Anticipatory grief can affect the person who is ill as well as their family and friends. You might be grieving while the person is still here, which can feel confusing, lonely or even disloyal. But it doesn’t mean you’ve stopped hoping, given up on them or care any less.

What are you grieving?

Anticipatory grief is not only about the death that may be ahead. Illness can bring many smaller or gradual losses, including changes to

• the person’s health, independence, abilities or personality

• your relationship and the things you used to do together

• your own freedom, identity or role when you become a carer

• plans, routines and the future you expected to share

• your sense of safety or certainty about what will happen next

With conditions such as dementia, these losses may happen over a long period. Feelings of grief can return each time something changes, even after a more settled time.

What can anticipatory grief feel like?

There is no single way to experience it. Feelings may come in waves or change from one hour to the next. You may notice

• sadness, fear, anger, helplessness or numbness

• guilt or regret about things said, unsaid, done or not done

• loneliness, particularly if other people don’t understand

• relief when the person is comfortable, or a wish for uncertainty or suffering to end

• difficulty sleeping or concentrating, exhaustion or physical tension

• repeatedly imagining the death or worrying about how you’ll cope afterwards

You may also have ordinary, enjoyable moments or days when grief feels less present. This doesn’t mean that you’re avoiding what’s happening.

Mixed feelings are common with anticipatory grief

Love, sadness, frustration and relief can exist together. Caring may be exhausting, and it’s possible to want the situation to end while desperately wishing the person did not have to die. Thoughts like these are a common response to strain and uncertainty; they don’t make you a bad person.

Knowing that a death is expected doesn’t necessarily make the grief afterwards easier. The death may still feel shocking, and the sudden end of your caring role or contact with healthcare professionals can create another sense of loss.

Can the person who is dying experience anticipatory grief?

Yes. They may be grieving their health, independence, identity, relationships, plans and the life they expected to have. They may feel frightened, angry, withdrawn or concerned about the people they’ll leave behind.

You don’t have to make these feelings disappear. Listening without correcting, reassuring too quickly or insisting on a positive outlook can help. If they want to talk, gentle questions such as “What’s worrying you most?” or “What feels important today?” may make space for an honest conversation.

Living alongside anticipatory grief

There is no right way to cope, and you don’t have to make every moment meaningful. Some of these suggestions may help

• Name what’s happening. Recognising “this may be grief” can make difficult feelings less bewildering.

• Focus on what’s manageable today when thinking too far ahead becomes overwhelming.

• Talk to someone who can listen without trying to fix things, such as a friend, relative, counsellor, faith leader, hospice professional or carers’ group.

• Ask for practical help and take breaks. Food, rest, fresh air and time away still matter.

• Spend time together in ways that suit you both. This might mean talking, sharing memories, listening to music, completing practical tasks or simply sitting quietly.

• Ask the care team what changes to expect and who to contact. Some people feel calmer with information; others prefer to take it gradually.

When extra support may help

Speak to your GP or another healthcare professional if distress is persistent, you’re struggling to manage everyday life, sleep or eat, or anxiety feels unmanageable. Support is available before a bereavement as well as afterwards.

If you feel that you may harm yourself or someone else, or can’t keep either of you safe, call 999 or go to A&E.

You’re not grieving too soon

Anticipatory grief is a natural response to loving someone while living with change and uncertainty. Your experience may not look like anyone else’s, and it doesn’t have to follow a particular pattern.

For more information on support when someone is dying, read our Support Hub article: How to look after yourself when caring for someone who is dying.