Before Forever After by Helena Dolny
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In her book Before Forever After, Helena Dolny imagines a world where people talk about death as part of their daily lives. Dolny interviewed people from all walks of life and gathered 57 stories in nine themes to challenge readers about how they choose to live, and how they would prefer to die. Below is one such story about Dolny’s mother.
My mother’s affirmation “Well, at least I’ve got all my marbles” rang increasingly less true.
“Is my mother still alive?” she asked me. I gently took her back in time 30 years to the year her mother died. When lucidity returned, she was both scared of her mental failing and ashamed: “Don’t tell anyone that I asked you this.”
Dr Martin Connell, mum’s doctor, came to do her living will. I wanted her wishes on record as a support to me when I might have to act on her behalf.
“Gina, I’ve come to talk to you about your health,” Dr Connell said as he took her blood pressure. “You’re getting weaker. I’m wondering how to manage your care.”
He settled back with a sheet of paper with eight questions. People sometimes change their minds, but we would know what she thought now while she still had clarity of mind.
“I want to know how much medical intervention you want. I want us to think about your care here at home. I understand you don’t want us to put you in a hospital.”
“I’d consider hospital if there was a chance of a good outcome. Hospitals are for sick people who have a chance of getting well again. I’d rather die at home.”
“What about CPR, resuscitation?”
My mother answered with her nurse’s hat on. “You can try, but don’t overdo it. If there’s a little chance, try. Because I do like life.”
And intravenous feeding?
“If it’s feasible that there’ll be a good outcome. But if I am ill and showing no improvement, I am to be let go. It’s no use hanging on to life.”
“Who should make decisions if you’re no longer capable?”
Dr Connell said he’d like to involve hospice as a support. Mum’s nursing experience included end of life care; she said she’d welcome hospice.
They continued talking.
Mum said, “I still want to go to Adolf and Erwin’s weddings,” referring to her brothers.
We looked at mum, astonished. She also realised her mistake. Her brothers married long ago.
Dr Connell gently asked: “Are you aware your memory is becoming unreliable?”
Mum replied: “I’m having very funny sensations. I’d like to have more control of this dipping in and out.”
Eventually, the caring Dr Connell took his leave.
Mum and I sat companionably. She was glad her wishes were known. I had another question. Was she looking forward to meeting her beloved husband, my dad Toni, in heaven?
She surprised me by saying she didn’t think of heaven as a place with people. “It’s less about a place and more about a state of feeling.”
“What does it feel like?”
“Peace. Tranquillity. It’s a place where you feel peace – you become part of it.”
I asked what she wanted engraved on the tombstone that she would share with my father. She surprised me again.
“Shalom,” she answered – the Hebrew word for peace.
Five months later my mum took her last breath. She died just a few days earlier than I’d anticipated. I thought she’d hang in until December 13, when her granddaughter Kyla would arrive from New York with newborn Livia. Mum had been “battling on” for this, as she put it.
On Friday December 2, returning from a work trip, I went upstairs to her flat – we live in the same building. I greeted caregivers Alice and Ivy. It was handover time between them. Mum, hearing my voice, half-opened one eye. Ivy commented: “Your mum knows you’re back. She hasn’t opened her eyes all week.”
I checked the two diaries, one a food diary, the other about mum’s “state of being”. I read she’d eaten and drunk very little. Her diaper was mostly dry – her kidneys surely must be struggling.
The next evening Alice and I chatted as we washed and creamed - mum’s skin was dry like parchment. Alice hoped mum would see Christmas. I thought differently. Mum was having such a hard time.
I said: “Mum, can you hear us talking about you? If you can then please know you don’t have to stay here longer for anyone. You don’t need to wait for Kyla, for Livia. They will understand. If you’re ready to go, please go. It’s okay for you to go.” I laughed a little – it’s strange to have one-way conversations.
As we rearranged the pillows, mum began to vomit, brown gluey-gooey liquid, spilling out of her mouth. An hour later, we had changed pillows, bed sheets and mum’s nightdress. I smoothed verbena-infused grapeseed oil into her face, hands, arms and chest. She smelt lovely. She now looked settled and peaceful, as though she could wait for Livia after all. I kissed her good night.
Alice woke and heard my mother’s breathing next door. When she returned from the bathroom there was silence. She called me.
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My mum’s face was calm and her hands relaxed. I felt gratitude. Should I have stayed the night? But that may have held her back.
I put on a Bach mass to keep me company as I washed her. I wanted her to have day clothes, not to go to the mortuary in her nightdress. I trimmed her hair one last time.
She hadn’t had last rites. The verbena grapeseed oil was the closest she got to the sacrament of Extreme Unction, the anointing of oil – Catholics’ readiness for dying. I phoned the priest for comfort. I found prayers for the dead on my iPad - a soothing voice-over.
Later, after many flower deliveries and visits, after setting up a memory table, I thought about mum’s dying. What would I do differently if I could rewind the tape?
I was so preoccupied with the physicality of dying that I neglected the spiritual. I reread the two diaries. Ivy had written that mum had asked: “When is the Catholic priest coming?”
Mum had called out names which I knew sometimes happens preceding death. I had not read the signals of how close mum was to dying because I was so convinced that my mum was waiting for her granddaughter. Perhaps she would have battled on for nine more days if I had not told her it was okay to go.
I told Dr Connell of my missing a beat on getting a priest to come. He provided comfort by introducing me to Luther’s concept of the “royal priesthood”: “The basic message is that we are all members of the royal priesthood and therefore can act as spiritual persons and agents of God, which I think you consistently did. You could not know the time she would die. You companioned her through her journey to death. You asserted her essential dignity. I think you did great.”
More and more people die in hospital: our challenge is how to provide an enabling spiritual ambience and not lose out to the medicalisation of dying.
The physicality of dying can be so consuming: preventing bedsores, creaming skin, inserting suppositories, changing diapers. Amid all of this, the spiritual ambience is important: loving words, the murmur of prayers, poems, low lighting, soft singing, gentle music.
- For more about Before Forever After visit helenadoiny.com