Terminal illness and anticipatory grief
What do we mean by anticipatory grief?
When someone has an illness they cannot recover from, this is called a terminal illness. Knowing that someone is likely to die from their illness can affect the whole family. Often, people begin to think about and feel the impact of the death before it has happened. This is called anticipatory grief.
It means we may start to imagine what life might look like without that person, while also coping with the changes that serious illness brings day to day. Some people feel able to talk, plan, and prepare for what is ahead. Others may find this too painful to think about or discuss. Both responses are understandable.
What we do know is that children and young people will need support as things change over time.
Changes children may notice
Whether you are unwell yourself, or supporting a child when someone else is ill, it can help to think about what changes might look like from a child’s point of view. Children often notice more than we expect, even if things have not been fully explained to them.
They may notice:
- changes in roles and responsibilities at home
- changes in family relationships and routines
- the effects of illness or treatment on the person who is ill
- financial pressures or changes
- changes in faith, beliefs, or family outlook
These changes can feel like a series of smaller losses, each with their own sense of grief.
For example:
- a parent being too tired to attend school events
- no longer sharing favourite hobbies or activities together
- cancelled holidays or family plans
- changes in the home to accommodate medical equipment
- not being able to have friends over as before
Each of these changes can matter deeply to a child.
How anticipatory grief can feel
Anticipatory grief is different for everyone. There is no single or “right” way to feel. Some people may feel numb or disconnected. Others may experience strong emotions that come and go. Grief is influenced by many things, including personality, past experiences, additional needs, and how safe someone feels in their relationships and support networks.
You might notice a range of feelings and physical reactions, such as:
Emotions
- anger
- anxiety
- fear
- guilt
- frustration
- shock
In the body
- tiredness or low energy
- difficulty sleeping
- headaches or tummy aches
- feeling sick
- difficulty concentrating (“brain fog”)
These feelings can come and go, sometimes unexpectedly.
Supporting your child (and yourself)
When supporting children and young people, it can help to keep life as steady and predictable as possible.
Keep routines where you can
Familiar routines can help children feel safer and more secure at a time when lots of things are changing.
Be honest, using clear language
Share information about what is happening now, using language your child can understand. You do not need to explain everything at once. Giving information gradually, as things change, can help children make sense of what is happening.
Avoid looking too far ahead
As adults, we may naturally think about what is coming next. For children, focusing on the present can feel more manageable. Adding information bit by bit—like pieces of a jigsaw—can help them adjust over time.
Simple ways to support wellbeing
Small, everyday activities can help both children and adults manage difficult feelings.
You might try:
- spending time with pets
- getting outside when possible
- gentle exercise or movement
- talking to friends or family
- using peer or community support
- having a warm bath or shower
- making a favourite drink
- writing or journalling
- creative activities such as art, music, or crafts
What helps will be different for each person.
When coping feels harder
Sometimes, feelings can become overwhelming. You may hear this described as emotional dysregulation, when it feels hard to manage or tolerate emotions. At these times, usual coping strategies may not seem to work. This is not a failure. It is a sign that more support, time, or different approaches may be needed.
You may find it helpful to look at other SeeSaw resources on managing emotions and supporting regulation in children and young people.
Supporting someone else
When someone we care about is grieving, it can be hard to know what to say. We may unintentionally base our response on our own experiences of grief. Instead, it can help to stay open and curious about what this experience is like for them.
Rather than asking, “How are you?”—which can feel difficult to answer—you might try:
- “What sort of day are you having today?”
- “How have things been for you recently?”
- “What does this feel like for you?”
- “What would feel helpful right now?”
- “Would it help if I did…?”
These questions can feel easier to respond to and show that you are willing to listen.
Important things to remember
It can help to remind yourself, and your child, that:
- There is no right or wrong way to feel
- Feelings come and go, and all feelings are valid
- It is okay to feel okay sometimes
- Keeping busy or distracted can be a helpful way of coping
- You do not have to show your feelings to others if you do not want to
- Your experience of grief is your own
A final thought
Living with serious illness in the family can bring many changes, often over a long period of time. This can feel uncertain and overwhelming at times. By staying open, honest, and supportive—and by allowing space for a range of feelings—you can help your child begin to make sense of what is happening.
You are not expected to have all the answers. Support is available, and you can return to it whenever you need to.
