by Carolyn Steele
The previous episode was a bit of a list, a romp through options for action and suspense. This one is more of a story, which seems apposite. Heeding the body’s call to wind down, make meaning and finish is, when observed minutely, a relatively lyrical testament to what it means to be human.
I’ll begin with an explanation. I’d hate you to think, despite an apparently obsession with death, that I am a miserable person who gatecrashes funerals for the opportunity to wear black and be solemn. I’m actually quite happy, when not trying to produce 750 – 1000 words on something that makes you sound really weird.
As paramedics, my colleagues and I frequently fumed at the ‘don’t ask don’t tell’ approach to death. I came to think that it must be a lonely way to go, hiding your feelings from the people you love.
Eventually, I moved on to hospice work. This is how I learned to love the dying, for their generous spirits, their rapidly acquired wisdom and their subtle, sardonic senses of humour. It is also how I learned to ‘read’ a family meltdown. Characters regress, secrets emerge, rifts appear and people change. Great stuff for developing a family saga. And most of the things you may think of as myths are actually quite true.
There are two aspects to the palliative bedside. The patient’s progress towards death, as their body shuts down system by system, and the drama unfolding around them as the not-dying characters each act out their own personal crisis.
Palliative care gets a bad rap. Patients are either being left to starve or dehydrate to death, or given ‘overdoses’ of morphine-related drugs. Irate family members are horrified and call the media, but palliation is about symptom relief, not timing. And the irateness is about internal conflict, not treatment. The medical task is to make the person who is choosing how, when and with whom to die, as discomfort-free as possible.
The person doing the dying has a slightly easier job coming to terms with what is happening than their loved ones. Their body is changing, forcing them to contemplate what’s coming next. They will go through the classical ‘loss’ emotions, but acceptance comes as physiology progresses. One of the most hurtful things for a family is the moment when Dad ‘turns to the wall’ and loses interest in the living. It’s not a lack of love, it’s a natural letting go.
The next insult, his digestive system begins to shut down. He has no need of nourishment, regardless of how much care has been lavished on a once-favourite dish. In a society which equates the provision of food with love and nurturing, this can be devastating. But to force down Mum’s meatloaf, to make Mum happy, is to risk choking. Which is a much less comfortable death.
Not drinking comes next. A drip may help for a while, but it will be taken away once rehydration is unnecessary and dangerous. This isn’t hastening the end, it’s reading the body’s dwindling needs. Drowning in fluid that kidneys can no longer process is a horrible way to die.
On the way to unconsciousness it’s common to pass through a dreamlike stage, where language becomes metaphorical and the room fills with invisible people. It depends a little on your religious viewpoint how you interpret these visions (and I am absolutely not going there) but it happens regardless of the beliefs of the individual. Dismissing Dad’s words as ‘confused’ is not helpful. He is still telling you something if only you’d listen. Consider, “the train’s about to leave and I can’t find my ticket.”
Moving on down the consciousness levels towards death, it’s not a myth that hearing remains to the end. Palliative staff will continue to encourage story-telling, reminiscing and playing favourite music at the bedside, They will also try to remove family arguments from the room. Arguments? Why?
Everyone is angry. Anger is just one of those loss phases. It happens when we are powerless and most of us regress to our habitual method of handling existential fury. The pattern goes…everyone inhabit the worst expression of your childhood personality, right now!
The controller tries to take control, haranguing medical staff over drips and meds. The sulker makes it everyone else’s fault, they’re all killing Dad with their terrible attitudes. The family scapegoat disappears, ‘too busy to visit’, and the passive-aggressive makes more and more lovely food and gets increasingly offended as it’s left uneaten. This one actually ends up blaming the patient; leaving my meatloaf means you don’t want to live.
In the midst of this, the actual needs of the person doing the dying can be forgotten. They may make some hurtful choices; opening up to a stranger, or dying alone, when the bedside vigil keeper has nipped to the loo. This trick may also be an act of kindness but either way it can set up lifelong guilt and blame.
Someone who just can’t die, lingering long after the body should have let them go, really is probably waiting for something; this is another not-myth. What about that train ticket? It might be an event, anniversary or a visit. Perhaps a rift healed, a truth acknowledged, or permission to die. Parents need to know their kids will be ok, spouses may want to hear ‘it’s all right, I’ll miss you but I’ll manage’. Difficult words may need to be said to allow a peaceful exit. And those scenes can be beautiful if you’re writing that sort of book.
However, neither is it a myth that people can wake up briefly for a chat in the final hours before death…often for a visit from the family scapegoat. The dying aren’t silly, they know who is avoiding what. This can make fodder for years of pain, guilt and recrimination if your story wants to go that way. Ultimately, we may die alone and misunderstood but we still die in charge.
Carolyn has been a paramedic, first aid trainer and palliative care worker. She has watched countless people die, although to be fair, mostly the ones she wasn’t tasked with saving at the time. One day there will be a book about death, people don’t talk about it enough, but currently her narrative non-fiction is more about life…and some odd ways to make a living. Her first book, A Year On Planet Alzheimer, is available at Amazon in both print and Kindle format. Her forthcoming book Trucking in English is currently being podcast, in 10 minute espisodes, on her blog and on iTunes.