Writings from April to June, 2025
[Nine of Swords from Tarot of Mystical Moments by Catrin Welz-Stein]
My mom died six months ago, right before Christmas of 2024.
And I have a confession.
But first, allow me to state a few things before I share my admission. I want and need to, so you have a sense of how things came to pass and what it was like.
What it was like, sadly, was a long, lingering end brought on by dementia—a fate, if I may be melodramatically idiomatic, I would not wish on my worst enemy. And before that was a steady, six-year decline that decimated every aspect of her cognition as well as her physical and her mental health. It was also a state of affairs that ground our lives into a surreal, pandemic-fueled, twilight zone of isolation, lost memory, and fading abilities.
To say that my mother’s dementia, decline, and death also impacted every aspect of my mind, health, and happiness would be fair.
There seems to be some confusion, even among her providers, about what type of dementia my mother suffered from. Alzheimer’s? Vascular? Lewy body? All these diagnoses were bandied about in the last years of her life. The distinction, or at least the diagnostic codes in her chart, did ultimately impact the care timeline and her access to hospice, but generally speaking, as far as I was concerned, not much else. Dementia is dementia is dementia, and it’s all fucking awful.
***
In the spring of 2018, we did not have one of those labels, but it was still clear, beyond any shadow of a doubt, that what was happening to my mother went well beyond “normal age-related cognitive decline.”
My stars were aligning… I was laid off from my job of 23 years, had split with my ex, and the kid was bound for kindergarten. I moved back to my childhood home, took over the management of the household, and became my mother’s primary caregiver. I remained so until the end. 6 long years.
Let me be clear: caregiving for a person with dementia is different from caring for someone with other disabilities or even another kind of terminal illness. The death of someone’s mind is something no one is prepared to witness, and we are all depressingly ill-equipped to cope with.
In Travelers to Unimaginable Lands, Dasha Kiper writes about how our innate cognitive bias makes us incapable of fully believing and adjusting to a loved one’s cognitive decline. She explores the caregiver’s brain’s staunch refusal to accept certain fundamental truths about the situation and their loved one’s own brain and personality as it is destroyed by dementia. This inability can cause bewildering suffering for the caregiver.
On the surface, we understand what is happening and how our loved one is changing, or at least we claim to, but underneath is a current of denial and refusal that cannot, for all our efforts, be consciously dismissed. We know things about what is happening, but that knowledge does not help us feel differently and thus does not help us act in ways that would be most helpful and healing for ourselves or our loved ones.
If you have any inclination to care for a partner or an aging parent with dementia, I recommend that you read Kiper’s book before you do. I wish I had read it before I took on the role. Not that I could have changed the way my human brain was wired to think and understand what was happening to my mother, but perhaps I could have met myself with more grace and kindness as I began to experience how the impossible nature of the situation was impacting me.
***
Six years. Things could have gone so many ways. There was always the possibility that she would die suddenly—a heart attack, stroke, COVID, a fall down the stairs, anvil out of the sky… Anything. But in the end, it was the heart-wrenching slog through hospice: four months of around-the-clock care, aides, nurses, volunteers, chaplains, social workers, diapers, chucks, bed baths, spoon-feedings, and on and on.
When hospice began, I noticed the unsolicited advice from people in my family and community shifted from kind, encouraging calls to mind my self-care to stark warnings about preparing for the inevitable. Statements vaguely suggesting or pointedly insisting that one’s world is inexorably altered with the death of a parent, especially one’s mother.
I was informed on more than one occasion that a person’s life is divided into two parts: before their mother dies and after. I was warned that grief would consume me in ways that I couldn’t prepare myself for. I was told that there was a part of me that would never be the same. The dire prognostications came thick and fast.
Part of me imagined this could all be true. I was, of course, familiar with the similar unintentionally unheeded warnings around pregnancy, birth, and parenting a newborn. Warnings that, though my ears heard the words, my heart and mind remained somehow oblivious to. There are things in life that cannot be accepted without the perspective of experience; realities that must be experienced to fully grasp. I get it.
Like the deprivations of the fourth trimester or that biased denial baked into dealing with dementia, I can acknowledge that grief must be lived to be believed.
***
My mother’s final months in hospice were, unsurprisingly, the most difficult stretch of caregiving yet, and arguably the four hardest months of my life. Not because I was emotionally preparing for my mother’s death, but because tending to the bodily necessities of someone who is slowly wasting away—as well as my own emotional needs is, frankly, enough. There was absolutely no room for planned or spontaneous grief—anticipatory or otherwise. At least not for me. Even if my responsibilities had been fewer, my needs met, and if I had increased bandwidth to manage more feelings, I don’t believe things would have been much different.
When she finally passed, a new chorus of kind, well-meaning voices reiterated many stories about what mourning a mother looks like. Some reasserted the non-linear process of grieving. Others warned me of unexpected transformation and profound longing. I braced for it—but it never came.
This is the first time I have publicly admitted to something that has been troubling me. Here is my confession: I am not grieving my mother’s death.
If I were worried about the impact that statement might have on your opinion of me, I might quickly add that seeing the end of her suffering was enough to mitigate my grief. Or I might try to explain that the end of hospice and the grueling work of caring for her brought such a complete sense of relief that there was no room to feel anything else. These things were indeed true. I did experience waves of intense relief for both her and me after she left us.
I might expound eloquently on all that and avoid sharing the deeper truth that hurts my heart more than most. Here, I’ll say it again so we are clear:
I am not mourning my mother’s death. But I am feeling something…
A hot flush of shame when I remember that my mother is gone, and I am not grieving the way the world expects.
A wicked envy that swallows up my heart when I hear people speak of the great sadness they experienced when their mothers passed.
A brokenness that has been part of me for as long as I can remember.
***
Folks have many incorrect assumptions about what my grief looks like, how wild and vast it must be, or that I have been forever changed by the loss of my mother. I don’t always correct that last assumption because it is true. I was forever changed by the loss of my mother. But here is the god’s honest truth: I lost my mother when I was a child.
Due to what I can only assume was a staggering confluence of inherited and generational trauma, birth order, nature and nurture, unexamined and masked neurodivergence, and just plain shitty circumstances, I never formed an attachment to my mother.
In fact, I resolutely rejected any attachment to her.
When my young mind was forming and learning, I intuited that my mother (and my father, but that’s a different essay) was not safe to rely on or allow myself to love. At some point, before I had memories, before words even, I determined that I would rather hide from her and any affection she might offer to keep myself safe.
This was not because of any overtly cruel or violent behavior from her (never mind the spanking). She was not a mean or malicious person–not by a long shot. My mother was well-loved by many, many people in our extended family and community. People thought she was wonderful.
Confoundingly, those who knew and cared about her have made some of the most erroneous assumptions about what she left behind and how I am grieving.
I think my deeply avoidant/disorganized attachment is related to the sad reality of what she was incapable of offering—because she was, like me, so fundamentally wounded by her own traumatic upbringing—with the loss of her own mother at the age of four and the subsequent abandonment by her father. Rugged stuff.
Moreover, in the time immediately before my birth, she was grieving the loss of her first son, a newborn who never came home from the hospital. By the time I arrived, I imagine her firmly overwrought by her own grief and caring for her two existing children while rigidly tending to the needs of an emotionally abusive husband. It’s no wonder she couldn’t meet my needs. I felt rejected by her, and my young mind and nervous system, in turn and quite automatically, rejected her.
Smart strategy, right? If I did not leave myself open to further pain or emotional abandonment, then how could I be hurt or rejected again?
***
I know I am not the only person in the world with attachment trauma, but I have spent so much time thinking of myself and the lack of maternal love in my heart as aberrant. So, I worry you might read these words and judge me, or worse, not believe me.
I imagine you could consider what I’ve said, and the very nature of the love that you shared with your mother might preclude your understanding of how real and injurious this early loss was, and how it derailed the course of my life.
Please don’t think I am being hyperbolic. I have lived with grief. I have experienced chronic pain since I was five years old. I have struggled with depression, anxiety, low self-esteem, and toxic shame since I was an adolescent. I cut and burned myself. I fantasized endlessly about how to end my life. I’ve bottled up so much fear and self-loathing that it flavors everything I do, feel, and say. I’ve self-medicated with food, drugs, and alcohol for almost my entire adult life. And even after decades of therapy and hard fucking work, I still entered my 40s playing host to one of the most damning self-critics I can imagine. Some of you might know exactly what I am talking about. Some of you may find this all too hard to believe.
Let me assure you, this kind of wounding and its impact are quite real. In her book Mother Hunger, Kelly McDaniel outlines the life-altering damage this type of attachment injury can impart. McDaniel argues there is literally no part of a daughter that is not warped and stunted by this “hunger” for the nurturance, protection, and guidance assured in a secure attachment with one’s mother. Furthermore, it’s generally acknowledged that chronic pain syndromes like migraine and fibromyalgia, as well as gastrointestinal conditions like IBS–all of which I have been diagnosed with—are linked to childhood trauma. How very textbook of me.
In all these senses, perhaps it’s true that my life can be bisected into two—before I lost my mother and after. I just happened to have stumbled around the vast majority of my years after a slow-moving, hidden calamity.
***
The term “ambiguous loss” was coined by Dr. Pauline Boss to describe a type of loss that occurs without clear understanding or a likelihood of emotional closure, like attachment injury caused by rejection between mother and child, or, likewise, the slow decline of a person with dementia.
I’ve lost my mother twice. I have no explicit memories of my childhood loss, only implicit memory buried in my body, expressed as fear and pain. And even as dementia stole her away, I don’t have a clear understanding of when she was finally taken. At the moment of her physical death? When she became nonverbal? When she stopped recognizing us? Who can say?
***
Mother’s Day has come and gone.
Many kind souls reached out that day to extend love and care, specifically citing my mother‘s passing and assuming I must be feeling a certain way. When the first message arrived, I was disconcerted by the shame that surfaced. It hadn’t even occurred to me that I should feel a certain way just because it was Mother’s Day and my mother was gone. It hadn’t even crossed my mind. Her February birthday didn’t register either.
***
Platitudes like “Grief only exists where love lived first” make me wanna growl with displeasure.
Really? Is that always true? The jealousy I feel when a person emotes about the love they share with their mother (or father) eats away at me in a deeply toxic manner. It also doesn’t hold up to much reasonable scrutiny. When I consider the enormity of what they must feel when their beloved parents dies, my envy is replaced with relief—relief that I will never have to face such pain. But then the jealousy returns.
How do I mourn something I never had? When I allow myself to soften around this, I realize that grief, no matter how or when you lose your mother, is just filling a hole where love should be. It doesn’t matter whether the love was ever there to begin with. I’m sure that feeling active, engaged love being stripped away when your mother dies is unbearably painful. Beyond words. Of course it is. But so is the pain of feeling nothing stripped away when she dies. It’s awful and it’s unjust. And what, if not the pain of grief, have I been experiencing all these years?
***
I recently read about the concept of disenfranchised grief—a form of mourning that, due to societal or familial pressure, cannot be openly shared or expressed. There’s no validation, no public ritual, no collective mourning. This kind of hidden grief can lead to profound isolation, difficulty processing emotions, and trouble finding closure.
Ambiguous loss. Disenfranchised grief.
I’d give my eye teeth for something straightforward and clean, something that made sense, so I could feel in the ways others, and our culture, seem to expect me to. The way I wish I could.
Sometimes, I imagine there’s a fixed allotment of pain that everyone is destined to feel over the loss of their mother. For some, it’s a hurricane of sorrow after losing a beloved parent. For others, it’s the slow, steady drip of shame and despair from a life devoid of their love—or love for them.
Neither is easier. Neither is harder. Both are awful. The shape of the grief may differ, but not its impact, and either way, you spend the rest of your days trying to rebuild what was ripped away with their loss.
***
My mother did her best. She loved me in her own way. I know that.
I owe her a debt of gratitude: for my life, the roof over my head, my intense and fruitful love of nature, my excellent cooking skills, and more. Most importantly, she served as a model of what it means to be a decent, conscientious human being. I must also acknowledge that the suffering of my childhood passed through our generations, linked by a heavy chain forged by the trauma she endured in hers. We both suffered, and arguably, she had a demonstrably harder time than I.
But none of this changes the way my heart aches, nor does it soothe the burn of a lifetime of sadness and pain. She was lost to me. And in losing her, I lost the person I was meant to be. It wasn’t entirely her fault, nor was she blameless. I will spend the rest of my days trying to find my way back to myself—and to prove to myself that I am safe, that I am loved, and that I am not alone.
I’m grateful for the work I did—and for the struggle of caring for her as she slowly transitioned from this world—because it illuminated so much of what was broken in me and in our relationship. Once I truly see something, once I get my teeth in it, I work to accept and heal it to the fullest extent possible. It’s what I do. And without the recognition and processing of this lifelong grief, I wouldn’t have any real chance at healing.
I began writing this hoping that it might make me feel better. That if I were transparent about the disconnect I felt at the time of my mother’s death and if I acknowledged the quiet, relentless grief that has been with me for so long, something might shift. Perhaps I can take some of this disenfranchised grief and sanitize it with sunlight.
If nothing else, I’ve come to understand that some closure doesn’t look like grace or peace. Sometimes, it just looks like telling the truth. I’m going to keep looking to that truth, and loving myself as fiercely as I can manage.
Friends, if grief is a hole where love should be, then maybe healing is learning to live honestly and gently beside that emptiness.
That, I can do.