When we talk about loss, we usually think about death. Someone dies, and the world understands that something has ended. There is space to grieve, words to use and rituals that help mark what has happened.
But some losses do not have a clear ending. The person is still alive. Still present. And yet, something essential has changed. This kind of loss is called ambiguous loss, and it can be one of the hardest losses to live with.
Ambiguous loss happens when someone is physically here, but emotionally or mentally no longer the same. This is common in dementia, brain injury, serious mental illness, addiction or long-term illness. You may still see the person, care for them, love them deeply and at the same time feel that you have already lost them.
Many people carry this quietly, unsure how to talk about it or whether they are even allowed to feel this way.
Why this kind of loss hurts so much
Ambiguous loss is painful because there is no clear moment of goodbye. There is no single point where life changes and then slowly settles. Instead, the loss unfolds over time, often in small, repeated moments.
You may notice it when:
- a familiar conversation is no longer possible
- shared memories are no longer recognised
- emotional closeness fades or changes
- roles quietly shift without being discussed
This ongoing uncertainty can be deeply unsettling. You may feel pulled in two directions at once, holding on to who the person was, while slowly facing who they are now. This tension can leave you feeling tired, confused or emotionally worn down.
There is nothing wrong with you if you feel this way. This situation is genuinely hard.
Grieving the relationship you once had
With ambiguous loss, the grief is often not just about the person, but about the relationship as it used to be.
You may be grieving the loss of:
- being understood without effort
- feeling like a partner rather than a carer
- shared decisions and mutual support
- feeling seen, known, and recognised
In dementia especially, people often say, “They are still here, but I feel alone.” That loneliness can be very painful, and it can exist even when there is love, commitment and care.
You can miss what was, even while continuing to care for what is.
The heavy weight of guilt
Guilt often sits close to ambiguous loss.
You might feel guilty for feeling sad when the person is still alive. Guilty for wanting space. Guilty for feeling relief when someone else helps. Guilty for wishing things were different.
These feelings do not mean you are uncaring or selfish. They are natural responses to living with ongoing loss and responsibility at the same time. You are being asked to adjust again and again, without rest from the grief.
Guilt often grows where compassion for yourself is missing.
When your grief is not recognised
Another painful part of ambiguous loss is that it is often invisible to others.
People may say things like:
- “At least they’re still alive.”
- “You should try to be grateful.”
- “It could be worse.”
Even when kindly meant, these words can make you feel misunderstood or alone. You may begin to question your own feelings, or push them down to avoid discomfort, your own or other people’s.
But your grief is real, even if others cannot see it. You do not need permission to feel it.
Learning to live alongside the loss
Ambiguous loss is not something you resolve or neatly move past. For many people, the work is about learning how to live alongside it.
This may involve:
- accepting that there may be no clear answers
- letting go of the hope that things will return to how they were
- finding small ways of staying connected in the present
- allowing both love and sadness to exist together
This is not about giving up. It is about adjusting your expectations in a way that protects you from constant disappointment and emotional pain.
Being gentle with yourself
If you are living with ambiguous loss, kindness towards yourself is not a luxury, it is essential.
Being gentle might mean:
- naming the loss quietly, even if only to yourself
- allowing your feelings without judging them
- taking breaks when you can, without guilt
- speaking to someone who understands this kind of grief
You are navigating something complex, emotionally demanding, and often lonely. Feeling overwhelmed does not mean you are failing. It means you are responding to something that asks a lot of you.
You are not broken and you are not alone
Many people living with ambiguous loss wonder if something is wrong with them because they feel grief, anger, numbness or exhaustion while the person is still alive.
Nothing is wrong with you.
You are responding to a loss that has no clear shape, no clear ending, and very little recognition. That is hard for anyone to carry.
Finding words for this experience can bring relief. It can help you understand yourself more kindly and remind you that you are not alone in this.
Losing someone who is still here is one of the most painful human experiences. It deserves understanding, care, and compassion, especially from yourself.
Jurgen Schwarz
January 2026