“Death is not the opposite of life, but a part of it.” – Haruki Murakami
Debates related to Voluntary Assisted Dying challenge mindsets and inspire us to question established ideas and whether they are relevant.
Life can do that as well.
Our family had a six-year experience of grief, beginning with the loss of my father-in-law Ron in early 2013 and concluding with Mum’s death in 2019. It was relentless in its teachings, but not all sad.
There was laughter and plenty of love along the way and grief you learn to incorporate into life because while it changes form it never leaves you.
When Ron, 89, was dying in 2013 I learnt about ageing and the elements of a ‘good’ death.
Sometimes you don’t get time to prepare. A close friend died from an undiagnosed heart condition. Though surrounded by children, a business, family, a job and volunteer commitments, I eventually found places to allow emotions free rein.
Talking with other mums we realised we were doing similar things, including what one had nicknamed “cry-ving” – crying in the car, alone and between appointments to avoid being ‘unprofessional’ or burdening anyone, particularly the children. Grief can get uncomfortable for the rest of the world when they’re not the ones feeling it.
The beach became salve for my heart. Endless sky and ocean eased internal focus – waves hitting rocks and reforming demonstrated broken hearts could heal.
Learning to understand the complexities of grieving was well timed – 2013 was the gift that kept giving.
Mum phoned one day. The rib pain she was suffering was caused by metastasised cancer – her bones were like honeycomb.
We talked for an hour and afterwards I needed something to do. I wandered around the house like a jump-cut film character. Distracted, surprised to find myself in different rooms, I started to think about support such as pre-portioned soup in the freezer and being an ear on the phone for Mum and her partner Don.
I started making Mum a blanket, knitting obsessively as every feeling that needed to churn through me did. Held in place by the ever-expanding blanket, I couldn’t run or hide, so I sat with each emotion until it was done. Mum never used the blanket, medication caused her to overheat, but it served a different purpose. Creating it gave me time to come to terms with the diagnosis, find peace, focus and be of calm assistance – a steadying sidekick on a heartbreaking journey.
There were many meaningful times along the way and a true appreciation for her strength of will. In our original conversation Mum made it clear she wouldn’t resort to intensive chemotherapy that would make her lose her hair, and she wasn’t parting with any breasts either, thank you very much! So palliative chemo it was. Doctors tried various concoctions to find tolerance levels and Mum’s cancer count decreased to the point her doctor suggested she would probably die of old age.
Good days and bad days; swings and roundabouts.
One day Mum was booking a holiday and wondering whether to tell the travel agent she was ill. “Oh the cancer card, absolutely use it, you might get an upgrade.” It felt lawless to be saying such a thing, we were ‘good girls’, taught to think of others before ourselves and share any advantage rather than exploiting it for our own benefit. But cancer wasn’t an advantage, Mum was paying dearly for it, so maybe there were different rules? We even joked about printing her an actual card to use. That humour doesn’t work for everyone but when our family is in the trenches it’s our way of turning the mood of a moment.
Dad died in 2016. Thankfully we’d visited regularly, talked a lot and resolved outstanding issues. When he died, each one of us was sure of the love for the first time in our lives together.
We moved back to the city in 2017, perfect timing with Mum’s condition, as things were both better and worse. She was feeling better but tiring quickly.
Her activities were limited to medical appointments, an occasional meal out, doing a bit of washing, gardening or cooking and enjoying visitors. Most of her life was spent on the sofa: reading, television, sleeping. We had movie screenings with her there and Mum always had art and craft projects, jokes and family stories for the grandkids.
Mum found it difficult to part with belongings, so when she asked me to help her we found meaningful homes such as a women’s refuge, charities and op shops.
She wanted a say in her funeral then hit a point where it was difficult to focus on the time she wouldn’t be here anymore, so we stopped talking about it.
The best we could do at this time was to be flexible and follow her lead. Some days Mum was engaged, others everything seemed to annoy her, but she still wanted you there.
Occasionally I experienced a resurgence of my early panic about losing her and had to drive around before I went to her house to get my head in order so my energy wasn’t exhausting for her. I’d buy her something from the bakery because the house was already full of flowers and it gave her pleasure to have a taste of cake, even though she could rarely stomach more than a tiny spoonful.
In mid-2019 Mum had a big decision to make. Her doctors had found a tumour. An operation could remove it and she might get a few more years but she’d have to stop the palliative chemo for a few weeks and no-one knew what that could cause. Otherwise the tumour would become terminal. We talked about it and assured her we would support her whatever she decided – rock or hard place, there were no good choices.
Mum chose the surgery and spent three weeks in hospital which she found sociable although she was ready to go home by the end of it. Then the ‘numbers’ came in. And they weren’t good.
For her 78th birthday – November 9 – we went to her happy place, Crown, and stayed overnight, dining at Epicurean. She was exhausted after dinner and went to bed. I put on pyjamas and settled in for the night.
At midnight there was a knock on the door. Mum wanted to go back to the casino, so I dressed and went with her. We spent three hours finding poker machines she deemed lucky and playing a few rounds on them, chatting to security guards and people at other machines, drinking water and talking. Mum was so energised she walked back to the hotel pushing her wheelchair.
She was supposed to be starting chemo that Monday but in the late afternoon rang to tell me she had decided not to.
I went with Don and Mum to her final oncologist visit where she broke the news to him and the staff, who were still caring and nurturing through their own tears.
It was clear she had made peace with her choice. In a photograph from that time she’s smiling, her face transformed by the relief of knowing.
On November 27 the boys and I were having dinner by the river when Don rang. Mum’s condition had declined and he thought ‘this was it’. My brother and niece also received a call and as we drove down the coast the sunset filled the horizon and then the wider sky with a whole palette worth of Mum’s favourite purples and pinks.
We had a few hours to sit with her, listen and share the love one last time. Mum spoke joyfully about the recent family gathering for her birthday, offered encouraging life advice to the kids and even joked with me about our momentary role reversal. I felt the gentle untethering of her bonds to each of us, one after the other, until there was just one left for Don.
During the night he had to call out a palliative care nurse. Around seven o’clock Don called us again. By the time we arrived Mum had died. We each spent time sitting with her body, saying goodbye.
The universe conspired to lighten the mood. One of the funeral home attendants could have been a relative’s twin, he had the same name and the van he was driving was a Mercedes – Mum had always wanted to ride in a Mercedes.
When we went into her room after they left – a stunningly emotional moment – we found they had made the bed, a lovely surprise that would have delighted her.
We had a week to organise the funeral and it was anything but morbid.
Once the family had left the private viewing and before the crowd came in I needed something to do. The staff suggested I help put the lid on the coffin. It was comforting, like tucking a loved one into bed.
I’d been writing a eulogy for six months, it was heartfelt and fine, but my brother stole the show with his beautifully funny stories of Mum’s 1970s cooking experiments; his banishment to the bathroom (the coolest room in the house) as a January baby; the herbal tonics we were forced to swallow for health purposes; and various other quirks.
Probating Mum’s Will was complicated by Covid-19 lockdowns but we were relieved she had gone before the worry of the pandemic. By the time we’d finished in August 2020 I needed a break and took myself off the roster of emotional support.
Grief has a legacy and because we couldn’t talk about anything else for a while we reminded each other of our grief. We’ve had to find happier topics.
There’s a lot of emotional work around death, often invisible to those on the outside. They see happy, grumpy, flannel-headed, super-focused or silly while you’re driving a complex series of levers and pulleys to regain control of your life.
You can’t foresee the blindsides, like picking up the phone to call with news, then remembering.
Mum died on her own terms. Her death gifted an understanding of living in the moment, stronger boundaries and a need for authenticity. I’m better at recognising ‘my’ people now.
Mum was lucky to have choices about whether to continue treatment; everyone involved supported her right to make those choices; she was sharp as a tack and relatively self-sufficient to the end; and we were all grateful for the time to get used to the idea of life without her.
There was time to ask important questions and check facts before information was lost. To tell the truth, to heal painful episodes and bask in love.
Death doesn’t seem so daunting when you experience its sadness along with its gifts.
© Danielle Berryman 2021