The facilitator outlined the steps to execute a health care power-of-attorney, letting us know every state is different. I knew we were about to go off the rails when a class member asked about Florida laws. We were in Chicago. But the real turning point came when a woman announced her parents died of Alzheimer’s.

”I just want to know where to get the pills” she said, “and how will I know when to take them?”

She was talking about suicide.

I’ve been schooled on end-of-life living wills, advance directives and “practitioner orders for life-sustaining treatment” (POLST). These documents allow us to describe our wishes POLSTat the end, and to designate someone to decide medical treatment when we can’t speak for ourselves. All my papers are in order. For all the Death Cafes, Journey Care and Compassion & Choice discussion groups I’ve attended, never have I been in a roomful of people who turned the conversation so fast and openly to how and when to commit hari-kari before they couldn’t speak for themselves.

The Conversation Project® is yet another public engagement initiative with a goal to have every person’s wishes for end-of-life care expressed and respected. Representatives from the Project don’t come armed with facts on assisted-suicide, or how to identify that one perfect moment before you lose your marbles completely. They do, however, listen. And in my group, person after person expressed fear of not being able to off themselves in time.

One man told us he holds the health care power-of-attorney for his mother, that her instructions are explicit, but he can’t bring himself to pull the plug.

“I’m afraid my siblings will all get mad at me,” he said.

Everyone gasped. It’s what we all fear the most.

I never thought of the possibility that I’d be kept alive beyond my sell-by date. I’m not afraid to die. I’ve thought about it my entire sentient life. Huddled under my first-grade desk waiting for an atomic bomb to drop, I knew I’d be going to heaven to see Jesus (my best friend at the time). What’s to fear? I even tried it out once. I took eighty sleeping pills when I was twenty-four because I knew there was a better place than Point Pleasant Beach, New Jersey, in the cold grey winter.

The idea of my body curling up to a breathing machine and a feeding tube without my consent or knowledge is new. Each and every daybreak now I wake with fear, unable to face the day. I use Anne LaMotte’s simple prayer, “Help me. Help me. Help me,” just to get out of bed.th

On a recent temperate morning I walked Henry on our tree-lined motionless street. A
gust of wind came along suddenly and blew the fall leaves off an overhead honey locust. We stood in a yellow-leafed shower, swaddled in fluorescent care. And the fear of dying without dignity moved off into the gutter for the day.


Death Cafe

Illinois POLST

Conversation Project

Journey Care


 

5 thoughts on “Fear of Dying Without Dignity

  1. Thank you for writing this, Regan. Had never heard the acronym POLST before, and I love how you refer to the end of your life as your “sell-by date.” I may borrow that phrase Giving you credit, of course!

    Liked by 1 person

  2. I love the rain of golden leaves and your joy in them as well as your straight on talk about fear of not dying before miserable incarceration on tubes. I share that latter fear and will look for all those moments that bring joy between now and then. One joy, of course, is friends like you. Yes, I too have signed the living will and papers, but can only hope others will read and care to act.

    Thank you for your writings.

    Nancy

    On Thu, Oct 31, 2019 at 10:24 PM Back Story Essays wrote:

    > Regan Burke posted: “The facilitator outlined the steps to execute a > health care power-of-attorney, letting us know every state is different. I > knew we were about to go off the rails when a class member asked about > Florida laws. We were in Chicago. But the real turning point ” >

    Liked by 1 person

  3. Regan I just love your writing. I look forward to your posts every week. You have such a lyrical style that somehow enhances the visceral effect of your subject matter. I just read and admire.

    Liked by 1 person

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