This week – 24-30 May – is Palliative Care Week. As a family member of someone who received palliative care, I have written this blog in tribute to palliative care professionals.
They put her in her prettiest nightie, the palliative care nurses, even though I had told them that the body would not be viewed. They took off the nightie she had died in, washed her, and re-dressed her in the one with the little flowers around the neck, and brushed her grey wavy hair into neatness.
“We couldn’t do anything about the mouth,” they said, and we all fell silent for a moment while regarding it gaping open, displaying old teeth and gums for all the world to see. “That’s OK, “I said, because all the world wasn’t going to see it, just me and those two nurses, and a few other people. According to her wishes, Mum’s corpse was to be afforded privacy – no viewings at the funeral – only to be briefly touched by the unavoidable utility of being examined by her GP in order to pronounce death, and readying for cremation by the funeral directors. The fact that the nurses had washed her, dressed her in her best nightie, and brushed her hair would’ve meant a lot to a woman who had always been insecure about her looks and who, correspondingly, took refuge in little harmless physical vanities. Not that the nurses knew that; they never really got a chance to talk to her.
Mum died sometime in the evening of Friday 19th May 2019, having spent 3 days in the palliative care ward at Mercy Health in Albury. I had chosen to camp out by her bedside, for my own sake as much as hers, while other close family members visited or rang. We had briefly tried nursing her at home, but the awful symptoms of a person dying simultaneously of kidney failure and Leukaemia – both physically and psychologically distressing – had defeated us. We could not make her comfortable. Palliative care had always been Plan B, and Mum was able to confirm, in one of her last few episodes of lucidity during that final dreadful week, that she was ready to go into the ward.
I was fully confident of Mum receiving efficient and appropriate medical care, and further impressed by the combination of kindness and expertise shown by the visiting nurse from the community palliative care program, who coached us in nursing her at home. So I was reassured by our joint decision to move her into palliative care, expecting that she would be more comfortable there.
And she was. The drugs they gave her took the pain, nausea, restlessness, and hallucinations right away. Too weak to even talk on her last Friday morning ever, she soon slipped into a sleep that was complete in its stillness. She died, peacefully – and I was there to see her last quiet breath – on Sunday evening.
So, medical efficiency I expected. But what struck me, and what I am profoundly grateful for, was the gentleness and dignity with which the nurses treated her poor dying body and, therefore and by extension, our poor frazzled minds. Such was the insensibility of Mum in her last prolonged sleep, such was her utter inability to be roused, that anyone could’ve played noughts and crosses on her bare naked flesh and she would never have known or stirred. But the nurses explained gently to her unresponsive form what they were doing as they cleaned and medicated her, and touched her tenderly in their ministrations.
In her article The inconvenient truth about dying, Sarah Malik explains that not everyone gets to die peacefully; some poor people’s symptoms are such that a complete absence of suffering is just not achievable. We were very lucky that Mum’s symptoms were able to be mitigated by the massive cocktail of drugs administered in palliative care. We knew that she was not suffering in any way. But we were also able to witness a level of care that not only tackled physical anguish, but also manifested a compassionate regard of the person Mum had been while alive. The nurses didn’t know this person at all, but they accorded this rapidly dying piece of flesh the dignity and consideration that every human being wants while they are alive.
In the absence of having to nurse Mum ourselves, we were free to adjust to the idea that she was soon to be gone, to start to grieve, to talk to her silent form one last time, to just be there.
After Mum exhaled her last ever breath, I sat there in disbelief, waiting for the next one. I waited for minutes. Finally, I rang for the nurses. They explained what was going to happen next, then the three of us stood looking at the poor body. One of the nurses reached out and squeezed Mum’s dead knee underneath its white hospital blanket. “Aw, Jenny,” she murmured. We a conferred about practicalities a little more. And then she did it again. “Aw. Jenny.”
We left Mum’s remaining clean nighties at the palliative care ward, and dropped off a few more: the nurses had mentioned that some patients did not have families to launder and bring in fresh sleepwear for them. I don’t know if this was a helpful thing for us to do or not. I felt like making a gesture, but I knew not what. Not that any was ever expected.