Author: Unravelled Page 1 of 2

On 22 May 2023

I hadn’t come to see her.

I was visiting another resident when the nurse asked me if I had time to review ‘the new lady’ who had been admitted the day before. I had a full day booked and was already running late, but the urgency in the nurse’s voice made me pause.

“What are you worried about?” I asked.

“She says she needs to go to the bathroom, but she won’t let us help her. She tried to get up to walk to the bathroom this morning, but collapsed back on to the bed. We think she needs to go to hospital but she doesn’t want us to call an ambulance.”

A week ago she had fallen at home, giving herself a fright. She had walked in to the care home the previous day for a short admission, hoping for a week or two of rest and to recover before returning home.

The look in her eyes as she gazed up at me when I entered the room stopped me in my tracks. I had never, in all my life, seen anything like it.

Fear, desperation, and something else that I could not name, all in one wide-eyed gaze. My heart sank. I took a deep breath, and asked for her permission to sit by the bed.

Her breathing was rapid and shallow. There was a sheen across her brow, the effort of trying to get enough air was taking it’s toll. Her skin was grey, her hands were cold, and her lips were blue. I held her hand and felt her pulse – so rapid and irregular I didn’t bother to count the rate. I sensed immediately that she was dying, and that the end would not be far away.

I suspected she had a full bladder that was causing discomfort. I lifted the bedclothes to examine her abdomen, and she panicked. I stopped.

She gripped my hand – hard. “Please…no…help…”, she said.

Her much younger sister sat on the other side of the room, looking worried and helpless. I asked her if she would mind giving us a few minutes alone. She left the room.

Her relief at being left alone with me was obvious. An immediate relaxation, slower breathing – but the fear in her eyes was still there.

She wanted to go to the bathroom, but could not walk. She did not want any assistance from me or from the staff. She declined to use a bed pan. She did not want help with toileting, or with personal care. At the mention of the possibility of a catheter, her fear escalated to something I had never seen before.

She definitely did not want a catheter. She was adamant that she did not want any medications to help with her breathing, anxiety and agitation.

I struggled to understand how to help this woman. I had run out of suggestions.

“What can I do to help you?”.

“Nothing…maybe…just…don’t know”, she said.

“How about I just listen, and you can tell me what is worrying you the most?”

I did not fully process what came next until after her death.

As she spoke while she struggled to breathe, I began to hear small pieces of her story – one so horrific that I could never have imagined it and one I will never forget.

A story of abuse, of trauma, and of rejection. A story of embarrassment, and guilt. A story of spiritual suffering. Of confusion. A fear of dying with an untold secret.

Her sentences were broken. The pieces of the puzzle came slowly, and made little sense at the time. The overwhelming theme was a person who had been the subject of decisions made by doctors, her parents and their church, which had caused untold physical and mental harm and incredible existential distress.

She told me of many hospital visits that included multiple surgeries. Her fear of catheters due to past attempts to insert them that had caused excrutiating pain. Of ‘cures’ and ‘punishments’ that had been imposed on her. She told me about her fear of taking any medicines that might take away her sense of control. She said it was all a secret. Even her sister did not know.

She talked about her faith, and her fear of doing something ‘against God’. She spoke of her guilt, said that she had ‘bad thoughts’ and that she was ‘not good enough’. She was so worried that she would die without forgiveness and was going to hell.

I assumed she had been sexually abused. I was right, and I was wrong.

After her death the last piece of the puzzle was discovered, and it all made sense.

She had been born with both male and female anatomy into a devoutly catholic family. The catholic church’s position is firm. One is born either or male or female, and this also applies to intersex people who have both male and female characteristics, and who are – in the eyes of the church – either biological boys or girls.

It has taken me many years to be able to reflect on this experience. My heart still breaks to think of a person so troubled and so imprisoned by a body that she felt did not belong to her. She had no sense of her own identity. No opportunity to explore her own sexuality.

She had lived a lifetime of being violated, stigmatized and tortured. A lifetime hiding in toilet cubicles in school and avoiding public change rooms so her friends would ‘not see’. A lifetime of not belonging. A lifetime of fear that her sister and others would find out. A lifetime of feeling lost, inadquate and helpless.

She was robbed of the chance to live life to the full, to be free and happy. To feel safe and secure. To love and be loved, to be intimate, and denied the opportunity to marry and have children.

My own sense of inadequacy, my frustration at being unable to manage her physical symptoms, my confusion about what I was seeing and hearing, and my struggle to make sense of it all, still play on my mind. I wonder if I could have done more, or something different.

She died a few hours later in the same way she had lived. Uncomfortably, restlessly, painfully.

But she died on her terms, having told her story and unburdened her heart.

She died having her experiences and feelings acknowledged and validated, being told that what she had endured was unfair and undeserved. She died being reassured that she was worthy, that she was not alone, and that she mattered.

It wasn’t ideal. It wasn’t what I would call a ‘good death’.

It was what it was.

Grounded

On 3 April 2023

I stand, face to the sun as it rises over the ocean
Feet firmly planted
in the millions of grains of sand washed up over time
I look, smell, hear, sense, feel.

Each wave brings with it a story from the weeks past

…trauma
…experience
…voices
…memories.

The waves crash towards me,
threatening to engulf me and carry me away.

I dig my feet into the sand, struggling to stay upright
I breathe the salty air, sending it deep down into my lungs
I concentrate on my feet and how they feel
the sensation of sand and water swirling through my toes.

As the water recedes, I breathe a sigh of relief.

The ocean and the sand have grounded me
They have embraced the emotion
of the things I have witnessed and heard
they have carried them away to another place
where I do not need to dwell.

…the waves heal me
…the sand is my saviour
…the salt soothes the soul.

I am anchored in the present
my balance is restored
my body and mind are refreshed and ready to face another day.

Maintaining hope

On 4 November 2022

As a specialist nurse who coordinated care for adults with malignant brain tumours for nearly 7 years, I have followed with interest the recent media coverage regarding an infamous neurosurgeon.

My role was in a regional cancer centre, coordinating multidisciplinary team meetings and post-surgical treatments including chemotherapy and radiation. During this time, I saw some of the best and worst outcomes from some of this doctor’s surgeries. From the ‘miracle’ 15-year survivor of glioblastoma multiforme to the devastating outcome from a young mother’s failed surgery (death within days), there is one thing they all had in common.

Hope.

Families will do anything to buy more time with their loved ones. I have seen people take out multiple mortgages on their house, cash in their superannuation and go into debt for hundreds of thousands of dollars to pay for futile surgery.

The thing that was missing for each of these families was an honest and up-front conversation about their quality of life in relation to their diagnosis, treatment options and prognosis. The focus was usually on treatment to cure or prolong life, regardless of the impact. Desperate people will risk everything for that chance.

Even when local specialists were hesitant to refer, people pursued an opinion and opted to have surgery that was not based on evidence and often carried a high financial burden from the self-proclaimed ‘world’s greatest surgeon’.

I tried to be the tempering voice of reason when patients told me they were seeking surgery that local neurosurgeons, in consultation with their peers, had declined to perform. I dutifully forwarded the scans, coordinated the appointments, and in the background I quietly spoke with families to provide as much information as I could and manage their expectations.

I would try to talk to them about what mattered most, about their values and the things that gave their life meaning and were important for the future. Some said that having extra time was more important than anything else. They were willing to take the risk.

I gently tried to remind them that their follow up after surgery would be complicated. Local surgeons absolutely refused to continue care after a patient had been operated on by the ‘maverick’ surgeon. Patients would always need to travel for follow up appointments. Their clinical information would not be available locally if they needed to go to the emergency department or had a crisis here. At best, the referring specialist would get a letter or a discharge summary. I tried to reinforce that whatever time left was precious, and that this could be better spent with families rather than in strange cities and hospitals and travelling backwards and forwards for appointments.

Inside I was screaming. So often I wanted to refer to palliative care so that a detailed conversation about what to expect and their wishes for the future could take place and help with the decision making process. This was sometimes blocked by doctors with the phrase ‘you can’t take away their hope’. After gaining consent from the patient, I would make the referral anyway. People that met with palliative care first sometimes changed their mind about the surgery and shifted their focus to making the most of the present with good supportive care and symptom management, instead of clinging to an uncertain future.

I know there are success stories. These are the ones you see at fundraisers and in the media. But for every success story, there are countless failures. People who died, or lost function and the ability to even communicate with their family, only to eventually die anyway.

Surgeons who promise the world without inviting palliative care clinicians to be part of the multidisciplinary team should immediately raise a red flag and be consulted with caution. Hope is important and should be nurtured, but the truth needs to be told and expectations managed. Treatment should be based on best evidence and consensus of peers. There is no room for ego when someone’s quality of life is at stake.

The recent media coverage has not only shone a light on these terrible personal tragedies, it has highlighted a much broader issue than individual surgeons and poor patient outcomes. This issue is the ability for people diagnosed with a life limiting cancer or chronic illness to access palliative care from the time of diagnosis. Currently, many Australians are unable to access high-quality palliative care where and when they need it. This is especially difficult in rural and remote Australia and for people from diverse needs groups, including Aboriginal and Torres Strait Islander Communities.

Increased funding for specialist palliative care services is essential. Palliative care should be available at the outset, embedded within all multidisciplinary teams, and included as standard care – not a last resort when everything else fails.

Trivia and teabags

On 15 August 2022

Did you know that teabags were an accidental invention? That’s right: they were never intended to be dipped into that piping hot cup of water you are holding in your hand. In fact, in 1908 American tea merchant Thomas Sullivan used silk bags to send samples of tea to his customers, who mistakenly thought the bags were meant to replace traditional metal infusers and dunked them into their teapots.

Did you also know that teabags have been given out to exhausted and overworked NHS healthcare workers to thank them for their efforts during the COVID-19 pandemic and encourage them to take a break? The token gesture has received scathing criticism on social media and in news articles across the UK. The NHS trust that gave them out says that the gesture has been taken out of context and was just one part of a range of measures being used to thank healthcare workers for their hard work.

‘Nice trivia’, I hear you say. But what’s the point?

In the last few weeks, random trivia emails have been popping in to my inbox. These are being sent on a regular basis by the higher echelon, I presume in an attempt to raise morale and build a sense of community. Of course I could be wrong about the motive behind them, since no explanation for their sudden appearance has been communicated. With approximately 15 questions each email, they’ve obviously taken some time to compile. Then there’s even more time for someone to receive and read the responses and send out the results the following day.

I wish I could say they have been fun, a bit of light hearted activity to fill in during a tea or lunch break. Instead I am finding that with each new email I am feeling more and more resentful. If ever there has been a sign that management are reading the room wrong, this is it.

The emails arrive with a ‘ding’ and land in the depths of the inbox amongst what seems to be a never-ending mountain of referrals and requests to review patients. Rather than welcoming them, I am becoming more and more angry with each one. I can’t hit the delete key quickly enough. Who on earth has time for this?

Many healthcare workers around the world have received expressions of appreciation for their efforts during the pandemic and in an effort to boost morale. There have been claps for carers, music from balconies. badges of thanks, donations of meals, and signs in windows. A myriad of ways for the public, and employers, to show their appreciation. While all of these gestures and the teabags and trivia are well-meant, there are so many more practical ways to show healthcare workers that they are valued and appreciated.

What we want is respect. For managers to provide us with opportunities to raise concerns and give constructive feedback, and for them to act on it. We want enough staff and resources to meet the ever-increasing workloads. We’d like adherence to ratios, enough desks, working computers and phones. We want streamlined recruitment processes so that positions are not left vacant for two years. We need backfill into our positions when we are on leave so we can return refreshed to a manageable workload instead of having to exhaust ourselves trying to catch up. We’d also appreciate better pay, perhaps a retention bonus for slogging it out during a pandemic and still turning up every day. What about access to a free workplace gym and to a cafeteria or even just a mobile coffee van? I could go on and on, but I just don’t have the energy.

So there you have it. I’ve managed to link teabags to trivia, and had a rant.

Time for a cuppa.

Palliative care – it’s your right

On 28 May 2022

As National Palliative Care Week draws to a close, many clinicians have been so busy providing palliative care in the current environment of strained services with increasing pressure, that we have not had a chance to reflect on or promote it.

One of the myths about palliative care is that it is only for end-of-life care, yet it is so much more than that.  Palliative care seeks to improve quality of life for anyone with a life threatening illness, through the relief of serious health-related suffering – physical, psychological, social, or spiritual. Everyone has a right to access high quality palliative care when and where they need it.

Palliative care has always been a passion for me, even as a student nurse more than twenty years ago. In my first week as a new graduate nurse my grandmother had a heart attack and was admitted to hospital. A week of tests and attempts to stabilise her was excruciating to watch. I knew she was dying, and advocated strongly for a palliative approach. One of my aunts admonished me for ‘being too pushy’, telling my parents it was not my place to have these discussions and that I should stop.

I knew my Nan well, and that she had talked to me about dying for many years. She had suffered excruciating chronic pain for decades after a car accident, and often said she would rather be dead than have to continue to live with it. I didn’t give up. As I sat with her in the last hours of her life, listening to her last breaths, I felt an immense relief that she was finally given the dignity of pain control through a syringe driver. I went home knowing she was finally getting the care she wanted and deserved. She died that night.

Two decades later I am working as a specialist palliative care nurse practitioner, caring for older people living in residential aged care. On a daily basis I find myself having to advocate for provision of palliative care in the face of a medical model that attempts to prolong life for as long as possible, even though the person is seriously ill, deteriorating and saying they are ready to die. I am constantly dismayed at the unwillingness of some doctors to have discussions about realistic goals and provide good primary palliative care.

Just this week, our team was called to see a lady who had been unwell for several days with a respiratory infection. She was unable to swallow medicines, eat or drink. She was restless and groaning, and her doctor had been unable to visit, although had charted oral antibiotics that morning. They were capsules that she was unable to swallow. She was rapidly deteriorating and was suffering, and the nurses and carers were concerned and anxious that they didn’t have appropriate medications prescribed to relieve her symptoms. Her advance care plan stated she wanted to have good symptom control and did not want to go to hospital.

I charted injectable medicines and planned to commence a syringe driver to prevent pain and suffering. When contacted, her doctor did not want it to be started because ‘she should be given a chance to wake up’, and wanted all the oral medications to remain on her chart so they could be given the next day. Her family were present, they stated they wanted her to be kept comfortable and that she had been in severe pain when carers repositioned her.

I prescribed a low dose morphine syringe driver knowing that it was my responsibility to ensure she didn’t suffer, and that it was her right to receive palliative care. Less than 24 hours later she died peacefully, her family by her side.

The World Health Organisation explicitly recognises palliative care under the human right to health, stating that it should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individual.

In my own jurisdiction the Medical Treatment (Health Directions) Act states that a person who has given a health direction that medical treatment be withdrawn or withheld “ has the right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances. In providing relief from pain and suffering to the person, the health professional must give adequate consideration to the person’s account of the person’s level of pain and suffering”.

The Good medical practice code of conduct for doctors describes what is expected of all doctors registered to practice medicine in Australia, acknowledging the vital role they play in assisting the community to deal with the reality of death and its consequences. It outlines the following responsibilities:

“Taking steps to manage a patient’s symptoms and concerns in a manner consistent with their values and wishes.
Providing or arranging appropriate palliative care, including a multi-disciplinary approach whenever possible.
Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient.
Understanding that you do not have a duty to try to prolong life at all cost. However, you have a duty to know when not to initiate and when to cease attempts at prolonging life, while ensuring that your patients receive appropriate relief from distress.”

Why then, is it all so difficult? Why do nurses and families have to continue to ‘push’ doctors to plan and ensure access to medicines for end of life care?

Many older people living in residential aged care recognise that they are in the last years or months of life. They have spoken with their families, and have made their wishes clear in an advance care plan. They put their trust in their general practitioner and the nurses in the facility to provide the care they need and expect to have their symptoms managed appropriately in their last days. They, or their family, should not be put in a position where they have to fight for this.

Palliative care is everyone’s business. Please choose a health professional for yourself and your loved ones who is open to talk about death and dying. Choose someone who respects your wishes, is willing to provide the medications needed for good symptom control, or who will refer to another provider if they don’t have the expertise required.

Choose a health provider who will embrace palliative care: it’s your right.

#NPCW2022

Hitting the wall

On 15 May 2022

You’re not prepared for it. You’ve seen it in others, recognised the signs, and hoped it would never happen to you.
And then, WHAM!

Lethargy. Insomnia. Anxiety. Physical illness. Complete mental, physical and emotional exhaustion.

I should have seen it coming. I didn’t.

Some of the signs had been there for months. Feeling disillusioned about my job, and finding it hard to concentrate. Little snippets of irritability and impatience poking through during the day. A sense of never being able to get on top of the workload, and not being able to see the good outcomes – never feeling like the job is done properly and of being completely overloaded and overwhelmed. Frustration and anger with management. An overall lack of job satisfaction.

Burnout in nursing is not a new concept, and it is not just having a bad day. It is continuous work related stress that can have a cumulative, unwanted effect. Workforce studies have identified burnout as a nursing ‘outome’; with high workload, low staffing levels, long shifts and low control all associated factors.¹ Nursing stands out as one of the most at risk professions, due to the different circumstances in professional practice causing physcial and emotional exhaustion.²

Other risk factors for burnout include a lack of control or an inability to influence decisions that affect your job, a lack of resources needed to do your work, and extremes of activity (read: chaos). Some personality traits can make you more vulnerable and increase the risk of burnout – perfectionism, over commitment, idealism and self-criticism.

Many blame the pandemic for the increase in health workforce burnout, but if we are honest, the truth is that many of us were at risk prior to the start of the pandemic.

Health services have been stretched to capacity for decades. Unfilled shifts and roster shortfalls. Nurses working long hours and unpaid overtime. Phone calls to staff on days off, begging them to do extra shifts. Bed block and caring for patients on trolleys in corridors. And in aged care, no staff:resident ratios, and an ever increasing workload and patient complexity.

In my own palliative care service, the workload has increased three-fold in the last two years. We are averaging 15-20 referrals and 5-10 deaths each week. In January, February and March, we had more than one death each day. The emotional burden of this work really takes it’s toll.

For the last two years I’ve pushed through – working in COVID outbreaks in aged care facilities, using telehealth much of the time to increase efficiency, and attending an unbelievable amount of meetings. I’ve tried to support the people working with me, at times to my own detriment. Palliative care by telehealth is not my idea of clinical excellence. My job satisfaction has suffered. My health has suffered.

In a week when multiple members of the team were diagnosed with COVID19, I trudged on. It was good to get out of the office and do face to face consults, but by the end of that week I was at the end of my tether.

I hit the wall.

Something had to give, and I realised that if I wasn’t careful, it would mean long term damage. It took a strong lecture from one of my team mates to really bring the message home. It was time to stop, recover and take stock.

After a visit to my GP and some reflection on how I was feeling, I set out to get myself back on track. Daily exercise, eating well and plenty of rest. Lots of reading, some meditation, listening to podcasts, and crochet. I bought storage boxes and sorted some cupboards – regaining a sense of control over my personal space at home. I completed some administrative tasks that have been piling up for months.

After two weeks I feel rested, but not fully recovered. I’m ready to go back to work, but I’ve made some decisions. It’s time to be very clear that our team cannot continue to work without adequate staff and resources. It’s time to step back from some of the committees and meetings. It’s time to put some boundaries in place to protect myself from real burnout which may lead to walking away from a job that I really do love.

Burnout CAN be managed, and you can learn strategies to prevent it from happening. Paying attention and taking control over your own health is just the first step. Information about preventing and managing burnout can be found at https://www.nmsupport.org.au/. Please don’t wait until it’s too late.

References

Dall’Ora, C., Ball, J., Reinius, M. et al. Burnout in nursing: a theoretical review. Hum Resour Health 18, 41 (2020). https://doi.org/10.1186/s12960-020-00469-9
de Oliveira, S. M., de Alcantara Sousa, L. V., Vieira Gadelha, M., & do Nascimento, V. B. (2019). Prevention Actions of Burnout Syndrome in Nurses: An Integrating Literature Review. Clinical practice and epidemiology in mental health : CP & EMH, 15, 64–73. https://doi.org/10.2174/1745017901915010064
https://www.nmsupport.org.au

The tide turns

On 12 March 2022

The angry ocean hurls itself at the beach

Furiously carving away the sand

Mountains of wrath in the rock pools

Dirty frothy foam

The waves, larger than ever

Continue to beat down on the beach

The shoreline higher than ever before

Trees thrown from rivers and oceans block the paths

White sand covered in silt

Everything looks dark

Uninviting

The world watches as rivers rage through towns

Dumping detritus into the sea

Houses, shops, buildings destroyed

People homeless

Mountains of rubbish

that will take years to destroy

Where to begin?

How did it come to this?

Decades of not caring

…ignoring

Procrastinating

People rage in despair

Prime minister fumbles

Government struggles to respond

The future looks bleak

What have we done?

Flight of the butterflies

On 8 October 2021

The first time I saw a butterfly on a door, I had no idea what it meant.

It was not until many years later that I would learn that butterflies are universal symbol in palliative care, and that a butterfly on the door meant that the person inside the room was dying.

The symbolism of butterflies is based on metamorphasis and the process of transformation through the life stages. From the egg comes a caterpillar, the caterpillar becomes a chrysalis, and in the last stage of rebirth the butterfly emerges and flies away ‘reborn’.

Each of these stages signify life, death and resurrection – concepts familiar to christians but which in fact have meaning in many cultures and religions.

In Michoacán, Mexico, the annual migration and return of Monarch butterflies coincides with the celebration of The Day of the Dead (Día de los Muertos) on 2nd November. The Mazahuas indigenous community believe that the butterflies are the souls of their ancestors coming home for their annual visit.

Aristotle gave the butterfly the name psyche, meaning “breathe, breath of life, soul”. Greek people believe that when someone dies, their spirit leaves the body in the form of a butterfly.

The Aztecs believed that the happy dead in the form of beautiful butterflies would visit their relatives to assure them that all was well.

Elizabeth Kubler-Ross, the swiss born psychiatrist who is well known for her theory of the stages of grief, gave the example of a cocoon and butterfly as an analogy for the body and soul.

“Death is simply a shedding of the physical body like the butterfly shedding its cocoon. It is a transition to a higher state of consciousness where you continue to perceive, to understand, to laugh, and to be able to grow.”
Elizabeth kubler-ross

The concept of the death of a loved one is painful and brings with it feelings of grief, loss and finality. Even for those who work in palliative care, death does not always sit comfortably.

We sometimes struggle – not only with bearing witness to suffering, but with finding meaning in the work that we do and ways of coping with our thoughts and feelings. The situations we find ourselves in day in, day out, can lead to vicarious trauma, compassion fatigue and burnout.

Dr Naheed Dosani spoke at the OCEANIC palliative care conference this year about his work providing palliative care to the homeless in Canada. When a homeless person dies, his team shares the experience of grieving in a group by forming a healing circle and using the ‘4Rs’ to remember, reflect, recover and plan to reinvest.

A week later, I heard renal supportive care rural nurses from Broken Hill talking about a wall of butterflies in their office, symbolising the people that their team had cared for who had died.

Both of these resonated deeply for me. I wondered if combining the two concepts could provide a way of helping our team to cope with the sometimes overwhelming nature of our work, and to honour the people we have the privilege of caring for.

We have a large whiteboard in the office, which we use to keep track of patients who are receiving end of life care, and schedule visits or reviews. We now have a number of butterflies fluttering across the whiteboard towards the window. Each represents a person who has died in the past month under the care of the PEACE team.

On the last day of each month, our team will come together in a ‘grief circle’, with the butterflies in the centre. We will take time out of our busy schedules to pause, to remember the person, their story and their family.

We will reflect on their death, share our experiences and what we have learned from them. We will take a deep breath, recover, and prepare to reinvest and continue our work.

Butterfly photo @GettyImages

People, not numbers

On 2 October 2021

18 months.

Watching. Waiting. Planning.

Dreading.

31st December 2019. The World Health Organisation picked up on a media statement by Wuhan Municipal Health Commission reporting cases of ‘viral pneumonia’ with unknown cause. On the 9th January 2020, it was determined that the cause was a ‘novel coronavirus’. The first death occured on 11th January 2020, four days later cases began emerging in other countries with evidence of human transmission.

On the 25th January 2020, the first cases were detected in Victoria and NSW in Australia. On 12 March 2020, just as we were starting to recover from devastating bushfires and hailstorms and having a family gathering to celebrate my daughter’s birthday, the ACT reported the first case of SARS-CoV-2, triggering a public health emergency and initial lockdown. COVID19 became a household word.

The news from overseas during the first wave was frightening. We heard about the increasing number of outbreaks and deaths in long term care homes – our equivalent of residential aged care. Italy’s death toll was one of the most tragic. Aged care homes (nursing homes) were described as ‘beseiged castles‘. In the province of Bergamo, more than 600 nursing home residents, from a total capacity of 6400 beds, died between March 7 and 27, 2020.

I read the Commonwealth ‘plan’ for preventing COVID19 in aged care. It wasn’t a plan, it was a thread-bare draft document of how to test and then begin to implement infection control precautions. It was woefully lacking in detail. Quite frankly, it sucked.

In March there was an outbreak at Dorothy Henderson Lodge in Sydney. Seventeen residents and five staff had COVID-19 and six residents died. In the ACT we started planning our own strategy to respond to outbreaks of COVID19 in residential aged care, not really knowing what we would be dealing with.

The first wave was quickly contained. The second wave was deadlier and more widespread. In mid 2020, we watched as Melbourne struggled to get control. I listened to the rising numbers of deaths of vulnerable elderly people, feeling helpless and sad for my colleagues on the front line. I helped audit the aged care facilities in Canberra for their readiness to respond to an outbreak. The whole time I was thinking to myself “We are SO not ready, I hope we never have to do this”.

I volunteered to be deployed to Victoria to help in aged care during the peak of the outbreak, but the ACT surge workforce was not requested. I secretly breathed a huge sigh of relief, at the same time feeling guilty about not being on the front line.

A total of 629 people died in residential aged care between the beginning of the pandemic in March and 19 September 2020. To most of Australia, they were numbers – statistics that were read out at daily press conferences. The Royal Commission into Aged Care Quality and Safety extended their work to conduct an investigation.

For the nation, it was a massive failure of the Commonwealth Government to prepare and respond in an area that was purely within their remit, not that of the states and territories. The Commonwealth Minister for Aged Care could not even tell a Senate Estimates Committee how many people had died. For the families of those people, this was a tragedy that was largely preventable. For those working in residential aged care it was a disaster that would cause significant trauma, burnout, and in some cases, end careers.

Totally surrounded by NSW, the ACT has always been under threat of a major COVID19 outbreak. Those of us working in healthcare have been like coiled springs: ready for action, hoping we would never have to face the stark reality, particularly in our disability and aged care homes.

We avoided the second wave, and the third.

This article outlines the chronology of COVID19 in Australia and the lessons learned in NSW. It now seems that the fourth wave has well and truly become the Tsunami threatening to demolish the whole east coast of Australia.

All this time, it feels like I have been holding my breath.

Eight days ago, my worst nightmare began to unfold, with the first positive cases in residential aged care in the ACT. Large numbers of staff were furloughed, outbreak disaster plans that had been 18 months in the making were implemented.

On Monday, three days after the outbreak, I received a frantic call asking me to see a rapidly deteriorating patient, and to supply as many ‘syringe drivers’ as I could. I knew at that point that it was going to be a bad week.

Navigating the infection control precautions to enter the facility, I walked past the ‘outbreak’ zone and headed to one of the ‘green zones’. I stopped to put on my PPE and then entered to see a resident who, although COVID negative, clearly needed end of life care. After doing my assessments and phoning several members of the family I wrote medication orders, documented my notes and started working on letters to support applications for family to travel into the ACT.

On Tuesday, I received my second emergency call to the facility. Another rapid deterioration, a resident who was COVID negative. More phone calls to distressed family members to break bad news, another infusion commenced for end of life care, and more letters to the ACT COVID exemptions team.

On Thursday, I was asked to enter the ‘red zone’ and see my first COVID positive patients. This was a whole new level. I am not ashamed to say that I was apprehensive (read: secretly terrified). I was so grateful for the infection control nurse who watched me don my PPE and checked it was all secure enough for me to enter. I opened the door to the unit, and stepped inside.

Several people asked me the next day what it felt like, coming face to face with COVID19 for the first time. How can I even begin to describe the feelings and emotions? It was totally surreal.

I stood at the side of the bed, watching the person struggle to breathe. I’ve seen that many times before, but the difference this time was that while I was watching and worrying, a little nagging voice in my head was saying ‘don’t get too close, watch out, this is real now – you are at risk here’. I’ve never felt that during my nursing career. I momentarily imagined the deadly little spiky balls of virus floating around the room. Involuntarily, I took a small step back.

I closed my eyes, remembered to breathe, and reminded myself that I was vaccinated, had appropriate protection, and that this was a person who deserved the same care that I had given to all my other patients. More, in fact, because the family would not be able to visit or sit vigil at the bedside. Staff would come and go as quickly as possible to minimise contact time. I stepped forward, assessed, and then rearranged the bedclothes. I spoke gently, reassured, comforted. I hoped my words would be heard, my touch noticed.

I left the room, took off my PPE, and put on a new set to see the next person. He was awake, distressed. This time I didn’t hesitate to step forward and do what I needed to do. I told him I was going to organise for some medicines to make him more comfortable, and that I would be back soon. He looked into my eyes and softly said ‘thank you darling’.

On Friday, the two positive patients I had seen the night before had died. I reviewed six patients – three of these had COVID19. I wrote scripts, spoke with families, documented the notes. I felt totally drained, dehydrated, hungry and tired. I left the facility, took off my mask, and sat in the car for a moment to breathe. Deep grooves were embedded into my face from many hours in PPE.

Before driving away, I found the link to the daily press conference and plugged my phone in so that I could listen to it on the way home. Tears rolled silently down my cheeks when the Chief Minister Andrew Barr announced “The ACT has experienced the toughest day of our pandemic response so far. Two Canberrans with the virus have passed away overnight. They were residents of the Calvary Haydon residential aged care facility, receiving end of life care from the palliative care team“.

For the first time, these were not numbers or statistics to me. They were individual people. I had been beside them, touched them, comforted them, and looked into their eyes. I WAS the palliative care team. Their families were already grieving. Hearts were breaking, mine included.

The worst part is knowing it is not over. The worst may be yet to come.

Bone tired

On 30 July 2021

I’ve never really thought of myself as being on the frontline during the pandemic.

I haven’t been exposed to COVID-19, or cared for anyone with it.

Sure, the PPE requirements have been a nuisance working in aged care facilities, and wearing a mask all day feels like hard work. But it’s nothing compared to what I imagine my colleagues interstate and overseas have endured working in hospital COVID wards and care homes where there are outbreaks.

I’ve worked alongside nurses who are run ragged caring for the elderly, watching them patiently explaining to angry relatives the reasons for visiting restrictions, while at home in their own countries their family and friends have been dying of COVID. I have listed to their grief as they tell me about not being able to say goodbye to mothers, fathers, siblings and cousins.

I have used telehealth to connect families overseas and interstate with their dying loved ones, giving them that last chance to say goodbye, because travel restrictions mean they cannot come to sit at the bedside and hold the hand of those they love. I’ve lost count of the letters I have written to Chief Health Officers on behalf of these people to support their applications to travel to attend a funeral.

I’m tired. Everyone at work is tired. Not just because we work long hours, or because we are understaffed while the workload increases, but because the permanent state of vigilance is exhausting. Every radio station, television channel, newspaper and social media forum is filled with COVID news – we can’t escape it. We have not been able to have holidays – those precious days and weeks each year in which we can take ourselves off to explore other places, turn our faces to the sun, unwind and relax to recharge our body, mind and spirit.

Caring for the dying is difficult at the best of times, but during a pandemic there are layers upon layers of complexity that we peel back one at a time, only to reveal more layers underneath. We bear witness to grief, we hold space for others, it is accumulative and eventually catches up with us.

I have cried more in the last six months than in all my years of nursing. Advertisements on tv can bring me to tears, they randomly run down my cheeks when I’m listening to a song, watching a movie, or reading a book. The sadness comes out of the blue, overwhelms me, then disappears. I’m not burnt out – I still want to go to work, I love my job. But I’m tired – ‘bone tired’, as my grandmother used to say.

Just today, I read an article about the grief that nurses are experiencing during the pandemic, and the potential impact of this on the nursing workforce in the years to come. I know many who have left their jobs, moved to different areas, or decided it’s finally time to retire. It’s difficult to imagine the pandemic coming to an end, and that we will ever return to what we once knew as ‘normal’ life and work.

To my nursing, medical and allied healthcare colleagues on the front line in COVID hotspots, hang in there. Take a mental health day, or two. Stay safe.

Crystal ball

On 22 June 2021

We don’t always get it right. When we don’t, it can feel like failure.

I think that often our patients and other teams rely on us to predict when someone will die, and to have a plan in place. Doing this, however, is often incredibly difficult.

It’s not necessarily science. We’ve all had patients who defied the ‘norm’. Those who lived much longer than we expected. Those who died unexpectedly, when we thought they had plenty of time. We’ve looked at the studies, the treatments offered, and talked about prognosis – often based on clinical trials, the ‘median’ length of survival. Most times it’s a ‘best guess’. I often joke that wish I had a crystal ball. It would make my job so much easier.

When I first met him, he had already defied the odds. Two years ago they told him he had months to live. A year ago my colleague thought he was imminently dying. And yet here we were, another year later, and I was meeting him after a hospital visit where his doctors had gently told him that the best place for him was not in the hospital. He was still living.

We talked for a long time about the things that mattered most, and the things that were distressing him. Ultimately, it was not pain or other symptoms causing angst. The things that mattered most to him were updating his will and making his own funeral arrangements, so that he ‘wouldn’t be a bother to the children’.

He wanted to die in the hospice, rather than in the aged care home. His young grandson had died there just over a year ago, and he felt a connection with the staff. He liked the views of the lake and the peaceful location. He said he was ready for death, yet I could see the fear in his eyes. Not fear of the symptoms he might experience. Not fear of his life coming to an end. Not fear of what might come after death. The thing he feared most was not being in control.

He had insight into his hepatic encepalopathy, and the confusion terrified him. He wanted to continue to administer his own medications. He had a list of people he wanted to see, and another of those he that he didn’t. He wanted to be able to walk to the bathroom, to use his laptop, pay his bills, to write.

I saw him again on a Thursday, two weeks later. I could see his deterioration – yellow eyes, orange skin, fluid-filled abdomen, increasing shortness of breath. I suggested it might be time to come to the hospice now. He stalled – he wanted just one more blood test, one more telehealth appointment with his specialist, one more weekend in his room with his belongings.
“Next week”, I suggested gently. “Let us help you with getting your affairs in order, and manage your symptoms”. I thought we were running out of time.

On Monday morning I called to let the nurses know we had a bed available. Over the weekend his pain had increased but he had refused to allow them to give the medications I had already prescribed to keep him comfortable. We booked the ambulance transport, and agreed he would arrive before 2pm. We confirmed the nurse would send the medication chart, a copy of his advance care plan, his laptop and important papers.

She called me when the transport arrived to let me know he was on his way. “Tell him I’m here waiting for him to arrive,” I said.

Ten minutes later, my phone rang. The nurse was so upset she could barely speak. He had died as they had transferred him on to the ambulance gurney.

I was so devastated.

The tears flowed freely.

I felt that I had failed him.

He did not get to die in his preferred place.

He had died in pain.

Yet ultimately he had been in control. He had specified the timing. He had refused the medications that would dull his senses.

In the end, he had died knowing he was on his way to the hospice, where he wanted to be. It may not have been as I had planned, but I had respected his independence, and tried to honour his wishes.

“The only time we fail is when we stop trying”, according to Chuck Norris.

Maybe I didn’t fail after all.

The year of change

On 1 January 2021

It ended as it began, with a sense of uncertainty, a feeling of danger just around the corner, and an urgent desire to step into self-protect mode.

2020 was the International Year of the Nurse and Midwife, but will no doubt be written into the history books as a year that everyone wished they could forget. It was the year of disaster – unpleasant surprises, unwanted lifestyle changes, the year of grief and loss, and of one bad news story after another.

In our family, it started with the bushfire season which was one of Australia’s worst ever. RFS firefighting deployments began in late August, and it was a long, hot summer of pager calls, long days and nights, and waiting for the next assignment. I spent a night in December waiting for the dreaded knock on my door after receiving a text from my husband with a photo of the Nerriga firestorm, and a message saying his crew were preparing for a burnover. For hours on end I waited for some news, truly believing that this time he wasn’t coming home. His phone was either out of range, or no longer useable. I was so relieved when he returned the next day, covered in soot, ash and that unmistakeable smell of bushfire smoke. We had no idea that things would get much worse before they would get better.

New Year’s Eve was a warm summer evening that developed into a thick, choking smoky night. My parents were in danger on the south coast, and my husband was out on fire duty, while I tried hard to remain calm and checked my phone for news every five minutes. The firefighting continued for many weeks, I put on my RFS uniform and helped with shifts of community liaison and supporting our crews at the shed. We watched the country burn, and listened to stories of family and friends that lost properties and livestock. The rain finally came in late February, and finally we thought there was a chance to rest and recover.

In March COVID-19 reared it’s ugly head, and the downhill slide into 2020 continued. At work our team rapidly pivoted, adopted telehealth, packed kits of PPE and changed from everyday workwear into scrubs. We worked from home when we could, but there was no doubt our clinical work was going to increase rather than slow down. We planned how to decontaminate after each shift to protect our homes and those we loved. In addition to my clinical workload, there were now multiple COVID-19 committees with meeting after meeting on WebEX, Zoom, Teams. We knew we were in for the long haul. I was exhausted before we began.

July and August were bleak. It was cold, dark and miserable. We shed tears for two very special people in our lives. Uncle was in his late 90’s, and was tired. We were sad, but not surprised when he decided it was time to stop taking the medicines that kept him alive but were failing to improve the quality of each day. Rhonda’s death came as a total shock, and we grieved this very sudden loss hard. She was my second mother, my lifeline when the children were small and I was navigating new marriage and motherhood, and one of my best friends as I grew into adulthood. She was the person who was always there to help out, the reliable person in a crisis, the one you thought would always be there to make a cup of tea and have a chat. She was at every birthday, every special occassion, every Christmas. Life goes on, but we are changed irrevocably.

Both my parents had bilateral knee replacements in 2020, Mum in February and Dad in November. Both had complications with blood clots, and delayed recovery. Usually active, busy and energetic, they have been forced to slow down and are struggling a little. It comes as a shock when you realise your parents are entering old age and you are reminded that they won’t be here forever.

During the year I sat with so many people who were facing loss and grief. I held the hands of the dying and listened to their stories. Every day there was something new to learn, a different challenge to face. While the world seemed to come to a standstill with lockdowns, COVID-19 and a sense of continuously waiting for the next outbreak, care of the dying continued and was made much more difficult by having to navigate border and travel exemptions and visiting restrictions.

I sought comfort in my family, my home, Molly the Wonderdog, and Wonkykitty. My grandchildren reminded me that new life and new energy are always just around the corner when you think things are at their worst. I learned to bake sourdough. I relearned crochet, and used it to relax at night and to keep me awake while watching Netflix. It gave me a sense of purpose, as each item I made was being gifted to someone I loved. It forced me to slow down, to sit, to temporarily lose myself in colour, texture, patterns. It grounded me.

2020 ended with a whooshing in my ears and dangerously high blood pressure that involved an emergency visit to a doctor, tests and medicine. This time I was frightened for myself. It was a wake up call that I need to focus on self-care. My resolution for 2021 is to excercise, eat well and slow down enough to take time to spend with family and friends, to smell the roses, to bake more sourdough, and keep crocheting. It’s time to enjoy the simple things in life.

Raindrops

On 8 October 2020

I am a raindrop landing suddenly on the window pane of life.
As I weave and slide my way towards eventual demise,
I am sometimes alone.

Occasionally I join another and we travel together –
my shape changes and expands as we navigate our way.

A gentle breeze can move me.

Those around me change and redirect me.

Sometimes my path is parallel to others,
touching here and there, but all on individual journies heading in the same direction.

Eventually we will part company to land at our final destination separately, and will never see each other again.

We are all droplets of nature navigating unfamiliar territory
and all destined to eventually return to the earth.

Bare walls

On 15 August 2020

The white wall is bare, apart from the black scuff marks where the bed has been pushed against it repeatedly.

No photos.
No personal items.
The television is turned up to full volume.
The curtains are half drawn,
and the flourescent light is so bright it makes my eyes hurt.

He sits upright in a chair at the end of the bed
Dressed immaculately in a dark suit, with a matching tie and handkerchief.
His eyes appear huge behind thick glasses,
he looks at me suspiciously as I introduce myself and explain why I am here.

I sense from his posture that this will be a difficult discussion.
It is not him that I am here to see,
but he is such an important part of the visit.

She lies on her back in the bed, head slightly elevated.
Staring into space.
I lean towards her and say hello.
No response.

The nurses have told me it is many months since she spoke.
Even then, it was single words. Yes, No.
Difficult to understand.
I wonder how hard they tried.

It soon becomes clear that he visits daily
sitting patiently by the bed and waiting for her to get better.
He appears to have no idea how serious her condition is.
He waits for her to talk to him.
He tries to feed her.
She coughs with every mouthful.
He phones their son every day tand tells him that she is improving.

We talk about his wishes for her.
To get better, he says.
What if she doesn’t?
She will, he says.
What if she is sick enough to die?
She won’t die, he says. She is my angel.

I try several times over the next few months to engage with him.
Nothing works.
I chart a seizure management plan, and pain relief.
The doctor documents she is not for hospital transfer, not for resuscitation.

One year later
COVID-19.
Lockdown.
No visitors.
She has been having seizures.

They ask me to come urgently.
As I walk into the room I can hear the rattle as air moves past her secretions
I smell it before I see her.
Death has arrived.
It waits patiently in the corner to take her.

Her husband rises to greet me, ever polite.
Perfectly dressed.
Anxious.
She won’t look at me, he says.
What’s wrong with her?
She doesn’t stir as I examine her.
I turn to him, and help him sit down.

I try to explain.
I’m so, so, sorry, I say.
I know you don’t want to hear this, but she is dying.
I don’t think she has very long.

His eyes well with tears.
He cannot speak.
Talk to her, I say.

He rises, moves to the bed, and stands beside her.
He leans over, touches her face, and tells her he loves her.
Her eyes open, her mouth moves.
She looks at him briefly, then closes them again.

I sit with him for many hours.
We listen to her breathing, and for the first time he tells me their story.
It is the most amazing story of a life that some of us only imagine.
A life in many different countries, mixing with important people at high society events. The names rattle off his tongue like old friends.
Clinton, Putin, BenGurion, Queen Elizabeth, Queen Margrethe, Gillard.
He tells me of having photos taken with these people and of the beautiful gowns she would wear for these occasions.

He tells me that she gave up her brilliant career to follow him around the world, that she pushed him to be the best that he could be.
That without her, he would be nothing.
She is his angel.

And then she fell.
A stroke.
An ambulance.
Hospital.
And then here.
No more fresh air.
No more fancy dresses.
No more parties.
Just this white room, devoid of any personal touch,
bare walls and a murky brown blanket.

The sun has disappeared
The cold winter dark has settled in for the evening
rain has started to fall gently on the roof.
I organise for a priest to come as soon as possible.
I suggest he might like to stay the night, and offer to organise a bed.
No. I’ll call a taxi, he says.

I cannot let this man leave in a taxi.
I offer to drive him home.
Thank you, he says.
He kisses her goodbye and begs her to wake up.
I’ll be back tomorrow, he says.

I step through the door of his home into another world.
Her world.
Dusty dolls, fine china, plush rugs.
Photos on every wall.
A family crest.
An elegant couple in expensive clothes.
He pulls out photo album after photo album.
I learn of his childhood, a place of torture during World War 2.
Of a family that fled,
and of lives rebuilt.

I learn of his family, his twin brother, his connections.
Their son is on the other side of the world.
He has no family here.
I offer to stay with him while he calls him with the bad news, he declines.
We agree to meet again the next day.
I urge him to go early to see her, but old habits die hard.
I’ll be there at midday, he says.

He arrives at at his usual time.
She is silent, cold.
He stands in shock by the bed
with tears rolling down his cheeks.

I walk into the room
They didn’t tell me, he says.
I called and they said this morning she was fine.
And now….
this.

He is in shock.
But he understands.
His angel is gone.

I call the priest and ask him to return.
He kindly agrees.
The doctor comes, explains the formalities.
Why her, he says? Why not me?
There is no answer.

We sit for several hours
with her cold, still body.
He talks, and talks, and talks.
Every now and then he pauses to look at her –
each time a shock jolts through him.

The funeral director comes.
We discuss options, plans, and he makes an appointment.
They will kindly visit him at home.
They place her on the trolley
cover her with a sheet.

I hold his arm as we follow them to the hearse.
He is unsteady on his feet, slow, shuffling steps.
We are herded out the back door
so we don’t disturb anyone.

I think to myself how unfair this is.
To have lived such a high profile life
and to leave this world alone in a cold dark room and
be taken out through the back door.

I drive him home.
Without her, there is no point living, he says.
I worry about him.
I ask him if I can call a friend to come and be with him.
In my job there are no friends, he says.
Only colleagues and enemies. And you don’t turn your back on any of them.
I call in the team. Pastoral care, social work. They promise to do their thing.
I give him my number.
He promises to call.

You’ll come back?, he asks
Of course I will, I say.
As I walk up the drive way, I look back.
He stands at the door, watching me
Then he turns, and goes inside.
Back to her world, and the memories of another life.
Back to his angel.

Encounters

On 24 July 2020

Our encounters with death shape us:
they show us the reality of life,
teach us the lessons of love and loss,
enable us to reflect on what is important,
provide an opportunity to stop and change direction,
and give us a glimpse into our future.
For this, I am grateful.

Operation Hope

On 24 July 2020

August 2006.

I am in my final year of my nursing degree, and on my final clinical placement with HITH. I have learned to cannulate, take blood, give intravenous antibiotics and blood transfusions. I am learning a lot about infections, wounds and dressings.

I am looking forward to graduating.
I have just found out that I have a full time place in the new graduate program for 2007. I am hoping to work in oncology – my dream job.

I am completing my final assignment, checking my references, counting the words.
The phone rings, my husband answers it.

I sense, rather than hear, that this is not good news.
He is too quiet.
Listening.

He hangs up, and turns to me.
I see the look in his eyes, and my heart feels like it has been grabbed in a vice.

Dad, he says. In hospital.

We’ve been down this path before.
Non-Hodgkins lymphoma.
Diagnosed after many months of night sweats, cough, and weight loss – after returning from Kosovo, where he had been helping to rebuild after the war.

Precious engineering skills, generous heart.

Depleted uranium.

A botched biopsy resulted in a damaged diaphragm and collapsed lung, with a stint in intensive care. The surgeon did not instill hope.
We watched and waited, holding our breath.
Expected the worst.
He recovered. Eventually.

Chemotherapy. Months and months.
Beardless for the first time in his adult life.

Another intensive care scare, and a call to come quickly. He is struggling.
Cardiomyopathy.
Again, we watch and wait.
He pulls through.

Finally, a reprieve.
Remission.

Boxing Day 2004.
Tsunami.
Sri Lanka is dvastated.

His pull towards his country of birth is great.
He answers Word Vision’s call for volunteer engineers.
Goes to assess the damage.
Is too traumatised to tell us the whole truth of what he has witnessed.

He comes home, and starts fundraising.
Operation Hope.
Raises enough money to rebuild a village, and goes back to teach the locals how to build their own houses.

Fast forward to 2016.
The project is drawing to a close.
25 families have new homes, a chance to start again.

He has not told anyone, but the night sweats have started again.
The cough has returned.

Time is running out.

He finishes the last house, says goodbye to the locals, and flies to Switzerland. He wants to see his daughter and grandchildren before returning home to Canberra.

Perhaps he knows.

Two days later, and he is in hospital in Geneva.
DVT, they think.

Something is not right. He is struggling. The doctors are worried.

Heart failure.
The chemotherapy that extended his life so he could do good work has damaged his heart so badly.

He wants to come home.

Our phone rings.
Our world stops.

The french doctors have stabilised him.
A window of opportunity.
A chance to come home.

Pre-existing condition, the insurance company says.
It will cost more than $20,000 for a medical evacuation to Australia.

All of a sudden the flights are booked and I am at the airport.
I have never travelled alone.
I am terrified.
The weight of the world is on my shoulders.

I make it to Geneva.
Rush to the hospital.
He is so sick.
Take me home, he says.
I need to see my family.

Clinique Grangettes, Geneva.
Doctors and nurses in white scrub.
Beautiful. Sterile.
Terrifying.

The french doctors brief me.
They give me cannulas, fluids, instructions.
Wait, I say.
I am only a student nurse.
I can’t do this.

Yes you can, they say.
The airline has cleared him for flight, but we need to leave immediately.
No time to waste.

I call his haematologist in Canberra. He tells me to come straight from the airport to ED. He will accept care.
Good luck, he says.

Business class.
I am too frightened to notice it.
I spend the entire flight watching, waiting, monitoring.
Blood pressure.
Temperature.
Resps.
Scared that I will have to cnanulate and give fluids mid-air.
The air hostesses are kind. They can see the fear in my eyes.
He struggles.

We land at the airport.
My family are waiting.
He wants to go home to his house one last time, but there is no time to lose.
I can see him deteriorating by the minute.

Straight to hospital.
Fast-track through ED.
The haematologist is waiting.
He is kind.

We watch, and we wait.
I am exhausted.

A family meeting in Intensive Care.
I have watched this man that I love as a father suffer.
His family are suffering.
No more, he whispers.
Enough.

We gather round his bed.
Hand and foot massages, words of love.

A brief moment alone, just the two of us.
You have to do this, he says.
What?
Look after the dying. This is your calling.

I know in my heart he is right.
I have so much to learn, so many plans.
This man has taught me so much.
He has given me direction.

I know that one day, when I am ready, and have learned enough…
I will be a palliative care nurse.

Lacework of love

On 21 July 2020

She is more yellow than the winter morning sun.

The hosptial discharge summary is blunt. ‘Large tumour. Biliary obstruction. Discussed with family. Return for comfort measures.’

His grief overwhelms him.

He sobs, loudly at first, his whole body shaking, then his head falls quietly into his hands.

His pain is palpable.

“We’ve been married 64 years” he says, “but she has been my love for 67 years”.

I want to put my arms around him, but I sense that this would be his complete undoing. In his culture, men do not show emotion. They are sturdy, steadfast, stoic. And then, there’s COVID. I sit on my hands.

His heart is breaking and his life is crumbling.

He is alone.

“How long?”

I wish I could tell him. Like so many others before him, he wants a finite number. Would it help to know?

Perhaps.

Would it help to have a minute by minute plan of all the things to say and do before the end? How do you fit the love and emotion of 67 years into hours, a day or two at most?

“Have you told your children?” I ask.

He tells me his daughter is on her way. His shoulders start to shake again.

“My son…”

I give him a moment to breathe.

“Where is your son?”

“Melbourne”.

My heart sinks. Bloody COVID.

“Keep talking to her”, I say, “she can still hear you”.

He sits by the bed and lays his head on the pillow next to hers.

“I love you”, he says, then continues to quietly speak in his own language.

I see her stir, ever so gently. A flicker of the eyes. A twitch of the hand.

He moves his hand gently closer to hers, until they are touching.
Slowly, her fingers creep over his, and they start to interlace.
She cannot speak, but she still hears, and feels.

His sobs grow louder.

This is his last moment with her, it is so private it hurts my eyes and heart.

I quietly back out of the room and gently shut the door.

Sri Lankan Sunset

On 11 July 2020

As the sun started to set he drew his last breath, exhaled, and was gone.

The first time I meet him, I am 17 years old.
We pull into the driveway, and I am introduced to the family.
He is quiet, but welcoming. He invites me into his home.

He is a teacher, a father, a husband, and uncle.
His ties to his community are strong, as are the ties to his old school and family in his home country. He works hard to maintain friendships and keep in touch with everyone.

I begin to learn words from a different language.
He is Thathi to his children.
He is Punchimama to my father-in-law.
He is Uncle to my husband, to me, and to our children.
To many he is their teacher, or friend.

Over the next few years, I grow into this family, and they accept me.
We have different skin colours, different cultures, different backgrounds.
He always makes me feel welcome, and I have a sense of belonging.
He is especially kind. A true gentleman.

Over the years I come to know him well.
I watch as he cares for his wife who has Alzheimer’s.
He lovingly cooks for her, bathes her, reads to her.
Even after she moves to a nursng home, he continues his care and cooks for her every day, takes the meals and lovingly feeds her.

He sits with her in her last hours.
I see his heart break when she dies, and the light go out of his eyes.
His world is upside down. He has lost the woman he eloped with, moved continents with, travelled with, raised a family with.
He is wounded, but not broken.

He is grateful for everything.
He begins to rebuild his life, devotes himself to his children and grandchildren. He meets with friends, goes for walks, talks to everyone in his community.
Everyone calls him Uncle.

He cooks for others, for temple, for family.
His wadi, fish cutlets and sambal surpass all others.
His curries are amazing.
He loves to entertain, to talk about cricket, politics and travel.

In the 2003 bushfires, he drives into the heart of the crisis to try to protect his daughter’s family home. He is devastated to learn it is gone, along with many treasured possessions. He supports her and her family as they rebuild their lives.

Eventally living at home alone becomes difficult.
He is lonely and tired.
He chooses a care home, moves himself in,
and decides to make the best of it.

He starts ‘happy hour’ and shares his whisky with anyone who will join him. They debate politics, talk about the cricket, shake their heads at the state of the world.

He begins a scrabble club and beats everyone else, every time.
He participates in playgroup, activities, sing-a-longs.
He flourishes. The care staff all love him. He becomes Uncle to them all.

He mourns as one by one the members of his friendship group drink their last whisky, or play their last scrabble game.

When his daughter is dying from cancer, he sits by her side. He hangs his head in sorrow, quietly watches her struggle, and wishes it was him instead.
When she dies, another part of him dies too.
He and his son comfort each other, lost in a world of grief.

He calls me and asks me to visit him.
He wants to write his advance care plan.
He makes me promise I will look after him,
the way I looked after his daughter.

We make a pact, he signs the paperwork, we agree it is not yet his time,
and we enjoy regular visits and chats.

Bit by bit, his body begins to fail and slow him down, but his mind is as sharp as a tack and he hears everything. He knows he is getting closer to the end of his life, and he is tired. Walking becomes a struggle. Eating is difficult. He has lost his sense of taste, and appetite.

The chest pain grips him in the middle of the night.
It is fleeting, but unbearable.
He is terrified of a repeat episode and asks if I can stop it.
When it returns the next night, he uses the spray, which takes the pain away, but the experience leaves him exhuasted.

His nurses call me the next morning, worried that he is “refusing” to take his regular medicines, and is struggling to get to the bathroom.

We sit side by side, and I hold his hand as he tells me the time has come.
The things that gave him pleasure no longer bring a smile to his face.
The struggle is too great.
The medicines are an unwanted burden.
“What’s the point?” he asks.

I tell him he is control, and can stop whenever he wants to.

His biggest fear is the pain, and that he will be aware of people watching him die. After sharing his home, his heart, his love, he wants the end to be private and dignified.
It is time for me to deliver on my promise.

I reassure him I will do my best to keep him comfortable.
I talk with his doctor and geratrician, both respect his wishes to gently head down this final path in life.
His only wish is that it be a short journey.
I tell him that only he and his body can determine the length of the path.

After years of sitting in his chair in the sun he stays in bed.
This, above everything else, tells me he is truly ready.
He is comfortable, awake, and able to talk with each of his grandchildren and loving family members.

He begins to dream, and takes them with him to the old country.
They appear on the path to Galle Fort, and walk beside him.
His wife is waiting patiently at the top of the hill for him to join her.

One more promise to be kept.
A date for an evening glass of whisky with his nephew. One last happy hour.
After being in bed for six days, he is determined to drink the whisky while sitting in his chair. He demands a wash, fresh pyjamas for the occassion, and walks across the room.

He gives instructions on how he likes his whisky.
Two cubes of ice and a generous nip.
He lifts the glass to his lips.
I watch his hand and the glass shake with each sip.
We reminisce, look at photos, enjoy his company.

The whisky finished, he is ready to go back to bed.
It is the last time he will sit in his chair, or walk.
I see him every day, and make sure he is comfortable.
He opens his eyes when I gently kiss him on top of the head for the last time, and tell him how much I love him.

As the sun starts to set he draws his last breath, exhales, and is gone.
A piece of my heart goes with him.

Breaking bad news

On 19 June 2020