Author: Annie Brylewska-Cooper

Anticipatory Grief

What do we mean by ‘anticipatory grief’? 

When someone has been diagnosed with an illness they cannot recover from, this ‘expected’ bereavement can impact family, friends and all those connected to the person who is terminally ill. This form of grief we may feel is ‘anticipatory’ – the grief we experience when we are approaching an expected loss. In the same way as grief is felt differently by everyone, anticipatory grief is unique to each person, particularly as the period before a loved one has died of their illness can vary greatly. The grief can be experienced across long periods of time, and this can be incredibly exhausting to live with. The complex emotions you may feel before and after someone close to you has died may feel manageable some days, whilst feelings of sadness, loneliness, anger or fear may fizz up to the surface, feeling impossible to cope with on other days. 

Supporting children and young people when someone is seriously ill and is unlikely to get better can create feelings of anxiety and raise many questions. Whilst you may be trying to understand and manage your own grief emotions, you may also be the primary source of information and comfort for your children or others in your family. Whether you are seriously ill, or you are caring for children when somebody else is, it is essential that you also look after your own physical and emotional wellbeing by ensuring you are practicing self-care and are building and maintaining reliable support networks.  

Anticipatory grief is difficult to pin down, whilst we know we are going to miss someone, we will also experience micro-losses that happen in the lead up to someone important to us dying. In real-time you may feel you are losing things due to: 

  • Changes in your roles and responsibilities 
  • Changes in family dynamics  
  • Changes in the health of the person who is terminally ill  
  • Financial changes  
  • Changes in what the family unit and friendships have normally looked like for you 
  • Changes to your belief systems  

No two people will experience grief in the same way – it is entirely unique – and everyone’s needs are different. Whilst some people may feel numb and disconnected, others may feel they can express their emotions much more easily. This can also intersect with different personality types, neurodivergent traits, SEND, trauma, pre-existing mental health conditions, and how safe you feel in your support networks. Not everyone has the same opportunities to express their grief.  

The feelings we might experience in our grief may have a physical impact on us. Changes in our body linked with adrenaline and cortisol levels often directly correlate with stress and anxiety. Physical effects of grief may include: 

  • Headaches 
  • Tiredness and fatigue  
  • Brain fog or ‘Grief Brain’  
  • Stomach aches  
  • Nausea  
  • Problems falling or staying asleep 
  • Loss of appetite  

 

What can you meaningfully do for yourself and your children to manage anticipatory grief? 

Grief is a normal, understandable and natural human response to loss. It is painful, difficult to tolerate, deeply uncomfortable and can make you feel quite unwell. But with the right support – and using coping mechanisms that hold you steady in navigating these emotions – you and your child/ren can get through this; what you are experiencing doesn’t mean there is something wrong with you.  

Some simple self-care activities that you enjoy and bring you comfort may help, for example:  

  • Hanging out with your pet(s)  
  • Get outdoors (this may not be accessible for everyone)  
  • Exercise  
  • Using peer support services  
  • Talking to friends and family  
  • Taking a hot bath or shower  
  • Making a hot or cold drink for yourself  
  • Journalling/Writing 
  • Being creative e.g. arts and crafts  

However, for some self-care is not going to help on its own and some self-regulation techniques may be more useful. We talk about emotional dysregulation when we are unable to control emotional responses and our usual strategies for managing emotions are not working. Self-care strategies may not work when we are emotionally dysregulated. This article may be helpful for more information and techniques for managing emotional regulation in children – but the principles are true for teens and adults too. 

When supporting children and young people with their grief, encourage them to maintain their normal activities and routines as much as possible, keeping them updated about any known changes without projecting too far into the future: being honest about what is happening in the present, without thinking too far ahead, can help children hold some of the longer-term anxieties we may be worried about as adults. As long as you add new pieces of information like a jigsaw, as and when things are changing, your child/ren will gradually adjust to changes and prepare for losses as and when things are moving towards end of life. 

Helpful questions to ask yourself or your child/ren:   

  • What else might be making me feel stressed that is separate from my grief? Can I do anything about these things? (Compartmentalising and taking back a sense of control.)  
  • Do I need some company and time with others, or do I need time on my own?  
  • Is it time to move my body or rest my body?  

Helpful questions to ask if you want to be supportive:   

We can often project our own lived experience of grief onto a situation. By approaching with an open mind, showing genuine, empathetic curiosity for what that might look like for someone else, it gives people an opportunity to open up honestly about what their experience looks like. Instead of asking “How are you?” – which is hard to answer honestly – how about: 

  • How have things changed for you?  
  • What does that look like for you?  
  • What would feel helpful right now?  
  • Would it help if I did X, Y or Z?  
  • What sort of morning/afternoon/day are you having? (This is more focused and is easier to answer more honestly) 

Important things to remember and remind your child/ren of:  

  • Distraction is a coping mechanism and sometimes it’s okay to distance yourself from painful emotions e.g. keeping busy, socialising and getting out of the house is what you may need and enjoy – this is not uncompassionate or not caring, this is coping. 
  • There are no bad feelings, feelings tell us about needs that we have  
  • It’s okay to be okay  
  • You don’t owe anyone an outward expression of your emotions – many emotions are private for people  
  • What is most important is you feeling safe and comfortable to feel these emotions for yourself  
  • Nobody has ownership of your grief, and it is for you to manage in a way that feels manageable to you 

Other helpful topics that may support you and your child/ren when dealing with anticipatory grief 

We have a range of resources and short films on the serious illness page of the SeeSaw website, found here.   

In addition, here are links to some of our other topical articles that may also support with anticipatory grief: 

  1. Emotion Coaching: how to help children recognise and name their difficult feelings. 
  1. Grief and ASC – although this Blog refers to grief post bereavement, the themes are applicable for children with ASC managing the changes that occur before a death. 
  1. Coping with change – making the most of support networks. 
  1. Separation Anxiety – this can be heightened by serious illness in the family. 
  1. Supporting Communication – ‘not talking doesn’t mean not grieving’ – how to support children and young people who aren’t keen to talk. 
27 February 2025