Grieving Someone Who Is Still Alive
You're at a bedside, or across a kitchen table from someone who used to know your name, and you are grieving a person who is still here.
Nobody has sent a card. You're not allowed to be sad yet, or that's how it feels, and you are worn thin from being the strong one. There's a word for the first version of this, anticipatory grief, and it's the word most people searching this page arrived with.
There's a second version, for someone who is alive and gone, that has a rarer name and no card at all. I've lived with that one since I was five.
Grief Before the Death
Marie Curie defines anticipatory grief as feelings of grief before the person dies, and I'd put it more bluntly. Grief starts when the loss starts, not when the death certificate does. A diagnosis with a number of months attached, a parent who is slipping, a partner who can no longer do the thing you did together every Sunday: the loss has already begun, and so has the grieving, and the fact that they are still in the room does not make it less real. It makes it lonelier.
It carries everything the later grief carries. Sadness, fear, anger at the illness and sometimes at the person, guilt for thoughts you'd never say out loud, numbness that frightens you because it looks like not caring. And it is common. When researchers pooled 55 studies of people caring for a family member with dementia, roughly one in six met the criteria for prolonged grief before the person had died, in the one study that measured it. Grief before the death ran higher in spouses, in people caring for someone with advanced dementia, and in people carrying more of the load and more depression alongside it. Afterwards, between 6 and 26 percent met the criteria for complicated grief, and the things found to shape that later grief were the grief and the depression that had come before it.
Read that last sentence again if you're the one at the bedside. What you feel now is not a rehearsal. It is the thing itself, and how you are carried through it now shapes what comes after.
You Cannot Prepare Your Way Out of It
Every page I read while writing this told you to prepare. Learn about the illness. Have the conversations. Get the paperwork done. It's reasonable advice, and I want to give you what the research says about it, because it surprised me.
A study of 150 people caring for someone with dementia tested exactly that idea. The researchers looked at five kinds of preparation: knowing about dementia, having social support, feeling supported by healthcare staff, having the end-of-life paperwork done, and having had the conversations with the person themselves. Then they measured grief. Four of the five made no measurable difference. The one that did was social support, and it worked in the direction you'd expect: less of it, more grief. Knowing more about the illness eased the heartfelt sadness a little, and that was all. The authors called it "limited support" for the idea that preparing lowers grief.
So I'm not going to tell you to prepare. You've probably done it anyway, and it will have been worth doing for other reasons. What I'm going to tell you is the only thing that moved the number, which is also the one thing the strong one in the family will not do. Do not do this alone.
Two Griefs at Once
There's a reason it feels impossible rather than merely sad. When 353 people caring for someone with Alzheimer's were asked, in their own words, what the hardest part was, the answer was not the hands-on care. It was grieving the person who had gone while looking after the person who was here, both at the same time. The researcher's term for that pairing was anticipatory grief combined with ambiguous loss.
I see it constantly. People come to me who visit someone in a care home who no longer knows them, and they apologise for feeling bereaved, as if it were disloyal while the person is still breathing. It isn't. Both feelings are correct at once. You are losing someone, and you are still responsible for them, and there is no word in ordinary English for that, which is part of why it's so tiring.
The Grief With No Funeral
Now the second kind, which is the one I know from the inside.
When I was five years old, my mum left my father, and I never saw her again and never knew what happened to her. My dad raised me. He was a great dad, and I didn't have a bad childhood, but that doesn't mean it had no effect. When I had children of my own I tried to find her. Agencies couldn't. Complete mystery, still.
A child doesn't do adult arithmetic with that. A child thinks: maybe I'm not good enough for the parent to stay around. As an adult you know that isn't how it works. The five-year-old in you takes a lot longer to be told.
There is a name for this in the research, ambiguous loss, and a small study of families of missing people describes it better than I can. Eight relatives were interviewed. What they carried had the features of both prolonged grief and traumatic grief at once, a never-ending wait the authors called an emotional vortex, and it only resolved when the person was found, alive or dead. Eight people is a small study and I'd not build a theory on it. I'd just say it matched.
And it isn't only missing people. The parent who is alive and will not see you. The sibling lost to addiction who is technically still at the same address. The friend or the marriage that ended without anyone dying. Estrangement is a bereavement that nobody sends flowers for, and the person grieving it is usually apologising for it, because how can you mourn someone who is alive? You can. I have carried one for most of my life, and so have a lot of the people who sit in my room.
Swinging, Not Stages
I said this on the radio last December and I'll say it again here, because it's the single most useful picture of grief I know. You do not go through grief in stages. You swing. One day, or one hour, you are in the loss: the pain, the missing, the photograph. The next you are in the rebuilding: the shopping, the paperwork, a laugh you feel guilty about. Then you swing back. The swinging is the healthy version. It is not a sign that you are doing it wrong, and it is not a sign that you are "in denial" when you have a good afternoon.
Psychologists call this the dual process model, and it was built precisely because the stage models did not describe what bereaved people actually do. My bereavement page says more about why I don't teach the stages any more, so I won't repeat it. For grief before a death, or grief with no death, the swinging matters even more, because there is no funeral to mark when one phase is supposed to end and the next begin. There is just the swing, for as long as it takes.
What I Actually Suggest
Not a programme. A few things I say to people in this position, which I'd rather you had now than in six months.
Allow it, including the relief. If part of you will be relieved when it's over, for them and for you, that is not a dark secret. Marie Curie says so on its own page, and I say so in mine. Relief and love are not opposites.
Give the deep days a boundary. Grief has a way of becoming the whole week. I ask people to give it an appointment instead: an evening, a walk, an hour with the photographs, and then a deliberate step back into the rebuilding. Not because the grief should be rationed, but because you need the other hours to be able to carry it.
Do the basics, badly if necessary. Eat, sleep when you can, move a bit. None of it treats grief. All of it stops your body making the grief heavier.
Honour the person now, not later. Tell them the thing, if they can still hear it. Do the thing you did together, differently. If they are alive and gone, honour what was real, because it was.
Say the unsayable to someone who can hold it. The guilt, the relief, the wish that it were over, the anger at a parent who left. Those need saying out loud to a person who will not flinch, and that is what I'm for if there is nobody else.
And the one thing the evidence actually found. Be less alone. Let someone else be the strong one for an hour. If you are the person everyone leans on, that will feel like the hardest instruction on this page, and it is the only one with a number behind it.
If Things Are Worse Than That Right Now
Please do not wait for an appointment.
- If you or someone else is in immediate danger: 999
- NHS mental health crisis line for Milton Keynes, free, day or night: 0800 0234 650
- Urgent NHS help, choose the mental health option: 111
- Samaritans, free, at any hour: 116 123
- MK Crisis Cafe, run by Mind BLMK, open 5pm to 11pm every day: 01525 722 225
If you come and see me, I won't ask you to prepare. I'll ask who you are being strong for, and who is being strong for you.
Send me a messageGrief doesn't end. It transforms, and we learn to carry it differently. You don't have to learn that on your own.
