Grief is often associated with the moment a loved one, a beloved pet or a relationship or valued career actually dies or comes to an end. But sometimes grief begins much earlier. Anticipatory grief is the grief experienced in expectation of an impending loss. It can be felt intensely by those who love and care for their person, animal, career or relationship that is coming to an end.

For families living alongside a terminal illness, anticipatory grief can be deeply painful and complicated. You may be grieving the person you love while they are still sitting beside you. You may grieve changes in personality, independence (yours and theirs), communication, shared activities, and/or the future you had imagined together.

It is important to understand that anticipatory grief does not mean you have somehow “done your grieving already.”

One of the unhelpful ideas surrounding anticipatory grief is that because you have had time to prepare, the eventual death will be easier. It doesn’t necessarily work that way.

Grief before death and grief after death are not simply one fixed amount that can be completed in advance.

The exhaustion of a long goodbye

Anticipatory grief can be particularly exhausting when an illness progresses over many years. Conditions such as Alzheimer’s or Parkinson’s disease can involve slow, cumulative losses: abilities change, roles change, relationships change, and the person you knew may gradually become less recognisable.

It is like a long, slow goodbye.

And sometimes there is guilt: I just want this to end. I’m so tired. I can’t bear this anymore.

These thoughts do not mean you love the person any less or that you are a bad person. It just signals how caring for someone through a terminal or progressive illness can bring significant emotional and physical fatigue with it.

What can support anticipatory grieving?

There is no right way to navigate anticipatory loss. Each person’s journey will be different because they are unique and their relationship with their person is unique. But it can help to give yourself permission to acknowledge what is happening.

  • Talk with someone safe—a counsellor, trusted friend, pastor, spiritual director or support group.
  • Accept what you cannot change
  • Have every conversation possible and needed
  • If possible, have your loved one prepare an Advanced Care Plan so that you know their wishes.
  • Make space to name the losses you are experiencing.
  • Create sacred and supportive rituals for yourself (eg. art, music, nature, prayer,gardens)
  • Rest when you can. You may need to place your loved one in respite care at times.
  • Seek out practical help and support.
  • Take radical steps towards caring for yourself alongside caring for your loved one. This is not abandoning your loved one; it helps you continue with the demands of an incredibly difficult season.

What can you say to someone experiencing anticipatory loss?

Often, the most helpful words are simple:

  • “I’m here with you. You don’t have to go through this alone.”
  • “You don’t have to be positive with me.”
  • “It makes sense that you’re exhausted.”
  • “What are you finding hardest at the moment?”
  • “Would you like me to listen, pray with you, or help practically?”
  • “You can love someone deeply and still feel tired, angry or overwhelmed.”
  • “You are doing so well in such a difficult season”.

Anticipatory grieving helps you to know that death is coming, to prepare as much as you can – to have the conversations, consider preparations, make precious memories and say your sacred goodbyes.

But it is a fallacy that anticipatory grief will somehow soften the blow when your loved one finally takes their last breath.

After a long illness, there may be relief that their suffering has ended and that you are released. Yet alongside that relief, there can be profoundly deep and painful sorrow.

The finality of death can still feel like a sucker punch to the soul, because grieving the losses along the way is not the same as experiencing the reality of their physical absence.

You may have been grieving for months or years, but you are still most likely going to feel the shock waves of enormous pain and sorrow when they actually die, or something precious comes to an end for you. This is not a failure of faith or preparation—it is the cost of caring for, valuing and loving someone or something deeply. It is one of the ways love responds when someone or something precious is slowly, painfully, and profoundly changing.

Go gently. Don’t be too surprised at the intensity of your sorrow. You are now in the next season of grief, and it will demand just as much, possibly more of you in some ways. Give yourself time to grieve well. Create sacred space for your grief. Rest, rest and rest some more as you can.

 

And remember, you do not have to walk through difficult seasons alone.

God’s presence remains constant, and “we do not grieve like the rest… who have no hope.” (1 Thessalonians 4:13 (NIV))

Our grief can be comforted and held alongside the hope of resurrection and eternal life in Christ. Yet, our grief can still be intensely deep, raw, disorientating and painful. Please reach out if you need extra support.

From my heart to yours.