What We Should Be Talking About at the End of Life
Maybe it’s because there has been more dying than usual swirling around me, the death of friends, the almost-death of someone dear, the slow burn of disease moving people I know closer to death. Whatever the reasons, I’ve been thinking a lot about the kinds of things we’re supposed to talk about when the jig is up and the approximate expiration date is revealed. We’ve all heard the stuff we’re supposed to say: I’m sorry; I forgive you: thank you; I love you.
There’s something about this that really bothers me.
For starters, there is a LOT going on when someone is getting close to their transition time. There is the endless tweaking of meds to try to manage the physical pain. There are the questions about all the post-death stuff: memorial service? Obituary? There’s all the daily stuff: should we force her to eat if she’s not hungry? Should someone be in the room all the time? There’s the disbelief. Always, always, the disbelief.
There’s all the literature that tells us about the conversations we’re supposed to have at end of life. As if, after a life of not being much of a talker, we’re suddenly supposed to jump into the deep stuff.
Of course it’s a lot easier to say things like I’m sorry and I forgive you when we’ve got one foot out the door, but it’s also kind of … crass, kind of hollow, this idea of an eleventh hour communications conversion. Are we really supposed to pivot to being deeply engaging people at the very end of life? I don’t think so. I think we are supposed to attend to those conversations throughout all of life and to wait until we’re almost done is an affront to the person who wanted and needed to hear those words for years, maybe decades, maybe an entire life.
Great, Dad, I’ve known you for 65 years, and now, on your way out the door, you’re going to turn to me and tell me you’re sorry you weren’t around more when I was a kid?
And I’m supposed to accept this pressure cooker apology because you’re about to die?
It feels cowardly. Shallow.
Can we maybe step back from all the end of life platitudes around how spiritually amazing it is? A lot of the time end of life is just end of life. People die; not every death is transcendent. Most deaths are as plain as the person’s life was. A lot of deaths are agonizingly slow and difficult to watch. Like birth, only there’s no cute baby at the end to cuddle. It’s just the end, there’s an empty body there, no longer animated by the spirit of the former inhabitant.
Death is just death. It doesn’t have to be miraculous or revelatory. And it’s definitely not a time to try to accomplish all the things you avoided during your life. It doesn’t need to be tied up with the pretty little gingham ribbon of completion. To die is just to die. It happens over and over and over in the course of a soul’s existence.
The problem is that we don’t talk about death on a regular basis, so often when we do talk about death we get the big stories, the bright moments, the birds at the window and clocks stopping and lights blinking. Those fun stories capture our attention and make us feel less averse to death. But the truth is that the vast majority of deaths are just death: car crash, ski accident, hang glider falling out of the sky, tree limb on the truck, heart attack, and the good, old fashioned slow motion disease displacing health.
I’ve spent enough time sidled up to death now that I feel pretty confident about this: the main thing people fear when they’re dying is that they’ll be forgotten after they’re gone. They imagine life going on without them: weddings, babies, seasons, and they can’t believe they won’t be there. And they’re afraid people will stop talking about them, stop telling stories about them. Most people are afraid that they will be forgotten, that their life was not meaningful enough for them to be remembered.
I’m sorry. I forgive you. Thank you. I love you.
People please. Say these things every day.
At end of life there is only one important thing to say if you’re going to start saying things: your life mattered.
And then spend the time you have left together elaborating.
Tell all the stories.
Tell them the lessons they taught you.
Tell them even if the lesson was learned through pain.
When I was twenty one I spent a lot of time in the hospital. The summer after college graduation. I grabbed that diploma and pretty much went straight to the ER.
This was in the days before the world wide web, before cell phones. When information traveled by landline and word of mouth.
To this day I am amazed by the outpouring of love and care. I couldn’t believe people had heard I had been injured, let alone that they sent me gifts and letters and called me, made visits. I had no idea that I mattered.
And let me tell you, it went a long, long way on my journey back to health. I had no idea that my short life had made any kind of difference. I didn’t think it did, and I was wrong.
Knowing that you matter, that you have mattered, is everything in life.
There is absolutely nothing wrong with spending a person’s end of life in quiet togetherness. It does not have to be a time of great revelation. If you had a quiet relationship all along, to become something different when life is closing down seems absurd. You may not have ever been the kind of people who make declarations. But chances are good you taught each other things along the way. Share those stories. Pretend you’re sitting around a nice campfire. Play the remember that time? game and give the person dying the best gift of all: the assurance that their life mattered and they won’t be forgotten.
xo, take good care, m.