Understanding Anticipatory Grief in Children and How the Adults Who Love Them Can Help

Is Grandma going to die?”

The question came from the back seat.

Mom and Dad had been careful. Medical appointments were discussed after bedtime. Voices were lowered when test results came in. Conversations stopped when the children entered the room. They thought they were protecting them.

But their eight-year-old already knew something was wrong. Grandma looked different. Mom was gone more often. Plans kept changing. Everyone kept saying Grandma was going to be “just fine,” while nobody looked just fine.

Children notice far more than we sometimes realize. They notice whispered conversations, tears we thought they didn’t see, the hospital bag by the door, oxygen tubing, missed soccer games, and adults who suddenly stop talking when they enter the room. What they may not have is enough information, or a brain developmentally ready, to understand what all those clues mean.

When we leave empty spaces in the story, children try to fill them. Sometimes what they imagine is harder than the truth we were trying to protect them from.

That is one of the ways anticipatory grief in children can begin.

The person the child loves is still alive, but life has already changed. Dad can no longer wrestle on the floor after his stroke. Grandma no longer remembers a grandchild’s name. Mom is spending most evenings caring for Grandpa. A brother’s cancer treatments now determine the family schedule and whether Mom or Dad can come to the school concert.

The child may not know the words anticipatory grief, but the child is already living it.

This subject brings together several important parts of my life. My undergraduate degree is in Child Development and Early Childhood Education. I later became a pastor and Certified Grief Educator, spending years beside families in hospitals, hospice rooms, funeral homes, sanctuaries, and cemeteries.

Today I serve as the Continuous Care Coordinator at Locke Funeral Services. Then there is what I learned raising my own daughters.

I did not hide death from them. That does not mean I wanted them to hurt. It means I wanted them to know that death can be named, questions can be asked, tears are allowed, and painful things can be faced together.

Today they are adults who are comfortable talking about death even when death hurts. I am grateful for that.

And now I enjoy watching children at visitations here at Locke who are comfortable and included. They may walk up to the casket and then return to playing with their cousins. They listen to stories, find something to eat, ask a question, wander back to Mom or Dad, and sometimes make everybody laugh.

They are not being disrespectful. They are being children.

There is something healthy about that to me. Children learn that when someone dies, families gather. We cry, remember, tell stories, laugh, eat, hug one another, and say goodbye. Death is present, but so are love, family, and life.

How Do Children Experience Anticipatory Grief Before Someone Dies?

We tend to think of grief as something that begins after death, but grief often begins much earlier.

Anticipatory grief is the grief that can come while someone is seriously or progressively ill. Adults may recognize it in themselves as sadness, fear, exhaustion, anger, or the growing awareness that life is changing. Children experience many of the same losses, but they experience them from the world of childhood.

A child may lose time with a parent. Normal routines change. Vacations disappear. Friends cannot come over because the house needs to stay quiet. Money becomes tighter. Mom and Dad are distracted. A grandparent who was once playful is now weak or confused.

A child may be frightened that a brother is going to die and angry that the same brother’s illness caused Mom to miss a recital. An adult may think the recital hardly matters compared with chemotherapy. To the child, however, that may be the loss she can understand.

Both feelings can exist at the same time.

Children also experience secondary losses. They simply do not call them that. They may not say, “I miss the way our family used to be.” Instead, they may say, “We never do anything anymore,” or “Mom is always at the hospital,” or “Why does everything have to be about him?”

Those statements can sound selfish to an exhausted adult. They may actually be grief.

How Do Children Show Grief and Loss Differently Than Adults?

Children do not always tell us what they are feeling in words. They often show us through behavior.

A child who had been sleeping alone may suddenly need someone nearby at night. Another becomes more clingy, distracted, angry, unusually quiet, or tearful. Schoolwork may change. A child may complain of headaches or stomachaches. A teenager may retreat to a bedroom or spend more time away from home.

Then there is the child who cries because Grandpa is dying and twenty minutes later asks for a snack and runs outside to play.

Adults sometimes find this confusing. Our own grief may follow us throughout the day, so we assume grief should look the same in a child. It does not. Children often move in and out of grief because they cannot remain inside intense emotion as long as adults can. Their developing brains need breaks, and play, friends, sports, music, imagination, silliness, and ordinary life give them those breaks.

That does not mean the child has forgotten what is happening. It does not mean a teenager who goes to a football game does not care that Mom is in the hospital.

A child can grieve deeply and still play. A teenager can love a dying parent and still want Friday night with friends. That is not a contradiction; it is part of how children and adolescents cope.

How Do Children Understand Dying, Death, and Grief at Different Ages?

Children are not miniature adults. Their understanding of serious illness, dying, and death changes as their brains develop.

Very young children mostly understand presence and absence. They know that Mom is gone more often, Dad is sleeping in a hospital, or Grandma no longer picks them up.

Preschool children may not fully understand that death is permanent. A child may be told that Grandpa died and then ask the next morning when he is coming home. Magical thinking can also make young children believe something they thought or said caused an illness.

That child may need to hear directly, “Nothing you thought, said, or did made Mommy sick.”

Elementary-age children begin to understand permanence and cause and effect. Their questions may be practical. “What is that machine doing?” “Will Grandpa be cold?” “Can Grandma hear us?”

Teenagers generally understand much more about death and may be thinking about the future in ways younger children cannot. “If Mom dies, what happens to us?” “Will I get this illness too?” “Who will be there when I graduate?”

I have written more about how children understand grief at different ages if it would help to look at the developmental stages more closely. But the important thing is not memorizing developmental stages. It is meeting the child where that child is now.

Tell the truth in words the child can understand. Answer the question actually being asked. Then allow the next question to come when the child is ready.

Why Can Childhood Grief and Loss Return as a Child Grows?

A five-year-old understands Mom’s illness with a five-year-old brain. At eight, that same child understands more. At thirteen, the meaning may change again because the adolescent now understands relationships, mortality, family, and the future in ways the younger child could not.

The loss did not happen again; the child changed. This is why childhood grief can return. A child may revisit an old illness or death years later and ask questions that were never asked before.

Graduation, leaving home, marriage, becoming a parent, or simply reaching a new developmental stage can bring a different understanding of an old loss.

That does not necessarily mean the child is stuck. The child may simply have a more developed brain with which to understand an old story. Tell the story again and listen again. The answer that satisfied the six-year-old may not be enough for the twelve-year-old that child has become.

How Do You Talk to a Child About Serious Illness, Dying, and Death?

One of the hardest decisions for adults is how much to tell children when someone is seriously ill. There is no perfect script.

Children do not need every medical detail, but they do need enough truth to understand what they are already seeing.

“Grandma has cancer. The doctors are giving her medicine to try to help.”

“Grandpa’s heart is very weak.”

“Mom is very sick, and the doctors do not think they can make the cancer go away.”

Simple language is usually best.

We can be gentle without being vague. If Grandpa was “lost,” a young child may wonder why nobody is looking for him. If Grandma “went to sleep,” bedtime can suddenly become frightening.

If death occurs, saying, “Grandma was very sick. Her body stopped working, and she died,” is often kinder than using language a child may misunderstand.

Then let the child’s questions guide the rest of the conversation.

Should Children Visit a Dying Loved One in the Hospital?

I would not automatically exclude children from a hospital simply because the hospital feels frightening to adults.

Preparation matters.

Before the visit, describe what the child may see. Grandpa may have oxygen tubing in his nose. Grandma may look much thinner. There may be machines next to the bed. The person may be sleeping most of the time or may not be able to speak much.

Describe what is there before the child sees it. I would not begin with, “Don’t be afraid.” Why introduce fear before the child has even entered the room? Familiarity can make an unfamiliar place less frightening.

A hospital visit can also reassure a child that he or she is still part of what is happening. The child can bring a drawing, talk about school, read a story, sit quietly, hold a hand, or stay for ten minutes and decide that is enough.

Give choices whenever choices are possible. Invitation is different from coercion. We do not need to force children to kiss someone, touch someone, remain in a room longer than they want, or perform affection for the benefit of adults. The goal is not to make a child prove love; it is to help the child remain connected.

How Can Hospice Help Children Understand Dying, Grief, and Loss?

When someone enters hospice, remember first that your loved one is still living.

Hospice can be a tender time for sharing life, not simply preparing for death. A child can ask Grandpa about the farm. Grandma can tell stories about when she was young. Someone can sing, read, look through photographs, or sit quietly and hold a hand.

Those conversations can become precious. Several years ago, a family approached me because their grandmother was dying in hospice. There were nearly ten young grandchildren, and the adults wanted the children included. They were trying to help them understand that Grandma was going to die and, according to their family’s faith, that her spirit would continue even though they would no longer be able to see her.

They asked me to spend time with the children, so I brought Water Bugs and Dragonflies by Doris Stickney, a little book that has helped many families begin conversations about death.

We read together in Grandma’s hospice room. The children asked questions of me and their parents. Eventually Grandma herself joined the conversation.

She talked to her grandchildren about her own death. She told them that she would soon be in heaven and would watch over them.

Instead of adults having a private conversation somewhere down the hall about what was happening, the children heard from Grandma herself. She was dying, but she was still their grandmother. She was still part of her own story.

What I remember just as clearly is what happened afterward. Some children stayed close to Grandma while others played. There were cookies, questions, tears, conversation, and laughter. Nobody pretended Grandma was not dying, but nobody required the children to sit solemnly beside the bed for hours to prove they understood.

They moved naturally between Grandma and play, questions and cookies, sadness and ordinary childhood. That is often how children grieve.

Why Is Play Important When Children Are Grieving?

Play can be one of the ways children process what is happening around them.

A stuffed animal becomes sick. A doll goes to the hospital. Someone in a LEGO story dies and then returns while the child experiments with the idea of permanence.

Art, music, movement, clay, dolls, stuffed animals, sports, nature, and imaginative play all give children ways to process experiences they may not yet be able to put into words.

We do not have to interpret everything. Sometimes our job is simply to notice, stay available, and let the child lead.

Let children bake cookies, build forts, play ball, sing, color, dance, laugh with friends, and spend time thinking about something that has absolutely nothing to do with cancer, dementia, hospice, or death.

Serious illness may be happening, but childhood is happening too. Both need room.

How Do Children Grieve When a Brother or Sister Is Seriously Ill or Dying?

When one child has cancer or another life-threatening illness, family life understandably begins revolving around treatments, specialists, hospitalizations, emergencies, and the needs of the sick child.

But the brothers and sisters are living through the illness too.

A sibling can deeply love a sick brother and still resent how much attention he receives. A child can be terrified that her sister may die and angry because Mom missed another school program.

A healthy sibling may feel guilty for being healthy. Another may quietly decide the easiest way to help an overwhelmed family is to stop needing anything.

Pay attention to the child who seems especially easy. Sometimes we praise children for being “so mature” when they have actually learned to become quiet, responsible, and nearly invisible because the family already has too much to handle.

That may be maturity. It may also be adaptation. Whenever possible, protect pieces of ordinary childhood:

• Keep the sleepover or birthday party.
• Find someone to drive to practice.
• Ask a trusted adult to attend the concert when Mom or Dad cannot.
• Let teachers and school counselors know what is happening.
• Give the healthy sibling moments of undivided attention.
• Keep familiar routines and traditions whenever you can.

A sibling should not have to feel guilty for having needs simply because another child has greater needs. If your family is carrying this, our grief resources include material written for parents trying to support more than one child at once.

How Do Children Grieve Someone They Are Too Young to Remember?

Very young children may eventually have little conscious memory of someone they once loved deeply.

That can be painful for the adults who remember.

A mother may desperately want her youngest child to remember Daddy. A grandmother may want the child to remember being held by Grandpa.

We have photographs. We remember the laughter. We know how much that person loved this child, and it can hurt to realize the child may someday know those moments only through stories.

Tell the stories. Look at photographs. Watch videos. Talk about ordinary things as well as important ones.

“Your dad used to sing that song to you.”

“Grandpa loved sitting with you in that chair.”

But do not make remembering a test of love.

There is an important difference between saying, “You and Grandpa used to sit here together,” and asking, “Don’t you remember?”

If the child does not remember, that is okay. Sometimes adults have to grieve that loss too.

A child can still know someone’s place in the family story without having personal memories of that person. There is a difference between memory and heritage.

We can preserve the story without inventing the memory.

Should Grieving Children Attend a Visitation or Funeral Service?

I believe children should generally have the opportunity to participate when they are thoughtfully prepared and given appropriate choices.

Ritual helps children understand that something important has happened. It also shows them what families and communities do when someone dies.

We gather. We remember. We cry. We tell stories. We take care of one another.

If there is an open casket, tell the child what to expect before entering the room.

“Grandpa’s body will be lying in the casket. His body no longer breathes or moves. He may look a little different.”

Explain that some people may cry while others may laugh when they remember something funny. Then let the child decide how close to come and how much to participate.

This is something I particularly appreciate about visitations at Locke. Families gather around tables with refreshments and conversation. Adults visit. Stories are told. Children move naturally through the space.

A child may approach the casket and then go back for a cookie. Cousins play together. Someone cries, and a few minutes later a story makes half the room laugh.

That child is learning that death is sad, but the family is still here. Mom may be crying, but someone has an arm around her. Dad is grieving, but people are surrounding him. People can cry and laugh in the same room.

A sad moment does not make an entire experience harmful.

Thoughtful preparation and choice allow children to remain part of their own family story.

How Can We Help a Child Who Is Afraid Someone They Love Is Dying?

Fear often grows in uncertainty.

A child may be afraid Grandma is going to die because nobody will tell her whether Grandma is going to die. Another may be afraid of the hospital because hospitals are unfamiliar.

Sometimes information helps. Sometimes reassurance helps. And sometimes the honest answer is, “I don’t know.” Adults often want to tell children everything will be fine because we love them.

But if there is a real possibility that someone may die, “Everything is going to be fine” can create more confusion later. Hope does not require false promises.

We can say, “The doctors are doing everything they can.”

“We hope Grandpa gets stronger.”

“Grandma is very sick, and I will tell you when we know more.”

And if the time comes, “The doctors do not think Grandma is going to get better.”

Truth builds trust.

What Do We Tell Grieving Children When Death and Loss Feel Unfair?

Life is not always fair.

That can be difficult for adults to accept. It can feel unbearable when the person suffering is a child or someone a child deeply loves.

My brother Martin died when he was one day old. My mother had carried him full term without complications and expected to bring home a baby. She did not.

There was nothing fair about that.

Children develop cancer. Healthy parents have strokes. Babies die. Accidents happen. People who have done everything “right” develop illnesses medicine cannot cure.

We need to be careful about giving children an explanation that requires every terrible thing to make sense.

I am a woman of extraordinary faith, but my faith does not require me to manufacture an answer for every illness, accident, or death.

We do not need to tell a grieving child that everything happens for a reason when we do not know the reason ourselves.

Sometimes the most truthful answer is, “I don’t know why this happened.”

Then we remain beside them.

We listen without an agenda, simply to understand the child. We make room for the anger and the questions. We cry. We remember. We laugh again when laughter comes, and we help children live with what cannot be explained.

That is not hopelessness. It is hope sturdy enough for real life.

What Do Children Need Most When Someone They Love Is Dying?

Sometimes children need a hug and ice cream, time with you at the playground, a walk, a game of basketball, or something wonderfully silly.

They also need truthful information appropriate to the understanding they have today. They need permission to ask the same question again and to return years later with new questions.

They need permission to be sad, angry, confused, curious, playful, distracted, and happy without being told which emotion they are supposed to have.

They also need to know that our grief is not theirs to manage.

It is okay for children to see us cry. We can say, “I’m crying because I’m sad that Grandma is so sick. I’m okay, and you do not need to make me feel better.” And if they draw you a picture or wrap their arms around you, receive that love and say thank you.

A child can witness adult grief without becoming responsible for the grieving adult.

When serious illness is changing a family, a few things matter again and again:

• Tell the truth in words the child can understand.
• Answer the question the child actually asks.
• Prepare the child before hospital, hospice, visitation, or funeral experiences.
• Give choices whenever choices are possible.
• Preserve routines and ordinary childhood.
• Let children play without assuming they have forgotten.
• Watch for changes in sleep, school, behavior, or physical complaints.
• Revisit the conversation as the child grows.
• Make sure the child knows none of this is theirs to fix.

Most of all, let them remain children.

That hospice room filled with grandchildren has stayed with me because Grandma was dying and nobody denied it. The children were included. They heard the truth. They asked questions. Grandma was able to talk with them about her own death.

Then some of them went back to playing and eating cookies while their family remained gathered around them.

Nobody told them they were grieving incorrectly. Death was present, but so was life. We cannot promise children that everyone they love will always be safe, that every illness will be cured, or that life will always be fair.

What we can promise is that we will tell them the truth in words they can understand. We will listen when they need to talk and let them play when they need to play. We will include them without forcing them. We will answer what we can and admit when we do not know.

We will let them love the person who is dying while still being children, and we will stay beside them while they find their way.

You Do Not Have to Navigate Childhood Grief Alone

If serious illness, caregiving, or death has touched your family and you are trying to help a child understand what is happening, you do not have to have all the answers before you begin.

Begin with truth, love, and the child in front of you.

This is part of what Continuous Care at Locke is all about: walking beside families before and after a death, helping people understand grief, and reminding you that you do not have to navigate it alone. We serve families throughout Waterloo and the Cedar Valley, and that care does not begin or end with a funeral service.

If you are supporting a grieving child right now, you are welcome to reach out to us with a question, or to join one of our local grief support gatherings. There is no cost, and you do not need to have used our services to come.

Frequently Asked Questions About Anticipatory Grief in Children

What is anticipatory grief in children?

Anticipatory grief in children is the grief a child experiences while someone they love is seriously or progressively ill, before that person has died. The child may be grieving lost time with a parent, changed routines, a grandparent who can no longer play, or a family that no longer feels the way it used to. Children rarely name it as grief, and it often shows up as behavior rather than words.

Should I tell my child that someone is dying?

In most cases, yes, in words appropriate to the child’s age and understanding. Children usually already sense that something is wrong, and when we leave gaps in the story, they fill them with something that is often more frightening than the truth. You do not need to share every medical detail. You do need to give the child enough truth to make sense of what they are already seeing.

Should children be allowed to attend a visitation or funeral?

Children should generally be given the opportunity to participate, with thoughtful preparation beforehand and real choices about how much to take part. Describe what the child will see and hear before entering the room, explain that some people may cry and others may laugh, and then let the child decide how close to come. Invitation is different from coercion.

Why does my child seem fine one minute and upset the next?

Children move in and out of grief because their developing brains cannot stay inside intense emotion as long as an adult’s can. Play, friends, sports, and silliness give them necessary breaks. A child who cries about Grandpa and then asks for a snack has not forgotten. That is simply how childhood grief works.

Who can we talk to if a death has just happened?

If a death has occurred and you are not sure what to do next, we are available 24/7 to answer questions and help you take the first steps. If the death happened some time ago and a child is now asking new questions, our Continuous Care team is here for that too.