Comfort in the dark
Author and former palliative care nurse Janet Whiteside reveals
the lessons she’s learned from a lifetime of dealing with death.
WORDS Hayley Barnett | PHOTOS Katie Cox
At 83, Janet Whiteside has experienced far more than her fair share of tragedy and heartbreak – mostly by choice.
The palliative care nurse worked in numerous hospices around New Zealand and Australia for 27 years, supporting and caring for those suffering from terminal illnesses at the end of their lives. In her last few years in the job, Janet worked at Tauranga’s Waipuna Hospice. Having retired full of stories and wisdom and at a loss as to what to do with her spare time, she took her husband’s advice and decided to write a book. Released late last year, she named it Deeper Engagement:
A Conversation Worth Dying For. It includes the stories of her most memorable patients and the lessons she learned from caring for them.
“I felt I needed to do something,” says Janet of her book. “There seems to be increasing fear and uncertainty about getting ill with the possibility of not recovering. People have the feeling that death has to be so difficult and so painful, but although it is difficult, I believe sharing the experience makes it that much easier.”
Janet has fought her own battles with cancer – twice, in fact. In 2003, she was diagnosed with breast cancer and underwent radiation therapy to treat it. The cancer returned in 2008, at which time she had a bilateral mastectomy. Since then, she’s been cancer free.
“Writing the book was actually very cathartic,” she says. “I have to be grateful for what I’ve learned over the years. People would ask me whether being a hospice nurse made my cancer diagnosis any easier to accept. It didn’t, but was it easier to recover from because of my experience with other people? Yes, it was.”
It was from her own learning that she realised knowledge really is power, and other people’s experiences can have a lot to offer those who are facing and fearing the unknown.
“Being in the presence of someone who’s at the end of their life is a gift,” says Janet. “If you can learn to stay rather than run from it, to not be afraid of it, then you have some power there. Supportive care is about putting that cloak around you, and for the people suffering from an illness, it’s so important to let people in and just be open. Over the years, what I gave of myself was rewarded tenfold by the trust instilled in me by those whose lives I had the privilege of entering.”
Janet’s husband passed away four years ago, leaving behind herself and her two sons and their families. “We’re all very open with one another,” she says of her close-knit family. “We can talk about anything and everything, and that helps a lot. The ability to converse with people is so important, and to just shut up and listen at times when they need you”.
Janet’s a firm believer in palliative care both during and beyond the life of the patient. She says death can affect the people around a patient more than the patient themselves, and it’s important for everyone to remember that.
“When someone gets sick, it isn’t just about them, it’s about the whole family unit. That’s the real beauty of palliative care – that it embraces that. Illness and death is ongoing for the family, so palliative care and support isn’t just for the person who’s received the diagnosis, but also for those families, to help them stay connected, because they need each other.”
Even at 83, Janet isn’t afraid of adventure. Right now, she’s in the process of selling her beautiful, big house by the sea so she can move from the Bay of Plenty to the Blue Mountains near Sydney to be closer to her sons and grandchildren. When I mention it’s quite a big change to make late in life, she nods. “It is, but I’ve always said I’m most comfortable on the back of a Harley-Davidson than anywhere else! My sense of adventure hasn’t changed with age.”
I ask if her work has encouraged her zest for life;if being around death makes her that much more aware of her own mortality.
“I’m not counting on living long,” she says with a smile. “I think considering my experiences, I’ve done very well to get this far. But a lot of time for people there is the fear, not so much of dying, but about how they’ll die and how much they’ll suffer. The word ‘suffering’ is so misunderstood, because you can suffer for a lot of different reasons – mentally and emotionally too. Finding a way around that and living life right to the end is so important.”
Six lessons I learned as a palliative care nurse
Things are not always how we wish them to be. The only certainty we have is in this very moment; meaning comes from everyday life and isn’t something we seek at the end of it.
Communication is at the heart of everything. Our voice can be lost when receiving devastating news, but never doubt your inner strength, for within lies the real you.
We worry about time, but it’s what we do with it that matters.
Forget the ‘bucket list’ – be spontaneous.
The only death in life is death itself. It’s the living that counts.
Cancer can destroy your life, but it can’t destroy the uniqueness of you.