We want to share an inspiring story by an author who wrote a book after her father passed away that changed her view of hospice care.
Before writing the book, Rachel Joyce had little experience with hospice. “When my father died of cancer nine years ago, he was at home, but as a child, I visited my dying grandmother in a nursing home and my only memory is of the color yellow. The wallpaper, the blankets, the shrunken face of my grandmother, her stick-like fingers; all of them pale yellow. Even the smell was yellow.”
When Joyce began work on a new book that was told from the perspective of a woman who was dying in hospice, she knew “when it came to research, reading about hospices wouldn’t be enough. I was going to have to visit.”
She first visited the hospice down the road from where she lived. “’How do you feel?’ asked the man appointed to show me round. ‘I feel nervous,’ I confessed. ‘Everyone feels nervous,’ he said.
“I felt nervous because I was afraid of coming too close to the dying. I was afraid of what I might see and that I wouldn’t be up to it… I braced myself for yellow,” writes Joyce.
But instead Joyce saw light – “it poured into the atrium, shafts of pure, bright, happy, life-affirming daylight. ‘Hello there,’ greeted a round-faced lady behind the desk. She was howling with laughter. What was funny? I haven’t a clue. But walking into that space was like being given a hug when you expect a slap,” Joyce writes.
“Everywhere the healing scent of lavender oil, because many patients have memories, not always easy, attached to the smell of chemicals. We ended up in the kitchen, where I was given hot tea and a slice of homemade cake.”
Joyce asked one of the nurses “‘if a dying patient asked for one last thing would the nurses do that for them? ‘Without question,’ the nurse replied.”
The nurses relayed stories of how they had cooked a festive dinner in May for a man who wanted to see one more Christmas. Or the time they performed a sing-along to The Wizard Of Oz, which was a dying woman’s favorite film. Or the many times they helped patients make cards and write messages for their loved ones. “These may seem like small things, even needless, but they are not,” writes Joyce.
Joyce visited several more hospices where she interviewed more healthcare professionals and volunteers for her book. “Each time, my experience was the same. I came away feeling humbled and profoundly relieved,” she writes.
“I thought of my dad, hiding his face behind his hands so that no one would see the tumor. I had seen his decline and it was awful to witness. He was reluctant to talk about dying. The idea of hospice appalled him,” writes Joyce. “I think a part of him believed one should do it quietly in a corner, where no one could see, as if to die was a failure. Not wishing to upset my dad, I, too, avoided the subject.”
Joyce believes as a society we need to change the way we think about death. “We need to accept death as a natural part of living, because if we turn our eyes from death, we also turn our eyes from the joy of life.”
After visiting a series of hospices and writing her book, she reflected, “You don’t have to be alone when you are dying. A hospice is not a place where one slopes off to die. It is somewhere you go to live until you die. I wish my father had known these things. I wish someone had shown me how to talk to him about dying.”
“’I believe you need to write this book,’” said Joyce’s guide as they shook hands at the end of her first visit. “Did he mean I needed to write it for myself, or other people, or my father? I have no idea. But I sat down over the following year and I wrote about a hospice that was full of life. A celebration.”
Read the story here.