Loss, grief and the comfort of a good death
The late Queen Elizabeth II famously addressed the country after the terrorist attacks on London in 2001with the words “grief is the price we pay for love”. These words are taken from a longer passage by Dr Colin Murray Parkes, a British psychiatrist and pioneer in the study of grief and loss who wrote;
“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”
No one knows, has witnessed, or felt the impact of these words more than Marie Brogan, a mother of two from Sydney’s western suburbs. Her intense grief and loss began when her young husband died terribly and without dignity from cancer 14 years ago and returned more recently with the death of both of her parents in just 3 years.
Despite this, Marie’s optimism endures. In stark contrast to her experience of loss and grief, she lives a life filled with love, hope, faith and family. She beams when talking about her work with children experiencing challenges, and her love and deep pride in her own daughters as they grow into adulthood is palpable.
Marie became an advocate of assisted dying and a supporter of Dying with Dignity NSW following her husband John’s death from cancer. His passing was traumatic, distressing and marked by pain. She says the decision to advocate for the assisted dying laws was deeply personal, and until 3 years ago, wasn’t a conversation she’d had with either her mum or dad. However, both spoke openly about with her about accessing it at their end-of-life.
“Near the end, Dad’s dignity was gone, and he was begging us to take him to Western Australia to access assisted dying there. I knew this wasn’t possible and he was too unwell to travel but I couldn’t tell him that,” Marie shares.
A love story of faith and family
According to Marie and those who knew her parents, Ned and Phyllis Leonardi were a vibrant, happy and loving couple, who loved each other, their family and chosen family. Both Italian, they met when Phyllis, aged just 14, first arrived in Australia.
They married when Phyllis was just 16, and together they celebrated 63 years of marriage, raised three children and welcomed several grandchildren.
Phyllis was a great cook who showed love through food, so they were famous for hosting seasonal family gatherings, welcoming new and old faces to their table and home. Phyllis was a devout, practicing Catholic, raising their children with strong morals and commitment to God, family and community. For their 60th wedding anniversary Marie and their local parish priest organised a blessing from the Pope, which Marie says, was valued deeply by Phyllis.
Lockdowns and leukemia
Both Ned and Phyllis enjoyed good health until Ned was diagnosed with leukemia in the height of COVID restrictions and lockdowns. The diagnosis was unexpected and traumatic. Ned’s first symptom was degenerative blurred vision, quickly robbing his independence, and Phyllis stepped up to be his primary care giver.
Marie recalls that first year, when their lives were focused on tests, treatments, medical appointments, and keeping Ned safe from COVID. Ned’s quality of life declined, and he longed to see his family and friends, and return to his routine.
Ned suffered greatly from isolation during hospital stays where he endured brutal treatments and transfusions. Wards were often locked down to visitors, including Phyllis, and there were times when he feared he would die in hospital alone.
“Dad was put in a ward with a patient who had COVID, and he was scared he’d contract it. He rang me and said, ‘tell your mum that I’m going to get COVID and die here’. It was horrible. We all felt helpless, and we couldn’t see him or mum. This was before the vaccines, so it was difficult to even get an ambulance to bring him home,” Marie remembers.
Fortunately, Marie says, after a delay and several pleading phone calls, a young paramedic agreed to take Ned home in an ambulance so he could be with Phyllis.
Once home, Phyllis cared for Ned as they isolated for the mandated 2 weeks. They both tested negative to COVID, but Marie could see the signs of physical and emotional deterioration in her dad, and her mum’s exhaustion and sadness almost as soon as Ned got home.
“Dad degenerated quite quickly. He was fragile and kept saying he was done with all the prodding and poking of treatment. He was constantly weak and exhausted,” Marie says.
To keep their spirits up, Marie obtained an exemption letter for travel to her parents despite the restrictions. She visited and waved from outside her parent’s bedroom.
“The girls made a beautiful sign, ‘We love you Poppy’, and I used a ladder so I could be at the window and safely talk through the glass. My partner went over to trim the hedge bush how dad liked it to look, and this made dad smile.
“It was so hard on all of us. My sister Lyn lived at the back of mum and dad’s house on the same block, so she was able to help with groceries and errands but couldn’t enter their home to help mum with dad, or even hug them,” Marie says.
Marie’s older brother Leo lived on Sydney’s northern beaches, a ‘COVID hotspot’ at the time. So, despite being in the same city, COVID restrictions made it impossible to travel out of his area to see his parents who were also in a ‘hotspot’ or area of concern.
Not long after returning home, Ned slid down to the bottom of their bed and was in immense pain, but Phyllis was unable to move him and was deeply distressed when she called Marie for help. Marie called Leo and they both jumped in their cars racing to meet Lyn at their family home. Their family doctor arrived administering pain relief, but Ned passed away just hours later with Phyllis lying beside him.
“Thankfully Dad went quickly and as peacefully as possible without pain, and we were all there with them both. It was horrible for mum to lose dad; she took it hard. They were so close and did everything with and for each other. The funeral was small due to COVID restrictions, so not all the family could go which was challenging for us,” Marie shares.
Learning to live after loss
Marie says her mum was devastated by Ned’s death and as COVID restrictions eased, she withdrew from her routine activities including attending church. Marie says she continued to go occasionally but not as regularly as she had prior to Ned’s death.
“Mum always cared about her appearance. She was proud of her beautiful hair and made an effort with her clothing and accessories. I tried to engage her in meeting up with friends but so many had died, and without dad she wasn’t as confident. I reached out to My Aged Care to get her some support and engage her in some social activities. She made some beautiful friends which really helped her state of mind,” she says.
In early April 2022, Phyllis contracted COVID. Although she recovered quickly, a few months later she started to lose her voice. Initially attributed to COVID, it continued for months, and it wasn’t until swallowing became difficult, that further diagnostic tests were done.
Phyllis was diagnosed with a collapsed throat muscle above her voice box. She began speech therapy and doing daily exercises to rehabilitate the muscle. Marie describes the incredible frustration her mum experienced in not being able to talk or enjoy and even swallow food. Despite this, Phyllis continued with the exercise classes and started to make new friends.
“She was a stickler for doing what the doctor told her to. If they told her to do an exercise for 15 minutes, most of us do 12 (minutes) and she’d do an extra 5! She went to public and private speech therapy sessions, but they didn’t really have any impact, so Mum saw a neurologist, and was diagnosed with Motor Neuron Disease (MND) on 1 November 2023.
Phyllis was still living independently in her own home. using a wheelchair to move between rooms. She had housekeeping and gardening help, and personal care services from a wonderful woman Amani, who’d fast become a favoured friend of Phyllis’.
“Mum was seen at the MND clinic in February 2024. She was using an iPad to communicate and was scheduled to have surgery to have a feeding tube inserted on 19 March,” Marie recalls.
Sadly, in the early hours of the morning of Phylli’s surgery, her sister passed away and just 11 days later Phyllis’ last remaining sibling, Sid suddenly died.
A good way to go
“Sid’s death was sudden. We’d celebrated his 80th birthday only a few weeks earlier before mum went into hospital for her surgery. It was Easter Sunday, 31 March, as it was my late husband John’s birthday when I heard about Sid. Mum had asked to have the day for herself to recover after her surgery but once I heard I knew I needed to tell her in person. Mum asked how he died, and I told her that he was in his chair drinking his coffee and just passed away. Mum said, ‘it’s a good way to go, isn’t it?’,” Marie recalls.
This was the first time Phyllis and Marie discussed assisted dying. As a supporter of Dying with Dignity NSW, Marie says she was aware of the Catholic Church’s public opposition to voluntary assisted dying laws so wasn’t sure how her mum felt about it. She says her mum was afraid of what the future of MND had instore for her, and she wanted to die with dignity.
“I told her that I would support her whatever she wanted to do, and I’d talk to my brother and sister if she wanted to use assisted dying. I reassured her that the choice was hers. My girls too were very supportive as they’d seen what their dad went through” Marie said.
“Mum said, ‘I want to be with your father’ and I replied, ‘I know you do’. At first my brother and sister weren’t happy about her decision but over time they changed their minds and were very supportive at the end,” she adds.
Marie with her daughters raising money for MND research.
Faith at end-of-life
Marie says it was around this time that she realised her mum was no longer going to church because she could no longer swallow to receive communion. She felt embarrassed so stopped going to service and was uncomfortable asking her priest to visit her. Given her faith and commitment to the Catholic church, Marie spoke to her her mum about seeing her parish priest.
“Once I made contact, Father Simon came pretty much straightaway. It was wonderful of him to visit and spend some time with mum. I could see the peace it gave her. He did the anointment of the sick, prayed and talked to her. I told the priest about mum’s decision to use assisted dying, and he was very supportive and reassured us mum could have her funeral at the church. That was important to her too,” she shares.
Phyllis was receiving palliative care at home when she formally requested voluntary assisted dying (VAD), and Marie describes how grateful she felt for the supportive team that facilitated Phyllis through the process.
“All 3 assessments were done at home, and the team were all lovely. Mum was able to choose the date 14th June, and we booked the doctor to come in the afternoon. It was a smooth process,” she says.
Marie says the team spent time going through the VAD process and what to expect. They explained that the death certificate would record MND as the cause of death, not assisted dying, and reassured Phyllis that she could change her mind at any time.
The comfort of choice
“She was very open about talking about her choice after that and told most of her family and friends of her decision to use assisted dying. She picked her urn for her ashes, we talked about the service, what she wanted to wear and the photos she wanted for her funeral service at her parish church,” Marie adds.
In the time they had left together, Phyllis shared all her traditional Italian family recipes including her famous amaretti biscuits, passing her cookbooks to her grandchildren. She wrote letters for her children as she could no longer speak, and shared special moments sent messages to family and friends.
Phyllis died at home at the time and day of her choice by accessing voluntary assisted dying, less than three years after her beloved Ned passed. She was listening to a playlist made by her granddaughters and died peacefully surrounded by her children who supported her decision. She’d recently seen her priest, and her grandchildren, and was excited about seeing husband Ned again.
Marie continues to process the loss of her parents, aunt and uncle in just a few short years. She is grateful for the VAD legislation that gave her mum such comfort at her end-of-life. The love, pain and loss are evident in the stories and memories she shares of her family, but she is animated and hopeful when talking about the next generation, and the possibility of the family growing once again, personifying the quote that “The pain of grief is just as much part of life as the joy of love”
Marie reflects “I miss mum every day, but I can talk about it because she had a beautiful death and was able to have some control about how and when she died”.