When we think about grief, we often think about what happens after someone dies. We imagine it beginning with a funeral, a condolence card, or an empty chair at the table. But grief often starts much earlier.
Many people experience powerful feelings of sadness, fear, anger, exhaustion or longing long before a death occurs. This experience is known as anticipatory grief. If you’ve ever found yourself grieving while someone is still alive, you’re not alone. Anticipatory grief is a natural response to knowing that a significant loss is approaching.
Understanding anticipatory grief
Experience shows that anticipatory grief can have two faces: one when we realise that the future we were working towards is no longer possible. For example, when a parent realises they will not get to see their children grow, graduate, marry or have children.
The second face of anticipatory grief emerges when we realise and begin to grieve a future we did not consciously choose, but which is now approaching. This might include the anticipated loss of life, changes to our wellbeing, leaving family behind, or the loss of independence.
Anticipatory grief is the grief we experience when we become aware of an expected loss or a future that is different from the one we had imagined. It commonly occurs when someone we care about is living with a life-limiting illness, advanced age, dementia, or a condition that is gradually changing their abilities and independence. Unlike grief after a death, anticipatory grief can feel confusing, and people often tell themselves:
- “I shouldn’t be grieving yet.”
- “They’re still here.”
- “I need to stay strong.”
- “I feel guilty for feeling sad.”
Yet grief does not wait for a death certificate. When we begin losing the future we imagined, the life we expected, or aspects of a relationship that matter deeply to us, grief naturally follows.
The many losses before the loss
One reason anticipatory grief can feel so overwhelming is that it is rarely about a single event. Instead, it often involves many losses unfolding over time. You may be grieving:
- the loss of shared plans
- the loss of independence
- the loss of health and wellbeing
- the loss of relationships and future plans
- the loss of familiar routines
- the loss of conversations you once had
- the loss of physical abilities
- the loss of roles within a family
- the loss of certainty about the future
For people supporting someone with dementia, these losses can be particularly complex. The person is still alive, yet the relationship may be changing in profound ways, and there can be many moments of adjustment and sadness as familiar aspects of the person become harder to access. Losses with dementia can include those mentioned above as well as behavioural, emotional, mental changes. These losses can also be incremental which adds its own complexity creating ongoing, deepening, layered grief. Each change can bring a fresh wave of grief.
The loneliness of anticipatory grief
Anticipatory grief is often invisible. Friends, colleagues and even family members may not recognise what you are experiencing because the person is still alive. You may find yourself caught between two worlds: on one hand, still providing care, attending appointments, advocating and showing up each day, and on the other, already grieving.
This can create a sense of isolation. You may feel unable to fully express your grief because others expect you to focus on practical tasks or remain optimistic. Yet both realities can exist at once: you can be hopeful and grieving, caring and grieving, grateful and grieving. These experiences are not contradictory. They are part of being human.
Grieving the future
One of the most painful aspects of anticipatory grief is grieving things that have not happened or will no longer happen: birthdays that won’t be celebrated together, future holidays, retirement plans, family milestones, conversations that will never take place. The future you imagined may begin to look very different from the future that is unfolding, and this can bring a deep sense of sadness, even while precious moments are still being shared in the present.
Anticipatory grief and guilt
Many people experiencing anticipatory grief also experience guilt. They worry that feeling sad means they are giving up or feel guilty for imagining life after the person’s death, for feeling exhausted, or for needing time away from caregiving. Some even feel guilty for wishing the uncertainty would end.
These feelings are common, and none of them mean you love or care about the person any less. In fact, anticipatory grief often reflects the depth of a relationship and the significance of what is being lost. The sadness exists because the connection matters.
The importance of talking about it
One of the challenges of anticipatory grief is that many people try to carry it alone. They don’t want to burden others, worry about upsetting the person who is living with an illness or diagnosis or advancing in age. They may believe they should be coping better. Yet grief often becomes more manageable when it is acknowledged, and talking with trusted friends, family members, counsellors, support groups, spiritual care practitioners, end of life doulas or healthcare professionals can help people feel less isolated.
You do not need to wait until after a death to seek support. Lifeline, Beyond Blue, NALAG Grief Support, and Griefline in Australia and Lifeline in Aotearoa New Zealand offer support for anyone experiencing grief, loss or trauma.
Finding moments of joy
Many people are surprised to discover that grief and joy can coexist. Even during difficult periods, there may be moments of laughter, connection, gratitude, tenderness or peace. Some people feel guilty when these moments arise, wondering whether they are taking the situation seriously enough.
Joy is not a betrayal of grief. It can provide nourishment during a challenging time, remind us why the relationship matters, and help sustain us through the difficult days.
Preparing while living
Anticipatory grief can also create opportunities. Difficult as it may be, knowing that time may be limited can encourage important conversations and meaningful moments. People often use this time to:
- share stories and memories
- express love and appreciation
- resolve old tensions
- record family history
- create legacy projects
- discuss wishes and preferences
- spend time together intentionally
None of these actions remove grief, but they can help people feel more connected and less burdened by regret later.
There is no right way to grieve
Every person’s experience of anticipatory grief is different. Some feel sadness long before a death occurs, while others remain focused on caregiving and practical tasks until much later. Some experience waves of grief that come and go, while others feel numb, overwhelmed, angry, frightened or exhausted.
There is no correct timeline, and no perfect way to do this. What matters is allowing yourself to acknowledge what is happening and seeking support when you need it.
As individual as we are in our lives, we are in our grief. There is no ‘right’ way – there is ‘your’ way.
Grief before the loss is still grief
One of the most important things to remember about anticipatory grief is that it is real grief. You do not have to wait for a death before your feelings are valid. When we love or care for someone, we begin adapting to loss long before they are gone, grieving the changes, the uncertainties, and the future we thought we would have.
And while anticipatory grief can be painful, it can also reflect something beautiful: the depth of our connection, the importance of the relationship, and the love that remains present through it all.