SUPPORTING YOUNG CARERS WHEN A LOVED ONE IS TERMINALLY ILL

SUPPORTING YOUNG CARERS WHEN A LOVED ONE IS TERMINALLY ILL Christine Comacle-Smith & Jenny Leitch Crossroads Caring For Carers

“BIG DYING and LITTLE DYING” From early childhood loss is a constant feature of our lives: • Moving house • Changing school • Falling out with friends • Loosing and breaking toys… “when I talk about dying, its on two levels. There’s big dying and there’s little dying. We are always losing and finding things, always breaking with the old and establishing the new. That’s the little dying. My experience…….is that big dying is like little dying, at least in terms of process and feelings. Our little dyings are meant to teach us what our big dyings may be like”. (Stanley Keleman)

QUESTIONS • What are you hoping to learn from this session? • What are the questions you would like answered?

CASE STUDY In your group, please try to answer the following questions (10 minutes) • What kind of emotions and reactions could Janice be experiencing? • What support do you think she needs? • How could this family be helped?

Anticipatory grief • Children’s awareness of death • Preparing children for a death in the family • Religion and death • How do children grieve? • Helping children to talk • Referring children for specialist help • Caring for ourselves • Activities

Approximately every 30 mns, a child is bereaved of a parent in the UK • Children have the right to know • Children need time to get used to the idea • Children need to say their goodbyes • Children need support to see the person who is ill at home or at the hospital or hospice • Children need to be involved according to their age and understanding • Children need to included in the planning and attend funerals

Anticipatory Grief Lindermann (1944): study on wives emotional detachment with husbands away during Word War 2 Saunders (1982): adult study on effect of bereavement shortly after death and again after 18 months found that after a short term chronic illness, bereavement was reduced in intensity compared to sudden death or a long term chronic illness. Worden (1986): anticipatory grief + mourning process begins early Rando(1986): it does not reduce the time spent grieving after death.

Children’s awareness of death • Long before we realise it, children become aware of death by: • Observing their environment • Watching TV • Listening to fairy tales • Play acting Death is part of every day life.

Developmental stages in their understanding of death • Preschool children: See death as reversible, temporary and impersonal • Between the ages of 5 – 9: Begin to see death as final and all living things must die. But still see death as impersonal • From 9/10 through adolescence: Understand that death is irreversible and that they will die too someday. Begin to work on developing philosophical views of life and death Stages helpful to understand how children perceive death but we cannot generalise

Preparing children for death in the family Parents want to protect their children. They think that by not talking about it, their children won’t be affected and will therefore not need to worry However it is more helpful to talk about death so children feel included and valued It helps children to be prepared so that when death happens it is not so much of a shock It also make it easier for parents to be more open whenever their children are around

The easiest way to talk to children about death is by being direct, clear and honest. Marjorie Mitchells says that “neither dogmas of immortality nor that of death being the final end are likely to create positive attitudes in the child and adolescent”. Neither is “I don’t know” very helpful but to say “NO ONE YET KNOWS” is in keeping with the natural urge of the exploring child, who from babyhood is bent on finding out what life is all about. She suggest saying “PEOPLE ARE STILL TRYING TO FIND OUT, JUST AS THEY ARE TRYING TO FIND OUT WHAT IS IN SPACE. PROBABLY WHEN YOU ARE GROWN UP YOU’LL GO ON TRYING TO FIND OUT TOO, BUT THE BRAIN IS LIMITED AND CAN’T FIND OUT EVERYTHING”.

Religion and death Religion can be a prime source of strength and sustenance to many families when they are dealing with dying. But if religion has not played an important role prior to the terminal illness, a child may be confused or frightened by the sudden introduction of religious explanations. “God’s will” or “Baby brother is going to be with God” could scare the child in believing that God might decide to come and get him next. “Mummy is going to be happy in heaven” coupled with obvious sadness can leave a child not knowing what to trust – what they see or what they hear.

How do children grieve? When children allow themselves to feel grief and express it by crying, they get over their grief faster. Holding it inside, pretending they are ok means that they could stay sad for a very long time. Children learn to grieve by watching adults. It is important for adults not to try to hide all their feelings in order to protect children. It gives children permission to express how they feel. Adults must also be mindful that children could try to hide their feelings in order to protect their parents. It is important that children can understand that it is all right to cry, to be sad, feel happy, playful and laugh. Listen to what they say and do not say. You may need to put into words things they do not know how to express. Maintaining as normal a routine as possible. Children need structure to feel secure during stressful times

It is easy for children to be forgotten when the focus is on the person who is dying Children need to be involved in appropriate ways and not be overburdened by caring responsibilities. They need increased support from grandparents, friends, neighbours, teachers and people they know and trust. They need to know there is someone to count on or they may become too independent and distrustful. Younger children especially may find it difficult to see beyond the here and now and what they feel may go on forever.

Grief is an emotion as natural as joy – it is not an illness It is a process, something to be lived through. Mourning is a process of suffering on the way to a new life. Everyone react differently. Children may experience all the range of emotions and reactions listed next or just a few in various degree of intensity or length of time. Each one would be quite normal though they can be frightening, overwhelming and difficult to cope with for concerned family, friends and professionals.

Numbness Denial and disbelief Emotions Behavioural problems Thinking Activities Suicidal thought Sadness Anger Guilt fear Relief (after the death has occurred) Dreams and nightmares Physical distress Confusion Loss of interest Loss of confidence Low self esteem Anguish Anxiety Loneliness hopelessness Emotions and reactions

Helping children to talk • It is always nearly better to say how sorry we are than to say nothing or avoid the subject • There is no magic formula to take away the pain of grief but we can show we care by listening • Children are great observers. They read messages on our faces and body posture. We express ourselves by what we do, by what we say and by what we don’t say • If we avoid talking about what is obviously upsetting, children will hesitate to bring the subject up or ask questions about it • Avoidance is understood as “if Mummy and Daddy can’t talk about it, it really must be bad so I better not talk either” • We must be sensitive as to when children are ready to communicate • Children are more likely to express themselves in art, play or actions than words • Not talking about death doesn’t mean they are not communicating

DO • Be available to listen • Learn as much as you can about the illness • Reassure children that nothing they did or didn’t do caused the illness • Explain what to expect if visiting hospitals etc. • Help them express their feelings: • Use list of common feelings: being sad, mad, glad, happy, scared and lonely • If no words, can use their hand to indicate how much they feel • Use face drawings depicting feelings • Use cards showing all the feelings

Show warmth and care • Empathy • Be non-judgemental: accept how they are reacting • Respect: let them show and feel any emotion they chose • Genuineness: don’t play a part, be yourself • Listen more than you talk • Clarity: if you don’t understand, ask them to explain • Open questions ‘why’, ‘how’, ‘when’ and ‘what’ encourage children to talk • Ask them to explain back again what they have been told so misconceptions can be corrected. • Silences: can be used to marshal thoughts or think about something difficult. Give them time • Listen to what isn’t said: listen to how they speak, look at their body language

DON’T • Don’t avoid the child • Don’t let your sense of helplessness keep you from reaching out • Don’t change the subject because you think it is too painful for children • Don’t say “I know how you feel” • Don’t tell them how they should feel or to “pull themselves together” • Don’t think you can soothe the pain away with “time heals”, “try to think about something else”, “when the person dies, they won’t feel any more pain” etc. However well meant, such remarks don’t help the intensity of emotions and can be very hurtful. They may also prevent the child to opening up in the future.

Children may need professional help (CAHMS) if they show evidence of: • Persistent anxiety about their own death • Destructive outbursts • Compulsive care-giving • Euphoria • Unwillingness to speak about their situation • Expression of only negative feelings about their dying loved one • Persistent behavioural problems such as aggression, stealing • School phobia • Persistent poor academic performance

Caring for ourselves What makes this work especially difficult for us? • If you know the people involved • Situation has a parallel in your own life • Work climate does not allow you to express the emotional impact • Situation hits you when you are already tired, exhausted or experiencing a crisis (work or personal) • You are unable to help

What can you do? • Learn more about stress • Be observant of what is stressful for you • Listen to your body’s signals • Clarify your own and others expectations for you • Ensure variation in work and leisure • Look after your self and your family • Give yourself the same care and consideration that you give others • Be involved in what you do but do not go under • Regular team meetings • Regular supervision with feedbacks • It is ok to say “NO”. It is the mark of self awareness, strength, confidence and integrity to recognise when something is beyond our expertise.

Activities Pre-bereavement care gives the young carer the opportunity to think and talk about their feelings and to share their worries The art process allows children to express symbolically thoughts, feelings and perceptions about themselves and others They learn to recognise and express their feelings Coping skills can then be developed When drawing, encourage ideas and expressions rather than drawing ability During difficult emotional time, children often regress and scribble, erase, cross-out, draw something unrelated or leave the page blank. This is all right. It is the beginning of finding a voice for unspeakable thoughts and feelings

Making a Memory Box • Best for the dying parent to make one with the child • The box can be made, decorated together • It contains things that remind the child of their time together with the parent and provides an important link between the child and the deceased parent • It can contain gifts, shells, pebbles collected together. Memories written on cards, letters, anything that the child can look at to help them feel connected with that person

Salt sculptureTo help children to develop and represent their memories in a practical, visual and tactile wayProducing a salt sculpture = therapeutic activity, promote reflection and the opportunity to talk. Material: • baby food jars • Table salt • Coloured pencils • Coloured chalk • 5 sheets of A4 paper • sellotape

Method: Identify 5 memories or characteristics of the person who is dying, has died or what life was like before the loss Match the memories with a colour Divide the salt into 5 on the pieces of paper Grind the coloured chalk into the salt and put to one side Pour the coloured salt into the jar whichever way you wish. For e.g. pour all of one colour in or keep some back to repeat the colour. Tilt the jar to avoid horizontal lines if you wish Special effects can be obtained by poking a cocktail stick down the side of the glass. This allows the upper salt to flow into the lower. Ensure that the salt has settled and is full to the brim (tap the bottom of the jar gently on the table) before putting the cap on and taping down.

Loss and bereavement reading list • Elizabeth Kubler Ross: On Death and Dying (Tavistock Books) • Elizabeth Kubler Ross: On Children and Death (Collier Books) • Julia Neuberger: Caring for People Dying of Different Faiths (Austin Cornish) • Claudia Jewett: Helping Children Cope with Separation and Loss (Barnados Publications) • Good Grief (Cruse Publications) • Death in Different Cultures (Nursing times)

Sogyal Rinpoche: The Tibetan Book of Living and Dying (Rider / Random House) • Alberry, Elliot and Elliot: the Natural Death Handbook (Virgin Publishing) • Earl Grollman: Talking About Death. A Dialogue between Parent and Child (Beacon Press) • Philippe Aries: Western Attitudes toward Death from the Middle Ages to the Present (Marion Boyars) • John Bowlby: Attachment and Loss (Penguin) • Stroebe M, Stroebe W, Hanson: Handbook of bereavement (Cambridge)

Appendix To help understand how the stages of dying can impact on the family. Based on the work of Elizabeth Kubler-Ross: On Death and Dying. The Five “Stages of Dying” • Denial: “No, not me”. This is a typical reaction when a patient learns that he or she is terminally ill. Denial is important and necessary. It helps cushion the impact of the patient’s awareness that death is inevitable. • Rage and Anger: “why me”. The patient resents the fact that others will remain healthy and alive while he or she must die. God is a special target for anger, since he is regarded as imposing, arbitrarily the death sentence. To those who are shocked at her claim that such anger is not only permissible but inevitable. Doctor Ross replies succinctly, “God can take it”

3. Bargaining: “Yes me, but…” Patients accept the fact of death but strike bargains for more time. Mostly they bargain with God – “even among people who never talked with God before”. They promise to be good or to do something in exchange for another week or month or year of life. 4. Depression: “Yes me”. First the person mourns past losses, things not done, wrongs committed. But then, he or she enters a state of “preparatory grief”, getting ready for the arrival of death. The patient grows quiet, doesn’t want visitors. “when a dying patient doesn’t want to see you any more, this is a sign he has finished his unfinished business with you and it is a blessing”. He can now let go peacefully.

5. Acceptance: “My time is very close now and it’s all right”. Dr Ross describes this final stage as “not a happy stage but neither it is unhappy. It is devoid of feelings but it is not resignation, it is really a victory”. These stages provide a really useful guide to understand the different phases that dying patients may go through. They are not absolute; not everyone goes through every stage in the exact sequence at some predictable pace. But this paradigm can if used in a flexible, insight producing way, be a valuable tool in understanding why a patient may be behaving as he or she does.

Handouts • Help The Hospices: Young Carers Guides – information for young carers who look after someone with a terminal or life-limiting illness • Child and Adolescent Psychiatry Faculty: list of books on Death and Dying to read with children • Simon Says Child Bereavement Support: Children’s Age and Understanding of Death • The Four Tasks of Mourning for Workers on recognising how workers may be affected by some form of grieving process • A Multi-Faith Society – to provide an awareness on different responses on death and dying

SUPPORTING YOUNG CARERS WHEN A LOVED ONE IS TERMINALLY ILL