Anticipatory Grief: The Goodbye That Begins While a Loved One Is Still Alive

What is anticipatory grief and why does it happen? Read about the grief, guilt and exhaustion of caring for a terminally ill loved one, and ways to cope.

The day you came out of the doctor's office, looking out of the window at the end of the corridor, you knew that something had already changed. Your mother is still in her room, still asking you "Have you eaten?"; yet with every smile and every word of hers, you think this could be the last. While spending time with her, part of you is already missing her. Anticipatory grief describes the grief reactions that begin while someone we love is still alive, during the period when we know they will die in the near future. In progressive illnesses such as cancer, advanced heart or lung failure, ALS (motor neurone disease) or dementia, relatives may begin grieving long before death. In this article I will look at why this experience is so complex, the feelings commonly experienced, and ways of making this difficult period a little more bearable.

What Is Anticipatory Grief?

Grief is usually thought of as a process that begins after death. Yet from the moment you learn that a loved one has a terminal illness, your mind begins to think about the loss, prepare for it and feel its pain. This is called "anticipatory" or "expected" grief.

This grief is not directed only at the future death. Many smaller losses are also experienced throughout the course of the illness:

• Your loved one no longer being able to walk, eat or speak as before,
• The end of things done together, of holidays and shared meals,
• Changes in their personality or memory, and, especially in illnesses such as dementia, their no longer recognising you,
• The loss of plans for the future and dreams of growing old together,
• Your own life, work and social relationships narrowing as a carer.

Anticipatory grief is a response to each of these losses. That is why it comes not as one wave but as a series of waves: every new diagnosis, every hospital admission, every deterioration can bring a new wave of grief.

How it differs from grief after death

Anticipatory grief does not replace grief after death, nor does it remove it. For some people, grief experienced beforehand can help them meet the death a little more prepared; others describe grief coming again, perhaps even more intensely, after the death. Both experiences are ordinary.

Signs of Anticipatory Grief: What Do Relatives of the Ill Feel?

The feelings relatives experience during this period often contradict one another. This contradiction can make it even harder for a person to understand themselves.

• Sadness and early longing: Missing your loved one while they are still beside you; experiencing the value of the moments spent together with painful awareness.
• Anxiety: Expecting bad news every time the phone rings, listening to the patient's breathing, getting up several times a night to check.
• Anger: At the illness, the doctors, relatives who don't help, even at the patient themselves.
• Guilt: Thoughts such as "I'm not doing enough", "Sometimes I want to get away from them" or "My patience is running out".
• Wishing it would end, followed by shame: At the end of a long and painful process, thinking "I don't want them to suffer any more" or "I want this burden to end", and then feeling bad about having this thought.
• Exhaustion: Sleeplessness, constant tiredness, neglecting your own health, having no time for anything.
• Emotional withdrawal: Distancing yourself emotionally from the patient without realising it, as a way of protecting yourself from the pain.

Let's say your father has been diagnosed with advanced lung cancer and the doctors have spoken to you in terms of months. You have taken leave from work and are going back and forth between the hospital and home. One evening, after putting him to bed, you sit alone in the kitchen and think "I wish this would end soon", and then you hate yourself for having this thought. Yet this thought usually arises not from a lack of love but from wanting both his pain and yours to end. Many people experiencing anticipatory grief recognise this contradiction.

Terminal Illness and the Family in Turkey: What Goes Unsaid

In our culture, talking about death is often seen as bad luck. Reactions such as "Touch wood" or "God forbid, don't say such things" make it hard for families to talk about the loss even in the face of a terminal illness. This silence can lead people to live through anticipatory grief alone.

Hiding the diagnosis from the patient: In many families, a cancer or other terminal diagnosis is hidden from the patient so as not to lower their spirits. This decision is taken out of love; but its consequences can be heavy. The patient senses that everyone around them is hiding something; the family, meanwhile, carries the burden of constantly playing a part. Opportunities to say goodbye, to seek and give forgiveness (helalleşmek, a traditional mutual absolving before death) and to talk about final wishes can be missed. How much of the diagnosis to share, and how, is a sensitive matter that should be considered together with the patient's own wishes and with the doctors.

Sharing the burden of care: Traditionally, care mostly falls to daughters, daughters-in-law or spouses. If the other siblings live in other cities or abroad, the person who takes on the care can become exhausted both physically and emotionally. The resentment "I'm here every day; they drop by at the bayram (religious holiday)" can damage sibling relationships. I have discussed this burden in detail in the article on caregiver burnout.

Crowded visits: Visiting the sick is an important form of solidarity in our culture. However, for a tired patient and an exhausted carer, constantly hosting visitors can be an additional burden. Limiting visits or gathering them into certain hours is not disrespectful but a way of protecting the patient and yourself.

A lack of information about palliative care: Many families think palliative care is only about the final days. Yet support can also be requested from palliative care teams at an early stage for pain control, breathlessness, nutrition and support for carers. Asking the patient's doctor about this can have a positive effect both on the patient's comfort and on the family's burden.

Dementia and Long Losses: Still Here, Yet Not

Dementia creates one of the most complex forms of anticipatory grief. Your loved one is physically beside you; but their memory, their personality and their relationship with you slowly fade. Your mother mistaking you for her sister, your father being unable to find the way to his own home, their not remembering your shared memories: each is like a loss lived anew every day.

In this situation, which professionals call "ambiguous loss", a person feels caught in between, with their loved one both here and not here. There is no death to grieve, yet the person you know is drifting further away. This process can last for years and can lead the carer to put their own life entirely on hold. You can find the particular difficulties of caring for a loved one with dementia in more detail in the article on being the relative of someone with dementia.

What Can You Do to Cope With Anticipatory Grief?

Focus on making the remaining time meaningful

We cannot prevent death; but we can have some say in how the remaining time is spent. Cooking a dish your loved one likes, looking at old photographs together, listening to the stories of their youth, recording their voice and listening together to their favourite folk song take this period beyond being merely the course of an illness.

Don't postpone what you want to say

Don't wait for the right moment to thank them, to apologise, to say "I love you" or to remember the past together. These conversations do not always have to be big and emotional; sometimes holding their hand and saying "I'm so glad you're my dad" is enough. Many relatives say that after the death they found the most comfort in having been able to have these conversations.

Learn the patient's wishes

At a suitable time, and to the extent the patient is ready, talking about their care preferences, where they want to be, whom they want to see and their wishes regarding their funeral or will offers both them and you a roadmap. These conversations do not invite death; on the contrary, they keep the patient's voice heard right up to the final period.

Going to meetings with the patient's doctor together with a relative if possible, and writing your questions down on a piece of paper beforehand, also makes things easier. Information heard in moments of intense anxiety is easily forgotten; taking notes reduces the extra anxiety created by later uncertainty about "What did the doctor say?"

Share the burden of care

Taking on everything by yourself both wears you out and lowers the quality of the care you give the patient. Give your siblings concrete tasks; even those far away can take responsibility for matters such as tracking medication, hospital appointments or financial support. Finding out about home care services, municipal support for patients' relatives and the social services units of healthcare institutions can also lighten your load.

Open small breathing spaces for yourself

A half-hour walk a day, talking to a friend on the phone or drinking a tea alone in the hospital garden is not selfish but necessary for you to be able to continue on this long road. A rested carer can be calmer and more present beside the person they are caring for.

Don't judge your contradictory feelings

Love and anger, longing and the wish for it to end, being felt at the same time is in the nature of anticipatory grief. Sharing these feelings with someone you trust reduces their power and protects you from shame. If you would like to understand the psychological process the patient themselves goes through after the diagnosis, the article on the psychology of cancer can also help.

Saying goodbye does not happen all at once; sometimes it stretches across months, and a small part of it is lived every day.

When Should You Seek Professional Support?

Accompanying a loved one with a terminal illness is one of the hardest experiences a person can go through, and there is no need to wait for a moment of crisis to seek support. It may be particularly helpful to see a professional in the following situations:

• If sleeplessness, intense anxiety or constant crying is markedly affecting your daily functioning,
• If guilt or thoughts of "wanting it to end" occupy you very intensely,
• If you notice that you are completely neglecting your own health, your work and your family,
• If you feel you are avoiding spending time with the patient or withdrawing emotionally,
• If family conflicts have made the caregiving process unbearable,
• If, in hopelessness, you think that living is meaningless or are having thoughts of harming yourself.

If you have thoughts of harming yourself or ending your life, call 112 (emergency services) in an emergency or go to the nearest emergency department. If sleep and anxiety symptoms are very intense, an assessment by a psychiatrist can also be included in the process.

How Is Anticipatory Grief Addressed in Therapy?

Therapy offers the patient's relative a space where they can talk about all their contradictory feelings without being judged. It can be one of the rare places where feelings that do not fit into the hospital or the home can be put into words.

In therapy, work generally focuses on the following:

• Naming and normalising feelings: Accepting that sadness, anger, guilt and the wish for relief can exist together.
• Working with anxiety: Developing skills for coping with constantly waiting for bad news, catastrophic scenarios and being on alert.
• Organising the burden of care: Setting boundaries, asking for help, planning how tasks are shared and making room for your own needs.
• Preparing for difficult conversations: Thinking together about how to approach matters such as sharing the diagnosis, discussing final wishes or saying goodbye.
• Preparing for after the death: Talking in advance about what you may go through after your loved one's death and identifying your sources of support.

Cognitive behavioural therapy is one of the approaches used to address patterns of anxiety and guilt during this process. For carers who cannot leave the patient's side for long, sessions can also be held online; you can find information about this on the online therapy page.

Frequently Asked Questions

I feel as though I'm waiting for my sick relative to die; am I a bad person?

No. In a long and painful process, the feeling "Let it end now" usually arises from wanting both your loved one's pain to end and your own burden to ease. This does not show that your love is lacking. Talking about this feeling with someone you trust or with a professional can ease the shame you are carrying.

Should we hide the diagnosis from them?

There is no single right answer to this decision, and the patient's personality, wishes and the course of the illness should be taken into account. However, it is important to know that hiding it can create a heavy burden for both the patient and the family, and can also limit opportunities to say goodbye. Discussing this with the patient's doctor and, if necessary, a mental health professional helps you make a more balanced decision.

Does anticipatory grief make grief after death easier?

For some people, grief experienced beforehand allows them to meet the death more prepared; others describe grief coming again, and intensely, after the death. Both experiences are ordinary. What matters is giving yourself time and space to grieve after the death too.

How should we explain their grandfather's illness to children?

It is important to explain the illness to children in simple, honest language suited to their age, using clear statements such as "Grandad is very ill; the doctors are doing everything they can, but he may not get better." Drawing pictures with their grandfather, writing him a letter or spending time together helps children say goodbye too. When their questions are not brushed aside, children can meet the loss with less fear.

• #anticipatory grief
• #caring for a sick relative
• #terminal illness
• #palliative care

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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