Personal Stories: It's Ok to Wish for Death

This article was originally published in Medium on 10/18/24

It’s ok to wish for death

On dying parents, rage, and slow ambiguous loss

I wanted my mom to die.

It’s important to me that you know that.

Truth is, I wanted my dad to die, too.

I spent so many years fantasizing about the death of my parents that it came to define my relationship with them. It came to define me.

I’d lie awake at night, drafting and revising their eulogies in my mind. I tried to imagine a day when I would be released from a never-ending cycle of constant worry, of wondering, of obsessively reading electronic health records like bedtime stories each evening, scouring the files for answers that didn’t exist.

There’s a story here, of course. I’m going to tell it. But give me a minute.

First, I want to say this: My experience wasn’t unique. It’s not even that uncommon. It felt, as it unfolded, excruciatingly isolating, but I’ve come to learn that many people struggle with the unfair and gruesome aspects of losing their parents, and many people long for the finality of death.

I know that now — but why didn’t I know that then?

Because culturally, we don’t talk about this version of loss. The one with rage that has no place to go. Where complicated lifelong relationships with our parents morph into a whole new level of complexity because they are now unavailable to us in a brand new way, and there is no resolution in sight.

For all our talk lately of sandwich generations, of mental illness and addiction and our broken healthcare system, for all the glitzy Alzheimer’s fundraisers and celebrity psychologists guiding us to collective enlightenment on their latest podcasts, we aren’t really changing anything at all. It’s all just noise.

All of this “progress” just serves to distract and dress up the very puritanical values that continue to underly the way we talk about parents and children and family relationships in this country. It’s all a well-concealed vehicle for propagating shame.

Look no further than Google for the evidence. A search about dying parents will yield reams of content about how to help your loved ones as they grow old. Gentle, cartoonish, reminiscent of a bygone era where nuclear families with stay-at-home mothers and cohabitating generations gently usher elderly grandparents up along the stairway to heaven.

Nowhere does it talk about rage. The brochures don’t acknowledge that you may not be able to bring your parents into your home, or afford home healthcare, or have capacity to manage this process. They definitely don’t allow for the possibility that the process of decline may be so horrific that you actually just want them to hurry up and die.

Our cultural aptitude for the nuances and gritty realities of death and dying is pinky toe-deep and about as real as a TikTok is long. We meme everything and distort even the greats like Rilke, Rumi, and Mary Oliver into quotidian quotecards befitting the Hallmark aisle of the grocery store.

We are commercializing enlightenment and advancing a narrative of grief that promotes oversimplification. It causes people to suffer alone whenever their experience diverges from the popular storyline. And it holds firmly in place a set of outdated norms that are harmful for our children and these next generations who need them to evolve.

I believe this is driven by a series of forces that are generational, cultural, economic, and systemic.

I want to talk through all of them, because this needs to be addressed.

But first — let’s talk about rage, death wishes, and slow ambiguous loss.

Here’s my story:

My childhood was sad. I came into this world in 1982 on the heels of a tragedy. My dad was an alcoholic, failing miserably to find a healthy way through PTSD he sustained after being shot in the line of duty while on the force of the K9 unit of the King County Sheriff’s Office.

My mother was trying to help him, juggling building a business with fighting an unwinnable battle at home that would last years until their eventual divorce (1996) and his eventual death (2016) from chronic and acute alcoholism. That is a story, too. But it’s not the one I’m telling today.

At the time of the shooting, my sister was a toddler. She internalized our dad’s depression. I came along a year later, completing the family unit.

In the field of study about family roles in the face of alcoholism, I was an unhealthy blend of hero and lost child. I tried to be both invisible and successful, so that if they did take a moment to pay attention to me, at least they’d have something to be proud about.

I share this not because it’s extraordinary but rather, because it’s so ordinary. So many of us are shaped by early childhood trauma, and it forms the foundation for our relationships with our parents.

They loved me. They meant well. They were broken. And we all broke apart.

I don’t have to go deeper here — I already did that in an audio documentary project I made last year. It’s six full chapters examining the forces that shaped my family, because I was looking for answers and understanding.

I got it. I also got some new perspective. Here’s what I could see:

My first 20 years were spent losing my parents inside their respective traumas. And my next 20 were spent losing them to illness. Neither process was fast.

Net-net? I just never really got enough of them. Loss was our core shared dynamic.

I don’t hate them for it. But by the time they both began long, unmitigated, interminable declines, the feelings I had toward them were already… well, complex. The loss of my mother is the one that hurt me and shaped me the most. It’s this loss I want to share, now.

All the ways she almost died

July 2000 was the first fire drill. Emergency surgery due to gallstones.

Mom had upwards of 20 of them, causing unbearable pain that would later be linked to diverticulitis and colon cancer. During this process we also learned that she had an aortic aneurysm. It was not large enough to demand action, yet.

I was only 17 that day, and unaware that this was just a preview of what was to come.

The next incidents flowed a little more rapidly.

There was foot fusion surgery in 2001. She was losing strength in her extremities, an early and nefarious sign of undiagnosed Multiple Sclerosis. She became depressed. She said to me: “I don’t want to make lemonade today. All I feel is lemons.” It was unlike her.

In 2010, she got that M.S. diagnosis. She was 66, which is way too late for any meaningful intervention.

2012 was when she first stopped eating. We had learned that the aortic aneurysm had become enlarged, and the prospect of heart surgery sent her into a depressive episode. She quit eating for weeks.

That caused her mind to go. I flew down to help bring her back from the brink. We ordered home health and set up a nutrition plan to keep her healthy. She said, “you rescued me,” and I felt a twinge of rage. I didn’t want to be her savior. I wanted to be her daughter.

January 2013 was melanoma. A gigantic cancerous mass removed from her leg, perilous and terrifying, given the state of her heart and her strength.

The cancer did not spread. But it aggravated her heart.

In February, the aneurysm tore open. An aortic dissection. She underwent an emergency 10-hour open-heart surgery. They repaired the tear with a pig valve and fixed the arch with cardiopulmonary bypass.

She stayed in the ICU for an entire week under induced coma so her heart wouldn’t explode. I stayed the entire time.

On the seventh day, she woke. Her eyes fluttered slowly open, she looked around in a daze, mumbled something quietly about seeing gypsies on the ceiling, and then turned to me and said: “Honey! You always come for such short visits.”

She also said that I’d saved her. Again. She asked me to always be there to help wake her up. It was loving. I felt trapped. My emotions were a chaotic mess.

Later that year, she ended up back in the ICU with a blood infection sustained from her hospital stay. On that visit, she didn’t recognize me. It hardened my heart.

When I went home, I found out I was pregnant. Life and loss always so closely entwined.

The next 8 years went like this:

2014: Benign colon tumors. Surgery to remove them.

2015: Leaking internal hematoma due to her assortment of heart meds.

2017: More colon tumors are back, malignant this time. Stage 3 cancer. She survives another high-risk surgery and everyone celebrates. I wanted to punch them in the face.

With each incident, she disappeared further inside herself. My mother, by that point, was no longer even present. She was an alien, capable only of hurting me with her absence.

2018: She stops eating again. We move her into home hospice and prepare for the end. She slowly starts feeling better. Home hospice fires her. We’re back on the roller coaster.

2019: Two falls, two hip replacement surgeries.

2020: The pandemic sets in. somehow, she goes to the hospital every week for blood oxygen checks and never gets sick.

2022: She contracts sepsis. Spends months not eating and weeks not drinking any fluids.

I nearly broke the internet searching queries like “how long MS patient survive no food no water?”

There were no answers to satisfy me.

Who knew I was related to a medical anomaly? A scientific marvel. A zombie, in human form.

I spoke to her on her birthday, February 16, and all she could say to me was “help. Help me. help.” She had no idea what was going on. She said she wanted to die. She couldn’t seem to.

March, she goes into hospice again. I spend a week by her bed. The nurses don’t understand how she keeps living. I find the courage to tell her goodbye. I return to my life.

And on April 7, 2022, she makes her final exit. Quietly. In her bed.

It’s not a sob story, I swear.

It wasn’t until she left, and in the months and years after, that I was able to really mourn her. It sounds selfish when I lay it all out like this. I realize that. My mother’s pain, twisted around as a sob story for myself.

But what I want to illustrate is the tiresome rhythm of a protracted decline. The way loss is complicated, and what it actually looks like for death and grief to be ambiguous and unending. Tiresome. Unyielding.

None of us can escape unscathed when we watch someone close to us disintegrate, so slowly, and we lose access to them in a lopsided process, far too slowly and also far too soon. I’m fond of a quote from Gloria Steinem about the loss of her own mother, which says: “I missed my mother, but no more in death than I did in her life.”

I missed my mother forever, from the day I was born to the day she died. And I will miss her until I take my last breath.

We were stuck together in a thankless cycle that left her, and me, feeling run over, tumbled around, discombobulated, and heartbroken.

Over.

And over.

And over.

Thanks to her cognitive decline, I couldn’t even talk to her about it. Between all the ways I lost her in my adolescence, as she grieved my father’s addiction and the end of their marriage, and all the ways I lost her as an adult, I count maybe 5 good years where she was present for me.

I absorbed the hell out of her in those years. That is another story, another day.

But the continuous cycle of loss with no release gives way to rage. And loneliness.

Lonely isn’t the same as alone. Lonely is a thing you can be even when you’re surrounded by people. Lonely was the way I felt at 3am when I was a new mom and I couldn’t text or call my own mother for advice. It’s feeling trapped and abandoned all at once.

Lonely is the way I felt for all those times when people would say the wrong thing to me about my mom’s persistent illness and recovery cycles, celebrating at moments when I felt shattered. When I had to smile obligingly and say “yes, I’m so glad she’s better” even though I wished nothing more than to be free of this cycle. That was pure isolation.

And then the rage a close companion, consuming anger at the whole universe for keeping me locked in this never-ending experience and making me feel completely misunderstood throughout it.

It’s ok to feel rage. It’s understandable to feel rage. Sometimes rage is easier to carry than grief and loss and lonely.

Sometimes our rage needs to be acknowledged so we can feel less alone and believe that we will, one day, be released. That others have walked that path, that they were ok. And we will be too.

We can survive our rage, it can morph, and we can transcend it.

It’s important to me that you know that.

We’re almost done here.

The last thing I want to do is get back to my analysis.

I’m sick of a culture that portends progress while actually keeping us stifled under thinly veiled norms that don’t work for all of us.

The reality is death is messy. Many of us are in the throes of losing parents while becoming parents ourselves, and we might be navigating our own boundaries informed by childhood trauma that requires us to draw lines around ourselves so we can survive.

That means that it’s ok for our feelings to be complicated. Neglect and abandonment come in many forms and can live hand-in-hand with love. When we’re attempting to rewire generations of dysfunctional behavior, we sometimes need space for complex emotions and room to draw our own path through loss.

Even if it’s filled with rage. Even if it’s uncomfortable

When I look back at my experience with my mother, I see four factors that exacerbated the deep pain it caused during the years we both survived it. They are:

Generational. My mother was raised by a physically and verbally abusive mother herself, who suffered from lack of understanding about mental illness in her generation. As a result, she carried a great deal of dysfunction into our family as she attempted to course correct. I’m picking up where she left off, and trying — as she did — to examine and understand these forces at play and continue the path to healing as I raise my own girls.

Beyond generational trauma, there are also generational norms at play. They continue to dictate the ways “good children” should want to show up for their parents at the end of their lives. But in today’s generation, it’s increasingly common for us to be navigating these things even as we face mounting responsibilities in our own home lives. We need to allow space for people to do exactly this, when they need to, and normalize the fact that there is no normal anymore when it comes to choices each of us make in the final throes of losing our parents.

Cultural. As millennial women age there is an interesting phenomenon coming to light. Following in the footsteps of our mothers and forebears who fought for our right to be in the workplace while also juggling rising social pressure to be present parents as we shoulder a larger-than-equal share of domestic responsibilities at home, we are killing ourselves under excruciating double standards.

These pressures on working women only exacerbate the intense cognitive dissonance that is deeply harmful and drives us as mothers and children of aging parents to burnout and breakdown. We have to break open these unrealistic expectations and change these norms of what constitutes “good girls” in the workplace and at home, and in our families of origin. We’re harming our women, and the injury runs very, very deep.

Economic. To make matters worse, access to childcare and decent healthcare is exorbitantly expensive and restrictive today. Whereas prior generations of working parents often had access to a stay-at-home-parent, grandparents, and community safety nets to help ease the burden of parenthood while earning a living, today’s working moms and children of aging parents are navigating lengthy declines and impossible schedules without any easing of expectations or additional support.

Systemic. Finally, there’s the healthcare system. Our current model tends to prize quantity of life over quality, unquestioningly implementing life-saving and extraordinary measures designed to save or prolong lives even when the outcome is not desirable. In some cases, doctors have ignored Do Not Resuscitate (DNR) orders or automatically moved to implement aggressive forms of end-of-life care that may not only be unwanted but actually create circumstances that are harmful for both the patient and their loved ones.

A big part of the heartache I experienced watching my mother’s decline was how long it felt like her life was extended far beyond her natural course of living. She was 78 when she died, but the last several years were patched together through a series of traumatic and painful medical interventions that — were she of clear mind through any of this — I don’t believe she would have wanted.

As a whole, the system failed her. Her doctors never communicated with one another, and she spent money she didn’t have for treatments she didn’t want because we were all caught in this cycle that was not designed with her humanity in mind.

All of us suffered.

In the end, as the wounds of this experience slowly heal and begin to change shape, what I am left with is this:

I see how my mother never gave up.

She left reams of writing, scattered across journals and notebooks and printed out pages, emails and half-formed essays, and paragraphs crafted in varying states of alertness.

I keep coming upon these, some painful and some uplifting. Her voice is always there, though.

My favorite is this quote I found from when I interviewed her back in 2017, the night before the removal of her colon cancer which she and I were both convinced would kill her.

I asked her what she would want us to know, to remember, after she was gone. This is what she had to say:

“I want you to always be proud of yourself. To love yourself. Be your own best friend. Be this person which is you, independent in this life. Spend time in solitude. And always be proud of yourself.”

That’s her legacy. That is the foundation of my philosophy in life and I owe it all to her, 100%. And I am grateful for it.

Against all odds, through all she endured, this was what was at her core. Mother-daughter relationships are complicated. But this much is exceedingly clear: I always loved her, even as I wished for her to die.

It’s important to me that you know that.