Anticipatory grief: grieving before the death

“But he hasn’t died yet. So why does it feel as if I have already lost him?”

I have heard this question in versions that are strikingly alike. A daughter who drives her mother to chemotherapy, cries in the car park, then wipes her face and walks back up smiling. A husband who tells his wife with dementia the same things every evening, and who noticed one day that he had stopped talking with her and started talking at her. A father who was told what the doctors no longer expect from his child’s illness, and who has slept with his phone in his hand ever since.

All three shared something else: the conviction that what they felt was wrong. That they were grieving too early, and betraying the person still here.

What they describe is called anticipatory grief – grief that begins before the death. The psychiatrist Erich Lindemann first used the term in 1944, watching the wives of soldiers who had gone to war. Some had said goodbye so thoroughly that they could not find their way back into the marriage when the man returned. That first description already holds something later lost: anticipatory grief is not preparation for loss. It is loss itself, arriving in instalments.

What has already been lost

Saying you grieve for someone still alive sounds illogical. It is not. Take apart what having this person actually means, and you will see that much of it is already gone.

Gone is the mutual conversation – the kind where the other gives something back and asks how you are. Gone is your role: you are no longer the daughter your mother comforts, but the person carrying her fear. Gone is a future so obvious you never said it out loud: that he would see the children grow, that she would ring on your birthday. And gone is the ordinariness of time – instead of a week ahead, you have test results.

All of that is real loss. So the response to it is real grief, not a rehearsal for it.

Why it starts now

The nervous system is not good at telling apart a loss that is here from one that is coming. Attachment calms us when the other is available and raises an alarm when they are not. Someone with an illness that will not turn becomes unavailable in stages – as a conversation partner, then as support, then as someone who recognises you. The attachment system answers each step with the mixture it knows from after a death: restlessness, searching, tears, anger, sudden waves of tenderness.

Something else comes with it that is absent after a death: vigilance. While the illness lasts, the body may not let go. You sleep half-way, the phone by the bed, any odd sound brings you upright. That is the state I described in my post on how raised arousal eats into sleep. Grieving and standing guard at once is expensive – and it lasts months, not a week.

The mistaken comfort I hear most often

“At least I had time to prepare.” Almost everyone says it – usually because someone else said it to them first, and it sounds reasonable.

It sounds reasonable because it assumes grief is a container of fixed volume. Empty part of it in advance and there will be less later. That picture is comfortable and wrong.

What the research consistently shows is closer to the opposite. In 2016 a Danish team led by Mette Kjærgaard Nielsen reviewed the literature on carers’ grief before a loss and found that more intense grief beforehand predicts a harder course afterwards, not an easier one. Their later study of nearly three thousand relatives caring for someone dying of cancer confirmed it: those reporting severe distress beforehand were the worst off six months and three years later. Holly Prigerson’s group reached a similar conclusion – grief before a loss is a warning sign, not a safeguard.

This is not a reason to panic, but it is a reason to drop a comfort that does not hold. Grieving earlier paid nothing in advance. The sensible reading is simple: severe distress before a death usually means the bond was very close, the burden of care very heavy and the support very thin – and none of that disappears when the person dies.

Why it is also untrue that not knowing would be better

Someone might conclude that a sudden death is easier, since no grief precedes it. It does not follow. Sudden, unexpected death is one of the strongest predictors of a complicated course of grief, precisely because it takes away every chance of understanding and of saying goodbye.

What the time before a death allows is not less grief. It allows different things: to say what would otherwise stay unsaid; to make treatment decisions while the person can still take part; to tell someone what they meant to you and hear it back. A study by Alexi Wright and colleagues in JAMA found that relatives of patients whose doctors had discussed the end of life in good time reported less severe distress afterwards – not less grief, but less of the feeling of having been overtaken.

Time does not shorten grief. It can change how much of it stays unspoken.

Swinging between two worlds

In 1999 Margaret Stroebe and Henk Schut proposed the model I find most useful here – the dual process model. Instead of stages, they describe oscillation between two orientations: one turned towards the loss (crying, memories, sorting out the relationship), and one turned towards rebuilding life (work, children, bills, laughter, plans). Healthy grieving is not one or the other. It is the movement between them.

People caring for someone dying are often ashamed of the second mode. That they laughed during an episode of something. That they forgot in a meeting. That they wanted a whole day to themselves. Yet this swinging is exactly what makes it possible to last months – and it is no sign of not caring.

Exhaustion is not indifference

When an illness drags on, something often happens that frightens the family: numbness. They used to cry at every result; now they feel almost nothing. They visit, do what needs doing, and leave empty.

This is almost never a sign that they have stopped caring. It is a system exhausted by months on alert, and it overlaps with the signs of burnout: a cynicism unlike you, a mechanical feeling, the loss of pleasure in what used to carry you. Caring for someone dying is work. Research by Richard Schulz and colleagues showed that long-term care under high strain meaningfully raises the carer’s own physical health risk.

Numbness is not a sin, it is a bill. And the only thing that lowers it is relief from the load, not more willpower.

The thought nobody says out loud

One thing people tell me only at the third or fourth session goes roughly like this: “Sometimes I wish it were over.”

They say it quietly and then explain that they are not a monster. They are not. The thought has two sources, both human. One is compassion: I cannot bear watching the suffering. The other is exhaustion: I cannot bear this life any longer. Both are legitimate, and the second is the one people punish themselves for.

This is exactly where guilt appears – the kind that in the months afterwards turns into self-accusation. I have written about the difference between guilt that tells you something and guilt that only gnaws in my post on healthy and toxic guilt. Here a useful question is: did this thought harm anyone, or am I simply worn out?

What actually helps in this time

I will not offer a list of steps, because there are none. But a few things recur in my work as sensible.

Say what you want to say while he can still hear it. Not as a farewell speech, but as ordinary sentences spoken while the coffee is brewing. After a death, people regret the unsaid far more than the undone.

Let the relationship stay a relationship. If the person is still themselves, the illness need not occupy every conversation. An argument about politics is sometimes a bigger gift than another enquiry about symptoms.

Share the care, even if you think nobody else will do it properly. Nobody else will do it the same. They will do it well enough, and you will still exist in three months.

Keep something that is yours and has nothing to do with the illness: one class, one coffee, one evening. That is not escape, it is the other half of the swing. And be careful with alcohol and sleeping tablets as props – in this period a habit builds quickly and quietly.

Where my argument does not hold

Now the honest side. Everything above has limits, and some of them matter.

First, anticipatory grief is not obligatory. Some people spend months beside a dying relative and feel nothing beforehand that we would call grief – they function, organise, stay present, and feel it only later, or barely at all. George Bonanno has shown across several samples that the most common course after a loss is resilience, not collapse. The absence of grief beforehand is not coldness, and not denial that will take revenge later.

Second, the concept is easily misused. “At least you have time to prepare” becomes a way of telling a relative not to make a scene. With dementia something worse happens: because the grieving has supposedly started, people around sometimes behave as if the person were already dead and stop visiting. While he breathes, he is here.

Third, relief after the death is not necessarily a bad sign. Boerner, Schulz and Horowitz found that many relatives of people with dementia do better after the death than before – and that is no evidence of missing love. Relief and sorrow share a room easily; it is only hard for those watching from outside.

And fourth: none of this compares losses. There is no scale on which a sudden death is lighter than a long illness. Every such calculation is bad arithmetic and bad comfort.

When to look for help

There is no sharp line between grief before a loss and a state that needs professional care, but there are signs I would not wait out. If you sleep only a few hours and it has gone on for weeks. If your body is giving way. If you can no longer do what must be done, not for lack of time but because you cannot move. If the thought that it would be better if you were not here either comes more than once.

It also matters to tell grief and depression apart, since they do not need the same answer; I wrote about that in my post on how depression differs from sadness. And if all of this keeps you in constant self-blame, the first move is often self-compassion – not as a nice phrase, but as a skill that can be practised.

What to remember

Grief before a death is not a mistake and not a betrayal of the person still here. It is a response to losses that have already happened – of conversation, of role, of future, of ordinary certainty.

But it does not shorten the grief that comes later. There is no container you can partly empty in advance; research suggests that severe distress before a death predicts a harder course after it. That is not a curse, it is information: whoever is struggling now will need support afterwards too.

The time before a death is worth something else – that less is left unsaid and unfinished. That is reason enough to use it, even if it buys no discount later.

And swinging between tears and ordinary life is not inconsistency. It is how a person carries what cannot be carried in one piece.