My Journey of Grief and Loss Part 1

By Danielle Phillips

When I ponder the journey of loss and grief that I have been on in the past 3 years, I sometimes think “how did I survive that?”

The experience was something you could only read about or see in a television drama, but something you never thought would happen to you in “real life”.

It all started just after Covid-19 disrupted everyone’s lives. I remember watching news segments on elderly people dying in nursing homes, where their children and grandchildren weren’t allowed to say goodbye, and all contact was via phone or behind plate glass. I would say to myself and others “imagine being in that situation”. Well, the truth is I couldn’t imagine it. But little did I know I was about to live through it myself.

The human race is resilient, fragile, but resilient. And my parents were made of the tough stuff and taught me a level of independence and acceptance that ultimately served me during the hardest times I could imagine.

So let me take you back. It was Saturday night the 2nd of May 2020, and I was sitting at home on the couch with my partner and best friend. At this stage Covid-19 had been declared a global pandemic and all Australian states except NSW and VIC had closed their borders. Cases and deaths were peaking and the whole world as we knew it was shutting down.

The phone rang and it was my Dad. I could hear the desperation in his voice. The gasping for air and the pain of breathing. I asked him if we could FaceTime and when he accepted the video call, there he was bent over the laundry tubs, exasperated and grey in colour.

At this stage Mum was 5 years into her diagnosis of corticobasal degeneration and Dad was her full-time carer while also running a vintage wheel restoration business from home, which he built from the ground up 20 years ago. Side note: Dad was a mechanical genius and could do anything.

As he struggled to breathe and talk, my partner and friend encouraged me to book a flight to get to NSW the next morning, but when I suggested this to Dad, he responded with the typical reply that he and Mum always would; “don’t worry about me” “I’ll be ok” “I don’t need you to come”.

He called me back when he got himself into bed, and with some colour in his face and a bit more strength in his voice said, “I feel better now I’m lying down”.

The next day around 1pm I got a call from my Uncle telling me he had taken my Dad to the hospital, because he was only able to manoeuvre himself around the house in Mum’s wheelchair. After sitting in Emergency alone until after 6pm that night, the doctor advised Dad he just needed to “go home and rest”. No scans were performed, no bloods, no admission discussion.

Granted this was during Covid-19 and so no doubt a very difficult situation for doctors to navigate considering the symptoms Dad was presenting with. I would imagine a PCR or RAT were done to determine a Covid-19 result, but nothing more done to definitively diagnose Dad. The doctors advised Dad that he would be able to book in for further tests and biopsies via his GP during the week, so I booked a flight for the following day to NSW in order to attend these appointments and help with care for Mum.

No sooner did I wake up that morning I had a text from Dad telling me he was in Emergency again after being brought in by ambulance that morning. At that point a blood clot (Pulmonary Embolism) had been suspected, but Dad was put on IV antibiotics and oxygen to cover all bases. As I was on the train on the way up to the Central Coast to connect with Mum, my Uncle and my Aunty at Mum and Dad’s house I was able to FaceTime with Dad. I had never seen him in that much pain and struggling to breathe in my life. He was in agony. He had an oxygen mask on and could hardly talk. He seemed shocked and confused by how much pain he was in which was out of character for him.

When I finally made it to Mum and Dad’s house after a 2.5 hour agonising train ride, I managed to speak to the doctor on duty who advised I could only continue to FaceTime with Dad…but was prohibited from coming to the hospital to see him. Thanks Covid.

Soon after that, the doctor advised the X-rays and scans they had done earlier that day showed large shadows on Dad’s left lung which could have been one of many things; pneumonia, a clot, cancer…But without that oxygen mask Dad’s lungs were failing. The only option at that point was to admit him to ICU, put him in an induced coma, complete a biopsy and let his body rest. But there were no guarantees he would survive the night.

No matter the amount of begging, crying and pleading I did, nothing would inspire the doctor to allow me to come in and see Dad or worst-case scenario say “goodbye”. I felt completely and utterly helpless. Mum and I practically had to say our goodbyes on Facetime. Excuse me? FACETIME?!?!?

How does one grapple with that concept? You don’t. You can’t. You just radically accept. And in that moment, I became that person in a television drama experiencing something you never thought would happen to you in real life.

Dad was pragmatic as always. He said intubation was the only option left and if they find something irreversible or untreatable then we had to make the decision to turn off his life support. He told me to “look after my mother” and smirked “good luck clearing out the shed”. He said this with a smirk because Dad had 50+ years of stored machinery, stock and tinkering toys in that 150sqm space. With that, he hung up the phone in a relaxed “let’s get this over with” kind of approach.

Mum and I saying our goodbyes on FaceTime.
3rd May 2020, 8.22pm

To this day I always wonder: Did he know he was going to die? Did he think he would pull through in the way he always did after all the ailments he had? (broken neck, throat cancer, rheumatoid arthritis, hip replacement, knee replacements, spinal fusion…)

The back story behind his hospital admission is that in February 2020 Dad started to develop a nasty cough and began having some breathing difficulty. It was intermittent. But none the lesss he did the right thing and booked in with his GP to get things checked out. The GP prescribed antibiotics which didn’t help much, so prescribed some that were stronger and which seemed to help for about a month. When the symptoms returned in early April, Dad was referred to a specialist for a CT imaging scan to check his lungs. The results came back showing a small shadow on the left lung however the specialist didn’t recommend any further testing or follow up…#wtf?

In late April when Dad presented back at the GP with severe chest pain, the GP took it on himself to refer Dad for a biopsy. This was the 29th of April. By the 3rd of May, Dad had been admitted to ICU.

So back to my question: Did he know things were so critical in those final months? Did he suspect it was the throat cancer returning? If he was told it was cancer, would he have accepted treatment?

His tools were all on the floor in his workshop just as he left them amidst the trips to emergency that weekend. He was mid job. Did he think he was coming back to finish the job, or did he know this was the end? And my biggest unanswered question: “was this treatable had the specialist indicated that the need for a biopsy was imminent and was a matter of life and death?”

Back to the 3rd of May when Dad was admitted into the ICU and underwent sedation. His oxygen levels were lower than ideal, but he was stable enough to tolerate the testing and monitoring. At this stage during Covid-19, hospitals were allowing visitors into the ICU on a case-by-case basis. We had to wait 2 days before we were allowed to see him, until the PCR test results came back negative, which were done when he was first admitted by ambulance. When we arrived at the ICU, Dad was rigged up with more tubes and monitors than I have ever seen. Upon reflection I think how extraordinary our medical care is in this country. A team of superheroes worked in that ICU department and all of that equipment was their secret weapon to steal as much borrowed time for their patients as they possibly could.

When we arrived, Dad had a distressed look on his face. A furrowed brow. Perhaps he wanted to say something. Did he know we were there? His arms were tied down because he was visibly trying to lift them off the bed. He appeared to be in Mum’s words; “fighting for his life”.

On this visit the doctor advised that depending on the outcome of the biopsy, Dad may be able to be woken up. I prompted the question if that was the best thing for Dad. What if they discovered the worst i.e., he only had a week to live? The doctor assured me that if Dad was able to come off life support it would be best as there are often things people need/want to say. At this stage I still believed there was a possibility that he would come out of this alive.

Fighting for His Life
5th May 2020, 7.21pm

Fast forward to the 6th of May when my Mum, my Aunty Leonie, my Uncle Richard and I all arrived at the hospital that night at about 6pm for Dad’s nightly visit. The doctor on duty met me at the door of his room and asked to speak to me privately without Mum. She had a soft, soothing and kind British accent. She began to explain that the biopsy had not gone well, and it had exacerbated the trauma that Dad’s body was already experiencing. His heart rate had dropped and his oxygen saturation even with the supplementary oxygen had dropped below 70% (ideal levels are over 95%). She advised the ICU believed that after further scans that day they found that Dad had a “terrible terrible cancer” which had now infiltrated his entire left lung, spread across to his right lung and up to his heart. The doctor confirmed that there was no chance of survival for Dad. Pretty grim right?

So, my Mum and my Aunty were then invited to come into the room and were given the harrowing news. My Aunty who doesn’t always show a lot of emotion seemed in complete disbelief and lost for words. Mum began to cry, but with great difficulty, as her disease made it extremely difficult to use even the smallest of muscles, so crying was almost impossible for her. She was unable to sob, to wail (not that wailing was her style) or to produce tears. My Aunty proceeded to call my cousins who have been more like brothers and sisters to me, telling them to make the trip to the hospital to say their goodbyes. At this stage the ICU doctors were not arguing our request to have our extended family attend Dad’s room. We needed to be grateful for small mercies, right?

So, between 8pm and midnight we all gathered around, holding Dad’s hand, trying to sit Mum on the bed and coordinate her head close to his so she could kiss him goodbye. Mum’s speech was down to just a few words, but she managed to get out “Bye Bye Gary”.

The doctor rostered on the midnight shift introduced himself, extended his condolences and went on to recommend we turn off Dad’s life support before the lactic acid started building up from heart failure. Whilst the doctors said we could stay with Dad as long as we wanted, I guess we knew we were delaying the inevitable and prolonging the agony. We had been there since 6pm. Mum in her wheelchair which was incredibly uncomfortable and without her regular pain medication being administered (muscle relaxants). She was tired, she was sore. So, she called it.

About half of the family headed back home to their young families, and the others stayed with Mum and I, waiting for Dad to take his final breath. Dad was unhooked from all the tubes and monitors at about 2.20am and as a family we sat there watching his breath become more and more laboured, until he passed away just after 3am that morning.

It was after everyone left the room, I asked for a few minutes alone with Dad. At this moment I whispered to him I was going to start anew. Begin a new career in helping people. I didn’t know what that would look like, but as time went on, I found inspiration. And so Sage Executor Solutions was born.

Retelling this story opened old wounds, broke my heart again and took my breath away. As painful as it was to relive these memories, I felt it was important to share my experience with anyone connecting with me personally or professionally, to reassure you that I can empathise with and understand living with loss and grief.

My journey of grief and loss - Part 1

Deceased Estate Administration: A Comprehensive Guide

My journey of grief and loss - Part 2