The Active Dying

Content Warning: This piece contains some graphic descriptions regarding death and dying. If you know someone in hospice care or are currently grieving the loss of a loved one, this may be difficult to read.

About a month ago, I was browsing through some old notebooks looking for some measurements I jotted down for a shelf I was planning to build, and I discovered a hastily-written journal entry recorded at my mother’s bedside in her last few weeks on this Earth. That whole experience was so intense, I didn’t even remember writing it; in fact, I hardly recognized my own handwriting. And just like that, two pages of pen-scratch brought me to my knees.

I was certainly in no shape to build a shelf. But the retrospection within me was powerful, so I spent an entire afternoon crying in a coffee shop, recollecting those moments and using those pages as inspiration to write this.

I think this is the first piece I’ve ever written that brought me actual physical relief when it was complete . . .

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“Ugh, I feel like I’m DYING…” I whined dramatically over the phone to my Mother, who I’d called long-distance to vent about a recent breakup. I was young, my heart had been shattered; I felt helpless, and I just needed my Momma to tell me it was going to be okay.

She responded instead with a cold and humorous tone, “Well, technically we’re all dying, if that makes you feel any better.” As a seasoned paramedic who had countless experiences with actual death, she couldn’t resist an opportunity to make light of my melodrama. This was a typical response from Mom, and it raised a smile on my tearful cheeks.

Her dark humor was wildly contagious, so I sniffled with a laugh in my voice and cracked, “Well geez, Mom, I guess we’re all just watching each other die then, huh?”

“Ha! Sure, that’s one way to look at it!” she chimed back, with a loud chuckle.

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Fast-forward eleven years, and I’m sitting next to her on the bed, in the middle of the night, rubbing her back as she struggles to express what she needs from me. She is helpless, confused, and frail, and sometimes the only thing I can do for her is rub her back while she focuses all of her energy on breathing in and out.

“I feel like I’m dying,” her voice cracked as she looked at me with a tired, glazed-over look.

I couldn’t conjure up the same wit she’d offered when she made light of my pain years before with a playful rebuttal. At this point, we had been through too many waves of denial, and I was too tired. I could only deliver the truth….

“That’s because you are, Momma. Your body is tired of fighting, and it’s just trying to let go. I’m here to make sure you do that comfortably.”

In the palliative care field, they call this stage the “active dying.” A college textbook could likely describe the symptoms, and any trained professional could identify them on demand. But no amount of formal education could have prepared me for what followed. The drama of coordinating unreliable caregivers, the challenge of caring for two households, keeping my kids fed and occupied while my dying Mother screamed for help in the next room, wheeling her outside at 2am to smoke one puff of an old cigarette in the rain. After forty-six days of 24-hour care rollercoastered with screaming fits, paranoid delusions, streaks of insomnia, escape attempts, medication refusals, food strikes, and more….I found myself at one point, experiencing the most paradoxical feeling I’d ever felt.

…I wanted my Mother to die.

Not because I wanted her gone, but because I just wanted all of her misery to end. She had endured, consumed, regurgitated, and repeated a toxic cycle of self-destruction for years, and that exhausting process had finally stripped her of every one of her most endearing qualities.

Sometimes, after hours of mumbling confusion, she’d pipe up and look at me with child-like lucidity.

“What the hell is going on, Sarah?!”

….was I supposed to be honest with her now?  

I was witnessing the demise of a great warrior, an accomplished poet, a trained life-saver, a true healer and an incredible musician. How could I tell her that she did this to herself?

That she had built herself an impassible bridge, one that led to a solitary isle of misery, where she eventually became a permanent resident. And, as she cried for her own rescue, she simultaneously set the bridge aflame with embers of her own half-smoked cigarettes. She flooded the entry with bottle after bottle of cheap booze, and she built an impenetrable wall from a lifetime of trauma and mistrust. She refused to accept help, yet she begged for company in her despaired and raspy voice.

She never wanted to die alone, this was not her plan. Turns out, it wasn’t mine, either.

So now, here we are. It’s 4am. She is finally asleep after a long night of battles and anxious confusion. I am kneeling by her bedside with her hand in mine. I rest my head on her sleeping shoulder, and my thoughts wander back to our relationship over a decade ago, to the time where our roles were reversed, and she was still a Mother to me.

I suddenly feel compelled to speak, but what could I possibly say?

“You know what, Momma? We’re all just watching each other die…”

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*pause for deep breath*

If you made it this far, I can’t properly express how much I appreciate you for reading this. This was a piece I felt so hard, and still feel every time I read it. I realize it’s not an award-winning novel, but it’s a major milestone for me to share something so personal. If you’re curious about the backstory….

Mom passed away in 2019, three days short of her 63rd birthday, with her fateful diagnosis being COPD (Chronic Obstructive Pulmonary Disorder). She had a tumultuous upbringing that led her to develop crippling addictions to alcohol and cigarettes as an adolescent, and she had a lifelong “love-hate” relationship with both until she passed. When her health began to fail, she moved closer to me so she had family to care for her. Her final days were challenging, but we endured them together, side by side. I’m proud to say she passed peacefully in her home, thanks to the vigilant efforts of family and hospice.

She drove me absolutely crazy, and I miss her every single day.