I was thrilled to meet Kathryn Mannix in Glasgow at Aye Write book festival where she was talking in her gentle, wise voice about living with the end in mind.
The audience hung on her every word as she shared the years of knowledge and experience she has built up as a palliative care specialist, getting to grips with that thing that confounds, scares and entrances many of us… death.
Actually, I think it’s less death itself that’s the issue. It’s dying that scares the bejesus out of us probably. It’s the uncertainty, the unknown, the fear of pain, the loss of control, the anticipation of all manner of horrors that’s the fear. Death itself is just so resolving I think.
With the end in mind
Kathryn was introducing her book With the End in Mind: Dying, Death and Wisdom in an Age of Denial. In it, she shares 30 stories of death and dying. Some of composite characters she has known in her life as a professional care-giver or deathwife, as she calls her midwife-for-death role.
As I’ve said before in this blog, birth and death are so similar in their breathtaking, life-changing, nature. There’s a labour to go through to get there. Every birth and every death have their own signature though there are common patterns, flags and triggers. And that’s where Kathryn’s book is worth its weight in gold. For many people who are living with the end in mind and for people who might be supporting them through their dying stages, the detail of dying and the signals and clues are critical.
So she helpfully shares detail about breathing patterns, sounds, behaviours – the signals that the end may be near. “Nana’s breathing is soft now, panting and shallow. How many times have I described periodic breathing to families, to medical students, to patients themselves… this sounds like someone who has run a long way, who is breathless, who is anxious. But her face is serene… and her pulse is regular… her nose, her hand is cold… The shallow breathing pauses. I hold my own breath – Oh no, please don’t die when they’ve gone for a tea break… Slowly, as I know it will, this automatic breathing gets faster and shallower, and then so shallow that I can’t hear it…”
This is typical of the clear, relatable language of this medical expert. The storytelling readable. The stories warm and real. The information shared so helpful. She explains ‘chain stokes respiration’, the switching between modes of breathing. She explains how hearing is the longest last sense – a reminder that even when someone can’t communicate, they can be connected. She talks about the death rattle… when a dying person is unconscious and can’t swallow their saliva… it pools in the back of the throat and air has to go through it. It’s not painful. (That’s the bit we mostly want to hear.) And once we know to expect that, it’s not scary.
Kathryn also shared generously her experience of how people die and how others can help support and meet their needs. For some, they want the chance to express gratitude for the life they’ve had or the help they’ve had. Others want to express regret. Some may seek forgiveness. Others want the chance to say a last “I love you”. Some want quality rather than quantity of life. For others it’s just the opposite. And of course timing is critical. She knows there’s a truth that some will wait for family to be out of the room to die and others will hang on and wait for family to get there. So there’s little point in feeling guilty – because the dying person may have been exercising their last wish.
If you have thoughts and wishes, make sure you record and share them. You can post thoughts and wishes on Final Fling and share with your Keyholders privately. It’s free and easy to do.
With the End in Mind, is a must for anyone who is ever likely to encounter a death (yes, you!). There was a time when there would have been an aunty, a neighbour, a friend who would have the wisdom and be able to support you when your time came to step up and sit with some one through their dying time, but modern life isn’t like that. In the absence of that community deathwife, I’d recommend Kathryn’s book as your bedside companion to help.
Watch a bit of Kathryn, wisely advising that Dying is not as bad as you think on BBC Ideas to get a sense of the comfort she might offer you or someone you know.
On a final, personal note. I was thrilled and humbled when she dedicated her book to me “in admiration.” I’m uploading these two photos to my Final Fling Memory Box to share with my kids as one of my proud moments in life.
Read other blogs about living well, dying well and caring for someone who’s dying.
Towards the end of her talk, Kathryn shared these words of wisdom that could be the motto for Final Fling, as we encourage people to plan. “The best time to plant a tree is 40 years ago. The second best time is today.” Apply that logic to planning for the end. You might not have started yet, but there’s better time than today to think about it. See here what simple steps you can take to live with the end in mind and plan for death.
2 thoughts on “Living with the end in mind”
Good morning from Johannesburg.
I’m a volunteer at HospiceWits here in JHB. Enjoyed reading your posts.
Kind and warm regards.
Thanks Jolyon – always nice to get feedback. Bx