Inspiring hope at the end of life
Author, oncology nurse and founder of nonprofit organisation, the Callanish Society, Janie Brown has started a new global conversation about living, healing, death and dying with her book Radical Acts of Love
Shona had said to me on the phone, “Please knock some sense into my husband’s head, Jim thinks he’s getting out on the golf course again but he’s far too sick now for golf. We have a lot to sort out but he won’t talk.” Jim had been living with Stage IV lung cancer for eight months and the chemotherapy had stopped working.
Shona asked me if I could come for a visit to help the two of them talk about dying. She wanted to know his wishes. Did he want to die at home or in a hospice? Would he write an advance directive (a living will) so she’d know what medical decisions to make on his behalf? Did he want to be cremated or buried? Who would write the eulogy for his funeral?
And most of all, she wanted to share her sorrow and say goodbye. But Jim didn’t want to talk about any of it. I have met many bereaved people, like Shona, who weren’t able to have those conversations with loved ones.
Their grief is suffused with regret, and even bitterness, sometimes for the rest of their lives.
There are thousands of grieving families who this past year have been unable to say goodbye to loved ones because of Covid restrictions. Goodbye should not have to be a hurried farewell over the phone or an ipad, but a series of moments and conversations through which the ending slowly unfolds and a gentle, mournful acceptance can settle in.
To prevent hurt and regret in grief, we need to develop the courage to face our fears of death and learn to talk about it.
Jim was propped up in bed with several pillows when I entered their small bedroom. It’s always an honour to meet with people in their homes, in their intimate spaces, but it can feel intimidating too when you know a person doesn’t really want to see you.
I noticed his pale blue nails and how his chest moved with effort for every breath. He shook my hand with a stronger grip than I was expecting. Shona slid her agenda into the conversation. “Jim, I want us to talk to Janie about what’s going to happen when you get sicker.”
"What about it?” he asked, his protective armour moving into place.
“Are you going to want to be at the hospice, or stay here?” she asked.
“Get Janie some tea, darling. She doesn’t want to hear you being so negative.”
Like many people do, Jim had put the brakes on any talk of dying. This could be a sign that Jim was in denial but he started speaking as soon as
Shona slipped into the kitchen. “She thinks I don’t understand how sick I am, but I do. Gets her all upset, and then I can’t hold it together either. it’s best not to talk about it.”
“It might help her if you could talk about it,” I said, gingerly.
He replied: “I don’t know what to say.”
I took the opportunity while I could to encourage Jim to open up. “It’ll be hard on her when you’re gone, no question,” I said. “But you can’t protect her from her sadness, and she’s probably stronger than you think.”
Protecting the people we love from pain is an instinct but it doesn’t serve us very well at the end of life. The dying person might try to keep upbeat and hopeful, or not communicate much at all, but both ways will ultimately lead to feelings of loneliness and separation.
When those we love are dying, it is unbearably sad but we often feel too vulnerable to cry, or we worry that our sorrow will be a burden. We hold back.
Jim didn‘t talk with Shona about his dying that day of my visit, nor any of the days before he died, a few weeks later in their local hospital.
Shona was angry afterwards, that he hadn’t been braver, or prepared, and that she had lost the potential for a verbal goodbye.
In my book, Radical Acts of Love: Twenty Conversations to Inspire Hope at the End of Life, I have distilled 30 years of working as a cancer nurse and counsellor into 20 stories, including the one about Shona and Jim. Each story in the book offers a unique perspective on how to leave this world, while taking care of the hearts of the people we love, into their futures, and what happens when we don’t.
I wish my book had been available sooner to the person who wrote to me today, who gave me permission to quote her, anonymously: "I am 60 pages in and I have been crying for at least 40 of those…i wish I had read Radical Acts of Love a year and a half ago. I wish someone like you had been there for my family. For my mother. I think we would all be hurting less, finding it easier to love, if only we hadn't been afraid of death. If only we had talked about it, even a little."
Many of the stories in the book describe how people did learn to talk about death and navigate the rollercoaster of emotions. When I met Ronald and Marco, they were fighting hard to believe that the chemotherapy regimen would put Ronald into another remission from his progressing colon cancer.
The thought of Ronald dying was intolerable after all they had been through. After meeting in their early twenties, and being shunned by both families for being gay, they moved across the country, got married, chose a shared surname, and bought their first home. When we met they had been married for 38 years.
In counselling, Ronald realised that it was his fear of dying and leaving Marco alone that was the driving force behind his decision to keep taking chemotherapy. “I know that when I stop treatment I’ll need to face my death head-on,” he told me. “And so will Marco.”
They knew it wouldn’t be easy but they wanted to try and be open
The honesty between these two men and the willingness to express their feelings openly brought tears to my eyes too
in their conversations and in their feelings. They didn’t want to drift apart when they needed each other most.
I feel blessed to have accompanied these two men as they found the courage to stop treatment and come to terms with Ronald’s imminent departure. On one visit to their home, after sharing a delicious lunch, Ronald said he needed to rest. A double bed had been set up in the den downstairs, as Ronald could no longer climb the stairs.
He gestured for me to sit on the bed beside him. Marco climbed in behind Ronald and pulled the white duvet over his thin bony frame. “I’ll be so lonely when he’s gone,” Marco said to me, with an openness that startled me.
The loneliness itself seemed to enter the room then, vast and inescapable, an unwelcome companion for the rest of Marco’s life. Not everyone is able to bring the future into the present, acknowledging the enormous loss that is to come. The honesty between these two men and the willingness to express their feelings openly brought tears to my eyes too.
My hope is that the stories in Radical Acts of Love will be a balm for the sadness and fear of losing someone you love, and will provide a roadmap of courage to start the hard conversations that none of us will ever regret having.