Trigger Warning: This story contains themes that may upset readers.
The phone call comes at 2 in the morning. Your 82-year-old father fell and was hospitalized with a broken hip. As you walk through the empty streets, something inside you shifts—a recognition that this could be the beginning of the end. At that point, grief comes not after the loss, but with the growing awareness that the loss is coming.
It’s the grief of waiting, and it affects millions of people who care for aging parents, partners with life-limiting diagnoses, or loved ones with dementia. Despite its universality, it is poorly understood and makes people feel the emotional complexities of loving someone while also being prepared to lose them.
What is predestination?
Anticipatory grief is when we begin to grieve before a loss occurs. This grief, fear of what’s to come, worry about life without them – and it often begins much earlier than we realize. It can start suddenly when we get a life-changing diagnosis. That phone call from the doctor, the results of the scan, the words “I’m sorry, but…” These moments mark the beginning of the waiting grief, because suddenly everything has changed. However, sometimes it starts more quietly. Maybe this is when you see your loved one asking the same question three times or getting confused about what day it is. Maybe it’s a phone call from your sister saying, “My mom fell, she’s fine, she didn’t break a bone, but now she’s wobbly at the top of the stairs and she’s noting a bit of a ‘shaky’ feeling.” It’s the heavy feeling you get when you see your once-strong parent struggle with dementia, or the tears you get when you find out your late partner will never see your children graduate.
Clinical psychologist Dr. Emily Musgrove explains that people experiencing anticipatory grief are “grieving the anticipated loss of that person in real time.” This process provides a warning that this is only the beginning of the ongoing loss. Not only do you grieve for who they were or are, but you prepare for who they will become as the disease progresses.
“Grief and love are two sides of the same coin,” explains Musgrove. “Where we love, we grieve, and where we grieve, we love.”
Neurologist Dr. Mary Frances O’Connor, author of The Sad Brain, explains the difference between sadness—our emotional outbursts—and grief, which is how these emotions develop. In anticipatory grief, both occur simultaneously: strong emotions along with a gradual process of adjusting to the loss while the person is still alive.
Recent Australian research shows that families often experience grief when a loved one enters aged care, and that grief intensifies over time. The decision evokes complex emotions: fear for the well-being of a loved one, guilt about not managing the home, anger at the unfairness of aging, sadness at lost routines, and sometimes unexpected relief. Grief is especially confusing… how can something so necessary hurt so much?
How grief lives in the body
Sadness activates the same brain regions as physical pain, the anterior cingulate cortex and the right ventral prefrontal cortex. This repetition explains why we describe grief in physical terms: a “broken heart,” a “sick” feeling, or a “painful” sense of loss. The brain processes emotional pain through the same pathways as physical trauma, so anticipatory grief actually hurts.
The brain acts as a prediction machine, always expecting familiar patterns. When someone we love rejects, the brain is still there waiting for them: predicting their voice on the phone, their presence at dinner. When these predictions repeatedly fail, the brain threatens to trigger stress responses: chest tightness, fatigue, digestive problems, and an empty stomach.
This explains why denial and avoidance prolongs the pain. When we push away sadness, the brain continues to send anxiety signals. Like covering an infected wound and waiting for it to heal, suppressing grief exacerbates its physical effects. We know that the body keeps score. Unprocessed grief often manifests itself through headaches, sleep disturbances, weakened immunity, or persistent anxiety.
Why it can feel harder than expected
The grief of waiting presents unique challenges. You have to vacillate between hope and acceptance, often feeling guilty for grieving someone who is still alive.
“It can be very confusing for people,” says Musgrove. “This person is still alive and yet I feel all these things.” The confusion is heightened because anticipatory grief mimics postmortem grief—despair, emptiness, heartache, anger—but without finality.
Unlike traditional grief, anticipatory grief has no established rituals or social recognition. It’s like being forced to sell the family home where your children grew up. Everyone understands that it’s necessary, but there’s no way to mourn what you’re missing out on, and there’s nothing like ending a housewarming party like this. Society provides a framework for post-death mourning, such as funerals and bereavement, but offers little recognition for the long goodbyes of watching dementia progress or caring for terminally ill partners. You are expected to focus on the practical while the personal mourning of the lost life takes place.
The “sandwich generation”, mainly women aged 40 to 60, are facing special problems. They simultaneously manage the needs of children, career demands, and caregiving responsibilities while beginning to grieve a loss that has not fully occurred. Every recession leads to predictable grief: when mom can’t drive safely, when dad forgets familiar faces, when parents need help with personal care.
“As the brain tries to reimagine this new map — well, now mom can’t walk or now mom is at home — it’s constantly being updated,” says Musgrove. “This renewal triggers a stress response, and in the long-term grief of waiting, we’re always exposed to chronic stress activation.”
How to take care of yourself during early loss
It is important to understand anticipatory grief as normal and necessary, rather than something to be overcome. Here are some ways to help you.
Recognize dual feelings: You can at the same time hope for the rest of the time and grieve for what is lost. These are not contradictory feelings. They are part of the landscape of anticipatory grief.
Experience the two-way model: Healthy grief involves transitioning between loss-focused activities (allowing grief, sensitivity, pain) and restorative activities (adapting to new circumstances, finding meaning). Both are necessary.
Create small rituals: Write letters to be shared later, take pictures, and make small talk until the person can be engaged.
Confirm physical effects: Anticipatory anxiety causes real symptoms, including fatigue, brain fog, and sleep disturbances. These are not weaknesses, but normal stress responses. Adequate rest, nutrition and gentle movement are crucial.
Set boundaries: The desire to spend every moment with a shrinking loved one is understandable, but not sustainable. Regular breaks are not selfish. They are essential for long-term health.
List the experience: Just admitting “I’m going through the grief of waiting” provides relief and validation.
Support others who are grieving before saying goodbye
Well-meaning advocates often struggle with appropriate responses. Offering hope (“they might get better”) or minimizing the situation (“at least they’re here”) is usually not helpful. Instead:
• Follow their lead: Let them express their feelings without trying to fix their emotional state.
• Avoid time-based expectations: Comments like “you should be above this” show a fundamental misunderstanding. Don’t make this mistake.
• Providing specific support: Offer specific help instead of “let me know if you need anything.”
• Recognize the problem: Phrases like “this must be really hard” are asserted without attempting to address them.
• Remember their other roles: They are still parents, employees, community members, and more.
• Be patient with mood swings: Emotional instability is normal, not related. Anticipatory grief is when we begin to grieve before a loss occurs.
When to get additional support
While anticipatory grief is normal, certain indicators show that professional support can help.
Continuous ability to work: This is when the constant sadness interferes with eating, sleeping or working for long periods of time. Research shows that grief affects long-term emotional, mental, and physical health.
Complex family dynamics: Families with a history of trauma, addiction, or alienation can find anticipatory grief especially difficult.
Caregiver Sadness: Emotional stress along with practical responsibilities can be overwhelming. Support groups, counseling and respite care provide important help.
Previous Unresolved Losses: Those with a history of complicated grief may experience pre-existing grief. Realizing that 20 percent of people are unable to “move on” after the death of a loved one underscores the importance of seeking support when needed.
Permission to be sad while loving
Perhaps the most important message: mourning while someone is still alive is not treason. It is a deep expression of love.
Understanding anticipatory grief as normal allows one to experience the full range of emotions when faced with impending loss—sorrow and gratitude, fear and love, exhaustion and deep gratitude for the time left.
“There’s nothing broken about you,” insists Musgrove. “This pain tells us that you are alive and human. This grief tells us that you care for this person very much and that you love them very much.”
Acknowledging the grief of waiting opens up opportunities for authentic conversations about aging, caregiving, illness, and death. These difficult conversations can deepen relationships and create space for the creation of meaning that would otherwise be lost.
For those who walk this path, the sadness of waiting is not about losing hope or staying positive. It is the proof of being human, caring deeply and having the courage to love fully while knowing loss is inevitable.
This article was published in the journal Wellbeing 222
