When Grief Begins Before Goodbye: Understanding Anticipatory Grief

November is an opportunity to recognize the challenges faced by people living with Alzheimer’s disease and other forms of dementia, as well as their families and caregivers.  These changes can create a distinctive kind of sorrow, and understanding anticipatory grief can help us care for ourselves and others with greater patience, compassion, and hope.

Recently, I received a phone call from a long-time friend.  His wife of many years was suffering with dementia, and he decided that at this stage of their life they would sell their home and move into a continuing care retirement community where she could receive appropriate care as her illness progressed.  Then, sooner than expected, just a few weeks after their arrival, it became apparent that his wife would need to move into a memory care unit on that campus.  

His story reminded me of my own experience.  My late wife began experiencing memory problems, and slowly over a period of almost nine years, transitioned from being a smart, well-read, articulate woman to losing her ability to communicate and enjoy the life we had shared, instead spending her days sleeping and watching SpongeBob cartoons on the television.  Observing the dynamic woman I loved slowly disappear was painful.  She had a progressive chronic disease with no known cure, and I was losing her one day at a time.  That slow process was the hardest loss I have ever experienced.

What is Anticipatory Grief?

There are times in life when we begin grieving the loss of someone we love even though that person is still with us.  We call that anticipatory grief.  It is the grief that may arise when we expect significant loss, often before a loved one dies.

It can accompany Alzheimer’s disease and other forms of dementia, serious illness, or major changes in health and independence where the future is uncertain. 

Families may mourn changing conversations, familiar roles, shared routines, or a relationship that no longer feels the same. Their loved one is still here, and their sorrow is real.  Their hearts begin to mourn what has already been lost and what they fear they may lose in the future. Friends and family continue to visit, care, talk, and love, yet something has changed, and they sense that more changes may be coming.  This grieving becomes part of daily life. 

Not everyone experiences anticipatory grief in the same way, and grieving an expected loss does not mean that there will be less grief after death. Click for more on understanding what grief feels like.

When Loss Comes in Stages: Recognizing the Signs of Anticipatory Grief

Dementia can bring changes that reach far beyond memory. Communication may become more difficult. Familiar routines may disappear. A person may need increasing assistance with everyday activities. Family roles can change as a husband becomes a caregiver to his wife or an adult child assumes responsibilities once handled by a parent.

A wife may miss the conversations she once shared with her husband. A son may long for the father who guided him through life’s difficult decisions. A daughter may grieve when her mother no longer recognizes her.  The person they love is still present, but aspects of their relationship have changed.

This grief can be especially difficult because it is ongoing. There may be no single moment when the loss can be clearly identified or fully understood.  Instead, families may experience a series of losses, each bringing its own mixture of sadness, adjustment, and love.

Dementia is not the only circumstance in which anticipatory grief occurs. It may also accompany cancer, advanced heart disease, other life-limiting illnesses, or situations in which a loved one’s future is uncertain.

Recognizing this grief does not mean giving up hope. It means acknowledging the reality of the present while facing an uncertain future.

The Complicated Emotions of Anticipatory Grief

Anticipatory grief does not look the same for everyone. It may include sadness, anxiety, anger, loneliness, fear, or a sense of helplessness.

Some caregivers experience exhaustion from the constant demands of providing care. Others struggle with guilt because they feel frustrated, impatient, or overwhelmed. A person may even feel relief at the thought that a loved one’s suffering might eventually end—and then feel guilty for having that thought.  These emotions can be difficult to admit.

Caregivers sometimes believe that loving someone means remaining strong at all times. They may feel they have no right to grieve because their loved one has not died. Others avoid talking about their feelings because they do not want to burden family members.

But grief is not evidence of insufficient love or faith. Often, it is a reflection of how deeply we love someone and how painfully we experience the changes affecting our relationship.  You can love someone faithfully and still grieve what is happening.  You can be grateful for another day together and sad about the changes that day brings. You can trust God and still ask difficult questions. You can care deeply for another person and recognize that you need care yourself.  These feelings can coexist. We do not need to judge ourselves for experiencing them.

Learning to Live in the Present: How to Cope with Anticipatory Grief

When we anticipate loss, our minds naturally move toward the future. We wonder what will happen next, how we will manage, and whether we will have the strength to face what lies ahead.  These questions are understandable. Yet living constantly in the future can make it difficult to receive the gifts that remain in the present.

For families living with dementia, meaningful moments may still be possible, even when familiar forms of communication have changed.

A favorite song may awaken a response. Holding hands may communicate affection when words become difficult. Looking through family photographs, sitting quietly together, enjoying a familiar meal, or taking a gentle walk may create moments of connection.

Not every day will bring such moments, and families should not feel pressured to manufacture happiness. Some days will be difficult. Some conversations will end in frustration or sadness.  The invitation is simply to notice what remains possible.

We cannot always restore what has been lost, and we cannot control every change that lies ahead, but we can often discover new ways of expressing love within the circumstances we face today.  Sometimes the most meaningful act of love is not finding the right words. It is simply being present. This page can help you with supporting someone who is grieving.

Caring for the Caregiver

Caregivers need care, too.  When I was a pastor, I was faithful about calling on our homebound congregants.  I would regularly visit them, bring them Holy Communion, pray with them, read Scripture to them, and remind them that their fellow parishioners remembered them.  What I neglected to do was address the needs of the caregivers.  They were the ones dealing with anticipatory grief.  They were the ones:

• Experiencing sadness, fear, uncertainty, anger, loneliness, or a sense of helplessness. 
• Struggling with exhaustion from caregiving and worry about what lies ahead. 
• Feeling guilty about feeling frustrated, needing a break, or experiencing relief when help became available. 
• Trying to treasure time together alongside grief for what had changed. 

The physical, emotional, relational, and spiritual demands of caring for someone with dementia can be substantial. Over time, caregivers may neglect their own needs, withdraw from friends, or feel that their entire identity has become defined by responsibility for another person.  Anticipatory grief can make these burdens even heavier. Here are some practical ways you can support your grieving friend.

Practical Steps For Caregivers

If you are a caregiver, remember that asking for help is not a failure. It is an important part of sustaining your ability to care.  Consider these practical steps:

Give your feelings a voice. Talk with a trusted friend, pastor, chaplain, counselor, or support-group member. You do not need to have everything figured out before you speak.

Accept practical assistance. Allow others to help with meals, errands, appointments, or periods of respite. If possible, explore community resources and dementia-care support services.

Protect moments of rest. Sleep, exercise, nourishing meals, and time away from caregiving responsibilities are important. Your needs matter, too.

Maintain meaningful relationships. Stay connected with people who understand that your life has changed. You need not carry this experience alone.

Seek professional support when needed. Persistent distress, severe anxiety, depression, or difficulty functioning may warrant help from a qualified mental health professional or healthcare provider.

Caregiving is an expression of love, but love does not require us to ignore our own limitations. Receiving care can be part of caring well for someone else.

Where Is God When Grief Begins Early?

For people of faith, anticipatory grief may raise spiritual questions.  Why is this happening? How do we pray when the future frightens us? Where is God when someone we love seems to be slipping away from us, little by little?

There are no simple answers that remove the pain of these questions.  Christian faith does not promise that faithful people will be spared illness, sorrow, or death, nor does it require us to conceal our sadness behind reassuring words.

Scripture gives us a different invitation.  In Romans 12:15, Paul writes, “Rejoice with those who rejoice; mourn with those who mourn.” This is a call to compassionate presence. It reminds us that suffering is not something we must explain away before we can accompany another person through it.

The Psalms give voice to fear, lament, confusion, and longing. Jesus Himself wept at the tomb of Lazarus, even though He knew that death would not have the final word.

These biblical witnesses remind us that sorrow and faith are not enemies.  We may bring God our unanswered questions, our exhaustion, our anger, and our fear. Prayer need not be eloquent. Sometimes it is simply, “Lord, help me through today.”

We may not know what tomorrow will bring, but we can receive the promise that God’s presence is not dependent upon our ability to remain strong.  We can become signs of that presence to one another.

How Churches Can Walk Alongside Families

Anticipatory grief offers churches an important opportunity to extend their ministry beyond the traditional boundaries of funeral care.

Families living with dementia or another serious illness may need support for months or years before a death occurs. Their grief may be largely invisible to the congregation because there has been no funeral, memorial service, or public announcement of loss.

Churches can respond by learning to recognize these experiences and offering consistent, practical care.  A phone call, a shared meal, transportation to an appointment, respite assistance, or an invitation to speak honestly about grief can make a meaningful difference. 

Pastors and grief caregivers can also help families understand that anticipatory grief is a legitimate experience. They can encourage caregivers to seek support, listen without judgment, and avoid offering simplistic explanations for suffering.  Above all, churches can remind families that they have not been forgotten.

As Galatians 6:2 teaches, we are called to “bear one another’s burdens.” This calling extends to the long, uncertain journey of caregiving and anticipatory grief, not only to the days immediately surrounding a death. 

At Hope Beyond Our Grief, we believe churches can become communities where people find compassionate companionship, practical assistance, and hope that does not deny their pain.

Free Printable Guide for Pastors and Grief Caregivers

Walking with Families Through Anticipatory Grief

A one-page reference guide with practical ways to support families, helpful words to say, and reminders on caring for the caregivers.

Free PDF – No Email Required – Print or share with your grief support care team

Want more resources for supporting grieving families? Explore our grief caregiver training and resources.

Love in the Time We Have

Anticipatory grief reminds us of the fragility of life and the preciousness of our relationships.  We cannot prevent every loss or know what the future holds, and we cannot make the journey easier simply by telling ourselves or others to be strong. We can, however, learn to live honestly within the present.

As a community of faith, we can speak words of love while we have the opportunity. We can listen patiently, ask for help, accept support, and make room for both sorrow and gratitude. We can remember that a person’s dignity and worth are not erased by illness, declining memory, or increasing dependence, and we can accompany one another when the road becomes difficult.

If you are experiencing anticipatory grief, please hear this: You do not have to wait until someone dies to acknowledge your sorrow. You do not have to carry every burden alone. And you do not have to choose between loving the person who is still here and grieving the changes you are experiencing.  Both can be true.

Our hope is not that we will escape every sorrow, but that sorrow will not have the final word. In Christ, we find the promise of God’s abiding presence, the companionship of His people, and a hope that reaches beyond what we can presently see.

Until then, we can take the journey one day at a time, trusting that even when grief begins before goodbye, “we do not have to walk alone.”

---

Hope Beyond Our Grief equips and trains grief caregivers to provide comfort and hope to people experiencing loss. Through education, practical resources, and compassionate care, we help churches become places where grieving people are welcomed, understood, and supported throughout their journey.