Anticipatory grief in children happens when they learn that someone close to them is going to die. It will be normal for them to feel shock, and to also feel devastated, confused and frightened. They may find it hard to concentrate, as their thoughts return again and again to, ‘What will happen to me?’, ‘How will I carry on when my mum dies?’ They also often start to feel different from their peers who are not going through this life-changing event.
In this distressing situation, children may be suffused with a sense of isolation and loneliness. Unlike adults, children have little opportunity to change their circumstances and may feel a distinct lack of power to voice their views or needs – which is why helping them to express themselves is so vital.
The emotions involved in anticipatory grief can be as intense as those following a bereavement. But where a death is expected, there is the opportunity to spend time with the loved person, to make time to talk about important issues, to finish unfinished business and to share memories and make more. There is also time to show love, to forgive and be forgiven and to express gratitude for a life shared. In her book Thrive, Arianna Huffington remarks that talking about death is still something of a taboo – yet, she ponders: ‘Where are our culture’s preparations for leaving life with grace and gratitude?’1 This question is a good reminder for all of us who work with children who are anticipating loss.
There is the world of the living and the world of the dead, and the bridge between is our cherished memories – and the love bound up in those remembrances. Memories can be shared and built during the time when anticipatory loss is present. This helps to alleviate the loneliness that both the dying person and the family may be experiencing. In addition, nothing is ever completely lost if we have memories of it. What we do outlives our deaths, but, for most of us, instead of it being something tangible – such as the Taj Mahal monument that Emperor Shah Jahan built in memory of his wife – what outlives us is the memory people have of us. There is an inscription on a headstone in Ireland that says:
Death leaves a heartache no one can heal,
Love leaves a memory no one can steal.
So, wherever possible, we need to help the child and her family find ways of being together to share stories and to look at photographs of times spent together. Making a scrapbook of special or not-so-special events – whatever is important to the family members – can be really important. (Children will often take their cue from the behaviour of the adults around them as to what is welcomed or permissible.)
In working with grief (whether anticipatory or following a sudden death), we do need to help children express their pain, anger, sadness, love or whatever emotion they feel. There are no right or wrong ways to feel when a loved one is dying, or indeed afterwards, so we must be careful not to be judgmental. But equally, we must consider how we can help a child facing an anticipated death. We could bear in mind any of the following:
- What does the child understand about what is happening to their loved one and their family?
- What does the child understand about death? This is obviously influenced by the age and emotional maturity of the child.
- What does the child feel? Listen, and reflect that such feelings are normal.
- Try to rectify any misinformation or confusion the child has. Knowledge can bring clarity and increase a feeling of security.
- Find out who and what supports and sustains the child.
- Ask what they need from you or what you can do to help.
Our usual counselling skills will be enough to help the child describe their emotions. They may have regrets (‘If only I’d told him’), feel anger (‘Why does she have to die? ‘Why is this happening to me?’) and they may also be ostracised by their peers and be thinking: ‘There’s no need to avoid me. I haven’t got an illness. It’s my sister who’s dying.’
The death of a loved one, particularly a parent, brings everyone face to face with their own mortality, even children. It can be very distressing for them to realise that the person who protected them will no longer be there – and lead to a sense of helplessness. They need, therefore, to feel safe in the care of the adults who will be there after a parent or caretaker has died. In the time leading up to the death, there may be a sense that they will be abandoned, with no roots to keep them anchored. A strong sense of relief can be fostered by helping them to recognise and identify others who will be there with them after the expected death.
A child’s identity is, in many ways, co-created in relationship with others, as well as by their history and culture. All these factors have a role to play in the child’s response to anticipated bereavement, which we need to be sensitive to. This fact may provide an opportunity to explore what ‘legacy’ they can anticipate from the person who’s dying. By this, I mean personal attributes: what they have learnt from the person, what positive strengths they have in common, and so on. One child told me their parent had taught them to click their fingers, and they were so proud they could do it, and it brought them joy and comfort.
Enabling conversations with the dying
The person who’s dying usually knows they’re dying, and though it may be extremely difficult to talk about this, it’s important to try to enable conversations to take place. As Kenneth Doka, Senior Consultant to the Hospice Foundation of America and acclaimed thanatologist, says: ‘Wherever possible let them take the lead. The dying should control the agenda. Don’t force conversations on them.’2 But even when conversation is not possible, we can enable children to be present with the person who is dying and reassure them that being present may speak more loudly than words. If adults around them model respect, compassion and the ability to be there and convey their love, we can help relieve the pressure on children to say something when they don’t have the words to express what they feel.
If the dying person is a sibling with a life-shortening medical condition, the well child can easily be forgotten when so much focus is on the ill child. They may also have an unspoken fear that they may be affected by the same illness and may die too. If we can help children to talk about their thoughts and feelings, they may feel less deserted. Both silence and lack of inclusion isolate the child and can hamper the grieving process.
In my book, Building Continuing Bonds for Grieving and Bereaved Children, I include many resources to help explore anticipatory grief. However, one I came across recently, Benny’s Hat,3 is about sibling bereavement and includes the story of how Benny’s younger sister, Friz, begins to realise that Benny will die. It shows how emotions change for Friz and her family as death approaches, and recognises that anticipatory grief is a dynamic process. It alters day by day and hour by hour. As therapists, we have to be flexible as we navigate the uncharted territory of life-limiting illness within the family, which has few maps. For each family member and for the therapist, compassion for ourselves and others may be the best compass.
But out of the darkness of death, paths of illumination can appear. Hope for the future and recognising that life will go on for children can facilitate the process of grieving. They can find positive strategies to ease the transition from being a child who is unfamiliar with death to being a bereaved child who has had a life-changing experience. In fact, there may even be positive traumatic growth, where the child may emerge from the experience with increased resilience, enhanced empathy and new skills to cope with future adversity.4 Malcolm Gladwell also addresses this phenomenon in his book, David and Goliath,5 in which he documents the successes of ‘eminent orphans’ – people who were bereaved at an early age and were driven by a search for meaning in their lives and a desire to fill the emptiness with a sense of purpose. As Gladwell says: ‘The act of facing overwhelming odds produces greatness and beauty.’5
Sudden death – for example, by manslaughter, road traffic collision, heart attack, or any death that happens unexpectedly and without forewarning – is a shattering experience. Nevertheless, those children who are suddenly bereaved by suicide may also have had to live alongside months or years of distressing mental health difficulties prior to the suicide, and this, too, is a form of anticipatory grief. Children bereaved in this way, especially of a parent, need to understand that they are not to blame for the death, and they also need to be told about the death – taking into account their age and level of understanding or maturity, of course.6
The death of a parent leaves an indelible mark. Research has shown that an increased incidence of depression and posttraumatic stress disorder occurs mainly in those young people who lost a parent at age 12 or younger, particularly where there was earlier experience of maltreatment or parental psychiatric disturbance.7 Early identification of depressive responses, as well as effective, ongoing support for the bereaved children, can encourage the resilience and greater positive mental health that Gladwell talked about.
And if the death that has been anticipated is that of a parent, there is the added burden that the remaining parent may be so upset themselves that they cannot cope with the child’s grief. Just when the child needs most stability and parental love, they may be sent away to relatives and then have that additional separation to deal with, without the security of their usual environment. Children need to work through their own pain and loss without being made to feel guilty about it – ‘being sent away’ can be interpreted by younger children as ‘it was my fault’. Besides, to grieve as a family is a powerfully healing experience. As counsellors and therapists, we can be part of encouraging and facilitating a positive process of working with both anticipatory loss and with sudden death in the family.
Compassion, empathy, active listening and unconditional positive regard are what help children through this unexpected and previously unexplored landscape of loss. And, in the process, I believe it is important to give love to others and to let love into their own life. It’s not one-way traffic, and we can help children learn to give as well as receive love. This encourages resilience and the ability to cope with loss and to grow in a life-affirming way.
Brenda Mallon is author of Helping Children to Manage Loss: positive strategies for renewal and growth (Jessica Kingsley, 1998), Working with Bereaved Children and Young People (Sage, 2011) and Building Continuing Bonds for Grieving and Bereaved Children (Jessica Kingsley, 2018).
1 Huffington A. Thrive: the third metric to redefining success and creating a happier life. London: WH Allen; 2014.
2 Doka K cited in Stevenson S. What to say to someone who is dying. [Blog.] Senior Living Blog 2014; 14 April. www.aplaceformom.com/blog/2014- 14-4-what-to-say-to-the-dying/
3 Bell JC. Benny’s hat. Birmingham: Pomelo Pip; 2017.
4 Hirooka K, Fukahori H, Akita Y, Ozawa M. Posttraumatic growth among Japanese parentally bereaved adolescents: a web-based survey. The American Journal of Hospice & Palliative Care 2017; 34(5): 442–448.
5 Gladwell M. David and Goliath: underdogs, misfits and the art of battling giants. New York: Back Bay Books; 2013.
6 Trickey D. Young people bereaved by suicide: what hinders and what helps? Bereavement Care 2005; 24(1): 11–14.
7 Pham S, Porta G, Biernasser C, Walker Payne M. The burden of bereavement: early-onset depression and impairment in youths bereaved by sudden parental death in a 7-year prospective study. [Online.] 20 June 2018. https://doi. org/10.1176/appi.ajp.2018.17070792