give me strength.

I was already hyperactive and edgy by this morning. I had spoken to Lucky last night from his bed in ICU. He was very tired, slightly disoriented and difficult to understand.  This development worried me and I repeated my concerns to Michael. Hence we found ourselves on the road to the Big Smoke by eleven o'clock with the primary goal to see Lucky for ourselves. I was also revved up for a visit to Centrelink in Midland with the required statements. Again.

Stops for road works and random breath testing hampered our progress. We didn't arrive in Midland until twelve thirty. We went straight up to see Lucky in ICU. A restless night, breathlessness and a frequent cough were not adding up to anything other than misery for my darling father-in-law. He had lost all interest in food and was very uncomfortable, but still with his trademark stoicism and good humour. We met with one of the consultants this afternoon, who spelled out what we already knew. Lucky was very frail, very unwell and his body was attempting to cope with many problems.

We went to lunch and decided to return home for the night but come back to Midland tomorrow morning. Michael stayed with Lucky and Sandra whilst I launched forth to Centrelink. By this stage, I was furious at a complete waste of my time.

The queue to the 'meet and greet" inside Centrelink took about ten minutes for me to reach the front of the line. Then, in a caring and sharing way, I let rip with my frustration at having to produce the same documentation three times in three months. Apart from all the other assessment and adjustments of our pensions that had taken up hours and hours over days and days.

The poor sod greeting me was actually sympathetic. He thought the reference to "Age Pension" was appalling, especially as I receive a Carer's Payment. He couldn't understand why Centrelink seemed to require the same statements when they already had them on file. He promised to photocopy them immediately and give them back so I could be on my way.

The line behind me was open mouthed. Applause and the thumbs up gesture followed. I hastened to add, in view of his rapid response, to insist I knew Centrelink staff were blameless but I would go to jail if I killed the responsible politicians. Came a gruff voice from the back of the line - "but it would be worth it!"

My statements handed back, I reiterated that I was clinging to the faint  hope that this would be the end of communication between us and Centrelink for the foreseeable future.

We live in hope.

Home this evening. We are hoping for the best but preparing for the worst. We are off tomorrow - very early for us. We would be really chuffed if you could send Lucky love and light and ask the universe and the gods to look after him.

Fools to the left of me, jokers to the right...

stuck in the middle with you.

And the winner is...!

Lucky and Judy at our wedding.

At the Sofoulis Family gathering, May last year.