What is Anticipatory Grief ? Why Losing someone who is still here feels so hard

When we think about grief, we often associate it with something that has already happened—a death, a loss, an ending. But grief doesn’t always arrive at the very end. Sometimes, it begins much earlier.

This is what we call anticipatory grief.

Anticipatory grief is the emotional experience of mourning a loss that has not yet fully occurred but is expected. It can arise when someone is living with a life-limiting illness such as dementia, cancer, or another progressive condition. It is the quiet, often unspoken grief that lives in the “in-between stages" — between what once was, what is now happening, and what is yet to come.

It can show up as sadness, fear, anger, guilt, or even numbness. It can come and go in waves. It can pop up at unexpected times. And importantly, it is experienced not only by loved ones and caregivers, but also by the person living with the diagnosis themselves.

Anticipatory Grief in Dementia: A Gradual Goodbye

Dementia brings with it a unique and complex form of grief.

For families and caregivers, there can be a sense of “losing” the person in stages. You may notice changes in memory, personality, communication, or connection. Each shift can feel like a small goodbye. Over time, these moments accumulate, and the grief can feel ongoing, layered, and at times, exhausting.

For the person living with dementia—particularly in the earlier stages—there can also be an awareness of what lies ahead. They may be grieving the anticipated loss of independence, identity, or future they imagined. They may be wondering what their life will look like, how relationships may change, or how they will be cared for.

This dual experience—where both the person and their loved ones are grieving, albeit in different ways and at different times—can feel incredibly isolating and scary. And yet, it is a deeply human and normal response to navigating change and the unknown.

When Grief Begins Before Death

Anticipatory grief is a common experience for any individual with a life limiting or terminal illness, along with their family members and friends. One of the most difficult parts of anticipatory grief is that it quietly pulls us out of the present moment and catapaults us into the future.

We can find ourselves living in the “what ifs,” imagining future losses, or bracing for what’s to come, perhaps thinking this will lessen our pain when the actual loss occurs. We may begin to understandably withdraw, protect ourselves, or feel as though the story is already ending.

But even in the presence of a life-limiting illness, we need to remember that life is still happening now. And I know only too well, how hard this can be on certain days when you can feel your grief sitting high in your throat like a painful lump.

It is at these times we need to breathe deeply, still ourselves, and refocus. We need to remind ourselves -

There are still conversations to be had.

Moments of connection to share.

Meaning to be made.

Relationships to be repaired or strengthened.

Love to be expressed.

Anticipatory grief does not mean we have to begin “letting go” of the person before they are gone. Instead, it can be an invitation—however difficult and confronting—to lean into what matters most, while there is time.

Finding Agency Amid Uncertainty

While illness may erode some of our control, it does not remove all choice.

For individuals living with dementia or other terminal conditions, there can still be meaningful opportunities to:

• Express wishes and preferences for future care

• Have important conversations with loved ones

• Reflect on values, legacy, and what matters most

• Create moments of connection and meaning in the present

  
  

For families and caregivers, seeking grief and loss support, it may mean:

• Choosing presence over perfection

• Allowing space for both grief and joy

• Seeking support when the weight feels too heavy to carry alone

These choices may seem small, but they can be deeply empowering.

You Don’t Have to Navigate This Alone

If you or someone you love is living with dementia or another life-limiting illness, anticipatory grief can feel overwhelming, but it does not have to be faced alone.

At Ground Zero Counselling, we offer compassionate grief and loss support, dementia and end of life support for people and their loved ones navigating challenging life transitions and stay connected to what matters most.

Despite uncertainty, there is always room for living.