It was late August 2018 and I was rocking my newborn daughter when my mom and stepdad called me together from the car to tell me about her latest oncology appointment. She could start another round of aggressive chemo combined with radiation to treat the progression of her stage 4 cholangiocarcinoma or stop treatment altogether.
“He says if I do nothing, I could have three to six months,” she told me. “Eventually my liver will shut down, but he says usually with this type of cancer it’s not too painful. I’ll just lose consciousness until I’m gone.”
Gone. I could tell my mom was trying to be brave, but I knew from her tone that silent tears were running down her cheeks. We’d had bad news before — chemo that didn’t work, scans showing more tumors in more places, clinical trials that failed ― but she’d never seriously talked about stopping treatment. She said she wasn’t sure she was ready now, but I knew that even her bringing it up with her doctor meant that time and options — the two things we’d spent two years chasing — were running out.
After we hung up, I set down my sleeping daughter. Gone. I couldn’t imagine it. Sure, I’d seen movies like “A Walk to Remember” and “Stepmom.” I’d been watching patients (and main characters) die on “Grey’s Anatomy” since I was 12 years old. I’d seen fictional people become weak and struggle to speak. Sometimes, a scene even showed them taking one last breath with their eyes closed and a peaceful expression on their face.
But were those depictions by Mandy Moore and Susan Sarandon as waifish women slipping away with resigned grace really accurate? I needed to find out, so, like every other human experience I’d wanted to learn about — puberty, kissing, sex, breastfeeding — I opened my laptop and started Googling.
I bypassed medical websites and instead searched for first-person stories. I read Amy Krouse Rosenthal’s viral essay “You May Want to Marry My Husband” and watched her widowed husband’s TED Talk. I read Nina Riggs’ essay “When A Couch Is More Than a Couch” and ordered her book “The Bright Hour,” as well as Paul Kalanithi’s “When Breath Becomes Air.”
But I didn’t find what I needed. Everything was about coming to terms with death ― not what it was actually like to die or watch someone die. The only helpful thing I found was that those stories reiterated the shitty normalcy of my mom’s situation: Lots of people die from cancer (over 600,000 in 2022).
I wasn’t prepared to lose my mom. I didn’t want to watch her die. When she decided to pursue more treatment, I thought I might not have to. I still held out hope she could get better.
But in September, after a bad round of chemo, she began to spend most of her time in bed. On Halloween, she was admitted to the hospital for a week because of excruciating pain. Before Thanksgiving, she entered the hospital again and returned home unable to walk to the bathroom. She wanted to believe it was all temporary and that she could regain enough strength to resume treatment.
Even though my brother and stepdad and I wished for the same thing, it wasn’t to be. By early December, she could barely eat spoonfuls of baby food or take sips from a bottle of Ensure. It was getting increasingly harder to help her out of bed and onto the bedside toilet, and we’d completely given up on trying to help her bathe. My mom ― a woman who never went anywhere without makeup and styled hair ― was starting to smell. We needed help. We couldn’t remain balancing on the fine line that separated honoring her wishes and neglecting her needs.
My stepdad and brother and I had a discussion and then we carefully approached the idea of hospice care with her. Her immediate response — “No, people go into hospice care and are dead two weeks later” — eventually gave way to her understanding that we, her primary caregivers, needed help.
She handled entering at-home hospice care the way she handled everything as a successful lawyer — methodically. She put in a call to her oncologist’s office to ask for information, clarifications, details and recommendations. While her health care team had been incredibly helpful and responsive during her treatment, they weren’t once that treatment failed ― once it became clear she was on a palliative track. I don’t remember how long it took for her to get a call back, but I remember her putting the phone on speaker and asking which hospice she should use. The doctor’s nurse practitioner was remarkably unhelpful and basically told us all hospice cares are the same because the differences, to her, were negligible. She didn’t understand why my mom cared so much.
Of course my mom cared about how she’d spend her last weeks and days. She was terrified of dying ― especially of dying in pain. I think the only consolation was that she thought she could at least die at home surrounded by those she loved, as peaceful as any on-screen protagonist on her death bed.
A few days later, sitting completely upright in bed with her trademark yellow legal pad and blue felt-tip pen, my mom used one of her final bursts of energy to interview an at-home hospice care program. My brother, stepdad, grandmother, close family friend and I were there with her, listening to her ask questions and watching her take notes. But every question she asked and every answer they gave was logistical ― not practical. None of us sitting in that room with her knew what to expect.
What made it worse is that even after my mom signed the papers, she didn’t want to accept the reality of her situation. “I can still get better. There are people who walk out of hospice,” she told me.
Her continued denial made it that much harder when her body showed us it wasn’t getting better. It started with her urine. She peed less and less. The liquid turned from a pale yellow to a darker amber to a deep orange to dark brown. Then her feet turned blue. “It’s called mottling,” the at-home nurse said as I trailed her out the front door, begging her to explain what was going on. “How long does she have left?” I asked. “Usually, it will happen within a week,” she said before getting in her car.
That was the only real information I got from her. So, I sat next to my mom, trying to understand what was happening, waiting after each breath to see if she’d take another. At the time, my mom was refusing most pain medicine. She said she didn’t want to lose consciousness. That also made it worse because she was witnessing the deterioration of her body right along with us.
“The night before my mom died she used a final surge of energy to talk to my brother and me and give us advice. At one point my brother left the room and my mom looked at me and said, ‘You put me here to die.’”
Eventually, once she began losing control of her bowel movements, we realized that we needed even more help than at-home hospice could provide. A few visits from a nurse every day wasn’t enough when she needed a catheter inserted and someone to help us clean her hair and body throughout the day, not just a few times a week. She was also in more pain and needed someone to administer pain medicine more regularly.
My mom didn’t want to move to an in-patient facility. Often, in those movies and TV shows, death looks prettier and cleaner than it is. It’s sad but peaceful. I’m sure for some people it’s that way, but it wasn’t for my mom, and the rose-colored lenses that pop culture uses to depict dying at home wasn’t worth actually keeping her at home. An ambulance transferred her to a local hospital’s hospice facility.
For two days we sat by her bed, grateful that we’d moved her to a place where we weren’t alone as her body continued shutting down. Her mouth fell slightly ajar. She needed both a catheter and a diaper. Her eyelids fluttered somewhere between open and closed. She slept more. Her lips chapped. She vomited a dark substance that no one could identify. But, as awful as it was, at least we had help. At least she was clean and in a place with people who could keep her as comfortable as possible.
The night before my mom died she used a final surge of energy to talk to my brother and me and give us advice. At one point my brother left the room and my mom looked at me and said, “You put me here to die.” I tried to assure her we wanted her to be comfortable, but she snapped, “I don’t want to talk about it right now,” and closed her eyes.
Those words are ones that I’ve returned to often since she passed away. For the first few years, they made me feel guilty. They made me feel like a bad daughter. They made me feel like I’d done something wrong. Now, four years later, with the help of time and grief counseling, I can contextualize them. The pain medicines and buildup of toxins in her body made her paranoid. She was angry about leaving this world. But she was also right. We transferred her there to die.
And she did. Mid-morning on Dec. 15, her breathing grew raspy. Her throat rattled. An hour later, with her head tilted to the side and mouth still halfway open, she died.
I used to think that talking about my mom’s final month, especially those last days, would take away her dignity, especially because she didn’t want to be remembered for who she was when she was sick. Now, as the seasons change and the fourth anniversary of her death is here, I begin to relive it all over again, as I have every fall and winter since then.
I remember everything in flashes. I remember sitting by her bedside frantically Googling what happens when a body shuts down. I remember my brother telling me that he had been upstairs, alone, Googling the same thing. I remember how alone and unprepared we both were.
I know that I can’t change the trauma of losing my mom at 27 or the fact that she — like many people — didn’t die peacefully at home as she’d imagined. But I know that she was loved and cared for and that we did the best we could with what we had ― with what we knew. I will never forget the way it felt to hold her hand as it went limp — I am certain that moment will stay with me forever ― and I hope that writing this can help others sitting by their loved one’s bedsides feel less alone when faced with the messiness of death.
We don’t talk about that terrible messiness enough. We don’t talk about the fact that we exist in physical bodies that will eventually stop working. We don’t talk about what it looks like when our loved ones die.
I know this is my singular experience and others have different ones because death looks different for every person, but I hope this story can become part of a much-needed larger conversation. Death is an inevitable part of life. We need to talk about it more because the more versions of death we acknowledge ― especially the hard and messy ones ― the less mysterious it becomes and the better prepared we are when it’s our mom or spouse or us who is facing it.
I hope this essay reaches anyone who is going through what I went through ― however that looks and feels for you. I want you to know that you are not alone. What is happening is awful, but it’s not unspeakable, and it’s time we start talking about it.
Sarah Hunter Simanson is a Memphis-based freelance writer who received her MFA from Vermont College of Fine Arts and is working on her first novel. Her writing has appeared in The LA Times, HuffPost, Salon, Catapult, Romper, and The Daily Memphian.
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This story originally appeared on HuffPost