by guest writer Leah Carey
It was 3 a.m. and my mother was moaning and thrashing just feet from me. It had been several days since I’d had more than an hour of sleep at a time.After two years of living with cancer, my mother was finally dying.
We had pulled the sofa alongside her bed to keep her safe from her latest shenanigans. Despite being mostly unconscious and having lost the last of her physical strength a few days earlier, she would occasionally throw her legs over the side of the bed and stand up, all in one crazy, determined motion. If there hadn’t been someone there to catch her, there’s no telling what might have happened next.
I lay on the couch, keeping guard over my mom—just as she had done, I’m sure, for countless hours of my childhood.
Movies and television shows generally depict death from illness in one way (as opposed to death by murder, which is portrayed with endless, grisly inventiveness by procedural-crime-show writers.) The sick person is lying in bed, weak and without color. They may or may not open their eyes and give a knowing smile or a wise word. Their eyes close and their head falls to the side, the universal cinematic signal that they are dead.
This was an image so ingrained in my head that it hadn’t occurred to me that death from cancer might happen any other way. Unfortunately, my mother did not go peacefully into that good night. Her leave-taking of her physical body involved what looked like a lot of struggle.
Devoid of any frame of reference—or warning from medical professionals that she might exit in a significantly less peaceful way—I was in a state of high distress. She appeared to be suffering, and that was the very last thing in the world that I wanted for her.
So I consulted the one friend who had never failed me when I was seeking important information: Google.
I opened a search page and typed, “How do I help my loved one to die?” I was not looking for information on advanced directives or how to procure hemlock. I wanted to know how I could make this process of transition a calmer, more peaceful one for the woman who had spent my entire life protecting me. For the first time in my memory, Google failed me. It offered up endless hits on living wills and assisted suicide, but nothing on how to make the final hours of my mother’s life as peaceful and comfortable as I wanted them to be. I felt helpless to do anything but watch my mother suffer. This was the longest night of my life.
As my mom’s physical symptoms intensified over the next 24 hours, I grew more frantic, and although we had all wanted Mom to die at home, we decided to transfer her to the hospice room at the hospital. She left us just 12 short hours later.
In the immediate aftermath of my mother’s death, a burning question took hold of me: How do we help our loved ones to die? As days turned into weeks, I became a little obsessed with that question.
Fortunately, I work in a business where a little obsession can be the starting point for a wonderful piece of work. I have dedicated this year to following my question wherever it takes me, and my editors at the Caledonian-Record newspaper have granted me a space to share what I find with readers.
So far I’ve learned that there are people whose life purpose is to play music for our loved ones as they are dying. I’ve learned that there are communities that form care teams to make detailed death plans for their fellow members. I’m learning about the language we use about death and how it affects our experience.
I’m also identifying questions that I wish I’d asked my mom. We’d had all the important conversations about what she didn’t want—feeding tubes and resuscitation efforts. But I hadn’t asked about what she would like—music, silence, prayer? People she wanted with her, perhaps even people she did not want with her in her final moments?
These are all things I wish that I’d known before my mom’s death—perhaps I would have felt less helpless. And if I had felt more secure, perhaps I could have provided a more peaceful and calm environment for Mom to experience her death, no matter how difficult it looked to me.
The Living With Dying newspaper series I am writing can be found online, every other Tuesday. New installments (including online exclusives and audio-video extras) are published for subscribers, and previous installments are made available for non-subscribers. I hope you will visit the series and that you will find tools, resources, and ways of thinking that will bring peace to you during death—whether it is your own or that of someone you love.
Leah is a writer for The Caledonian-Record, a daily newspaper in northern Vermont and New Hampshire. Her mother died in December 2015 after a two-year journey through cancer. Leah was by her side through the entire experience.