by Tanja Rohn-MacKenzie
I’ve paused what I’m watching to sort my burgeoning thoughts out on paper. I’m hardly ever 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 can capture 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 right now as I’m effectively waiting for my grandma to degrade in her clinical condition and die. Don’t be shocked. She’s waiting too.
She doesn’t feel she is a contribution. She is no longer “competent” to make any decisions. I’m the one choosing the Easter candy for the great-grandchildren and letting the nursing staff know her sock-wearing preferences. I’m the one communicating my grandmother’s needs for an actual hair style. No one else is noting her need for an afternoon nap in a real bed. Instead, she is left in the hallway in a wheelchair to pass out, quietly greeting the other family members getting off the elevator.
Let’s question a very basic assumption that our culture has: the idea that we need to keep being a contribution, a productive member, or someone who’s DOING things for ourselves 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 openly encouraged. And it’s rarely spoken of, because it’s scary as hell.
Part poet, part activist, part a lot-of-things, Stephen Jenkinson asks, “What is this addiction to competence?” Why are we measuring and still aiming for competence in our 90-year-olds? Why do we need them to do thrice-weekly physio and then group “exercise” on the other days? Why are we prolonging death so vigorously? Very simply, our 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 sometime 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 cannot, 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 cannot 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 people here. 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?
A reason we don’t honor the old folks is because our culture honors competence. And they are not that. Age diminishes competence. When can we honor 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?
We 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.
As someone who has always been interested in medicine, I’m deeply moved by Jenkinson’s message. Medicine is much more than preparations. It’s also how we exist as 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 of administration, but after four months in the hospital, a three-hour drive for me, I secured a nursing-home spot for my grandmother only five minutes from my house. Even after they said, “We don’t place people directly from the hospital,” and “The waiting list is two years long.”
Meanwhile, she is here in a place she hates. She called it a shithole.
And I get it. It’s the exact opposite of where I’d want to spend my last days. I got a letter today accepting my grandmother into my first choice, a beautiful, new, carpeted facility that is completely different from the repurposed hospital setting in which she is now staying. They have a 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? Even if it’s more comfortable? Comfortable for me? Notice I haven’t suggested she come to live with me. However that might play out, after listening to Stephen Jenkinson, I know 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 Latin-derived term “palliative” 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 compares to the city’s sewer system. It’s our entire culture around dying that she cannot easily escape.
I might as well bring her a six pack.
Tanja Rohn-MacKenzie practices urban agriculture and photography in the Finger Lakes region. Her interest in death and dying has led her to learn how to host home funerals and “harvest” backyard poultry with love. This piece is adapted from her blog, mummybites.wordpress.com, where she explores being a step-mom and feeding her lover’s spawn one mouthful at a time.
Her photography can be seen at tanjerinestudios.ca.
Tanja Rohn-MacKenzie is an urban farmer for some of the year and assistant to the publisher of The Brick throughout the year. Consciously navigating the parenting of two teen girls with her partner, she also quietly advocates for a reimagined perspective on death and dying in our society. Currently, the two are not related. Her portrait photography work lives at tanjerinestudios.ca.