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Grief before death – understanding anticipatory grief

Carers often feel grief even though the person they're caring for is still alive. This could happen if the person being cared for has a life-limiting condition (a condition that has no reasonable hope of a cure), or their personality has been affected by their illness.

Although not everyone experiences this 'anticipatory grief', people who do can feel the same emotions and sense of mourning as if the person had actually died.

You may have a wide range of emotions, such as loss, dread, guilt and anxiety. Everyone reacts differently, and it's good to accept that your coping method is unique.

The grief you might experience may not initially be for the person you care for, but for the life you currently lead. Becoming a carer can change your life dramatically, and you may feel like you've lost some of your freedom or social life.

The extra responsibility, and not being able to do anything without planning, can be stressful. You might feel guilty about feeling this way, but it's a natural reaction to such a big change in your life.

Grieving before a person dies doesn't necessarily mean that you won't grieve when they pass away. Everyone reacts differently to these circumstances. While some people feel prepared for the death and have closure, others may start the grieving process all over again.

If you experience pre-death grief, it's vital for you to talk to someone.

Dealing with conditions that affect a person's personality and memory can be very traumatic, particularly if you're caring for a relative or close friend.

Many carers find that they grieve for the loss of the person they once were. You might grieve for the memories that you have together, which the cared-for person will forget. You may grieve for the changes to their personality or for any future plans that they may no longer be able to carry out. You may feel conflicting emotions as the person you look after loses their mental functions or stops recognising you.

Terminal conditions

Finding out that someone you care for has a terminal disease can leave you feeling powerless and devastated.

If you experience pre-death grief, it's just as vital for you to talk to someone and feel supported as it is when someone has already died. You might find that it helps to talk to friends and family, or the person you care for. A long illness means both of you have time to slowly prepare for the death, to say what you want to say or to share memories. One idea is to write about what the person has meant to you and then read it aloud to them.

You might also consider talking to a counsellor. It can help to discuss your feelings with someone who is objective and doesn't have emotional ties to the situation. This can help, particularly if the person you care for is in denial about their condition. The counsellor can talk to you about your feelings, suggest ways that you can help the person being cared for, and discuss the difficult post-death decisions that you may need to make, such as organ donation.

Bottling up your emotions can leave you feeling overwhelmed and, in some cases, affect your health. So it's important to find someone to support you.

Source: NHS Choices, UK (Grief before death)

Last reviewed: October 2016

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