One of the most difficult parts of providing care to a dying loved one is the fact that you know you’ll have to say goodbye. Your position is uniquely painful as you witness their slow or fast decline. You can’t pretend that death isn’t coming, but the uncertainty of when brings its own complicated emotions. It may feel like grief, but is it? Your loved one is still alive.
It’s normal to feel confused, upset, and even angry during this time. What you’re feeling is called anticipatory grief, and it most often occurs while a loved one is facing a terminal diagnosis. While we as a society have talked about handling grief after death, there’s not much discussion about anticipatory grief. So what is this emotion, and what are some ways to cope with it?
What is anticipatory grief?
Anticipatory grief, or pre-grief, occurs while your loved one is still alive. Common situations that can lead to anticipatory grief are if you’re taking care of a relative who’s been diagnosed with a terminal illness or has entered hospice. They’re still with you, and may even have plenty of good days ahead, but you know that they’re very ill. You see their good days, but also their bad days, and you know there is likely worse to come.
Those who suffer from anticipatory grief often feel more confused than anything else. After all, your loved one is still present; you may feel like you should be grateful for this additional time, however short it may be. You may also feel hopeful, reminded that “Where there’s life, there’s hope.”
But that confusion can sometimes give way to hopelessness, particularly if you’re watching your loved one decline due to severe illness or age. For some, anticipatory bereavement is worse than conventional grieving because you’re constantly imagining scenarios where your loved one begins to recover, only to be confronted by the reality of their condition.
Who experiences anticipatory grief?
Spouses, family members, and friends of someone with a terminal diagnosis can all suffer from anticipatory grief. But those who are most deeply impacted by it are often caregivers or those who share a household with the person who’s dying.
The emotions associated with anticipatory grief will vary. We’ve mentioned anger and confusion, but you may also experience:
- Loneliness: Because our society hasn’t fully learned how to manage anticipatory grief, you may feel like you don’t have an outlet to express yourself. This can isolate you from friends and family.
- Fear: You may wonder what is next for your loved one, and be afraid of how they might worsen. You may also fear that your own pain will get worse.
- Guilt: Sometimes there is very little we can do for a loved one’s pain, and we can feel immense guilt — that we can’t fix things, that we can’t heal them, that we are carrying on while they are dying.
How can you cope with anticipatory grief?
Anticipatory grief and the loss itself can leave you feeling wrung out. Be gentle with yourself. This is part of losing someone you love, and many others before you have felt the same complex feelings of anticipatory grief. Some things you can do to offset these feelings include:
- Talk to a therapist: Someone with experience in anticipatory grief can validate your feelings and counsel you on what to expect going forward.
- Learn more about your loved one’s condition: Understanding how they may decline further can help you better prepare for those particular moments.
- Join a support group: Talking to other people who have felt the way you do — and who may be feeling that way now — can be cathartic. While you may learn additional coping tactics from those who have been through this, the greater takeaway will be understanding that you aren’t in this alone.
- Take care of your loved one: Focus on making their remaining time special. This will depend on what your loved one can manage, but some ideas to try are gentle walks, a card game, or even reminiscing over family photos.
Does anticipatory grief make conventional grief easier?
The short answer is no. When you lose someone, you feel the pain of that loss no matter how long you’ve technically had to prepare. What anticipatory grief can do is make you look at the way you anticipate death, and in the process remind you to make the most of the time you have left.
When someone passes away, we are often left feeling like we should have done or said more. Anticipatory grief is a difficult combination of emotions, but by understanding it and treating yourself kindly, you can turn it into a powerful motivator to say what’s on your mind and share what’s in your heart.