How he died

Last week I heard someone say, "how he died". I looked up, the words touched me deeply. They didn't pierce me like an arrow, it felt more like a splat on my shirt. The conversation moved on and I could hear myself refusing to leave. I could hear myself saying, "how he died, how he died mattered", "yes it mattered to me", "it matters".

You see my Dad died last year. He died like many others, in a nursing home. He wasn't alone. We were allowed to spend the last twenty-four hours with him. Well, that's the story I told myself. I told myself "He wasn't alone". The first question anyone asked me when he died was "did you get to be with him?" I could answer that I did, and the chorus responded with relief and sentences like "I'm glad, what a relief, that's great."

The truth is it wasn't great, and I am not sure I was with him. Dying doesn't happen in a day even if we die in a day. Goodbyes take longer than that and if we don't get to say goodbye that day, we will keep saying goodbye for days, weeks and years after the person we loved died.

When I was able to see Dad after four months of being exiled, I could barely recognise him. We hadn't facetimed or had windows of love because Dad would get distressed and confused when he couldn't make sense of sounds. His brain had deteriorated so much that he couldn't really perceive. Four months is a long time not to see someone who is slowly leaving this world.

I knew my Dad, I knew his expressions. I knew how his forehead crumpled when he was in pain and how he would sing when he was happy. Dad knew me, even though he lived with Alzheimer's, he would rub my hand when I visited, blow me kisses and tell me I was beautiful. He didn't know my name and he couldn't see the spoon approaching his lips until it touched his mouth, but he knew me.

How he died mattered, it mattered to me. Dad died alone, his dying wasn't one day. In fact, I have a feeling he had left the room well before I entered it, in the last twenty-four hours of his life. He was not aware or conscious or present. His body was caught in the labour pains of his own rebirth and death. I didn't get to say goodbye. I didn't get to be with him even though I was with him in the room, he wasn't with me.

Somehow this part of the story is being lost. The experience of the pandemic and restrictions re COVID-19 are asking us to give up the hope of a good death. The hope that we could journey together. Families are being separated from each other in goodbyes and no one is noticing the effect that has. The words that weren't said, the comfort that wasn't given, the time that wasn't shared. I had a one-sided goodbye, a half goodbye.

I am a bereavement counsellor and manage bereavement counselling at a major Sydney hospital. I hear brilliant, brave people share their stories every day, of how they experienced how he died. We know the way we die matters. We know it matters for the person who is dying and the people who love or care for them. Yet somehow through this time we are asked to forget it matters because of the pandemic.

We are supposed to pretend and be grateful for the two or twenty-four hours we spent with them. If we can't be there, then the pressure is to be resilient (I hate the word) or be grateful they didn't suffer, or it was quick, or a stranger stood by them.

Why can't we acknowledge it was not what anyone wanted? Why can't we be truthful and honest that people are dying alone, and people are saying goodbye alone and it matters. It has a consequence. The consequence is simple, its more grief, more trauma.

Many years ago, I was called to the scene of a road accident. Two children had been hurt. I stood by the kerb with strangers concerned for the well-being of the children that lay in the middle of road. The children were circled by emergency staff. It didn't take long for the story to emerge from the crowd of onlookers. The children had been hit by a car as they crossed the road. One child was fine, the other had a head injury. Five minutes later the story grew, one child was being air-lifted by a helicopter to the hospital. Then suddenly the ambulance drove away and the Doctors attending the scene joined me at the kerb. They explained both children were fine, they had no significant injuries, and they were going to hospital for observation.

I wrote to the staff in the hospital that day and explained the two key words in grief story telling /sharing are truth and inclusion. I explained when we don't get to hear the truth or be included, we imagine the worst. I encouraged staff to tell patients and their carers the truth of what is happening. The truth about their diagnosis and treatment and trust they will manage, they will cope, even if that includes the word dying. The Doctors at the scene that day knew the children were fine, while the people waiting on the roadside imagined the worst. They didn't have access to the truth and weren't included and they created a story and it was not the truth.

When our loved ones die without us with them, near them or by them, we imagine the worst or like me, we don't imagine at all because it's as if those months were lost in time. Platitudes and invitations to be positive or look on the bright side, are not what we need. Reminders of the need for resilience or expectations that we should be grateful or accepting of health restrictions ask us to bury our grief, forget our goodbyes and pretend.

All any of us need is the opportunity to share without judgment or feedback, how he died. To be heard, to share our pain, to feel the loss. I wanted to see Dad in the weeks leading to his death. I wanted to feed him and notice his swallowing change. I wanted to wipe his face with a wet cloth and rub his sweet, confused brow. I wanted to feel his soft smooth fingers rub mine, ever so faintly, as I sat humming Amazing Grace. I want those days back, I know I can't have them. I just want to be able to say, I wish I could.