I’ve paused what I’m watching to scratch this out. I’m rarely blown away by things I watch or read. Today is one of those rare days.
I’m watching a talk by Stephen Jenkinson, a Canadian man with something big to say about death and dying in our culture. I hope I’ve captured here some of what he has to say. My thoughts are now completely intertwined with his. I am grateful for this new awareness.
‘Advanced directives’ is a term that describes the preparation that goes into an expected death in our society. What’s the plan? Resuscitation? Cremation? This applies to my life as I’m effectively waiting for my gramma to degrade in her clinical condition and die. Don’t be shocked. So is she.
She doesn’t feel she is a contribution. She is no longer ‘competent’ to make any decisions. I’m choosing the Easter candy for the great grandchildren and letting the nursing staff know her sock wearing preferences. I’m communicating my grandmothers needs for an actual hair style and asking that they set her up for naps in the afternoons.
Let’s question a very basic assumption that our culture has: the idea that we need to keep being a contribution, productive, or DOING things for our selves as the measure of ‘living’. Why can’t we just be ‘dying’. What does that look like? Well, no one really knows what dying well looks like because it’s not encouraged. And it’s not spoken of because it’s scary as hell.
Stephen Jenkinson is asking, what is this addiction to competence? Why are we measuring and still aiming for competence in our 90 year olds? Thrice weekly physio then group ‘exercise’ on the other days? Why are we prolonging death so vigourously? Very simply, this culture lives in constant fear of death.
Left to her own devices I think my grandmother would choose to be home alone and simply stop eating. She would lay in bed, eventually turn off CNN and some time later be too weak to reach her glass of water. If she were alone. But she is not. She is surrounded by a culture that refuses to let her die. The fear of death is so pervasive we are absolutely blind to how systemic death phobia really is. Her small family group has almost no choice but to follow the prescribed and dusty, pot-holed routes set before us. I feel hamstrung by a typical nursing home situation in which she does not live, but merely survives. It’s the next expected step once you can not, to use the lingo, ‘toilet’ yourself.
Many everyday things, the routines prolonging her life, really bug me. The food she is offered but does not eat, the nursing staff that changes daily adding to her confusion, and the cheap, aged bedding tucked under the rails of her hospital issue mattress. I feel guilty that I can not give her what I can reasonably guess she REALLY wants. Gravy and mashed potatoes. Great hair. At the top of her list I think, is an easy death in her sleep.
You think you’re going to eat whatever you want when you’re old. You think you’ll be able to nap when you’re tired. Or sleep past breakfast. You’ve earned that, no? Not here people. So I feel scared. I feel that nothing will change by the time it’s my turn to succumb to this earthly body. Because if I had my way I’d simply lay down in a field knowing it was my time. Wouldn’t you?
Quality of life. Jenkinson remarks that in our society the measure of one’s quality of life holds a happy standard that measures a dying person against their 14 year old self. Eating well, sleeping well, getting dressed and going out into the world. Are these the daily living tasks we should hold a dying person to? The reason we don’t honour the old folks is because our culture honours competence. And they are not that. Age diminishes competence. When can we honour the dying of competency with the physical death? By ‘getting them up and dressed’ in the nursing home we are continuing a routine of youth. It does not support a winding down. We do this in our death phobic culture because we can now easily prolong and stave off, death. What would it take to reimagine what dying looks like? What grief is?
Jenkinson hails one of my favourites, Leonard Cohen:
I’m tired of choosing desire
I’ve been saved by a blessed fatigue
The gates of commitment unwired
And no one trying to leave
We, minus Leonard Cohen of course, have what Jenkinson calls, competence addiction. What is the competence that a dying person is assumed to have? How does competence addiction manifest itself? It looks like the person isn’t actually dying.
So what does real, honest dying look like?
What might help in aging look like?
It could support people in their incompetence.
We could help people to be incompetent.
Practically speaking please don’t ask me anything else. We’re daydreaming here.
The feeling is one of acceptance though. This is where you are. This is where we are together.
He asks us to consider this: Imagine that the end of life is not the end of health. Imagine that you can be a healthy person dying. This would mean that what is at the centre of end of life is death. In his words, consider something beyond the continuous handing off of who is driving the bus.
As someone who has always been interested in medicine I’m deeply moved by Jenkinson’s message. Medicine is much more than preparations. It is ALSO in how we BE in ourselves and with others in our bodies and spirit. Our energies and interactions can be used to live fully in each moment, as an example and as a truth. What I see in our near future is a new honesty about what that means in terms dying in this culture.
And now a monkey wrench. It took three weeks but after four months in hospital, 3 hours drive from me, I secured her a nursing home spot for my grandmother only 5 minutes from my house.
Even after “We don’t place people directly from hospital”.
Even after “The waiting list is 2 years long”.
And she is here in a place she hates. She called it a Shit Hole.
I get it. It is the exact opposite of where I’d want to spend my last days. I got a letter today, accepting Oma into into the beautiful, new, carpeted facility that is the opposite of the repurposed hospital setting in which she is now sitting. They have Swiss Chalet day. It includes your choice of beer.
Do I move her, jarring her yet again to another place she really doesn’t want to be? So that it’s more comfortable? Comfortable for me? Notice I haven’t suggested she come to live with me. However THAT played out, after listening to Stephen Jenkinson, it would likely not be the cherry ice-cream on Mondays at Bingo, sterilized, drawn out death waltz we accept in our society as a passable death. If she came to live with me she might choose (wait, is she competent to choose?) her journey Out to be short. So short I’d be investigated for neglect or some such thing.
The term ‘palliative’ in it’s latin roots means to cloak or conceal. Palliative care then is merely a window dressing on what we find ugly. It’s not just the run down hospital that she thinks is the Shit Hole. It’s our entire culture around dying that she can not easily escape. Competence.
I might as well bring her a six pack.