Anticipatory grief is the grief that can begin before someone dies. It can arrive when someone you love has a terminal illness, advanced cancer, dementia, organ failure, motor neurone disease, a progressive neurological condition, or any illness where the future feels uncertain or frightening.

You are not wrong for grieving before someone has died. Grief does not wait for death. It can begin the moment you understand that life may never look the same again.

You may feel sadness, fear, guilt, anger, numbness, hope, exhaustion, or even moments of unexpected relief. All of these feelings can sit beside love. None of them mean you have stopped caring.

This page is here to help you prepare gently, practically, and emotionally — at your own pace, in your own way.

What anticipatory grief can feel like

Anticipatory grief does not look the same for everyone. It is not one feeling — it is often many feelings layered together, arriving without warning and shifting over time.

It can include grieving the person as they were before illness took hold — missing who they used to be, the things you used to do together, or the future you expected to share. It can include fear of what is coming: the changes, the pain, the moment itself. It can include sadness about milestones they may not see, or that they may be present for only partially.

Carers in particular can experience deep exhaustion alongside grief — the physical and emotional weight of being constantly present, constantly responsible, and constantly watching someone they love change.

Guilt is common too. Guilt about wanting the suffering to end. Guilt about moments of frustration or impatience. Guilt about feeling your own grief when someone else is the one who is ill.

Many people describe feeling stuck between hope and fear — hoping for more time, while also knowing what is coming. Anger is also natural: at the illness, at the unfairness, at the health system, at the timing, or at nothing in particular.

Anticipatory grief can also bring isolation. Others may not understand why you are already grieving. Life may feel like it has already changed, even though the person is still here.

All of this is grief. All of it is real.

When long-term illness changes everything

A serious illness does not only affect the person who is ill. It can change the shape of an entire family, household, or whānau. Some of the most common experiences include:

What to expect as illness progresses

Every illness is different, and every person’s journey is their own. This page cannot tell you exactly what to expect — your care team is the right place for that conversation.

What most families find helpful is asking their care team honest questions early, so they can prepare gradually rather than being caught off guard. These questions might include:

• What changes in symptoms should we expect over the coming weeks or months?
• How will pain, breathlessness, or anxiety be managed?
• What changes to eating, drinking, or swallowing might happen?
• What changes to sleep and rest patterns might we see?
• How can we help keep them mobile and reduce falls risk?
• What might confusion, agitation, or restlessness look like, and how can we respond?
• What are the options for hospital, hospice, aged residential care, or staying at home?
• Who do we call after hours or on weekends if something changes?
• What signs might mean the person is nearing the end of life?

Palliative care teams and hospice nurses are experienced in having these conversations. You do not have to wait until things are urgent to ask.

Preparing emotionally

Preparing does not mean giving up. It can be one of the deepest ways of loving someone while they are still here.

• Say what matters while there is time. You do not need to do this perfectly — imperfect words are far better than none.
• If the person is able to talk about what is coming, ask what they want. What matters most to them? What are they afraid of? What would help?
• Make space for silence. Not every moment needs to be filled with words.
• Record what you can — stories, recipes, songs, photos, letters, or voice notes. These become gifts later.
• Talk about unfinished business gently, when the person is ready. Forgiveness, gratitude, love, regret — these are worth saying.
• Forgive yourself when conversations are not what you hoped. The effort still matters.
• Take breaks from illness talk. It is okay to watch something together, laugh, reminisce, or sit quietly in the ordinary.
• Let different family members grieve differently. There is no single right way, and comparing grief can create distance.
• Seek support for yourself — through counselling, spiritual care, kaumātua support, a trusted church community, or peer support groups.

Practical things to prepare

There is no pressure to do everything at once. Start with the next helpful step. Many families find that getting practical things in order actually reduces anxiety and gives them more space to be present.

• Advance care plan — what the person wants for their care and medical treatment
• Enduring Power of Attorney (EPA) — for property and personal care & welfare
• Will and other important legal documents
• Funeral, burial, or tangihanga wishes noted or discussed
• Passwords, important accounts, and digital access
• Bank, insurance, KiwiSaver, pension, mortgage, rent, and regular bills
• Care roster — who does what, and when
• Medication list, dosages, and prescribing doctor
• Emergency contacts and after-hours numbers
• GP, specialist, hospice, hospital, and pharmacy contacts in one place
• Preferred place of care noted where possible
• Work leave and family support arrangements
• Support plans for children, pets, and dependants

A social worker, hospice team member, or Citizens Advice Bureau can help with many of these practical steps. You do not need to figure them out alone.

Care options in New Zealand

Understanding the range of care options available can help families make more informed choices about where and how the person they love is cared for.

For more detail on palliative care support options in New Zealand, visit Healthify’s palliative care support page.

Assisted dying in New Zealand

Assisted dying is legal in New Zealand under the End of Life Choice Act 2019. It is one possible end-of-life option for some people who meet strict legal criteria. It is not available to everyone with a serious or terminal illness.

Who may be eligible

To be considered for assisted dying in New Zealand, a person must meet all of the following criteria:

• Aged 18 or older
• A New Zealand citizen or permanent resident
• Suffering from a terminal illness that is likely to end their life within six months (or within six months for a neurodegenerative condition)
• Experiencing a serious and ongoing decline in physical capability that cannot be reversed
• Experiencing unbearable suffering that cannot be relieved in a way they find tolerable
• Competent to make an informed decision about assisted dying

Important things to know

• A person is not eligible for assisted dying simply because of age, disability, dementia, or mental illness.
• Assisted dying cannot be requested through an advance care plan.
• The person must remain competent at the time assisted dying occurs.
• Two independent doctors must assess eligibility.
• Family and whānau may have strong, conflicting, or evolving feelings. Support for everyone involved remains important.

Official information

Coping when assisted dying is part of the conversation

When someone you love is considering or has chosen assisted dying, the emotional experience for family and whānau can be complicated and layered.

It is normal to feel conflicted. Some people feel relief that suffering may soon end. Others feel fear, guilt, anger, shock, sadness, or disagreement with the decision. These feelings can exist at the same time. None of them are wrong.

A person’s choice may be hard for whānau to understand, especially across generations, cultures, or faith traditions. Differences of opinion are common. Keeping conversations respectful and honest — even when difficult — protects relationships and gives the person who is ill the space to make their own choice.

Ask what the person wants from you. Do they want company? Conversation? Silence? Practical help? Your presence matters even when you do not know what to say.

Get support for yourself, even if you support their decision. Watching someone you love die — in any circumstances — is hard. You are allowed to struggle.

If there is conflict within the family, consider speaking with a counsellor, social worker, spiritual care worker, kaumātua, chaplain, mediator, or health professional who can support the whole whānau.

After the death, grief may feel more complicated than expected — layered with questions, relief, regret, or loss of the time you thought you might have. That does not mean you loved them any less. It means the situation was complex, and grief is reflecting that.

Questions to ask the care team

Asking questions is not a sign of weakness or being difficult. It is one of the most practical ways to care for the person you love and to prepare yourself.

• What changes should we expect, and over what kind of timeframe?
• Who do we call after hours if something changes?
• What support is available to help care for them at home?
• Can hospice or palliative care be involved, and how do we access that?
• What symptoms should we report quickly?
• What can we do if pain, anxiety, breathlessness, or agitation gets worse?
• What support is available for children or grandchildren in our family?
• What cultural or spiritual support can be included in their care?
• What happens if the person wants to discuss assisted dying?
• What bereavement support is available for our family after the death?

Write questions down as they come to you — even in the middle of the night. Bring them to appointments. Most care teams welcome this.

Supporting children and young people

Children and teenagers often know more than adults realise. They pick up on emotional atmosphere, notice physical changes, and overhear more than we intend. Being honest with them — in age-appropriate ways — is usually more helpful than trying to protect them from all of it.

• Use simple, honest language. Words like “died” and “dying” are clearer than “gone to sleep” or “passing.”
• Let children ask questions, even if you do not have all the answers. “I don’t know” is an honest and valid response.
• Reassure them clearly that they did not cause the illness — children sometimes fear this.
• Keep routines where possible — school, mealtimes, and familiar structure provide stability.
• Let teachers, school counsellors, or trusted adults know what is happening so they can support the child too.
• Offer choices around visiting, writing cards, drawing pictures, or having a chance to say goodbye in their own way.
• Teenagers may want more space or may seek information independently. Stay available without forcing conversation.

Looking after yourself as a carer or support person

Carers often put their own needs last. Over time, this can lead to exhaustion, burnout, illness, and a reduced capacity to give the care that matters most. Looking after yourself is not selfish — it is part of looking after the person you love.

• Eat simple, regular meals even when it feels impossible
• Sleep or rest when the person you are caring for is sleeping
• Accept practical help when it is offered — food, errands, company
• Take breaks from caregiving without guilt
• Keep a list of people who can step in so you can step away
• Talk to someone outside the immediate situation — a friend, counsellor, or support line
• Notice early signs of burnout: exhaustion, resentment, anxiety, or emotional numbness
• Ask your GP about respite care, carer support, or community services in your area
• Contact your local hospice — many provide carer support even when the person is not yet receiving hospice care

After the death

One thing many people are surprised to discover is that anticipatory grief does not stop grief after the death. Grief may still arrive as shock, numbness, relief, profound sadness, guilt, or exhaustion — even when you thought you had prepared.

The caring role may suddenly disappear. Days that were structured around medications, appointments, and the needs of the person you loved can become suddenly empty. This loss of role and purpose can be its own kind of grief.

The days and weeks after a death can feel intensely practical and strangely unreal at the same time. Be gentle with yourself. There is no correct way to feel, and no timeline you must follow.

Helpful links and support