Category: A Widow’s Walk

The practice run

On a seemingly ordinary Monday afternoon in May 2019, my phone rang, and it was the nursing home calling to inform me about yet another choking episode for Allan. The speech pathologist, who happened to be on-site, had made the decision to call an ambulance, and Allan was en route to the emergency department. Little did I know that this would be the start of a rollercoaster of emotions that would define the coming days.

The hours that followed were filled with nerve-wracking phone calls to the emergency department, as I advocated for Allan’s wishes and his intention to refuse certain medical interventions. It seemed like everything was back to normal when I received a call from the ED, reassuring me that Allan’s scans showed clear lungs, and he was on his way back to the nursing home.

However, the next morning, the nursing home threw me a curveball by asking what they should do with Allan. It turned out the speech pathologist had declared him “nil by mouth,” and the nurse who called me said, “there’s no care directive, we can’t starve him, so what do you want us to do?” To say that I was shocked and angry would be an understatement.

Imagine my frustration, knowing that was indeed an advanced care plan that had been developed in consultation with the Clinical Manager and the GP. This plan had been established after the neurologist declared Allan to be in the palliative phase of his illness. I was left shaking, unable to drive, and in dire need of support. Thankfully, a dear friend came to my rescue, driving me to the nursing home.

During a challenging afternoon, we confirmed Allan’s intentions, which included refusing a feeding tube, intravenous hydration, and antibiotics, opting only for pain relief. At this stage of his disease, Allan was nearly non-verbal, suffering from severe dysphagia, and had dropped to around 35 kilograms in weight. As someone with a background in occupational health and safety, I knew that without nourishment and hydration, he had only a few days left.

I began preparing for the inevitable, reaching out to Allan’s NDIS support coordinator and service providers, who proved to be invaluable. His NDIS plan was adjusted to ensure that a support person would be with him for 10 hours a day, so he wouldn’t be alone during his final days. The outpouring of support from these individuals was truly commendable.

I also started making arrangements with the funeral insurance provider and the funeral director, even organizing a removalist in advance to pack up Allan’s room and transport everything to my home. I took two weeks off work, anticipating the worst. I checked into the Mercure Gold Coast and prepared to make his last days as pleasant as possible.

Allan slept most of the following Tuesday, but when I called the nursing home on Wednesday morning, I was bewildered to learn that he had been fed and was resting comfortably. It contradicted the “nil by mouth” decision, and my anger grew over the lack of adherence to Allan’s wishes. I rushed to the nursing home, only to be told by the Clinical Manager that he had changed his mind, with no witnesses except her, and that the speech pathologist had amended the report to allow comfort feeding. Allan had not been provided with any additional pain relief.

This contradicted the GP’s previous approval of the “nil by mouth” decision, and the lack of proper documentation left me frustrated. It also meant that the 10 hours of daily personal care funded by the NDIS had to be discontinued.

After a whirlwind of events, I had to disconnect from the nursing home, although I remained committed to Allan. The experience had taken me on an emotional rollercoaster, swinging from preparing for the worst to a confusing state of uncertainty about Allan’s long-term outlook.

What were the failings in palliative care? Was it that a palliative care plan was not put in place, at that time, after his decisions on the Tuesday afternoon? Was it that I wasn’t sure if his wishes weren’t being adhered to? Was it that the confusion over the speech pathologist’s report? Was it that they didn’t take Allan’s wishes seriously at that point? Was it the GP’s failure to implement a terminal care plan?

In retrospect, this tumultuous period became a devastating “practice run” for Allan’s end of life, just six weeks later.

What is Huntington’s Disease?

Huntington’s Disease (HD) is a serious and currently incurable brain disorder that affects how people move, behave, and think. In most cases, it starts showing symptoms in a person’s 40s, and their life expectancy after that is around 15 to 20 years. However, it can also affect younger individuals in a more devastating way.

People who have the gene for HD are at a much higher risk of suicide, and sometimes their changing thinking abilities can lead to problems with the law.

It’s estimated that in Australia, there could be between 1,657 to 3,000 people with the HD gene in their DNA.

This disease is passed down through families, and if one parent has the faulty gene, their children have a 50% chance of inheriting it.

HD was first observed in families back in 1872, and we didn’t understand its genetics until 1983. In 1993, scientists found the huntingtin gene, which is the key to HD.

This gene has a repeating pattern of three of the four DNA building blocks (C, A, and G) on a specific part of chromosome 4. This is called a “trinucleotide repeat.” When this repeat is too long, it leads to the creation of a harmful protein called mHTT, which causes brain cells, especially neurons, to die.

Today, doctors can diagnose HD by examining a blood sample and checking for this specific repeating pattern on chromosome 4.

Why do I care to write about Huntington’s Disease? My late husband, Allan, had this condition. In his case, his blood test showed 49 CAG repeats, which is a clear sign of HD. Thankfully, we didn’t have children.

That is the path to me becoming a widow.

No aide-memoire for grief

December, 26, 2017 – Vienna, Austria. Statue of grieving angel at entrance to ancient Saint Marx Cemetery. Weeping angel of grief on Sankt Marxer Friedhof old abandoned graveyard. By aliaksei kruhlenia

Poetry is tricky!

I like the villanelle form for its mandated structure and rhyming scheme. These two poems were written for a course in poetry. I have been told that Poem 1 is melancholic and introspective, and that Poem 2 is more fluid and descriptive.

This poem is an exploration of grief and memory. My late husband was taken by Huntington’s Disease. It’s an inheritable disease that has a 15 to 20 year life expectancy after the onset of symptoms. Our relationship was neatly bisected; 15 years before Huntington’s Disease became apparent, and 16 years after.

Poem 1
Bereft’s thoughts of that last outward breath,
The prey of the eagle, running for its life.
Beloved’s last battle to the death.


Beloved gained entry with the Shibboleth,
No fear of rejection or strife.
Bereft’s thoughts of that last outward breath.


Travel plans made with coin or Gilbreath,
Then driving miles to see a man with a fife,
Beloved’s last battle to the death.


Enjoying the arts, from Chess to Macbeth.
Picnics and cheese, but who forgot the knife?
Bereft’s thoughts of that last outward breath.

Family history, meeting old Aunt Elspeth,
The old dear was batty, the rumours rife.
Beloved’s last battle unto the death


Forget your pain, my love, drink from the Lethe
As Bereft is the widow, no longer wife.
Bereft’s thoughts of that last outward breath,
Beloved’s last battle unto the death.

Poem 2
Her bereft thoughts of that last drawn breath,
Seeing the eagle’s prey, running for its life.
Your battle, beloved, to the death.


Her beloved gained her heart with a shibboleth,
Wiping away fears of family strife.
Her bereft thoughts of that last outward breath.


Travel plans made with coin or Gilbreath,
Old road maps to find a man with a fife,
Your battle, beloved, to the death.


Enjoying the arts, from Chess to Macbeth.
Picnics with cheese, but who forgot the knife?
Her bereft thoughts of that last outward breath.


Searching family history, finding old aunt Elspeth,
Her memories tattered, her gossiping rife.
The battle, beloved, to the death.


Forget your last battle, my love, drink from the Lethe
Cries the widow, no longer the wife.
Her bereft thoughts of that last outward breath,
The battle, beloved, to the death.

Essay: Love and Grief

Love, to quote the song, is a many splendored thing. So many songs are about love; wanting it, having it, losing it. According to the Ancient Greeks, there were eight kinds of love:


Agape – Unconditional love
Eros – Romantic love
Philia – Affectionate love
Storge – Familiar love
Mania – Obsessive love
Ludus – Playful love
Pragma – Enduring love
Philautia – Self-Love


Most relationships, married, de facto or otherwise, would be a combination of Eros, Philia and Pragma, and if you’re lucky, Ludus. Yet while most relationships are a combination of Eros, Philia and Pragma, there will be, there are, nuances, influences, culture expectations, religious beliefs, making the love in every relationship a little bit different.


You cannot have grief without love, and if we consider that, with a global population of eight billion, there are eight billion ways to love, then there must be eight billion ways to grieve. Why? Because grief comes to everyone, at some point, the loss of a parent, the loss of sibling, the loss of a child; grandparents, aunts, uncles, cousins, friends, colleagues, pets.


Grief is complex. It can be debilitating, isolating, uncomfortable, unbearable. It is deeply personal, and unique to every person. Some express it externally, some hold it internally. Some have strict religious edicts about grief.

Despite pop psychology, grief is not linear process; you do not progressively work your way through denial, anger, bargaining, depression and finally, acceptance. Grief cannot be gamified like that.


My own path through grief has been convoluted. My late husband first started showing the signs of Huntington’s Disease in 2004. He was confirmed as having Huntington’s Disease in 2008, and his condition deteriorated until it killed him in 2019.

We met in 1987, had our first date in 1988, and were together for the next 31 years. During the last 16 years of his life, the last 16 years of our lives together, there were thousands of pin-pricks of grief. Pin-pricks of a life lived in a manner not planned, not anticipated, not foreseen.


On the day my late husband died, in his nursing home bed, a nurse by his side as he took his last breath at 1.45am, grief didn’t appear until I had to give voice to it, say the words.

I missed the phone call from the nurse at 1.50am, as my phone was on silent – I had forgotten to take it off silent mode after leaving the nursing home the day before. So when I woke, it was to a voicemail message to call the nurse, and I knew that my husband was gone. I was still running in crisis mode (that’s a story for another day). Consequently, my instinctive response to the nurse was that I would be there in fifteen minutes.

The nurse, calmly, stopped me, telling me that there was no urgency, any more. That nurse literally stopped me in my tracks.

I was numb, not in disbelief, just numb. I had prepared for this, but that preparation, the checklists, didn’t encompass the emotions, the rawness, the nakedness, the numbness, the hollowness.

I was staying at a hotel, and I had put in an order for a room service breakfast. So the next person I spoke to was the night manager at the hotel, asking him to cancel that breakfast order. That poor night manager for the first wave of grief-stricken tears, down the phone line, when he asked of everything was alright if there was a problem.

Somehow, I explained to him that my husband had died and I needed to go to the nursing home and wouldn’t be there at the hotel at the time I had ordered breakfast for. That night manager was outstanding and that in itself is a story for another day.


How else did grief appear, on that first day? Dry eyes, and numbness, in the car in the way to the nursing home. Dry eyes and numbness on the way in to the nursing home, but at the first hug from the personal carers and nurses, we were all in tears, grieving our collective loss together. Dry eyes and internalised grief, howling inside, in his room where his body was laid out on the bed, already washed and dressed.


How had I loved him? How did I grieve him? How are we robbed of grief, how is grief disallowed on that first day? The grief of the widow and the grief of the nursing home staff, all grieving the same man, but all in different ways. For them, Philia; for me, Storge, Philia, remnants of Eros, and a touch of Agape. Yet, in my circumstances, grief had to be delayed, because the funeral directors were late coming to take his body away, and I had to arrange the removalist to come in and pack up his room. For the staff, they also had to suppress their grief as they attended to the other residents of the nursing home.


For employers, grief is an inconvenience, impacting the performance of a team member. For friends, they don’t know what to say or do, so many don’t say anything. For service providers, grief in customers must be endured. For the bereaved, though, grief becomes a companion, part angel, part devil, riding piggy-back on you. You don’t know how heavy that companion, riding piggy-back on you, and you don’t know how long you have to carry it. There might be a photo, the way someone walks, a song, a situation, that brings the grief on, and it seems unbearable at that moment.

That moment, though, wouldn’t be there without the love, for in the same way that light always brings a shadow, love will always bring grief; they are twinned and cannot be separated.

Was my grief less worthy because we didn’t have any children? No.

Was my grief less worthy because I’d the stress I had been under, and the anticipatory grief of the previous fifteen years? No.

Was my grief less worthy because he had been in a nursing home for five years? No.

Was my grief less worthy because we had had an unfortunate “practice run” six weeks earlier? No. (That’s another story for another day.)

Was my grief different to any other person who was widowed in the same day? Yes. There are nuances, influences, cultural expectations, religious beliefs, making the grief different in the same way it makes the expression and experience of love different.


As for the orderly, pop psychology five stages of grief?


DENIAL – at no point did I ever deny that my husband was dead. But yes, I was numb, for the first few days, getting through notifications.
ANGER – the anger came much, much later, four years later, in fact.
BARGAINING – never.
DEPRESSION – grieving through the Covid-19 years was tough, and long-term, the depression required medication.
ACCEPTANCE – from day one. It was a relief, after supporting him through 15 years of degenerating. He was no longer in pain, no longer suffering. Grief is my constant companion, sometimes heavy, sometimes light, sometimes absent. I still have the red boots that I bought on day two, and the dress I bought on day three. I claimed the act of becoming a widow was my renaissance.


Love is a many splendored thing, and so is grief.