One would think that once a person is in hospice care that the conversation would turn to death.
One would think.
Even when the treatments stop, the acknowledgement is given and the care begins, it's a rare bird of a time when Death is invited into the room. Death is always the unwanted visitor, always the unwelcome guest, always the word no one will utter. That old adage about death and taxes is nonsense: there's nothing certain about taxes; plenty of us have hedged on those over the years. Death, however, is going to arrive and most likely without the option of an extension.
Eventually Death will knock at the door and the sooner you set a place for her at the table, the better the banquet will be. I guarantee.
Every other week our hospice team gets together and talks about every single patient we have. Yes, this is an arduous process. The doctor, nurses, social worker and spiritual care person (me!) share their insights on each person so that we get an holistic view of the people we serve. Done well, hospice care can be a truly sublime journey. We open and close the meeting with a blessing, we share stories, we blow off steam, we talk about all the yucky things a body does without flinching. People drawn to hospice care are not, by nature, flinchers. Bodies do a lot of weird and unpleasant things when they are in the process of breaking down and the emotional journey that accompanies that can be intense. Dying is not for the faint of heart.
We laugh a lot in our meetings, too. How can you not? Dying isn't nearly as somber as Hollywood has led us to believe. I laugh a lot with the people I visit. They are, after all, still alive. Death is part of the journey, part of the process, part of the plan. And it can and should be as beautiful as life. Death does not need to be clothed in black or shrouded in mystery or talked about in hushed tones after midnight in a corner of the kitchen. Death is one of life's most profound teachers; macabre is a word I have come to loathe. For some goddamn reason we partner dying with this horrible word; we apologize when we talk about death by saying ..."I don't mean to sound macabre ..."
The only thing horrifying and disturbing about death is that we don't talk about it enough. We don't give it breathing room, and, worst of all, we don't allow space in our lives for true and honest grief.
Someone was sharing an anecdote at our hospice team meeting the other day: "It was a good visit .... we got his pain under control ... we were all there trying to figure things out ... and not talking about death, of course." We all nodded our heads knowingly; a few of us laughed.
Not talking about death, of course.
I know I can't singlehandedly bring the conversation about death into the mainstream, but I'm gonna try like hell while I'm alive. I want my obituary to read: "She loved life; she loved death." I mean you cannot honestly extract the two. I get it, no one wants to leave this place, we don't want to leave the people we love. Even though we bitch and moan and complain and make things harder than they have to be. We can't get it right and we don't understand why nothing ever goes our way. The world is full of sorrow and pain, and yet ... and yet ... no one ever wants to die.
And that's fine, that's OK. I think it speaks to the kernel of optimist in all of us. I think that underneath the layers of contention and strife and angst and disappointment and worry, is a good, good heart in each one of us. A heart that very much loves this life, this world, the people in it. And we don't want that heart to stop beating. Probably because we know next to nothing about what happens after we die. Also because most of us have screwed up so much in this life that we always want a little more time to set things straight. I see it all the time, the shoring up of a life when a person is moving slowly toward the exit.
The thing is that if you begin to co-mingle the two, if your regular everyday thinking allows for the truth that you don't have forever and you might not even have a week, the way you live starts to shift. I absolutely love that about hospice patients, they have no time for nonsense, no time for bullshit, only time for what really matters. Imagine if we all lived that way EVERY SINGLE DAY.
Think about it, talk about it, plan for it. Like anything in life, the more you do it, the easier it gets. "What do you want done with your body after you die?" Ask this over your ham salad sandwich this afternoon. Ask your kids. Kids die! Now more than ever, sadly. Do some research. Every state has different rules and regulations around dying, death, burial and cremation. There's a terrific resource here in Vermont, the Funeral Consumers Alliance. Your state might have something similar.
Not talkin' about death, of course is not a good plan. Not long before my arrival near the Hartford exit on Interstate 91 the other day, a truck lost control in the opposite lane, struck a woman on my side and killed her. Did I imagine it could have been me? You bet. It was a rainy day, the roads were slippery and visibility sucked. We don't leave our homes in the morning planning to die. We don't send our kids off to school expecting that they will die. We apply our very best magical thinking to death: it won't happen to me, not today, anyway.
Guess what? It might.
In one of the most extraordinary books I have ever read about dying and death, Cry, Heart, But Never Break by Danish children’s book author Glenn Ringtved, Death is a character spending a night with several children whose grandmother is in the bedroom upstairs dying. Death has come to teach them that it's OK, that death is something of great beauty and worth: It is the same with life and death… What would life be worth if there were no death? Who would enjoy the sun if it never rained? Who would yearn for the day if there were no night?
Some people say Death’s heart is as dead and black as a piece of coal, but that is not true. Beneath his inky cloak, Death’s heart is as red as the most beautiful sunset and beats with a great love of life.