My mother called me by my sister’s name last month, then corrected herself, then called me by a name I didn’t recognize at all. She laughed about it. I laughed about it. We both kept eating the soup I’d brought over in a jar because she doesn’t cook anymore, and the moment passed the way these moments always pass, which is to say it landed somewhere inside my chest and never left.
She’s in her sixties. She’s alive. She lives in the same house where she used to check the locks three times before bed, where she baked bread from scratch because we couldn’t always afford the store-bought kind, where she tended a garden that fed us through months when money was thin. She’s there. She’s breathing. And I am grieving her.
Most people believe grief begins with death. The cultural script is clear: someone dies, you mourn, people bring casseroles, you wear black or you don’t, and eventually you emerge from the fog into some version of after. There are rituals. There are cards. There are entire industries built around the architecture of loss. But what happens when the person you’ve lost is still sitting in the room? What happens when the body is present but the person inside it has started to flicker, like a signal from a station that’s slowly going off the air?
There’s a psychological term for this. Pauline Boss, a researcher at the University of Minnesota, called it ambiguous loss, and she spent decades studying it. The concept describes a grief that occurs when someone is physically present but psychologically absent, or vice versa. Her research has been applied with devastating precision to the adult children of parents with cognitive decline. The loss is real. The grief is real. But the person hasn’t died, so nobody sends flowers.
The Cruelty of the Present Tense
Grief for the dead, at least, has a grammar. Past tense. She was. She used to. We had. The language itself creates a container, and inside that container, mourning can begin to organize itself. But when your parent is still alive and fading, the tenses collapse. She is and she was exist in the same sentence. She’s right there and she’s gone operate simultaneously. You walk into a room and see your mother’s face, hear her voice, smell the lavender lotion she’s used for thirty years, and for a moment everything is intact. Then she asks you who Ellie is.
Ellie is her granddaughter. Ellie is five. Ellie drew her a picture of a cat last week that is currently taped to the refrigerator six inches from where my mother is standing.
You answer the question calmly. You redirect. You’ve read the pamphlets. You don’t correct, you don’t quiz, you don’t collapse. You do all of this while a small, specific part of you is screaming.
I’ve been thinking about this for a while now. My therapist would probably say longer than I realize. The grief doesn’t arrive all at once. It accumulates in thin layers, like sediment. Each visit deposits another film of loss over the relationship you thought you’d have with your parents in their later years. The relationship where you’d finally be adults together. Where the power dynamics might soften. Where your mother might tell you stories from before you were born, filling in the gaps of who she was before she became your mother.
That relationship exists in a future that is closing.
No Insurance Code for This
The particular cruelty of ambiguous grief is that it has no social infrastructure. When someone dies, the community responds. Time off work is expected. Sympathy is automatic. But when your parent is alive and declining, you are expected to keep functioning. You drop your kids at school. You go to the farmers market. You make bone broth on Sunday because the routine holds you together. And when someone asks how your parents are doing, you say fine, because the truth requires forty-five minutes and a level of emotional vulnerability that the produce aisle does not accommodate.
I’ve written before about the loneliness of being so competent that people forget you’re a person. This grief lives in the same territory. You manage it. You handle it. You become the person who coordinates the doctor’s appointments, who researches memory care options, who talks to your parent in a steady, cheerful voice while your insides liquefy. And because you’re managing it, everyone assumes you’re fine.
Fine is the most dangerous word in the English language.
The world doesn’t know what to do with you. Bereavement leave doesn’t apply. Support groups for dementia caregivers exist, but they tend to focus on practical logistics: medications, wandering risks, power of attorney. The emotional reality of watching your parent look at you with friendly confusion, the way they might look at a pleasant stranger, gets compressed into passing mentions. A side effect. A footnote to the real problem of disease management.
What You’re Actually Mourning
When I try to explain this to people, I keep reaching for the wrong words. I’m not mourning my mother. My mother is alive. I am mourning my mother’s memory of me. I am mourning the version of myself that existed inside her mind, the Allison she carried around in her thoughts, the one she worried about and felt proud of and sometimes still treated like a ten-year-old. That version of me, the one that lived in her consciousness, is disappearing. And when it goes, something about my own history goes with it.
Because here is the thing nobody prepares you for: your parents are the primary witnesses to your childhood. They are the people who can confirm that you were real at seven, at twelve, at sixteen. They hold the context for why you are the way you are. When their memory erodes, it takes with it an irreplaceable archive. Not just of facts and dates, but of the felt experience of your family. The inside jokes. The shorthand. The way your father used to come home from work with his boots heavy on the porch, and your mother would change her expression before opening the door.
My father worked the same job for decades. Long hours, steady presence, the kind of reliability that meant we always knew where he was, even if he wasn’t always here in the way we needed. He’s retired now. He and my mother are both in their sixties, and I watch them both navigating this new terrain, my father trying to understand why the woman he married for her sharpness sometimes repeats the same question three times in ten minutes.
He doesn’t call it grief either. He calls it Tuesday.
The Children Who Were Already Practiced at This
I grew up as the middle child. The one adults called mature, responsible, helpful. Translation: the one who learned to read emotional weather and adjust accordingly. The one who made herself small enough to not add weight to a household already heavy with my mother’s anxiety, my father’s absence, the electricity bill arriving like a threat.
I spent my twenties in therapy learning to identify my own emotions, because I’d spent so long tracking everyone else’s that mine had become background noise. And now that training, that hyper-awareness of other people’s states, has become the instrument through which I register every fluctuation in my mother’s cognition. I catch the micro-hesitations, the moment her eyes go slightly unfocused before she recovers, the way she overcompensates with brightness when she’s lost the thread of a conversation.
I notice everything. I wish I could stop.
The adult children who handle this the worst, paradoxically, are often the ones who were best at handling things as children. The responsible ones. The readers of rooms. The ones who managed other people’s emotional needs so seamlessly that no one ever thought to check on theirs. Because we’ve been doing a version of this work our whole lives: monitoring a parent’s inner state, adjusting our behavior to accommodate their reality, absorbing the dissonance between what’s spoken and what’s felt.
Cognitive decline just formalizes a dynamic that was already in place.
What the Living Want
Ellie asked me last week why Grandma calls her different names. I told her Grandma’s brain gets a little mixed up sometimes, like when you can’t remember where you put your shoe. Ellie accepted this with the terrifying ease of childhood, suggesting she had another shoe anyway, and went back to drawing.
I stood at the kitchen sink and cried so quietly that Matt didn’t hear me from the next room.
The research on ambiguous grief suggests that what makes it so psychologically corrosive is the absence of closure. The loss doesn’t complete. There is no funeral to mark the transition from before to after. The person you’re losing is still here, still asking for toast, still occasionally surfacing with a memory so sharp and specific it gives you whiplash. My mother remembered the name of our childhood dog last week. She said it with perfect clarity and then couldn’t remember the word for refrigerator.
These moments of lucidity are gifts. They are also the cruelest thing that can happen to you, because they resurrect hope that was already learning to lie down.
I keep thinking about what it means to age without bitterness, and whether it requires a kind of acceptance that I haven’t yet earned. Whether I can hold both realities simultaneously: my mother is here, and my mother is leaving. Whether the love changes shape without changing substance. Whether grief can coexist with gratitude without one consuming the other.
The Language We Don’t Have
English gives us “orphan” for a child who loses both parents. We have “widow” and “widower” for spouses. We have no word for an adult child whose parent is alive but no longer knows them. No noun. No identity. No cultural role to step into when the loss begins.
And so we improvise. We call it “hard.” We call it “a lot.” We resort to euphemisms like saying someone is having good days and bad days, as if this explains the oceanic sadness of watching your mother look at a photograph of your wedding and ask who the people are.
I taught kindergarten for seven years before I started writing, and one of the things I learned from five-year-olds is that children grieve openly, loudly, and with their entire bodies. They don’t contain it. They don’t manage it. When something is lost, they wail, and the wailing is the processing. Adults have learned to fold their grief into manageable shapes that fit inside a workday, a dinner party, a phone call with a sibling where you both say “I know” over and over because there’s nothing else to say.
I don’t want to fold it anymore.
Last month, I brought Milo to visit my mother. She held him with the kind of automatic tenderness that lives in the body even when the mind is somewhere else. She hummed a song I recognized from my own childhood, something tuneless and sweet, and I realized the melody had survived even as the words had gone. The music was older than language. It lived in a part of her that the disease hadn’t reached yet.
I held onto that moment the way you hold onto a rope in moving water.
My mother is alive. She is in the room. She smells like lavender and bread dough and the particular version of clean that belongs to women who grew up making everything from scratch. She is the person who taught me that a garden isn’t a hobby when you’re poor, that checking the locks three times means you love your family so much you can’t stop protecting them, that being helpful is the safest way to be loved.
She taught me everything I know about paying attention to other people. And now she’s the reason I understand that paying attention is also a form of grief.
There should be a word for this. A word that holds the weight of a mother who is still breathing, still warm, still capable of humming a lullaby from muscle memory while her daughter sits beside her, fully present, mourning as quietly as she can. A word that says: I am losing someone who has not left. I am grieving someone who is still here. And I don’t know how to do this, because nobody taught me, because our culture built all its rituals around the ones who go, and forgot entirely about the ones who stay and fade.
Until that word exists, I’ll keep bringing soup to her house on Sundays. I’ll keep telling Ellie that Grandma’s brain gets mixed up sometimes. I’ll keep standing at the kitchen sink. And I’ll keep paying attention, because that’s the only language I have, and she’s the one who gave it to me.
