Anticipatory grief

Anticipatory grief is when you have feelings of grief while the person is still alive. You might worry about the future and how you will cope without them. And you may feel sad, worried or angry about their illness and its effect on your life.

This page is for family members or friends of someone who has a terminal illness. But people who have a terminal illness can also feel anticipatory grief.

You might find it upsetting to read about difficult feelings or thoughts. We’re here to support you – call our free Support Line on 0800 090 2309 or email support@mariecurie.org.uk.

Anticipatory grief is when you have feelings of grief while the person is still alive. It’s sometimes called pre-death grief or grief before death. Many people experience anticipatory grief. This is a natural reaction when someone’s illness is having an effect on your life. And when you feel worried about what will happen in the future.

When you have anticipatory grief, you may feel:

Some people who have grief before loss feel like they're in a constant state of sadness, fear or panic. You might find your feelings get worse when there are changes in the person’s health. And you may feel better when things are more stable. At times, some people feel numb or detached from the situation or the person who is ill.

Your family member or friend’s illness may have an impact on:

You might feel as though you lose part of them every time their condition gets worse.

Your family member or friend may seem like a different person. And you may feel like the person you knew before has already gone. You may really miss the person they used to be.

These changes and losses can cause a grief reaction, even though the person is still alive. You may feel sad or angry about these changes. You might question why this has happened to your family member or friend. It can feel very unfair.

You may be thinking about the person’s illness progressing and getting worse. You might worry about specific things like if they will be in pain, if they will be able to speak or if they will remember who you are. These things can be painful and upsetting to think about. It can help to find out what care and support is available for them and for you.

Your life may have changed after your family member or friend became ill. It can have an effect on your social life, work life, hobbies and other roles and responsibilities.

You may feel angry or sad that you are not able to do the things you did before. And you might feel guilty or ashamed about feeling this way. But it's OK to miss the relationship you had before.

You may also feel lonely and sad because your relationship with the person has changed so much. They may have been someone that gave you love, support or friendship in your life before. It’s OK to miss the relationship you had before.

You may also find it difficult if your relationship has been challenging at times or you have unresolved issues. You might feel like there are things you want to say or understand, or things you regret from the past. It may be difficult to have these conversations if their condition affects their communication or understanding.

Other family members or friends might respond differently to the situation than you. They might not accept that the person is dying (sometimes called denial). They may be experiencing difficult emotions, like anger, or feeling low. This can cause tension or upset between family members or friends. Anticipatory grief affects everyone in a different way and they may have their own way of coping.

You may also want to protect other people from how you’re feeling or what is happening. You may not want to upset them. And you might worry about them and how they are coping. It’s important that you have someone to talk to about how you’re feeling too. It may help to tell people close to you how you’re feeling. Or you might find it helpful to find other people who you can talk to (see Other people who can listen below).

You may feel helpless about the situation. There is nothing you can do to change their illness, their symptoms or what will happen. This can make you feel upset, angry or frustrated.

You may also feel guilty if you’re not able to help them as much as you want to. People who need more care or treatment may go into a care home, hospice or hospital. This can be difficult for you if you know that’s not what they would have wanted. You might feel guilty about this.

Try to be kind to yourself – this is a difficult situation. You are doing your best.

Finding out that someone has an illness they will die from can be a huge shock. Sometimes it’s not clear whether the person will die from their illness or how long they might live for.

You may find yourself hoping for their recovery. At the same time, you may be trying to adjust to the reality that they might die. You might not want the person or other people to think you‘ve stopped hoping for a cure or recovery.

It is OK to feel both things at once. It can help to talk to someone about these things (see Talking about your feelings below).

You may worry about them dying and what it will be like. It can help to understand what might happen as their illness gets worse. You can ask their doctor or read our information.

Many people feel that the person dying would be a relief, so they no longer have to live like this. You might not want to see them in pain, distress or unable to live the life they want. You may also feel like your life has been on hold and want an end to the stress and uncertainty you are living with.

You may find yourself thinking that it would be better if the person dies soon. Some people feel guilty for having these thoughts and feel like they are willing the person to die. It is OK to have these thoughts – it's natural to want something to end when it has become so difficult. Try to be kind to yourself too. Remember that you are not responsible for their illness or them dying.

You might feel sad or worried when you think about a future without the person who is ill. You may worry about how you will cope without them.

Even if you’re trying to enjoy life and live in the present, you might feel sad. You may think that this will be the last time you do something together. For example, the last birthday, anniversary, holiday or special occasion. You might see other people enjoying life and be sad that you will not have those moments together in the future.

Many people feel sad when they think about special events in the future without the person who is going to die. And some people feel sad thinking about day-to-day life without the person – going for a walk, talking about your day or spending time together.

You may feel worried about how you will manage to get through these things without the person. You may find it too painful to imagine living without them.

Some people feel guilty about imagining a future without the person while the person is still alive. But many people do this to try to adapt to the reality of the person's death.

If you or someone you know is having suicidal thoughts, it’s important to get help. You can contact the Samaritans on 116 123. You can also book an appointment with your GP or, out of hours, call 111 (or, in Northern Ireland, your out of hours GP service). If you feel like you might harm yourself, call 999 or go to your nearest accident and emergency (A&E) department.

Your beliefs and values can affect how you experience anticipatory grief. For example, you might take comfort in your faith or your belief of what happens after someone dies. And you may have practical or emotional support from your community.

Some people feel isolated from other people when they are experiencing anticipatory grief. You might question the meaning or purpose of life. And you may find some of your thoughts are different to the beliefs or values of others. If you do not feel able to talk to people in your community, it can help to share how you feel with someone else (see Other people who can listen below).

When you’re experiencing anticipatory grief, it can be hard to think of any benefits to the situation. You might find that it’s only after the person has died that you can look back and process how you felt.

Some people feel that anticipatory grief helps them to prepare for and accept the person’s death. Accepting that your family member or friend will die may help you to:

Other people who have anticipatory grief may find it difficult to accept that the person is dying. And, whether or not you accept that they are dying, it can still feel overwhelming when they die (see How you might feel after the person dies below).

However you feel, anticipatory grief can be challenging. It may help to get some support to work through how you’re feeling and what might help (see What can help with anticipatory grief? below).

Many people who have anticipatory grief feel that they have already accepted that the person is dying. You might feel you’ve worked through some of your grief already and have prepared for their death.

But some people still feel overwhelmed by their grief after the person dies. This can be a surprise if you think you’ve already grieved. But the change of them not being there anymore can be a different type of grief.

Many people feel relieved when the person dies. This may be because it was difficult to see them ill. Some people feel guilty about this. But it’s OK to feel this way – it's understandable to want them to be free from pain or discomfort. You may also feel sad or shocked at the same time.

It can help to know that your feelings are normal. Many people feel anticipatory grief when they know that someone they care for might die. This is one of the hardest things to experience, so you might need a lot of support.

It can help to talk with any family or friends you have about how you feel. This might include the person who’s ill, if they are able and willing to talk about it. Sometimes it can be a relief to say how you feel out loud. You may worry about upsetting them or how they will react. But they may also be feeling the same way and find it helpful to talk to someone.

Sometimes, it can be hard to talk to family or friends. They may be coping with the situation in different ways. For example, they may find it hard to accept that the person will die. And you might find it difficult if there is already tension around caring responsibilities or other situations. Think about who may be able to listen without judgement and support you.

You might find it helpful to have support from your wider community. You might belong to a religious, cultural or another community group. There may be people who have had similar experiences and can understand how you might feel. Even within your community, people may have different beliefs and ways of dealing with things.

It can help to talk about your worries or feelings to someone who is not a family member or friend. You might find it helpful to talk to:

Counsellors or psychotherapists can help you to process your feelings. You do not have to wait until after the person dies to get this support. They can help you find ways of coping now and in the future.

To find a therapist:

These services are usually free, except for getting a private therapist.

Hospice services are sometimes only for people whose family member or friend has had care from the hospice.

If you’re already seeing a therapist, tell them how you feel and that you might have anticipatory grief.

You might find it easier to express your feelings in different ways. Some people have told us it helped them to:

You might want to keep these for yourself. Or, you might share them with others to help them understand what you’re going through.

You may be caring for the person as well as worrying about the future. If you’re often feeling sad or worried, this can make you feel more tired than normal. Anticipatory grief can affect your sleep, work, life and relationships. It can be hard to prioritise yourself during this time.

It can help to:

It can help to try to prepare for the future. You might want to find out more about:

Finding out more and making plans can help to make you feel more prepared. It can also help to open up conversations with other people and start to accept the reality of the situation.