August 2018

The Nation Reviewed

The death doula

By Sarah Krasnostein
Annie Whitlocke is helping to break the silence around grief and dying

The coffin is smaller than a sandwich. Annie Whitlocke, a Melbourne-based death doula in her 60s, plucks it out of the “Goodbye-box” she ordered from a play therapist in the Netherlands. Other contents include human figurines of various sizes, miniature flowers, hearts, stars, a candle holder, an emotion dice with a different facial expression on each side and a music box. Everything is made from blond wood and handpainted, sparingly, in gentle colours. The medium is the message; the toys’ frank utility reflects a mindset profoundly different from the modern Anglo-Australian psyche.

“I thought this was just perfect,” Whitlocke explains, turning the crank on the music box to release a sweet, but not sad, song into her cosily colourful living room alive with fruit and flowers, pets and artwork. “It’s for children to play. Mummy’s going to stand here, dad or a friend is going to stand here. We’re going to put the flowers over there.”

She kneads the emotion dice in her palm, considers its different sides. “So maybe they’re feeling sad right now, maybe they’re feeling a bit angry or, you know, maybe there’s some happiness. In the coffin, we can put flowers, notes, it’s just beautiful.”

Death doulas fulfil a non-medical role, providing a range of bespoke practical and emotional support services to the dying and those around them. In addition to her private practice, Whitlocke is a spiritual/pastoral carer at Monash Medical Centre and the Peter MacCallum Cancer Centre in Moorabbin. Her work involves training other spiritual care workers, and being on call for Buddhist support at end-of-life for several Melbourne hospitals.

As well as professional training, Whitlocke brings life experience: childhood abandonment; illness and isolation; single motherhood; miscarriage; divorce; a decade spent in searing pain from undiagnosed endometriosis; deaths prolonged and late; deaths too quick and early (a husband, a newborn grandchild and a newborn nephew).

“I got into Tibetan Buddhism because it’s so confronting and challenging and I love that,” she says.

“Between the ages of 20 and 28, I had to have several operations. I wanted to understand how I could come to terms with this pain, and I started putting it to Buddhism. They said, ‘Move closer to the pain.’ So I would practise getting closer to the things that scare me so that they don’t remain unknown and a threat but they become known and maybe a not-so-close friend.

“There was this article that I read about an Australian surfer. She said when you’re out deep and can feel the mightiness of the water and that wave beginning to form, your natural inclination is to move away – but in surfing you lean into it. I could so relate to that. And then I was reading this book; this young man was with a more experienced worker, setting up telephone poles. The young guy said, ‘If that starts to lean, I’m running so fast.’ And the old guy said, ‘No, you move in close to it because then you know where it’s going because you’ve got your hands on it. When you’re running away, you’ve got no idea where it’s going to fall.’

“So I learnt to deal with disappointment, loss of expectations. I learnt to deal with men: doctors, surgeons, specialists trivialising what I was saying, not listening to me. I had to learn humility and perseverance. I had to learn not to mince my words.”

This is part of the service she provides to her clients. (“I try not to use the word ‘patient’ because it sort of separates me from that person.”)

“There was a woman with a neurological disease,” she recalls, her rescue dogs snoozing nearby. “I was with that family for months, got to know her husband and the children and grandchildren.

“The hospital hadn’t said anything about an advanced care directive, so I explained the significance of it. First, I said, ‘What are your values? What are the things that are important for you?’ She was quite advanced in her disease, and she said, ‘My family.’ She didn’t have a lot of needs, just wanted her family around for that connection.

“I said, ‘Do you have any idea of where you’d like to die?’ She said, ‘I want to die at home.’

“Her husband and children were there, and I said, ‘Does everyone understand that? Have you spoken to them?’ She said no. So I said, ‘Well then, this is the first thing we start working on.’

“I would go with her to specialist appointments. This woman was a people pleaser, always wanted to say things that she thought the specialist wanted to hear … [So] when the specialist asked if she had any questions, she said no.

“I said, ‘Well, I do. I want to let you know that she wants to die at home.’ Straight away the neurologist says, ‘Well, that’s really difficult.’

“And I could feel my frustration coming up, leaning towards a bit of anger,” Whitlocke says, parsing her feelings like ingredients in a sauce. “This poor woman. So my role was coming up with options and suggestions.”

Eventually, with the woman’s GP, they implemented a plan for her to die at home.

Radical acceptance of uncertainty and impermanence is what one may expect of a person who shares her home with a senior Tibetan monk, who is currently eating his lunch out the back, and an enormous gold-painted Buddha. But Whitlocke’s focus is less on letting go and more on letting in – finding language for everything hidden in the dark silence that society insists on draping over the dying and those left behind.

Whitlocke fondles a luxuriantly thick washcloth. “You can wash the body, or just the face or hands, the feet,” she explains. “As you’re washing, talk about things. What did these hands do when that person was alive? These feet? And the stories start coming up and laughter and tears.” The washing does not have to be an act of remembrance, but can be about attentiveness and connection: “These are things that can be done when your baby has died. Some ritual, some little ceremony.”

She holds up a wool bundle cinched with pink ribbon: a prototype of a baby carrier she is trying to present to hospitals to help grieving parents connect with their dead babies.

“It’s soft. You can squeeze a bit. When a little baby has died and it’s just in that blanket, it’s so fragile, you don’t want to hug it.”

Cradling the bundle, she continues. “That child can then come home, and the other children can hold it, or the extended family, because everyone is touched by that.”

After the death of Whitlocke’s newborn grandchild, her son found that people simply did not know what to say. The silence exacerbated the grief.

“We’re not told about how to respond to a situation like that,” she explains.

And we don’t necessarily do it any better at the other end of the age spectrum.

Whitlocke cared for an aunty in her 70s. Stage IV pancreatic cancer.

“Mum said, ‘Don’t talk about all your death stuff with Betsy, we don’t want to upset her.’ So I went in and Betsy’s in a lot of pain. I said, ‘How you going?’ and she said, ‘Good, I’m fine.’

“I said, ‘So what do you know about your situation?’ She said, ‘I know that I’m dying.’ I said, ‘Do you want to talk about it?’ And she said, ‘I do want to talk about it but people won’t let me. They keep saying, ‘You’ll get better.’”

Like all socialised silences, the one around death breeds disconnection. But chat with death doulas long enough and dividing lines disappear. So if dying well is just part of living well, then what, really, is our fear of death actually about?

“I asked Betsy, ‘What do you want to tell everyone?’ And she just said, ‘I want everyone to be kind to each other.’ This is one of the things I’ve learnt: When faced with our mortality, the simplest things become the most significant. Kindness. Patience. Gratefulness. And that doozy of all things: forgiveness. I never use the word ‘love’ because there are better words to describe what that person is trying to say.

“Betsy felt as a mother that she was a failure, that in her life she’d been a failure. That she could have done things better. Her children had got together this box of her memorabilia, and I started pulling out things that she totally forgot about: the victories that she’d had in her life that she had totally trivialised, because the negative things were just taking over her attention. Which is quite common, isn’t it?”

Sarah Krasnostein

Sarah Krasnostein is a writer, lecturer and a legal researcher with a doctorate in criminal law. She is the author of The Trauma Cleaner, which won the 2018 Victorian Prize for Literature, the Victorian Premier’s Literary Award for Non-Fiction and the Australian Book Industry Award for Non-Fiction.

@delasarah

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Image from ‘The Harp in the South’

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