Partners Living With Anticipatory Grief
When your husband, wife or partner has a life-limiting illness, it's likely that you'll feel losses while they're still alive. This expected loss is called anticipatory grief.
Here we explain what loss before bereavement means, what grief can feel like for a partner or spouse during incurable illness, and we suggest ideas to help with these potentially difficult emotions.
What is Anticipatory Grief?
Anticipatory grief is the sorrow you feel for an expected loss. It's similar to grief after death, but it doesn't replace those emotions. A living loss is the sadness you feel now for what you know is to come and the current pain for what has already gone.
Partners and spouses may experience sadness, anger, guilt or pain while the person they love goes through a serious illness. Someone with a life-threatening diagnosis may live for years, or come close to dying several times. They may also see decline or feel that their personality is shifting, while still living with an illness. It's this uncertainty that makes it all so exhausting.
The period between a terminal diagnosis and death is often an under supported time for the partner of that person, especially during mid-life when mortgages, careers and children make things more complex. The Unwanted Path exists specifically for this time before bereavement. We want to support you while your person is still alive.
"I still, three years on, struggle to talk about how badly things went downhill because I didn't recognise the signs and I was in so much denial."
"You're in a place where you are trying to survive whilst waiting for your world to fall apart. I was lucky, I had incredible support from the hospital, but not everyone has that."
Grief Before Death: Why it Happens
Nobody can tell you when your grief is premature; there's no "right" way to do this. A sense of loss due to poor health, missing activities you used to share, or wanting things to be the way they were is all a part of what you're grieving now. The loss you feel for what's to come is a recognition of what you have now and the strength of your love.
It's likely that you'll keep hoping for more time together or want them to recover, even as you grieve their decline. No matter what's on your unwanted path, losing your life companion is profoundly painful. It's natural that your mind and body will want to prepare you for it.
The person you know may feel already partly gone, due to disability, medication or pain. Noticing and talking about these changes can reduce stress and improve the time you have together. Death is a difficult subject but talking about the changes as they happen can help you to accept the associated losses. Touching on the small stuff can help the bigger subject to feel gradually more approachable.
Nobody can know when exactly they'll die, but most people don't want to feel alone. Watching someone you love suffer is incredibly difficult. Acknowledging your reality, rather than shielding them or yourself from it, can ease the fear and anxiety for both of you. No matter what happens on your path, we hope you can find the courage and strength to face it.
We've shared what we learned from our experience below, to try to help others as they find their own way.
How Does Anticipatory Grief Feel for Partners?
Some common thoughts and emotions are:
Sadness, "Nothing will be the same."
Anger, "How dare they leave me."
Acceptance, "They're still here now."
Guilt, "I should do more to help."
Despair, "Why is this happening?"
Dread, "What will happen next?"
Hope, "Maybe things will improve."
You won't grieve every day. Some days feel ordinary; others feel numb. Normal routines continue around you, even when everything on your insides has stopped. Understanding your feelings and allowing yourself to experience them can reduce the struggle and help you to take the next step.
All forms of grief are draining, especially when you're also caring for a person you love. Like conventional grief, anticipatory grief can cause difficulty concentrating, forgetfulness and hyper-vigilance. A life-limiting illness touches every area of life. You may find your brain switches from finances, to childcare, to work, to grieving, and can't cope with your usual social events or conversations.
Each new change can trigger fresh insight into what life might be like when your person is gone. This intensity means that your body may try to shield you from the full weight of your grief. Your heart, brain and body are designed to protect you from this pain.
Other people may struggle to understand what you're experiencing, and begin to distance themselves or avoid talking about it. Their reaction often shows their own fear, which can make your pain worse. However, protecting others by not sharing your feelings may amplify your own stress and loneliness over time.
Despite everything, living with an expected loss is not necessarily entirely miserable. It can strengthen your connection with others, allow joy in the moment and increase gratitude for those who matter most. It is possible to make wonderful memories while grieving. Many families manage to remain positive, while also being healthily honest about their loss.
Holding Hope When Your Partner is Dying
It's essential to have hope, because it keeps you going despite your fear. Anticipatory grief has one crucial difference from grief after death – your husband, wife or partner is still alive. Hope is real now and it matters.
For some people, hope is found in encouraging medical news, lifestyle changes, or other people's inspiring stories. For others, talking about death feels necessary to keep in touch with what's coming. Some will feel that talking about death feels like giving in to the disease or giving up hope. Whereas others get comfort from being direct and naming what's happening.
It's important to respect your feelings, recognise your loved one's wishes and actively do the things which keep your sense of hope alive, together or separately as necessary.
Hope is also something to be gentle with. There are things that medicine and faith cannot fix. Blind optimism can prevent families from saying the things they need to say. False hope can be frustrating. Moments of honest connection are what most families carry forwards, despite it all.
Finding your own balance between hope and acceptance is deeply personal; nobody can tell you how to do this. Your truth is what will carry you onwards.
"We never gave up hoping for a miracle recovery, and then there came a time when we had to accept reality. It was so hard to talk about him dying, I simply couldn't imagine him not there. It made me feel intensely fragile. I was terrified of losing him."
"I wish I was more prepared for what was to come … At the hospice the staff were reaching out to both of us, but we politely declined. Now, having had their support in the aftermath, I wish I'd taken it at the time and had the chance to talk about our emotions."
"Living with what was, not anticipating anything good or bad, meant that when he was actually approaching his death I knew that we had done our best. From somewhere there I drew more energy... So that I could have more time to really be with him."
How to Cope With Your Anticipatory Grief
Acknowledge Your Feelings
There's no right way to grieve, before or after death. Whatever you feel is valid. Try to be kind to yourself. Build regular time into your week to notice and name your emotions, even if that means just sitting quietly for a moment. If you need help carving out that space, ask others for that support.
Find Sensitive Support
Find people who will genuinely listen. You don't need to wait until after your partner dies to seek therapy or counselling. Reach out to friends, a support group, an online community, or your GP. Your need for support will change with your situation, be willing to experiment by trusting and following your feelings.
Express How You Really Feel
Be as honest as you can with those you trust. Writing, creative activities, music or physical exercise can all help release whatever is going on inside of you. Giving time to things you want to do increases your sense of control, which helps you to cope better when you have to do the things you don't want to do. Find pleasure and peace wherever possible.
Manage the Practical Reality
Talking openly about what's ahead and your partner's wishes can help you to feel less helpless. Write a Will, enjoy memory making, plan a funeral, discuss finances – do what brings you peace. It's OK to voice your thoughts on life after they're gone. If your partner has the energy, exploring fears together can give clarity, bring you closer and allow them to help you.
If your husband or wife has a terminal illness, the most important thing is not to wait until after they die to seek support.
