When someone close to you has a terminal illness, you may begin grieving before they die. You might be sitting together, talking about something ordinary, when you suddenly think about how much you’ll miss them.
This is often called anticipatory grief. You may find yourself thinking about occasions they won’t be there for, or wondering how you’ll manage without them. There may also be changes to grieve already: fewer outings together, different routines or conversations that have become harder.
Feeling this sadness doesn’t mean you’ve given up on the person. You can care about the time you have together and still feel frightened or upset about losing them.
Not everyone feels grief in advance. You may be focused on appointments and care, feel numb, or find your feelings change from day to day. You don’t have to make yourself feel a particular way.
This can overlap with grieving what hasn’t ended. Here, the focus is on an expected death, even when nobody can say exactly when it will happen.
A few things to keep in mind…
- You can ask for support before the person dies. Sadness, fear or a sense of loss can be difficult to manage while you’re also caring for someone or spending time with them. You don’t have to wait until afterwards to talk about how you’re feeling.
- Having time to prepare doesn’t mean you’ll feel ready. You may have thought about their death and made practical arrangements, but still find it hard to take in when it happens. You don’t have to expect less of your grief because you knew the death was coming.
- There can still be things to look forward to together. You might hope for a comfortable afternoon, a visit from a friend or another outing if they’re well enough. Looking forward to these moments can sit alongside sadness about the future.
- Every visit doesn’t have to be a special occasion. You may feel pressure to make the most of every moment. Sometimes watching television together, sharing a joke or sitting quietly is what you both want. You don’t have to make every conversation a goodbye.
- Your own needs still matter. Rest, food and some time with other people can be easy to put aside. Ask for help where you can. If you’re struggling to manage everyday life or are worried about how you’re feeling, speak to your GP or the team supporting the person’s care.
When the future keeps intruding
Knowing someone is likely to die can change how you experience ordinary time together. You may wonder whether this will be their last birthday, or find yourself imagining a home without them while they’re still sitting beside you.
You can’t always put those thoughts aside just because you want to enjoy being together. If your attention keeps returning to the future, you don’t need to blame yourself.
There may also be a lot to organise: appointments, care, work and family responsibilities. You might get through a busy day and only notice how upset you feel once things are quiet.
Things that may help
Ask about what you don’t understand. If uncertainty about the illness or care is adding to your worry, write down questions for the care team. They may not be able to give an exact timescale, but you can ask what changes to expect and who to contact if you’re concerned.
Take your cue from the person. They may want to talk about dying, make plans or spend time doing something familiar. You can ask, “Is there anything you’d like to talk about or do today?” Neither of you has to force a serious conversation.
If there’s something you’d like to say, it doesn’t have to become a big farewell. A thank-you, a shared memory or a few words about what they mean to you may be enough.
Find someone you can speak freely with. You may want space to talk about your fears without worrying about upsetting the person who is ill. A friend, counsellor or someone from the care team may be able to listen. You can ask whether support is available for family and friends.
Share practical responsibilities where possible. Ask someone to handle an errand, update relatives or stay with the person while you take a break. A specific request can be easier for others to respond to than asking for help in general.
Finding support
You don’t have to judge whether you’re grieving too much or too little. What matters is whether you have enough support for what you’re facing now.
If worry or sadness is making everyday life difficult to manage, or keeping you from sleeping or spending time with the person, speak to your GP or the team involved in their care. You can ask for help while the person is still alive, even if you don’t know how to describe what you’re feeling.
Recommended reading
If you’d like to understand more about dying, Kathryn Mannix’s With the End in Mind draws on her experience as a palliative care doctor, through stories of patients and the people close to them.
It describes what can happen as someone approaches death and considers how families can talk about it. You may find it useful if not knowing what to expect is adding to your worry.