Terminal conditions and grief

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Grief before death – understanding anticipatory grief

What is grief?

Grief is a natural emotional response to loss. Grieving is a process that can help you come to terms with a loss, such as when a loved one dies.

Everyone experiences grief differently. Your experience of grief and how you cope with it will depend on different factors, including your age, your previous experiences with grief and your spiritual or religious views on life and death.

How you respond to your feelings of grief might also reflect the type of relationship you share with your loved one, as well as how you think your life might change after your loved one dies.

Some feelings you might experience while grieving are:

  • numbness or disbelief
  • guilt
  • sadness
  • anger at yourself
  • anger at the person who died
  • anxiety
  • relief
  • fear of what is to come
  • mood swings

These are all natural reactions to a significant loss. Feelings of grief can be intense and may take months or longer to settle, so it’s important to be patient and give yourself the time you need.

Many feelings associated with grief are similar to those experienced by people with depression. If feelings of grief are very intense, last for a long time and interfere with daily life, speak to your doctor or a mental health professional.

What is anticipatory grief?

Grief is often understood to happen after a loss occurs, for example after a loved one dies. People expecting a loss may also experience anticipatory grief.

This means experiencing the emotions associated with grief before the expected loss actually happens. Rather than grieving the loss of a person, anticipatory grief might be better understood as grieving the loss of experiences, possibilities or an imagined future together.

When facing a significant loss, like the death of a loved one, it is natural to feel many strong emotions. It’s also normal to think about what your life will be like after they have died and how you will cope. This doesn’t mean you have given up on the person or that you don’t care for them.

Who experiences anticipatory grief?

People diagnosed with a terminal illness and those facing the death of a loved one may experience anticipatory grief.

If you have been diagnosed with a terminal illness, you may experience many emotions including shock, fear and sadness. You may feel grief for events you won’t be around for, such as weddings, graduations or births. You may be grieving lost opportunities or experiences you’ll miss — even small ones, like the pleasure of the sunshine or a hot cup of coffee.

If someone you love is facing a terminal illness, it is common to experience anticipatory grief in the months, weeks and days before death. You may feel grief over the same things they do, or your anticipatory grief might take a completely different form, as your experience of loss will be different.

If your loved one experiences confusion or a reduced state of consciousness for a long time, for example if they develop dementia, you may also experience anticipatory grief. This could be because you feel that the person you knew is already gone, even if they are still physically there.

If your loved one has a decline in physical health or mobility, you may experience anticipatory grief as your opportunities to share experiences, like hobbies, holidays or events will be diminished.

How is anticipatory grief different from grief after death?

Anticipatory grief may be related to feelings of loss for the life you currently lead, rather than the person who is unwell.

This is especially true if you spend a lot of time caring for the person. You may miss activities you used to enjoy together and feel grief about the change in your relationship.

The nature of your relationship may change as you take on a carer’s role, or become the one being cared for. It may take some time to adjust to and accept these changes. It’s important to remember that feelings associated with grief before death can be strong and overwhelming and that support is available to help you cope.

What are the complications of anticipatory grief?

Anticipatory grief is not as widely understood or discussed as grief after death. This means that people struggling with anticipatory grief may feel guilty or ashamed of these feelings and might not seek support to help them cope.

You or your loved one may not even be aware that what you are going through is anticipatory grief. Feelings of grief before death are normal — it’s important to recognise them, and to talk about them.

Experiencing anticipatory grief doesn’t always mean that you will grieve your loved one any less after they are gone. In some cases, carers of people who are terminally ill become closer to their loved one, making their feelings of grief after death even more intense.

Other people found that anticipatory grief helped them to process their grief before death and that they feel a sense of relief or closure after the person dies. It’s also possible for feelings of grief to change and become more or less intense over time.

There is no right or wrong way to grieve. Whatever your feelings and whether they occur before or after you lose someone you care about, it’s important to accept how you feel, find ways to cope and ask for help when you need it.

Seeking support for grief before death may make it easier to process the feelings you experience after the person dies.

How can I manage anticipatory grief?

There are many ways to help you manage feelings of anticipatory grief, such as:

  • Find someone to talk to about your feelings. This may be a close friend or family member, social worker or member of your (or your loved one’s) medical team. You may also choose to speak to a professional counsellor or psychologist.
  • Keep a journal to record and work through your feelings.
  • Try to maintain a healthy, balanced diet.
  • Limit the amount of caffeine and alcohol you consume.
  • Exercise can help reduce feelings of anger and improve your mood.
  • Try meditation or relaxation exercises. These can also help any sleep problems you may be having.
  • Seek advice from your doctor for other symptoms you may be experiencing, such as sleep, mood or appetite problems.

Grief, including anticipatory grief, can be intense and overwhelming. If you are struggling with intense feelings lasting longer than a few weeks, speak to your doctor. They can provide advice, support and a referral to a mental health professional.a

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