Sometimes grief begins before the loss.
We tend to think of grief as something that happens afterwards, particularly when we are talking about death. Someone dies, and then we grieve them. But when someone we love is living with a terminal or life-limiting illness, grief can begin much earlier.
This is known as anticipatory grief.
It can affect the person who is unwell, as well as partners, family members, friends and carers. And it is not necessarily only about the death itself. There can be grief for the changes happening along the way: losing independence, mobility, shared activities, familiar roles, or the future that had once seemed fairly certain.
It is a strange kind of grief because the person is still here.
You are grieving something while still living alongside it.
One of the things I found particularly difficult about anticipatory grief with my dad, who had a neurodegenerative illness, was how easily the possibility of losing him could pull me out of the moment.
A birthday could suddenly become Is this the last one?
Christmas could come with the thought that perhaps there would not be another.
Even an ordinary afternoon could carry the awareness that one day, I might desperately wish I could have it back.
There is something quite painful about that. The moment itself is still happening, but part of you is already looking at it as a memory.
Sometimes that awareness can make moments feel precious. At other times, it makes them harder to simply enjoy. There can be a pressure to remember everything, take enough photographs, say everything that needs to be said, and somehow make the remaining time meaningful.
But not every moment needs to become a memory while you are still living it.
Sometimes a birthday is just a birthday. Sometimes you have dinner together and talk about absolutely nothing important. Sometimes you watch television. Sometimes you are tired or distracted or even annoyed with each other.
That is still a relationship.
Anticipatory grief is often associated with the death that may eventually come, but there can be many losses before that point.
Serious illness can change what someone is able to do and how they participate in their own life. Independence can be reduced. Hobbies might become impossible. Work may stop. Travel might no longer be realistic. The relationship itself can change as one person takes on a caring role.
There can also be grief for a future that is no longer certain.
Perhaps there were plans to travel, retire together, watch children grow up, celebrate future milestones, or simply grow old alongside one another. Those plans do not have to have disappeared completely for them to become a source of grief. Sometimes it is enough for them to suddenly feel uncertain.
This is one of the reasons anticipatory grief can be so complicated. There can be several losses happening at once, some of which are concrete and some of which exist mainly in the future.
It is possible to miss something that has not completely gone yet.
There is also a particular kind of pressure that can come from the people around us.
"Make the most of the time you have together."
It is usually said with love. Spend time together. Make memories. Appreciate the moments you still have.
But sometimes the time you have together is really, really painful.
Serious illness can involve fear, exhaustion, frustration and uncertainty. Caring for someone can be demanding. Relationships can become strained when their roles change. There may be difficult conversations, practical pressures and days when everyone is simply trying to get through.
It is not always possible to experience that time as precious.
There can be something quite uncomfortable about admitting that. We are often given the idea that when time is limited, we should make every moment count. But that can become another expectation placed on people who are already carrying a lot.
You do not have to make every remaining moment beautiful.
Perhaps one of the hardest parts of anticipatory grief is finding a way to acknowledge what may happen without allowing the possibility of the future to take over the present.
There is a balance between preparing for what is coming and living with what is still here.
Sometimes that means having difficult conversations or making practical plans. Sometimes it means letting yourself think about the future rather than pushing it away. And sometimes it means deliberately allowing yourself to have an ordinary day without turning it into a reminder that time is running out.
You do not have to stop being sad in order to be present.
You do not have to stop being afraid in order to enjoy something.
And you do not have to turn every moment into a goodbye.
Anticipatory grief can also come with guilt.
There can be a feeling that grief is somehow inappropriate because the person is still alive. Thinking about their death can feel like giving up hope, or even like wishing the time away.
But anticipating a loss is not the same as wanting it to happen.
It is possible to hope for more time while knowing that time may be limited. It is possible to be grateful that someone is still here and devastated by what is happening to them. Love, fear, sadness, anger and even relief can exist alongside one another.
This can be particularly complicated for carers. Caring for someone can be an expression of enormous love, while also being exhausting and sometimes frustrating. Needing a break does not mean caring less. Feeling angry about the situation does not mean being angry with the person. Finding something difficult does not mean being ungrateful for the time you have.
There is no requirement to experience anticipatory grief in the “right” way.
Having time to acknowledge what is happening can allow people to have conversations, make practical arrangements and gradually adjust to changes in their lives. For some, there may be a sense of preparation or closure.
But anticipatory grief does not necessarily make bereavement easier. Grief after death is its own experience.
The death of someone we love can still be shocking and painful, even when it has been expected for a long time. Equally, someone who experiences very little anticipatory grief may still experience profound grief afterwards.
There is no formula that tells us how one kind of grief will affect another.
There is no single way to cope with anticipatory grief, but talking about it can help. A trusted friend, family member, carer support service, social worker, medical professional or counsellor can provide somewhere to put feelings that are difficult to carry alone.
It can also help to name the losses that are actually happening, rather than expecting yourself to simply “cope” with the situation as a whole. Sometimes the grief is about death. Sometimes it is about independence, a relationship, a shared activity, or a future that has changed. Sometimes it's about all of those things.
And if you are caring for someone, your own wellbeing matters too. Resting, asking for help and having time away from caring responsibilities are not signs that you love the person any less.
There is no need to wait for a loss to become final before taking your grief seriously. Anticipatory grief is still grief, even when the person you love is still here and the future remains uncertain.
Sometimes having somewhere to talk about what is happening can make it a little easier to carry.
At New Beginnings Psychotherapy, I offer online person-centred counselling for adults, including support around grief, loss and significant life transitions. Counselling can provide a space to talk honestly about the parts of anticipatory grief that can be difficult to say out loud.
This is Part 3 of my Grief Series:
Part 1: What I Have Learnt About Grief — Reflections on what bereavement has taught me about living with loss, finding ways to cope, and learning to carry it over time.
Part 2: Grief Beyond Death — Why grief isn't only about death, and the many other losses we can experience.
