Anticipatory Grief

Someone you love is very ill, has dementia, or is near the end of life, and you are already grieving. You may feel sadness, dread, and sometimes a wish for it to be over, followed by guilt. This is called anticipatory grief, and it is a normal response to a long goodbye.

What is happening

Anticipatory grief is the grief that starts before a death. It can come with a terminal diagnosis, a slow illness like dementia or motor neurone disease, or when an older relative is fading. You may be grieving the future you will not have together, the person they used to be, and the role you have lost, while still caring for them every day.

It is common to feel pulled in two directions: wanting every moment with them, and wanting their suffering, and yours, to end. Wishing for an end to suffering is not the same as wishing someone dead. Most carers feel it at some point.

Anticipatory grief can also be a time of meaning. Families may have important conversations, reconcile, say thank you, and make plans together. Some families call elders, a priest, imam, pastor or traditional healer, or begin rituals that bring peace. Your loved one may want to talk about their wishes for care, the funeral and their affairs. Having these conversations, gently and in your own way, can bring relief later. It does not mean you will not grieve after the death, but some people find it helps them feel more prepared.

Signs to notice

• Feeling sad, tearful or numb while still caring for them
• Imagining the death or funeral, then feeling guilty
• Pulling back emotionally to protect yourself
• Exhaustion from caring and worrying at the same time
• Irritability with family who visit rarely or disagree about care
• Difficulty concentrating at work

30-second self-check

Answer yes or no. Go with your first honest answer.

• Do you feel sad or anxious about the coming loss most of the day?
• Do you feel guilty for wishing it would be over?
• Are there important conversations you want to have but cannot start?
• Are you exhausted from caring and worrying?
• Is family conflict about care or plans adding to the strain?
• Do you feel you have no one to talk to about what is happening?

0-1 yes: You are grieving in a normal way. Make space for both caring and your own feelings.
2-3 yes: Anticipatory grief is weighing on you. A counsellor or hospice team can help you prepare.
4 or more yes: You are carrying a lot. Please reach out for support now, before the death, not only after.

What you can do next

• Today: Tell someone close to you what you are feeling, including the difficult parts.
• This week: Ask the medical or hospice team what to expect in the coming weeks or months, so you are less surprised.
• This month: If your loved one is able, talk about their wishes: care, the funeral, their will, and what matters to them. Our article on preparing for the end of life can guide you.
• Spend time doing ordinary things together too, like music, prayer, photos or old stories.

Your tool

Grief Self-Check - a private check that helps you see how grief and worry are affecting you now, with next steps for this stage.

When to get professional help

Get help if you feel overwhelmed most days, if your sleep and health are breaking down, or if family conflict is making the time harder. Hospice and palliative care teams often offer counselling to families before and after a death.
Who can help: counsellor, psychologist, grief specialist, social worker, palliative care nurse

Getting help in South Africa

The Hospice Palliative Care Association of South Africa can help you find a hospice, many of which support families at home. CANSA (cansa.org.za) supports families facing cancer. The Cleared Mind 24-hour Careline on 0800 212 146 can connect you to a counsellor. Your faith community can also walk with you and your loved one through this time.