Most of us have spent some time thinking about our own deaths. We do it with a sense of dreadful curiosity, but then we push it aside with “well, we’ve all got to go sometime.”
Unlike most people, I probably know the how, the why, and maybe even the when of that event. It is profound information that turns the world upside down for us, our families, friends and caregivers.
I have cancer that is incurable, aggressive, and has negligiblesurvival odds. My chemotherapy is a long shot. I will leave a spouse, children, siblings and a life that I love and cherish. I cannot imagine existence without them.
I have read the books about stages of grief and end of life. But when all is said and done, truth is the great measure. The truth between doctor and patient when there is nothing else to be done. The truth between patient and family who want desperately to have a few more months or days and cannot. The truth between patient and friends who must accept and move on without bitterness. The truth between patient and spouse, partner, or caregiver who have waited for that moment and are helpless to change it.
Of all things, the simple act of truth has become most important to my husband and me. We talk about my dying. It is a poignant, painful and sometimes funny honesty. We have done it after solemn consults with physicians, during long hospital stays, through gut-wrenching disappointments, and sometimes over toast and coffee on Sunday mornings.
We have learned to be forthright and unafraid of saying it out loud. We deal with small moments – planning vacations, making purchases, visiting family, entertaining old friends – in a sober and reflective way. Routine plans – Christmas with the family; the vacation cottage; an annual trip – become critical decisions. We discipline ourselves to push aside the things that are trivial. It becomes easy to ignore the cracks in the driveway and the clutter in the closet.
And we occasionally treat it with laughter although, perhaps to the horror of some, it is gallows humor. We joke that when I am gone, the piano, the house, the cars will all be his. We laugh and mimic Homer Simpson, believing he is doomed, reading a pamphlet headlined, “So You’re Going To Die.” It reminds us that we are in a real world where playfulness is a part of life.
There is no bucket list. There are no plans to see the great pyramids, kiss the Blarney Stone, or throw a party in Times Square. We look to the small things we have known for decades that have become precious to us now: a walk on the beach, a Saturday matinee movie, sharing a bowl of ice cream, holding hands as we go to sleep at night.
Details – advanced directives, the will, the attorney, the broker – are easy. These will help put affairs in order but they do not address relationships with the world and the people who inhabit it.
The hard things that tug at the heart and create the pain are the unbearable truths to parents that they will lose a child; to siblings that the person they’ve known their entire lives will be gone; to children that they must overcome and move on. They convey a clear and undeniable message to doctors that they must relinquish the desire to salvage, fix and prolong.
But most of all, the truths we come to know lie in the depth and clarity of our bonds. For me, this is reflected in the conversations with my husband, the beloved person in my world. I want him to go on with life; to find someone to share it with; to help the children as they struggle with the loss; to remember the laughter and how much we loved each other. That is all I have left to give him. And for that I extract a bittersweet promise that he will make me laugh until the end, that we will hold hands every night, that we will share the ice cream, that we will always talk about what is happening, and that I will die with him beside me.
It is the dignity, the finality, and the truth at the end of life.
Elaine Waples is retired and lives in Atlantic Beach, FL.
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Only a fool goes into this with knowledge, eyes wide open, and unafraid, for there truly is a lot to fear. Tubes. Intrusive treatments that just waste money and good days, in exchange for a precious few extra awful days. Pain (bad), indignity (worse) and total loss of control (much the worst, at least for me, but YMMV–your mileage may vary.) We can mitigate the dangers: have an up to date will, have a durable health care proxy, and talk to your family about what you want, and more importantly, what you don’t want. The choice is ours, and these choices are unique, and individual, as we all are. Likely, they’ll change over the course of a “terminal” illness, but our families aren’t mind readers. We need to be brave enough to tell them what we want, and when the time comes, to say goodbye. An awful lot of good can happen in the middle bad, but only if we let it. Thank you for your post.
Beautiful. This is. You are. Thank you.
Thank you for articulating what so many fear to voice I am a fan of the occasional round of gallows humor – – when my brothers and I played Scrabble while on death watch for my mother as she spent her final hours in a coma after many years with deterioration from Parkinson’s I announced there should only be death and dying words on the board
Your grace and dignity are an inspiration I hope that when your journey comes to a close you experience a good death
“a recognition that the end of life is just not about the person who will pass. It is all about those that will be left behind. Our dying process imperative is to help those that will inevitably grieve. Not an easy task but one that must be undertaken.”
15 years ago my first-born child was dying of cancer (she was 30 when she died). She spent much of her final months counseling and consoling others who were her fellow members of the Santa Monica Wellness Community. They’d started a sub-group “Young people living with cancer.
She was heroic, fearless, magnificent.
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One day I’m gonna finish that essay. Still seems like last week.
Elaine, I wish you and your loved ones strength and peace and love.
I am not a religious person, but I am very spiritual. The end of life in my mind demands a pragmatism that needs to be developed over many years. Or in the case of an unexpected rapidly approaching event, a recognition that the end of life is just not about the person who will pass. It is all about those that will be left behind. Our dying process imperative is to help those that will inevitably grieve. Not an easy task but one that must be undertaken.
I get the feeling that Elaine (I use your first name because I lived in Atlantic Beach for 20 years!) has made the decision that this event is not about her, and as it should be, she is seeking to make those around her comfortable with the process. A lesson she may leave with many of us. .