Prichard Colón, a Puerto Rican boxer, was catastrophically injured in a fight in 2015 at twenty-three, and lived for almost eleven years afterwards needing constant care. He died this week at thirty-three. His family spent those eleven years in a situation that has a name, that almost nobody uses, and that describes a great many more people than boxing: ambiguous loss.
What the term means
It is grief for somebody who has not died. The concept was developed to cover two situations that look opposite and behave the same way: a person who is physically absent but psychologically present, such as a missing person, and a person who is physically present but psychologically absent, such as after severe brain injury or in advanced dementia. [boss-book]
The defining feature is not severity. It is the absence of resolution. Ordinary grief is terrible and it has a shape: something happened, on a date, and there is a widely understood process afterwards. Ambiguous loss has no date, no confirmation and no agreed moment at which something was lost. It simply continues.
That is why it affects so many people who would never describe themselves as grieving. Families of people with dementia, with severe brain injury, in prolonged disorders of consciousness, and in the grip of addiction that has changed somebody past recognition are all in it.
Why it is harder than a bereavement
Because nothing about it is recognised, and the support systems for grief are all triggered by a death.
| A death gives you | An ambiguous loss gives you |
|---|---|
| A date, and a fact everybody agrees on | No moment at which anything is agreed to have happened |
| A funeral, and a role at it | No ritual of any kind |
| Time off work, and people bringing food | An expectation that you continue as normal, indefinitely |
| Permission to grieve | Being told grieving is premature, because they are still here |
| Support that arrives automatically | Support that fades within months while nothing has changed |
The right-hand column is the whole problem. It is not that these families feel more; it is that they feel it without any of the machinery a society has built for feeling it, and for years rather than months.
The practical consequence is exhaustion of a specific kind. Care continues, hope is required, grief is not permitted, and none of it has an end date to organise around.
The contradictory advice
People close to the family will tell them to keep hoping and never give up. Other people, sometimes the same week, will tell them to accept it and move on. Both are offered kindly and both demand something the situation does not allow, which is resolution. [boss-theory]
Receiving both is worse than receiving either. It teaches a family that they are getting it wrong in whichever direction they lean, and the most common result is that they stop talking about it. That silence is the thing that turns a hard situation into an isolating one, and it is largely avoidable.
The more useful stance, and the one the research points at, is that both things are true at once. The person is gone and the person is still here. It is not a contradiction to be resolved; it is the accurate description of the situation, and being allowed to say it is a large part of what helps.
Does this describe where you are?
For anybody caring for or grieving someone who has not died. Tick anything true. This is a reflection prompt rather than a test, and it produces no diagnosis.
0 of 6 ticked
What you are describing is ambiguous loss, and almost none of what makes it unbearable is about the person you are caring for. It is the lack of recognition, the contradictory advice and the silence. The single highest-value step is finding other people in the same situation rather than people offering resolution, because they are the only ones who will not flinch at the fifth and sixth items on this list.
The items about having grieved someone still alive, and about thinking of their death, are the two people most reliably keep to themselves, and they are the two that lose most of their weight when spoken. Neither is a sign of anything wrong with you. A therapist who works with grief will have heard both many times.
Nothing here matched. If you are supporting somebody who is in this position, the most useful thing you can offer is not encouragement and not acceptance, but continuing to ask, long after everybody else has stopped.
When it finally ends
The second grief is frequently complicated by relief, and by the guilt that follows relief immediately.
This is worth stating plainly because families expect the death to be simpler than the years before it, and it often is not. Relief after a long ambiguous loss is a response to the ending of an unresolvable situation. It is not a measure of love, and it does not mean any part of you wanted this. It arrives alongside grief rather than instead of it.
The guilt is the part that lasts, and it is almost entirely made of not being able to say the relief out loud. Families who tell one person usually find it deflates. Families who never do can carry it for decades, and it is a common thing to find at the centre of grief that has not moved years later. Our article on prolonged grief disorder covers when grief after a death has become something that needs treatment in its own right. [apa-pgd-ambiguous]
There is also a strange practical emptiness. Years of caring, appointments, advocacy and vigilance stop in a single day, and what is left is a shape of a life with the central activity removed. That is its own adjustment and it catches people who were braced for the sadness but not for the vacancy.
What helps
Naming it is the first thing and it is not a small thing. A great deal of the distress comes from having no word for the situation and therefore concluding the problem is you: that you are coping badly, or grieving wrongly, or not hopeful enough.
Then three things. Hold both truths rather than choosing, since choosing is what everybody advises and neither choice is available. Build your own markers, because none are provided: an anniversary that is acknowledged, a way of talking about who they were that does not require the past tense to be justified. And find people in the same position, who will not offer resolution and will not flinch, which the people who love you most often cannot help doing.
Our grief guide covers the wider picture, and our guides to the stages of grief, which covers why that model fits this situation particularly badly, and to collective grief cover the surrounding ground.
When to seek help
Speak to a doctor or a therapist if you are the one providing care and your own sleep, health or mood has been degrading over months, which is close to universal in this situation and almost never reported. Carers tend to present when something has already broken, and the appointment is far more useful earlier.
Go sooner if you cannot talk to anybody about it, if you are drinking more, or if thoughts about the person’s death have become frequent and are frightening you. Ask specifically for somebody who works with grief and with carers, and use the phrase ambiguous loss, because it is recognised and it will shorten the conversation considerably.
Contact your local emergency services or a crisis helpline if you feel unsafe or have thoughts of harming yourself.
How MyFreud can help
MyFreud is a mobile app that helps you find solutions to problems that have affected your mind and productivity. Live coaching sessions give you somewhere to say the parts that cannot be said to family, which in this situation is most of the hardest material, each one ends with an actionable plan rather than advice to stay strong, daily tracking shows your own health drifting while your attention is entirely on somebody else, and the notepad is where the things you cannot say out loud can at least be written down.
Download MyFreud and start today: App Store or Google Play.