Grieving somebody who is still alive is common, it has been studied for decades, and it does not mean you have given up on them. What it also does not do, despite being almost universally believed, is get the grief out of the way early.
That second point is the one worth having, because a great deal of advice given to families rests on the opposite assumption.
What the research found
A systematic review examined 34 caregiver studies, the majority of them longitudinal, following people through end-of-life caregiving and into bereavement.
High levels of grief during caregiving were associated with poor bereavement outcomes, including prolonged grief. [nielsen-2016-preloss] Not with an easier time afterwards. Not with having done the work in advance.
Read that carefully, because it is easy to turn into something frightening that it does not say. This is an association, and the likeliest interpretation is not that grieving early causes later difficulty. It is that intense grief before a death marks out the people who are going to find the loss hardest, for all the reasons that would have applied anyway: the closeness of the relationship, what else is happening, what support exists.
The practical consequence is the same either way. Grief is not a quantity you can pay down ahead of time.
The review also proposed dropping the word anticipatory in favour of pre-loss grief, on the grounds that “anticipatory” smuggles in a claim about function, whereas “pre-loss” only describes when it happens. [nielsen-2016-preloss] That is a small change of language that removes the assumption at the root of most of the bad advice.
The distinction that actually helps
Here is the part with a usable action attached to it.
The same review separates grief from preparedness, and they are not the same thing. Preparedness is practical and psychological readiness for what is coming. It was high grief combined with low preparedness that was associated with the worst bereavement outcomes. [nielsen-2016-preloss]
So the target is not feeling less. It is being more prepared, and unlike the intensity of grief, preparedness is something you can deliberately build.
A schematic contrast of grief and preparedness as separated in the systematic review cited. Not measured data from that review.
The left-hand bar in each view is the whole argument. Both matter for what happens afterwards; only one of them is something you can do anything about.
What it actually feels like
The description people give is rarely dramatic and rarely tidy.
It arrives in waves attached to specific losses that have already happened, rather than to the death that has not. The last time they cooked. The point at which the conversations changed. The moment somebody stopped recognising you.
That is why reminding yourself that they are still here does not help. You are not grieving a future event by mistake. You are grieving something real that has already gone.
In dementia this is especially sharp, because the person is present and the relationship is not. People describe visiting somebody they love and grieving them on the way home, and then feeling monstrous for it.
Alongside it sits a set of feelings people are reluctant to admit to: exhaustion, resentment at the demands of caring, and, in long illnesses, the wish for it to be over. That last one causes more private guilt than anything else here, and it is close to universal among people caring for somebody who is suffering. Wanting the suffering to end is not wanting them dead.
What is going on for you
Tick anything true. This is a reflection prompt rather than a test, it produces no diagnosis, and none of these are things to feel bad about.
0 of 8 ticked
Items four to six are preparedness, and they are the part the evidence suggests is worth addressing. They are also the ones that feel morbid to touch and are therefore left. The last two are worth taking seriously in their own right: carers get ill, and the exhaustion is not a character flaw.
Grieving in advance is common and it is not a sign you have given up on anyone. If the guilt is the loudest part, it usually shrinks considerably once it has been said out loud to one person.
Nothing here matched. If the loss has already happened, our guide to grief covers what follows and what the evidence says about how it moves.
No screener on this site measures grief, and that is deliberate: grief is not a disorder and scoring it invites the wrong conclusion. The hub lists what we do cover, and the depression screener is sometimes the relevant one, since caring for somebody dying is a well-recognised route into depression.
What helps
Build preparedness, not composure. Ask the clinical team what is actually likely, and over roughly what time. People avoid that question because it feels like inviting the outcome, and not knowing is worse than any answer.
Do the practical things while there is time. Wills, wishes, what they want and where. Every one of these is easier now than later, and doing them is not giving up.
Have the conversation you are putting off. The unsaid thing is a reliable feature of difficult bereavements, and the window for it is now.
Stop auditing whether your feelings are appropriate. Grief, resentment, relief and love all being present at once is the ordinary condition of caring for somebody who is dying, not a sign that something is wrong with you.
Tell one person how you are actually doing. Carers are chronically unasked, because everyone’s attention is correctly on the patient. That is precisely why it has to be volunteered.
Look after the basics. Sleep, food, and some contact with your own life. This is not self-indulgence; carer health is one of the strongest predictors of what happens after.
Our guide to what the five stages model gets wrong is worth reading before somebody offers you a stage you are supposed to be in, and prolonged grief disorder covers what it means when grief after a death does not move at all.
When to seek help
Speak to a GP, or to the palliative or hospice team, if the grief is preventing you functioning day to day, if you are not sleeping, if you have withdrawn from everyone, or if the guilt has become constant rather than occasional.
Hospice and palliative services support families, not only patients, and that support is available before a death rather than only after it. Most people do not know this and do not ask.
Two UK lines cover this specifically, and neither is open around the clock, which is worth knowing before you need one:
- Marie Curie, free on 0800 090 2309, for anyone affected by a terminal illness including carers. Open 8am to 6pm Monday to Friday and 10am to 4pm at weekends.
- Cruse Bereavement Support, free on 0808 808 1677, which supports people grieving before a death as well as after one. Open 9.30am to 5pm Monday, Wednesday, Thursday and Friday, 1pm to 8pm on Tuesday, and closed at weekends.
Grief that remains intense and disabling long after a death has specific treatments, which is worth knowing rather than enduring. [shear-2015-grief-ag]
Go urgently if you have thoughts of harming yourself. In the UK, Samaritans is free on 116 123 at any hour.
How MyFreud can help
Caring for somebody is measured in months, and from inside it the weeks stop being distinguishable, which is how people miss that they are running on nothing. MyFreud gives you daily mood tracking that takes seconds, so there is a record of how you are actually doing rather than only how the person you are caring for is.
Download MyFreud and start today: App Store or Google Play.