'One of the hardest things you'll ever have to do is grieve the loss of someone who is still alive' (Author unknown)
Something that is often discussed in here online, is the topic of ‘anticipatory grief’. People don't always realise there is a name for the intense set of emotions they’re experiencing. However, they share those universal feelings associated with facing the loss of someone they care about.
People with cancer can also be mourning the loss of the life they had, pre cancer. For some, when the cancer is here to stay, the anticipating of their own worsening health, loss of fitness, strength, and the thought of leaving loved ones behind, can cause pain, heartache and distress.
What is anticipatory grief?
It’s quite hard to find a brief definition, but this may help understand the principle. ‘Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves’ (Wikipedia).
It’s those heart lurching moments, sometimes from point of diagnosis, when you realise that you or your loved one’s life is not finite. It may be recognising the losses that are occurring when or if the illness is progressing – loss of job, loss of role, feeling more tired, not able to do things that were taken for granted before.
For the partners, family members and friends, it’s the waiting for the next ‘shoe to fall’, being on a high state of alert wondering what might happen next, and having to grieve each new sign that things are moving on. You may find yourself dreading the future, wondering how you’ll cope, and feeling guilty for trying to imagine your life when the person you care about is no longer here.
For some of us, it’s tempting to become over protective, worrying over how well they’re eating, watching for symptoms, looking for cures, feeling sad, frustrated and angry at the situation you’re all facing.
Roles may slowly start to change – and that can cause frustration and sadness too. The change in relationships, as we move from child or partner, to becoming the carer/parent figure – can trigger grief at the loss of intimacy and the way things were.
How anticipatory grief feels
Some feelings you may struggle with at times are:-
- Sadness/tearfulness
- Anger
- Loneliness
- Anxiety and depression
- Guilt
- Desire to talk
- Fear
- Fatigue
- Emotional numbness
- Poor concentration/forgetfulness
From :(How to recognise the signs of anticipatory grief – Sarah Stevenson, 2015)
Ways to manage anticipatory grief
In a sense, although anticipatory grief is a painful process, it does seem to have a purpose, preparing us for the next stage. In the midst of all the incremental losses – the scans and hospital visits that tell of a decline – the realisation that this may be the last Christmas, the weddings and births to be missed – there may still be ‘champagne moments’ to treasure. Hope doesn’t have to fade…it’s more about setting realistic smaller goals.
When I was a palliative care sister, I read an old book by an American palliative care doctor, Ira Byock. Called ‘Dying Well’ (1998), he talked about people facing the end of life, and their families, having the chance to say all they’d wish to say. It boils down to five very human phrases:-
- I love you
- I forgive you
- Forgive me
- Thank you
- Goodbye.
It’s a lonely process, and there may be days and times that it all feels too much. Do seek support – talk to people how you feel, either in support groups, your local Maggie’s Centre, (or here at Maggie’s Online) – your friends, family, and your community. The spiritual/meaning of life/the ‘big stuff’ type thoughts can also be eased and talked through with people skilled in tackling painful and difficult subjects – be it a chaplain, specialist nurse, local hospice team – or a wise and compassionate friend.
It can be that we focus on being busy, keeping all the practical aspects of the household and our lives going, collecting prescriptions, ensuring appointments are kept, taking on more and more of the roles previously performed by the person with cancer.
This is the time for talking to each other, enjoying smaller but still joyful moments, and acknowledge that none of us are perfect. There’ll be days when you get ratty with each other, frustrated, hurt, tired, and scared. Equally there will be times for reminiscing, laughing together, sharing some quality time.
Take time out for yourself – recharge your batteries if you can and share out tasks if that is possible. This is often a time that can bring families closer, and there can be a sense of reward in pulling together.
If you have other family members, siblings, parents or children, remember they too may be going through this grieving process, so look out for each other. I wish I could say that anticipatory grief helps relieve the grieving afterwards. It does for some people, but not for everyone.
Maybe the first step today, after reading this blog, is to recognise if this is what you may be experiencing. Realise it’s normal to feel as you do. Don’t do it alone – speak to someone if you feel up to it. You’re welcome to drop into one of our Maggie's Centres, - with the opportunity to talk face to face with someone who understands what you're going through. Here online you can read about other’s experiences, join in conversations, read our blogs and hopefully feel less alone with what you’re going through,
Warm wishes
Sue
Updated April 2020
Resources
How to recognise signs of anticipatory grief - Sarah Stevenson (2015)
Dying well: a contemporary guide to awakening - Ira Byock (19998) (paperback)
Grieving before a death: understanding anticipatory grief - What’s your grief