Anticipatory Loss: Understanding Grief Before Goodbye

Anticipatory grief is the experience of grieving while someone you love is still alive.

It can begin when a loved one receives a terminal diagnosis, develops a progressive illness such as dementia, or experiences a significant decline that changes the relationship you once knew. It can also emerge as families face major transitions associated with serious illness, caregiving, or the possibility of death.

What Is Anticipatory Grief?

The term anticipatory grief has been used for decades, but researchers have found that there is not one universally accepted definition. A 2022 systematic review examined 134 studies of grief experienced by family members before the death of someone with a life-limiting illness. The researchers found considerable variation in how anticipatory grief was defined and described.

They suggested that it can be helpful to distinguish between grief about the future and grief about losses that are already happening. Someone may feel anxiety and sadness about eventually losing a loved one while also grieving changes that have already occurred because of the illness. These changes might involve personality, abilities, independence, communication, family roles, or the relationship itself (Nielsen et al., 2022).

This distinction matters because grief does not necessarily begin on the day someone dies. Sometimes it begins with the first major change. A diagnosis can alter the way you imagine the future. A decline in memory can change a familiar relationship. A change in someone's abilities can shift family roles. Suddenly, the future you had assumed was waiting for you may look very different.

Grieving Someone Who Is Still Here

One of the most confusing parts of anticipatory grief is the feeling that you are grieving someone who is still alive.

You may look at your loved one and feel enormous love and gratitude. At the same time, you may feel profound sadness for what has changed. A parent with dementia may still be sitting beside you, but the relationship may no longer feel the same. A partner receiving end-of-life care may still be physically present, but the future you once imagined together may no longer be possible.

You may be grieving the loss of independence, shared activities, communication, intimacy, or familiar family roles. Research involving family caregivers has described anticipatory grief as involving both emotional distress and personal and relational losses. Hope, ambivalence, and the process of adapting to changing roles can all exist alongside one another (Coelho et al., 2018).

This can make anticipatory grief particularly difficult to understand. There may be no clear moment when one thing ends and another begins. You are still caring for the person you love while simultaneously adjusting to the ways in which illness is changing your relationship.

You May Feel More Than One Emotion at Once

Grief does not always look like sadness.

You might feel heartbroken one moment and strangely peaceful the next. You may feel frightened about what is coming, angry about the illness or circumstances, or guilty because part of you is exhausted by caregiving. You may experience relief when your loved one has a good day, or even relief when you imagine that their suffering will eventually end.

None of these feelings automatically means that you love the person any less.

Ambivalence is part of the experience for many people facing serious illness and caregiving. Research on family anticipatory grief has identified hope, uncertainty, emotional distress, and changing relational roles among the experiences that can occur during the end-of-life period (Coelho et al., 2018).

Two seemingly contradictory emotions can be true at the same time. You can desperately want someone to stay while also wishing they did not have to suffer. You can be grateful for another day together while knowing that the illness is progressing. You can want more time and simultaneously wish for an end to pain.

There is no contradiction in that. It is one of the complicated realities of loving someone through serious illness.

When the Person You Love Is Changing

Anticipatory grief can be particularly complex when an illness gradually changes someone's personality, abilities, or capacity to communicate.

Dementia is one example. You may still have your loved one physically present while experiencing profound changes in the relationship. You might find yourself remembering how they used to be, while trying to understand who they are today.

Research involving family caregivers of people with Alzheimer's disease has found that anticipatory grief is associated with aspects of the caregiving experience, including the severity and circumstances of dementia. Researchers have described the experience as involving ambiguity and ambivalence as caregivers adjust to ongoing changes (Pérez-González et al., 2021).

This can create a painful feeling that your loved one is both here and somehow becoming less familiar at the same time.

You may think, “They're still here, but things aren't the same.”

That can be an incredibly difficult place to live, and it deserves to be acknowledged rather than minimized.

The Uncertainty Can Be Exhausting

There is another layer to anticipatory grief that is easy to underestimate. You may not know exactly when the loss will happen. You may not know how the illness will progress or what the next few months will bring.

You may spend a long period adapting to one change after another, trying to prepare yourself emotionally while continuing to live your everyday life. There can be a constant tension between preparing for the future and trying to stay present.

Research involving caregivers of people with terminal cancer has found that higher levels of pre-loss grief and lower perceived preparedness for death are associated with poorer psychological adjustment after the death, including symptoms of prolonged grief and depression (Treml et al., 2021).

This does not mean that experiencing grief before a death causes later difficulties. Rather, it suggests that people experiencing significant pre-loss grief may need support before the death occurs, particularly when they are also struggling to feel prepared for what is coming.

Does Anticipatory Grief Make Bereavement Easier?

You may have heard that grieving before a death gives you a “head start” and makes the eventual bereavement easier.

The research does not support such a simple conclusion.

A systematic review of caregivers of terminally ill cancer patients found that high pre-loss grief and low preparedness were associated with poorer adjustment following the death. However, the researchers also noted that definitions and measurements of pre-loss grief varied considerably across studies (Treml et al., 2021).

Another systematic review examined interventions intended to address anticipatory grief and found some positive outcomes from palliative interventions, but concluded that the evidence base remains limited. The researchers also found that none of the interventions they reviewed directly targeted anticipatory grief as a primary outcome (Nielsen et al., 2020).

So rather than thinking, “If I grieve now, I'll get it over with before they die,” it may be more helpful to think of anticipatory grief as a real experience that deserves attention and support in its own right.

You are not grieving incorrectly because you are struggling before the death.

Finding Ways to Be Present

When you are living with anticipatory grief, it can be tempting to spend all of your emotional energy preparing for what is coming. At the same time, you may feel guilty if you are not preparing enough.

There is no perfect balance.

Sometimes being present means having a difficult conversation about the future. Sometimes it means making practical plans or discussing someone's wishes for their care. And sometimes it means doing something completely ordinary together.

Have the cup of tea. Listen to the favourite song. Look through old photographs. Watch the movie you've seen a hundred times. Sit quietly together.

If your loved one is able and willing, you may also find meaning in conversations that you have been putting off. You might express gratitude, share memories, ask questions, or talk about what matters most to each of you.

There does not need to be a perfectly scripted final conversation. There simply needs to be room for connection.

Taking Care of Yourself While Caring for Someone Else

Caregiving can be physically and emotionally demanding. You may be trying to balance appointments, medications, work, children, household responsibilities, finances, and your own emotional response to what is happening.

It can be easy to put your own needs at the very bottom of the list.

But caring for yourself does not mean that you are abandoning the person you love. Accepting a meal, asking someone to sit with your loved one while you take a break, getting enough sleep when you can, or talking with a therapist are all reasonable ways of recognizing that you are carrying something difficult.

Asking for help is not a sign that you are failing.

It is a recognition that you should not have to carry everything alone.

Research on anticipatory grief points to the importance of recognizing and supporting caregivers who are experiencing significant pre-loss grief and difficulty preparing for death (Treml et al., 2021).

You Can Be Present and Still Be Preparing

One of the hardest parts of anticipatory grief is learning how to prepare for the future without disappearing from the present.

There may be financial decisions to make, healthcare decisions to discuss, changes in living arrangements, advance care planning, or conversations about what happens next. Those practical matters can be important.

But preparation does not mean that every moment has to become about death.

You are still allowed to laugh. You are allowed to make plans for next week. You are allowed to enjoy a beautiful afternoon without feeling guilty. And you are allowed to feel completely devastated later that same day.

Grief and joy can exist together.

So can hope and sadness. Love and fear. Gratitude and exhaustion.

One emotion does not cancel out another.

When Professional Support May Help

You do not have to wait until after the death to seek grief support.

Therapy may be helpful if your grief or anxiety is making it difficult to function, if caregiving is becoming overwhelming, or if you are struggling with guilt, anger, isolation, or persistent fear about the future.

It can also be valuable simply to have somewhere you do not have to protect anyone else's feelings.

A place where you can say, “I love them so much, and sometimes I am exhausted.”

Or, “I know they're still here, but I already miss who they used to be.”

Or even, “I don't know how I'm supposed to do this.”

You do not need to make those feelings sound acceptable before bringing them into therapy.

You Don't Have to Navigate This Alone

Anticipatory grief is complicated because the loss is not entirely in the past or entirely in the future. You may be grieving what has already changed while simultaneously fearing what is still to come.

There may be moments of extraordinary sadness alongside moments of tenderness, laughter, connection, and even relief.

None of those moments cancels out the others.

At Authentic Living London, we understand that grief does not always begin after a death. Sometimes it begins with a diagnosis. Sometimes it begins when a familiar relationship changes. Sometimes it begins when the future you imagined suddenly becomes uncertain.

Our therapists provide a compassionate, non-judgmental space where you can talk openly about what you are experiencing and explore how to care for yourself while caring for someone you love.

You do not have to know exactly what you need before reaching out. You can simply begin with:

“Something is changing, and I'm having a hard time with it.”

That is enough.

If you or someone you love is experiencing anticipatory grief, contact Authentic Living London at 226-224-0301 or info@authenticlivinglondon.com to schedule a consultation.

You do not have to navigate this season alone.

This article is intended for educational purposes only and is not a substitute for individualized medical or psychological care. Grief and caregiving experiences vary considerably. If you are experiencing severe distress, thoughts of self-harm, or difficulty staying safe, seek immediate professional or emergency support.

References

Coelho, A., de Brito, M., & Barbosa, A. (2018). Caregiver anticipatory grief: Phenomenology, assessment and clinical interventions. Current Opinion in Supportive and Palliative Care, 12(1), 52–57. https://doi.org/10.1097/SPC.0000000000000321

Nielsen, M. K., Carlsen, A. H., Neergaard, M. A., Bidstrup, P. E., & Guldin, M.-B. (2022). An examination and proposed definitions of family members' grief prior to the death of individuals with a life-limiting illness: A systematic review. Journal of Pain and Symptom Management, 63(4), 473–488. https://doi.org/10.1016/j.jpainsymman.2022.01.014

Nielsen, M. K., Neergaard, M. A., Jensen, A. B., Bro, F., & Guldin, M.-B. (2020). Resolving anticipatory grief and enhancing dignity at the end-of-life: A systematic review of palliative interventions. Death Studies, 46(2), 266–283. https://doi.org/10.1080/07481187.2020.1728426

Pérez-González, A., Vilajoana-Celaya, J., & Guàrdia-Olmos, J. (2021). Alzheimer's disease caregiver characteristics and their relationship with anticipatory grief. International Journal of Environmental Research and Public Health, 18(16), 8838. https://doi.org/10.3390/ijerph18168838

Treml, J., Schmidt, V., Nagl, M., & Kersting, A. (2021). Pre-loss grief and preparedness for death among caregivers of terminally ill cancer patients: A systematic review. Social Science & Medicine, 284, 114240. https://doi.org/10.1016/j.socscimed.2021.114240