Anticipatory grief: grieving someone who is still alive

What is anticipatory grief?

Anticipatory grief is grief that begins before the loss it belongs to. The person still rings on Sundays, or is still in the next room, and something in you has quietly begun to say goodbye.

What you feel is rarely plain sadness. Dread sits underneath it, and with the dread come guilt, irritation at the very person you are losing, and long flat stretches where you feel almost nothing at all. The body keeps its own account: sleep goes first, then any appetite for things that are not practical, and their name on the screen drops your stomach before you have had a thought about it.

Relief belongs here too, and it is the one nobody says out loud. Wanting the waiting to end is not the same as wanting the person to die, and most of my clients need that said plainly before they will say anything else. None of it waits for a prognosis. It starts wherever somebody you love is becoming unreachable while their life carries on.

Why does grieving early not make the loss easier?

Grieving early does not pay into an account you draw on later, and almost everybody arrives expecting that it will.

I hear that hope in how clients describe a long illness. They have done the crying, they have rehearsed the phone call, and they assume the day itself will therefore be survivable in a way it would not otherwise have been. When the day comes it is its own event. The grieving done beforehand turns out to have been grief for what had already gone, not an instalment paid against what is still to come.

This has been looked at directly. The assumption that grief work before a loss would ease bereavement afterwards was not confirmed; what went with a better outcome for carers was feeling prepared, and heavy grief before the death combined with feeling unprepared went with a harder time after it¹. Those are associations across groups of carers, and nobody in that work claims that grieving early causes anything. The reading I find more plausible is that somebody already under great strain before a death is still under it afterwards, which is an argument for having support now rather than a forecast of your own loss. Nothing here is a test, and none of it tells you what your loss will be like. Read more about complicated grief.

Is it possible to grieve someone who is not dying?

Yes. You grieve whenever somebody is present and unreachable at the same time. That shape has a name, ambiguous loss, and it is the loneliest version of this, because nobody sends sympathy for a loss with no date on it.

• Where it turns up. Dementia, addiction, a serious brain injury, an estrangement, and a relationship ending slowly while both people are still inside it.
• How ordinary it is. Most of the studies gathered in a review of family carers of people living with dementia found grief well before the death, and the carers reporting the most of it were spouses and those caring for somebody whose dementia had advanced².
• What that does not do. It describes patterns across carers. It says nothing about which way your own grief will go.
• Why it goes unrecognised. The people around you are waiting for an event before they will call it grief, so you grieve privately and describe it to yourself as stress.

Read more about growing apart in a relationship.

Why is it harder when they are far away?

It is harder at a distance because everything that would ordinarily absorb the grief is in another country. The rituals, the siblings and the small daily acts of care are there, and you are here, at work on a Tuesday, holding it through a phone.

Distance does 2 things at once and my clients feel both. It keeps you out of the rooms where grieving actually gets done, the kitchen, the car, the hundred small exchanges that carry it between people who are in it together. It also stands between you and the worst of it, so that an ordinary working day in Copenhagen holds you together in a way a bedside would not. That second part is the one clients are ashamed of, and they report it as evidence that they do not love the person enough.

What I work on is seldom the guilt itself. It is the arithmetic underneath it, where you weigh yourself against a brother who lives round the corner and come out short every time. My clinical judgement is that the distance has to be grieved as a loss of its own before any practical decision about visits gets made well. Read more about homesickness.

How do you carry anticipatory grief while there is still time?

You carry it by staying in contact with the person, stepping out of it deliberately at intervals, and saying the things while there is still somebody there to hear them. Bracing yourself does nothing.

• Watch for the pulling away. Fewer visits, shorter calls and a voice that stays practical will protect you for a while, and they cost you the part you do not get back.
• Count time away as part of the task. Needing a break from the illness and wanting to be there for them pull against each other the whole way through, and in my experience taking the break is not desertion.
• Ask what is coming. Ask for a plain picture of what the next months are likely to involve, because dread with a shape is easier to hold than dread without one.
• Say one thing. Pick the one thing you would regret not having said, and say it within the fortnight, clumsily, in a single sentence.
• When they no longer take it in. Say it instead to somebody who knows them well, because it still needs to leave you.
• From far away. Work out what is possible from where you live, do that, and stop auditing yourself against the sibling round the corner.

Those steps assume the pulling away has not already closed over. They do not reach you if the visits have gone quiet, if every sentence you plan stays unsaid, or if the dread has taken over the hours when you are not with them. Where that is where you are, reading will not shift it and individual work with a therapist is the next step. Nothing on this page is a test or an assessment of you. I work with clients in Copenhagen in English, including people carrying this across a border, and you are welcome to begin with a session or with the free 30-minute call.

Questions people ask

Is it too early to start therapy while the person is still alive?

No, and before the death is usually the better moment to begin. How somebody is faring before a loss tends to carry into how they fare after it.

What happens in therapy for anticipatory grief?

I work on what you are carrying now, what you still want to say, and what the pulling away is protecting you from. It is practical as well as emotional, because decisions about visits and care are part of the grief.

Should I come on my own or bring my partner?

Come on your own if the grief is yours to carry, and bring your partner if the strain is landing on the relationship. Clients often start individually and bring a partner in later for a few sessions.

I am the one abroad while my family is at home. Is therapy here still the right place for this?

Yes, and the distance is usually one of the first things I take up. Carrying a parent who is failing across a border has its own difficulties, and they are workable from here.

How long would I need to come for?

I will not put a number on it, because grief does not run to a timetable. Some clients come for a handful of sessions around a decision, and others stay through the illness and beyond it.

If you are grieving someone who is still here, I make room for you to feel it without guilt in anticipatory grief therapy.

Sources

1. Nielsen, M. K. et al., Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement, Clinical Psychology Review, 2016
2. Crawley, S., Sampson, E. L., Moore, K. J., Kupeli, N. and West, E., Grief in family carers of people living with dementia: a systematic review, International Psychogeriatrics, 2023

How this article was written: I choose the subject and the angle. An AI assistant researches and drafts. I read the draft, correct and improve it and stand behind every clinical statement. The professional and clinical judgement is mine.