It is possible to feel grief even though someone person is still alive. For example, a carer might feel grief 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. This is called ‘anticipatory grief’.

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

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

What are the symptoms of anticipatory grief?

People who experience anticipatory grief may have a wide range of emotions, such as loss, dread, guilt and anxiety. Finding out that someone you care for has a terminal illness can leave you feeling powerless and devastated.

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.

What causes anticipatory grief?

The grief may not initially be for the person who is ill, but for the life you currently lead.

If you become a carer, it 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.

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.

Dealing with anticipatory grief

Everyone reacts differently, and it's good to accept that your coping method is unique.

If you experience anticipatory 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. It's important to find someone to support you.

Where to find support

These resources can help people experiencing grief:

• headspace
• Beyond Blue — call 1300 22 4636
• Australian Centre for Grief and Bereavement — bereavement counselling and support services. Call 1800 642 066
• Lifeline Australia — call 13 11 14 or read the factsheet on grief and loss

If you need to know more about grief, and to get advice on what to do next, you can also call healthdirect on 1800 022 222 to speak with a registered nurse, 24 hours, 7 days a week (known as NURSE-ON-CALL in Victoria).