The familiar scent of her lavender sachet, usually a comfort, now clings to the air like a heavy cloak, catching in my throat. My mother’s gaze, momentarily fixed on the windowpane, drifts back to me. “He should be home soon,” she says, her voice a reedy whisper, a fragile echo of the woman I knew. “Your father. Don’t you think he’s running late? I hope he hasn’t forgotten dinner.”
He died five years ago. Fifty-eight months ago, to be exact. His favorite armchair sits empty, a silent sentinel in the corner of the living room, gathering dust motes that dance in the afternoon sun. And for the tenth time today, I perform the well-rehearsed choreography of a gentle lie, my own heart splintering into an additional 88 pieces with each syllable. “Not much longer, Mom,” I respond, the words tasting like ash. “He just had a few things to finish up.” She nods, a momentary peace settling on her face, before the question begins its slow, inexorable crawl back to her lips, ready to restart the cycle.
The Unseen Grief
This isn’t grief as the world understands it. This isn’t the clean, brutal cut of death, followed by eulogies, casseroles, and the slow, linear path of healing. This is a long goodbye, stretched across what feels like 888 endless days, a tormenting unraveling where the person you love is physically present but utterly, profoundly gone. Everyone, and I mean *everyone*, tells you to “cherish the moments.” They mean well, of course. They picture gentle strolls, shared laughter, perhaps a sweet reminiscence. They don’t picture the raw, disorienting pain of interacting with a stranger who wears your mother’s face, who shares her DNA, but whose mind has become an escape room with no exit strategy.
Claire J.-M. understood this particular hell better than most. She designs escape rooms, elaborate puzzles that demand logic, observation, and collaboration. With her own mother’s descent into dementia, Claire found herself trapped in a room she hadn’t designed, a puzzle that wasn’t meant to be solved. She’d spend hours trying to reorient her mother, to connect a fragment of memory to another, like trying to force puzzle pieces together that belonged to entirely different sets. “It’s like someone secretly replaced the rulebook in the middle of the game,” she’d confided, her voice hollow. “And every time I think I’ve found a hidden passage, it just leads to another blank wall. There’s no key, no code, just the relentless, quiet theft of who she was.”
The Absence of Ritual
The cultural scripts for grief simply do not account for this. We are given permission to mourn when there’s a body, a tombstone, a definitive end. We get comfort in rituals, in shared sorrow, in the societal recognition of loss. But what happens when the loss is ambiguous, an empty space where a vibrant personality once resided? There are no funeral rites for a living ghost. There are no condolence cards for the continuous heartbreak of witnessing a loved one’s essence slowly dissipate.
We are forced to mourn in silence, our grief unacknowledged, misunderstood, and often, actively suppressed by the well-meaning advice to “be strong” or “focus on the good days.” What if the good days are merely illusions, temporary reprieves from a reality that’s increasingly fragmented?
I remember one afternoon, I was trying to explain to my mother that her favorite rose bush, the one my father planted, had been pruned for the winter. She insisted it was dead, that I had killed it. I tried to show her the new buds, to explain the process, but she just grew angrier, her voice rising to a pitch I hadn’t heard in years. In that moment, trying to apply logic to an illogical situation felt like explaining quantum physics to a kitten. It was a mistake, an effort to fix something that couldn’t be fixed by reason. My error wasn’t in her misunderstanding; it was in my expectation that she *could* understand. It taught me that sometimes, the most loving thing you can do is not to correct, but to simply be present, even if that presence feels like a hollow echo chamber for your own sorrow.
The Sting of Platitudes
This is why the platitudes sting so fiercely. They negate the profound, disorienting pain. They demand a performance of gratitude for moments that are often tinged with profound sadness or frustration. It’s not that there aren’t fleeting moments of connection, sometimes. An unexpected smile, a hand squeeze that feels almost familiar, a flash of recognition that lasts for all of 88 seconds.
💎
✨
🌟
These are like tiny, precious diamonds scattered in a vast desert, dazzling and rare, but insufficient to quench the overwhelming thirst. And these moments, paradoxically, can be just as heartbreaking as the confusion, because they offer a glimpse of what’s been lost, a painful reminder of the chasm that has opened.
The Deafening Silence
The silence surrounding this type of grief is deafening. How do you explain to a friend that you’re mourning someone who is still sitting across from you at the dinner table? How do you articulate the exhaustion of constantly re-entering a fragmented reality, of trying to anchor a ship that has no rudder? It forces us into isolation, making us feel like anomalies for feeling what we feel. There’s no space for the anger, the guilt, the despair that often co-exist with a profound, undying love. This isn’t a journey for the faint of heart; it requires a deep well of resilience, patience, and often, external support.
It makes me think of Claire again, of her escape rooms. The best ones, she explained, aren’t just about finding keys. They’re about understanding the narrative, about connecting seemingly disparate clues, about working with limited information to reconstruct a coherent story. But with dementia, the story itself is being erased, word by word, chapter by chapter, leaving behind only jumbled sentences and forgotten characters. There is no coherent story left to find, only a desperate search for fragments.
Creating a New Script
We need to create a new script for this kind of grief. One that acknowledges the unrelenting pain, validates the frustration, and offers real support, not just hollow comforts. We need spaces where caregivers can speak honestly about the difficult truths, about the heartache of being forgotten, about the profound loneliness of watching a loved one disappear piece by piece. This isn’t about giving up hope; it’s about acknowledging the reality of a devastating disease and giving caregivers the permission to feel the full spectrum of their emotions without judgment.
Because in this long goodbye, the silence is often the heaviest burden of all. And sometimes, the truest act of love is finding a way to simply breathe, knowing that even without the finality of death, your heart is breaking, and that is a valid, profound form of mourning. The weight of all those unsaid goodbyes, of all those forgotten memories, settles not just on the loved one, but on the caregiver, whose love continues to endure, an unwavering light in an increasingly darkening room.