Op-Ed: We Don’t Move On From Grief; Rather, We Move With It

This is the quiet and pervasive Grief of long-term caregivers: cumulative, anticipatory, continually evolving. It does not conform to stages. It does not fade on schedule. And it does not, contrary to what people like to say, always make us stronger.

We Begin Grieving Long Before Death

Grief for caregivers often begins at diagnosis—and sometimes even earlier, when subtle changes begin to surface and a quiet dread settles in. A missed appointment, a repeated question, a moment of disorientation in a familiar place. Something shifts in your loved one’s eyes, and you realize that life as you knew it is slipping away.

This first Grief isn’t marked by rituals or gatherings. It comes with MRI scans, clinical terms, and an avalanche of information about disease progression, legal paperwork, and care plans. We don’t cry over a body; we mourn the future that’s been stolen from us—one we thought we had more time to enjoy.

From this moment on, Grief becomes our traveling companion. It rides alongside us through years of caregiving. It whispers at night and yells on the bad days. It cannot be outrun; it can only be acknowledged.

The False Promise of “Five Stages”

We’ve done ourselves a disservice by reducing Grief to the tidy architecture of denial, anger, bargaining, depression, and acceptance. While well-intentioned, this model misleads us into believing Grief is linear, predictable, and resolvable.

In the world of long-term illness, Grief is recursive. It loops and recurs. A spouse may feel a sense of peace one week, only to plunge back into despair when their partner forgets an anniversary. A daughter might accept her mother’s condition—until she’s forced to decide whether to continue aggressive treatment.

This kind of Grief is not a staircase but a tide. It is more like weather than architecture—uncontrollable, shifting, cyclical. The best we can do is learn to move with the storm, knowing even the calm skies are temporary.

Invisible Losses, Unspoken Sorrows

Caring for a loved one with a terminal illness is profound emotional labor. Yet much of what we endure is invisible. There is no sympathy card for the moment your partner of forty years looks at you like a stranger. No moment of silence for the day your father becomes incontinent. No community vigil for the months you spend battling insurance companies, organizing pill trays, or making decisions about feeding tubes and resuscitation orders.

These are the private heartbreaks—moments that tear at the soul yet go unacknowledged because they do not involve death in the traditional sense. We carry these losses silently, grieving someone who is still technically alive.

This tension—loving someone who is still here while mourning the parts of them that are already gone—is one of the most painful and disorienting aspects of caregiving. It is the Grief of ambiguity. It has no script, no ceremony, and too often, no support.

Death Is Not the End of Grief

When death finally comes, it rarely delivers the closure we’re told to expect. Some caregivers are left with guilt—haunted by questions about whether we did enough, waited too long, or gave up too soon. Others are swallowed by disorientation. After structuring your life around another person’s needs for so long, you are suddenly left with silence, space, and time. It feels less like relief and more like freefall.

People like to say “time heals all wounds,” but this kind of Grief isn’t a wound. It’s a transformation. We don’t “get over it.” We absorb it. We integrate it. It becomes part of our story, our psychology, our very identity.

Sometimes, that transformation makes us softer—more patient, more compassionate. Other times, it leaves us brittle, hollowed out. And often, it does both, in some paradoxical and inexplicable way.

The Need for a New Narrative

As a society, we must stop offering hollow platitudes to caregivers and start offering something more honest: validation, space, and understanding.

Caregiving grief is not just anticipatory—it is cumulative. Each small decline is a death in its own right. Each major milestone—losing the ability to walk, speak, or swallow—demands a new kind of mourning.

We need to give caregivers permission to grieve while they are still caregiving—not just after the final goodbye. We must stop equating silence with strength and suffering with virtue.

We need more than pamphlets and support groups. We need policies that grant caregivers protected leave. We need affordable, accessible respite care. We need mental health professionals trained in ambiguous loss. We need public narratives that reflect the emotional reality of long-term care.

Grief as a Mirror

Ultimately, caregiving grief is a mirror. It reflects the depth of our love, the weight of our loyalty, and the quiet cost of our commitment. It doesn’t ask for pity—but it demands acknowledgment.

It asks that we stop pretending Grief is an isolated event or a personal failing. It asks us to understand that, for many, Grief is a lifelong companion—one that walks beside us not because we are broken, but because we chose to love someone through the long, slow process of disappearing.

If we can begin to speak honestly about this kind of Grief—not to fix it, but simply to name it—perhaps we can offer caregivers not just sympathy, but solidarity. And maybe then, those of us who carry this Grief can begin to find meaning—not through moving on, but through moving with.

To all the caregivers reading this: my heart is with you. You are seen, and you are not alone.