The following article has been written in collaboration with Rainbow Trust's Family Support Workers.

Rainbow Trust Children’s Charity supports families who have a child with a life-threatening or terminal illness.

What is anticipatory grief?

There is a common misconception that grief begins after your loved one has died. But the reality is that the grieving process can begin long before and can often begin following a diagnosis.

Anticipatory grief is commonly experienced when you know someone is going to die. You may start to experience feelings associated with grief but before your loved one dies. For example, when a child is diagnosed with a terminal illness, families know their child will die and often experience this type of grief in the lead up (and beyond) their death.

How can I support myself?

It can be hard to know how to best support yourself through this time, especially when there is often no obvious end in sight. Although it sounds cliché, being kind to yourself is one of the best things you can do. Prioritising self-care activities that allow relaxation and rest time are crucial in protecting your mental well-being. Getting enough sleep and having support from friends or a professional can allow you well needed breaks as well as an outlet for your worries and anxieties.

A lot of the time, families struggling do not get the support they need until after the bereavement. But anticipatory grief can affect a family long before the death. Seeking support before your child has died can help foster trusted relationships with professionals who are able to provide ongoing support for the whole family. Rainbow Trust is there for a family from diagnosis to bereavement and beyond. We recognise that families can be in a state of limbo for a long time, and that palliative care can go be an ongoing situation. Rainbow Trust pairs each family with an expert Family Support Worker who enables them to make the most of time together, giving them practical and emotional support, whenever they need it, for as long as is needed.

Are my feelings normal? What should I be feeling?

Anticipatory grief affects individuals differently, and people may experience a mixture of emotions and conflicting thoughts. It is a natural and normal response to an anticipated loss and can be accompanied by physical symptoms such as fatigue, changes in appetite, and difficulty sleeping.

Anticipatory grief can manifest in various ways and may involve a range of emotions such as sadness, anxiety, fear, anger, and shock. It is important to remember that there is no right or wrong way to feel. For example, many families with a terminally ill child experience a sense of hope around their child’s illness, but at the same time are faced with devastating realities. As a result, they try to continue creating memories with their sick child and live in the present without fear of death while also struggling with the ‘what ifs’ that accompany these moments. Every experience comes with the ‘last’ anxiety; ‘will this be our last Christmas/birthday or family event’. While these feelings can feel contradictory and confusing, they are completely normal.

How can anticipatory grief affect my whole family?

There is a huge sense of uncertainty surrounding anticipatory grief, and this can manifest itself in a range of ways. For siblings, anticipatory grief can lead to significant changes in family dynamics as attention and resources are focused on the ill individual. This shift in roles and responsibilities within the family can impact the sibling's sense of stability and support. It can also impact a child’s behaviour.

Having a seriously ill sibling means that the sibling’s emotional ‘cup’ is already full. Children can feel overwhelmed by the situation and have lots of big emotions but lack the language to articulate how they are feeling. This can often result in behavioural issues as they search for an outlet to express their emotions. In this case, it can be important for those around them (e.g., at school) to be aware of the situation so they can support the child appropriately.

Some members of the family can feel a great sense of pressure for things to be perfect, or to enjoy every single moment because they do not know when things might change. For example, feeling immense pressure to have the ‘perfect’ family day out or organising the ‘perfect’ birthday for your seriously ill child. This can quickly become all-consuming and highly stressful for families when circumstances are out of their control. Validating these feelings and reminding families that things can’t often be perfect can be a helpful grounding exercise in these situations.

How can I support my friend who has a terminally ill child?

It can be difficult to know what to say to your friend who has a seriously ill child, but it is important to establish that, often, actions speak louder than words. Here are some suggestions on how you can provide support:

  • Be present and listen: Create a safe and non-judgmental space for your friend to express their feelings. Allow them to share their thoughts, fears, and concerns without interrupting or trying to fix their emotions. Active listening and validation are crucial in showing your support.
  • Offer empathy and validation: Let your friend know that their emotions are valid and understandable given the circumstances. Validate their feelings by acknowledging their pain, fears, and struggles. Avoid making dismissive or minimizing statements.
  • Educate yourself: Learn about the specific situation your friend is facing, such as the illness or impending loss. This will enable you to have a better understanding of their experience and offer more informed support. However, be mindful not to offer unsolicited advice or make assumptions about their situation.
  • Provide practical assistance: Anticipatory grief can be emotionally draining, leaving individuals with little energy for day-to-day tasks. Offer your help with practical matters such as meal preparation, running errands, or childcare. Small acts of kindness can make a significant difference.
  • Be patient and flexible: Grief is a deeply personal journey, and everyone copes differently. Recognize that your friend's emotions and needs may fluctuate over time. Be patient with their changing moods and be flexible in adjusting your support based on what they require at different stages.

Remember, your role is to provide support and understanding rather than trying to "fix" your friend's grief. Simply being there for them, being someone to listen and showing empathy can make a significant difference in their journey through anticipatory grief.

Support after death

Grief is a long and complex journey, and although perhaps your friend’s journey started long before their child’s death, it doesn’t finish there either. Offering support in a range of ways won’t fix the problem, but it might make them feel less alone.

Being present, available and reminding your friend that you are there and willing to listen when they need it is a valuable way to show your support. Be a compassionate listener and allow them to talk about their child and memories without offering unsolicited advice or dismissing their feelings. Acknowledge the enormity of the situation and validate their feelings to reassure them it is okay to grieve deeply. Offer practical support where you can, this could be anything from sibling care, walking the dog, food shop, or helping with funeral arrangements. Be sensitive to triggers and anniversaries; remembering that certain dates, anniversaries, or reminders can be particularly painful. Reaching out during these times can remind them that their loss is still valid. Try to avoid shying away from talking about your friend’s child who’s passed away. Mentioning their name or sharing memories can reassure your friend that their child’s memory will be cherished and remembered.

This advice is not exhaustive, and by no means is there a one-size fits all approach. Being led by your friend is always a good place to start. Grieving is a process, and there is no timeline. Being empathetic and present can make a big difference to someone coping with the loss of their child.

If you, or someone you know has a seriously ill or terminally ill child, visit our make a referral page or give us a call to see if we can help.

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Anyone can refer a family to us (for example, a family member, friend, health, education or social care professional) provided consent from the family has been given for the referral to be made.