Grieving someone who is still alive: dementia, addiction, estrangement

“My mother is still here. I go to see her every Thursday. And every Thursday I drive home as though I had been to a funeral. Except there was no funeral, and next Thursday it happens again.”

This is one of those losses our culture has nowhere to put. There is no form to hand in at work. No date in the calendar. No neighbour bringing round a cake. The person you are grieving for is alive — breathing, with a phone number, sometimes even answering it — and that is precisely why the people around you cannot see what is supposed to hurt.

In my consulting room I meet this loss in three fairly different shapes that nonetheless behave remarkably alike: in dementia, in addiction within a family, and in estrangement.

A loss nobody buries

The American family therapist Pauline Boss coined the term ambiguous loss for this in the 1970s. Her starting point was research with the families of soldiers missing in Vietnam: relatives did not know whether the person was alive or dead, and it was precisely that uncertainty — not the loss itself — that was eating the families up.

Boss later showed that the same uncertainty appears where death is not in question at all. What matters is that clarity is missing: is this person here or not, am I allowed to count them as lost, do I have the right to grieve or am I simply being ungrateful.

Without that clarity grief cannot properly begin, and at the same time it cannot end. A person gets stuck in an in-between space that holds neither despair nor hope, but both at once, every day again.

Two forms of the same distress

Boss distinguishes two types, and in practice the distinction is useful.

In the first, the person is physically present but psychologically absent. This covers advanced dementia, severe brain injury, and sometimes addiction or severe mental illness, where outwardly the person has not gone anywhere, while inwardly they are simply no longer where they used to be.

In the second, the person is physically absent but very much psychologically present. This covers estrangement, the child who has moved away and does not get in touch, the parent who left for another country and does not answer, the missing. They are physically not in your life. They are in your head all the time.

What these two share is that there is no ritual, no date and no permission. And without those three things, every time it hurts you also feel you have no right to the pain.

Dementia: the person who is there and is not

With dementia the loss is spread over years. First you lose the person who could plan a holiday. Then the one who knew your children by name. Then the one who was at least still recognisably themselves in temperament. Each of those stages is a small death that nobody recognises as a death.

Research with relatives of people with dementia bears this out: for a large proportion of carers, grief appears during the illness rather than only after the death, and it is often most pronounced in the middle stages, when the person is still present enough for the difference to hurt. At the death many then feel relief, which brings its own round of guilt.

What I usually hear here is embarrassment: but she is still alive, how can I be grieving. The answer is simple. You are grieving for a relationship, not for a body. The relationship was real, and it genuinely no longer exists in the form it had. By any measure that is a loss, even if no registry records it.

Addiction: when somebody else sits at the table

Addiction behaves similarly, only with one more layer: the alternation. The person comes back for a few weeks — talks, makes plans, is again the one you knew — and then goes away again. For families this swinging is often harder than steady absence, because it never lets the sorrow settle.

Two things need care here. First: addiction is not a flaw of character and the family did not cause it. Second: grieving for someone does not mean you have written them off. Many people resist grieving for exactly that reason — it feels like a betrayal.

It is not. Grieving for what was and supporting what might still be can sit together. What helps most with this is a clear line between what you are responsible for and what you are not; I have written about that in the piece on setting boundaries.

Estrangement: a loss that somebody chose

The third form is the quietest. The child who does not ring. The brother who shut the door after an inheritance. The parent you parted from because anything else was impossible.

Estrangement carries a particular poison: there is always someone in it who decided. So alongside the sorrow come two further feelings — rejection and shame. Research on family estrangement suggests that shame is what stops people talking about it at all, and that many never mention estrangement even to their closest friends.

This loss also has no safety catch. With a death you know it will not change. Here it might. Every birthday, every Christmas, every wedding in the wider family opens the same question: will they get in touch. And each time they do not, that is a fresh, small, officially non-existent loss.

Why a loss with no ending is harder

Common sense says it ought to be easier if the person is still alive. In grief that often does not hold, and the reasons are quite concrete.

There is no ritual. A funeral is not a pleasant thing, but it does something necessary: it gathers people, states out loud that something has happened, and sets a marker. With ambiguous loss none of that exists.

There is no permission. The people around you do not know they should ask how you are. Often the opposite — they ask how he is, and you are merely the reporter.

And there is no closure. What settles over time into a fact after a death stays an open question here. The mind cannot leave open questions alone; it returns to them in every idle moment. I have written about why unresolved things circle in the piece on going over things in your head.

What this does to a family

Ambiguous loss rarely affects only one person. What arises in a family is what Boss calls boundary ambiguity: nobody knows for certain who is still a member of the system and who is not, who should take over the roles the absent person no longer fills, and whether it is even permitted to talk about it.

So families often get stuck around these losses. One person wants to arrange things as though he were gone. Another experiences that as betrayal. A third stops visiting altogether and gets labelled as not caring. All three stances are attempts to survive the same uncertainty, only each on their own.

What I try to do in these conversations is not to get everyone feeling the same thing. That is not possible. I try to get them to stop reading differences in behaviour as differences in love.

Where this framework does not apply

Now the limits. The idea of ambiguous loss is useful right up until it becomes an invitation to write someone off too early.

With addiction people sometimes seize on the thought that the person is “as good as dead”, and drop contact that would still have been possible. That is understandable, but it is not a therapeutic goal. With estrangement the same thing happens in the other direction: someone grieves for a relationship that could in fact be partly rebuilt, if they sent the first, uncomfortable message.

And with dementia the framework has a trap of its own. If you decide in the middle stages that the person is already “gone”, you can lose what is actually still available: touch, music, a familiar voice, presence without conversation. More than one person has later told me that what they regret most are exactly those years when they were physically visiting and inwardly had already said goodbye.

The framework, then, is a description of distress, not an instruction for what to do. What anyone does about contact stays an open question with no single right answer.

What helps in practice

Boss suggests a stance she calls both/and. My mother is my mother, and the mother I knew is no longer here. I miss my brother, and I will not seek contact until something changes. That stance is uncomfortable, but it is the only one that matches the actual state of things — and it settles people more than trying to decide for one side or the other.

The second thing that helps is making your own ritual, since the culture does not offer one. It need not be solemn: a visit to a place the two of you used to go, a letter you write and keep, one evening a year deliberately set aside for this.

The third is talking to someone who will not jump straight to advice. People with these losses get mostly instructions — put him in a home, get in touch with her, leave him alone — and very little room simply to say how it is.

It also helps to name out loud what is still available of the relationship. With dementia that is often more than it seems: listening to music together, a hand, a walk without conversation. With estrangement sometimes all that is available is staying reachable without knocking every month. Both are too little for what you had, and both are still not nothing.

And fourth: look after the person who is doing the looking after. With dementia and addiction, carer exhaustion is the rule rather than the exception, and it often arrives before the sorrow does. I have written about how it shows up in the piece on the signs of burnout.

When to seek help

Get in touch when this loss is getting in the way of your daily life for months: if you are not sleeping, if you avoid people because you do not know how to answer their questions, if visits leave you in a state you do not recover from until the next day, or if guilt has become louder than everything else.

With estrangement it is also worth getting in touch when you are considering an approach and do not know how. That is a conversation better prepared than sent at midnight.

What to remember

Grieving for someone still alive is not an exaggeration and it is not ingratitude. It is a response to a real loss of a relationship, one that lacks all the outward markers — the ritual, the date and the permission of those around you.

Since clarity will not arrive from outside, the goal is different from what it is after a death: not resolution, but the ability to live beside an open question without losing yourself in it. Holding both at once is harder than one firm story, and it is the only thing that matches the truth.

And if someone asks why you are sad when he is, after all, still alive — that is a question about their understanding, not about whether your sorrow is warranted.