To Hell and Back: How I Came Back to Life After My Mom’s Death
Caring for my mom in her final days really messed me up, but I survived it and eventually recovered, and I’d do it all again if I had to.
Medical History
My mom, Barbara, had been ill for a very, very long time. She had an amazing work ethic, and she valued that about herself. I admired it about her, and I emulated it.
It was a necessary thing, and it is for many people. She was diagnosed with rectal cancer in 2006, at age 41, and about 11 years later, she was diagnosed with metastatic lung cancer. She died on June 21, 2017. It was the summer solstice, the longest day of the year, because of course it was.
Her quality of life had been pretty piss-poor for a long time. I knew she wasn’t long for this world, and I knew things were getting worse, not better, at a rapidly accelerating rate. I felt this on a gut level a few weeks before she was diagnosed, but nothing prepares you for watching someone die.
28 Days In Hell
On the evening of May 25, 2017, I finally convinced my mother to go to the emergency room. She had a terrible cough. This was long before COVID-19, thankfully, but it was a kind of cough I’d never heard before, and considering the environment I grew up in and my family’s medical problems, I’d been exposed to most types of chronic cough.
In fact, I can identify people by their coughs, and I can even predict what kind of cough they’ll generate based on the time of day. This was new.
There was an ambulance that made it to the hospital around the same time we did, carrying someone who had been in an ATV accident. We were there for a long time while they dealt with them, but when they finally got her into imaging, things moved rather quickly. We were told, around 11:30 PM, that she had a “large pneumonia,” in the lung, causing the cough, and “masses,” plural, on her liver. Because of the liver situation, they transferred her to another facility, about an hour away by ambulance. My dad borrowed a vehicle from an old friend, picked me up, and we followed.
The Monday after, May 29, happened to be Memorial Day. I remember only because this was a teaching hospital at a major university, so all non-emergency functions were unavailable, and so we both stayed there from around just after midnight on the morning of Friday, May 26, to the afternoon of Tuesday, May 30.
We went home after that, back to the house we both shared with my dad (her husband) and my brother (her child), the house I’d done most of my growing up in. The next day, we went to her primary care physician’s office; less than 24 hours after that, I was helping load her into an ambulance, her brain already too scrambled to understand what was happening to her.
The screaming is what can really mess you up. Years later, when my partner and I watched the Hunger Games films, the screams and the portrayal of PTSD symptoms made the film a little bit too real for me. (Don’t get me wrong; the films weren’t bad, in my opinion. But I do think anybody with PTSD should be cautious with them.) We don’t encounter real fear in life very often, but apparently, when you’ve got lung cancer that’s metastasized to your liver, and when the liver then becomes unable to do its job of filtering out toxins, those toxins make a beeline for the brain.
When that happens, you can lose your understanding of reality, of whom you are and of where you are. And it’s understandable that that’s terrifying to experience. It’s also terrifying to watch happening to someone, in real time, knowing there’s nothing you can do.
Eventually, and mostly because of her pain level, I made the decision to move her to hospice. When she had first been admitted to the hospital, the goal was stabilization; this was evidently not a goal that the hospital was capable of accomplishing. If they were capable, they were not willing, as evidenced by the repeated cycles of them administering doses of Dilaudid every four hours, even though she seemed to need it every three hours to prevent breakthrough pain. At one point, she was so out of it, she tried to call 911 from her hospital bed.
Initially, the hope had been that she would spend her last days at home. I helped move her into her room at hospice, spent about 36 hours there, and went home for a shower and a bit of rest in my own bed. While I slept, my dad went to see her, and when I woke, he related to me and my brother that mom would not be coming home.
She had tried to get up and leave, not understanding where she was, and she fell. Not only did she fall: she had a Foley catheter inside her, and that was ripped out when she fell. She could not take nourishment from any route; any fluid would go right to her lungs, and anything she tried to swallow would be regurgitated or aspirated. And IV nutrition wasn’t an option because she would pull at any cord attached to her or nearby.
She begged me for water. The most I could do was give her a moistened sponge to suck on. Her heart stopped beating, and this was the cause of death, but she really died of thirst.
I couldn’t help thinking of the film A Beautiful Mind, when John Nash, the main character, meets Charles, his roommate at Princeton. Charles tells him about hangover chemistry:
Did you know that having a hangover is not having enough water in your body to run your Krebs cycles, which is exactly what happens to you when you’re dying of thirst. So, dying of thirst would probably feel pretty much like the hangover that finally bloody kills you.
Only, in this case, it was a choice between death by thirst and death by drowning, which is what happens when your lungs fill with fluid. There was nothing I could do.
There was nothing anyone could do.
After Death
I was angry. Anger was safe. I wanted to find my mom’s primary care doctor and, in the immortal words of Rosa Diaz, “Punch him so hard in the mouth that he bites his own heart.”
We considered suing, but the lawyer we talked to said that, while the doctor was negligent and had possibly behaved unethically, we did not have a winnable malpractice case. That may be up for some debate, but the point is, I was out for blood. My therapist asked me to confirm that I wasn’t going to retaliate against him; I never did, because I understood that this wouldn’t accomplish anything. It might have been satisfying, on some level, to go full Florida on him: square off in a Waffle House parking lot with a meth bomb in one hand and a gator in the other. I definitely fantasized about it, but in my mind, it wasn’t worth the trouble.
I wasn’t just angry that he hadn’t managed to diagnose her. She’d been seeing him an average of twice per month for about two years, and I know this because I was there for all but one of those appointments. I know he was aware of her symptoms. If he had done just one CT scan the first time she complained of trouble breathing and unexplained pain, or the second, or the third… maybe she could have lived longer. I’m not sure how good her quality of life could have been after a second round of cancer treatment, radiation and chemo, surgery, and whatever else they could throw at it. But that wasn’t the point, either.
The point was that she deserved to have agency in this, and by the time we knew what we were dealing with, her brain was soaking in toxins because her liver was failing. She should have had the opportunity to decide what she wanted to do about it, if anything. If she wanted to, I believed she should have been able to go out on her own terms, rather than go through treatment. And if she’d asked, I would have considered it an obligation to assist her in whatever way she preferred.
To be clear, this didn’t happen. I never brought it up to her, because there was no way she could understand what was happening and give informed consent. It was moot.
Between May 25 and June 21, I watched her go through hell, and there was nothing I could do to help her. That might have been the hardest part.
The Disconnect
I was exhausted. For those 28 days, I slept when, where, and how I could. But it wasn’t just a physical kind of exhaustion.
I couldn’t make anyone understand this. They wanted me to come back to reality and the land of the living very quickly, but I couldn’t. At one point, not long after she passed, I realized I was a day or two late for my testosterone shot, which she used to give me. I’ve never had problems with needles or been scared of them, but giving myself an injection didn’t seem to want to happen. But this time? I jabbed it right into my gluteal muscle, no problem. Such was the depth of my exhaustion.
A tiny silver lining on a very, very dark cloud. But I digress. No one seemed to understand what I was going through. I was angry: angry at her doctors, angry at her siblings, angry at my dad’s brother, angry at the system. Certainly, I was angry at myself.
My cousin, whose mother was my mom’s sister, texted and called me. I appreciated the gesture, but he didn’t understand my headspace, and he didn’t seem to want to. It was like everyone was telling me, “Perk up, buttercup!” And this was tacky, unrealistic, and quite tone-deaf.
The Storm
There were other noteworthy events in 2017, of course. Two major hurricanes crashed into Florida and the Caribbean, and I dreaded them. I dreaded them because the house we lived in leaked, and that meant what we affectionately termed “bucket patrol,” emptying buckets of water, sometimes with extreme frequency over several hours. It isn’t something you ever really get used to, and it ruined thunderstorms for me.
But this time around, I dreaded the storms because storms, especially of this magnitude, meant that power outages were a virtual certainty. This was a problem: most of the things I had been using to distract myself from my feelings and the PTSD symptoms, including flashbacks, required electricity.
I didn’t want to process my grief, or my guilt, or any of the complex feelings I had surrounding my mom’s death, the process of her dying, or the events leading up to it. I certainly didn’t want to think about the things she said when her brain was pickling in poisons. Or the way she screamed for help in the ambulance, or the way she begged, literally begged me, to give her water. When the power failed, I powered up a battery-powered lantern and cracked open a used calculus textbook.
But then I thought… no. This ends now.
The Work
To be clear, intentionally running from my feelings ended in that moment. The actual work to be done would take much longer than one lonely, stormy night.
It started with whipping out my sketchbook and writing whatever came to mind. The writing went on for hours. I owned my sadness and my guilt. For the first time, I was a little glad she wasn’t around; the storm would have stressed her out to an extreme degree, especially because we had no power or cable for several days. No one in town did. She was addicted to TV; it was one of her only real pleasures in life, by the end.
In some ways, I still can’t believe she’s gone. But I choose to believe she’s no longer suffering, and that has helped me through… along with a lot more writing. And therapy.
When it comes to managing them, only feeling my feelings has had any real effect. Painful as it can be, processing them, contemplating them, and coming to better understand them have been integral to keeping any amount of sanity.
Coming Back
In 2018, I started dating and having sex for the first time in my life. But the rest of my life, I picked up where I left off, back in 2016.
I was happier than I’d ever been. I moved into an apartment in a college town not far from where I grew up, and I met some really cool people. Most importantly, I discovered the value of self-expression and began to appreciate the many forms it can take. I got a tattoo in my mother’s honor, a dogwood flower on my right shoulder, and I got another on my collarbone that says, “Life finds a way.”
I went through a traumatic experience that summer, but I came out of it in better shape than I would have, had I not done the aforementioned work. Returning to the land of the living seemed like a total non-starter when I first considered it, but I’m so, so happy to have been wrong about that.
