Workbook to support ongoing learning following completion ... · Workbook to support ongoing...

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© Child Bereavement UK Registered in England and Wales: 1040419 and Scotland SCO42910

Workbook to support ongoing learning following

completion of Child Bereavement UK training

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Contents

Section 1. Introduction Section 2. The Process of Grieving Section 3. The Death of a Child Section 4. Bereaved Children and Young People Section 5. Developing Listening Skills Section 6. Developing Self-Awareness Section 7. Beliefs and Thoughts on Dying Section 8. Coping with Stress Section 9. References and Useful Information

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1. Introduction

The material in this workbook is designed to reinforce some of the key messages from the training day. You will also find some exercises to develop your self-awareness. The purpose of this document is to give you a resource that you can return to in order to facilitate your professional development.

Aims of the workbook

To enhance your understanding of loss and grief

To assist you in exploring your own feelings about death and dying, and developing greater self-awareness

To identify further learning needs

To advise on reference materials and resources which are available to help you translate your knowledge of the theory of mourning into practical skills

Some suggestions about how to use the workbook

Use this workbook in whatever way suits you best. You can read it through from beginning to end, completing the exercises as you go, or pick out and focus on the information and exercises which you find particularly useful. You may find it helpful to use the workbook as a resource to which you can return to reinforce your learning and confidence in the subject. You can complete the exercises on your own, although discussing them with someone else can give you further insight. Please remember that any exercise around grief and loss may well stir up emotions that are part of our own ‘loss history’.

It will be helpful to notice your emotional responses to the text, for example you may find some parts harder to read or think about than others. This could indicate areas of special personal significance for you and you may want to spend more time on them than other sections.

It is important to be aware of your own feelings, recognising where they come from and reflecting upon them. Talking about how you feel with a friend or colleague may be helpful as you’ll have a chance to clarify your thoughts. Alternatively you may find having access to good supervision or talking to a professional counsellor on a regular formal basis enables you to listen to yourself, explore what challenges you in this work, and find understanding.

Philosophy of Child Bereavement UK

Working with families who are grieving is difficult; it demands a particular kind of response which few people are trained or supported to offer. Child Bereavement UK (CBUK) has 20 years’ experience in providing specialised training and support to enable professionals across the statutory and voluntary sectors to meet the needs of grieving families. Poor care can exacerbate and prolong families’ distress, whilst care that is sensitive and appropriate can help families in their grief. The effects of this care are positive and long lasting. CBUK believes that it is imperative to support professionals in this emotionally demanding work. Our emotions often mirror those of the families, and to work in this capacity over time it is important to take into account our own needs and attitudes to death. Reflecting on and being aware of our reactions to situations helps us to better understand our strengths and weaknesses, and supports our ability to work effectively with grieving families. There are no set answers or ways of dealing with a particular situation. We can continually learn from families and find new ways in which we can support them. To help grieving families, CBUK has developed a number of publications including information sheets for families and professionals; DVDs showing parents discussing their feelings regarding the death of their baby or child, and children speaking about the death of someone important in their life; and books for children. Details of these publications can be found on the CBUK website at www.childbereavementuk.org

http://www.childbereavementuk.org/

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2. The Process of Grieving

“He’s dead; and the pain is immense. Your heart goes numb in the knowledge That he is no more. You daren’t ask why he, of all people, had to die – for you know there is no answer. And in your shock, You notice the world doesn’t stop turning even though he is gone.”

Glen Mitchell Gittelson A Sugared Bitter Tart

Although the experience of loss will be felt uniquely by each individual within a family, the process of grieving has universal traits. Through these notes we refer to grief and bereavement. This includes both the grief that can be experienced in anticipation of a death, as well as the grief and bereavement following a death. The Tasks of Mourning Professor J. William Worden stresses that mourning, which he defines as the emotional process that occurs after a loss, is an essential and necessarily painful healing process, which is achieved through a series of tasks (Worden, 1999).

1. Facing Reality Initially the bereaved person is likely to be in a state of shock and numbness, even when a death has been anticipated. This can manifest as over-reaction, whereby the bereaved person feels faint, cries uncontrollably, becomes hysterical or collapses. However, often the antithesis is seen and the person may display no emotion at all, appearing very controlled, calm and detached. This initial shock may last several days and usually allows the bereaved person to deal with all the necessary practicalities and cope with the funeral without losing control – a form of emotional protection. It is very important that the bereaved person gradually accepts the death of this significant person in their life and that they can never return, in order to allow them to begin the task of adjustment. Some people may not immediately be able to acknowledge what has happened and may cope by denying it or refusing to talk about it. Initially being able to see the dead person, being involved as much as possible in the preparations for the funeral, and observing rituals and traditions, all assist people to face the reality of what has happened. Families from different faiths and ethnic backgrounds may need support to enable them to carry out mourning rituals appropriate to their culture.

2. Experiencing the pain Once the numbed feeling gradually subsides and the reality of what has happened is experienced, the bereaved person may have intensely painful feelings which may last weeks or months. Their grief may overwhelm them so that they are incapable of thinking about anything or anybody else but themselves and how they feel. It can get in the way of everything they think and do. They may overreact to other people’s comments and appear irritable. Susan Hill, a writer and a bereaved mother, eloquently described her extreme sensitivity as ‘having one skin less’.

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As well as feelings of extreme sadness, the bereaved person often experiences guilt, anger and resentment. Many people struggle with guilt about some aspect of their relationship with the person who has died. Perhaps there were feelings they wish they had expressed, things they had left unsaid, or they had said things they didn’t really mean. Maybe they regret not having spent enough time with the person or really listening to them. Feelings of anger can be extremely powerful. The bereaved person may feel anger towards the dead person; anger for the loss of control that death brings; anger at the medical team for not curing the illness or keeping the dead person alive; and anger at their God for letting the death happen. Grief is not a mental illness, although sleeplessness, anxiety, fear, anger and a preoccupation with self can all add up to a feeling of ‘going mad’. These feelings are natural and when experienced and expressed will become less frequent and begin to subside over time. Talking about them and bringing them into the open is helpful. Expressing grief is cathartic and attempts to short-circuit painful feelings rarely help in the long term and may cause deep-seated problems in the years ahead.

3. Adjusting to a new world Facing life without someone you love is a difficult and painful process. No one can fill the aching void the person has left and each day life brings constant reminders of their absence. The future seems uncertain or even frightening and a tremendous effort is required to get through every day. It may take many months before the bereaved person is able to dwell less on the sad events surrounding the death and starts to function more as they did before the loss.

4. Finding an enduring connection with the person who has died This involves moving on to a new way of life without the dead person, whilst holding on to memories. It is a way of investing in life again alongside the knowledge that the dead person will never be forgotten. There is a sense of looking to the future, whilst recalling memories of time spent with the person who has died and finding comfort and pleasure in those memories. It is also a way of making life more meaningful and winning back control, so that the bereaved person is not continually ambushed by memories of the person who has died and trapped by painful feelings, but rather can choose when they want to reflect about their relationship with the dead person. It is normal at anniversaries for feelings of grief to be aroused again and these can be as vivid as on the day the death occurred.

Exercise - Understanding grief and loss

In trying to understand how a grieving person might feel, we can draw on a personal experience of a lost object. The feelings we experienced will help us to better understand grief and loss. Can you remember a time when you lost an object you really valued?

Describe what happened

Try to recall how you felt

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Can you relate your feelings to what are recognised as the normal reactions to loss, e.g. repeatedly looking for it in the same place, preoccupation, not being able to settle, irritation? The following feelings and behaviours are frequently associated with loss. Do you remember feeling or behaving like this? Write your comments or reactions in the spaces provided. Remembering these feelings will help you to understand how loss affects other people and will enable you to better understand yourself and others.

Searching

Intrusive thoughts – thoughts of the lost object keep disturbing you

Vivid memories of what you have lost

A sinking feeling

Feelings of fear and anxiety

Wondering how you will manage without it

Anger

- at the loss

- at yourself

Blaming other people

Powerlessness at not being able to find it

Bargaining – deals with God or yourself which might bring it back: ‘If I am good and work hard’ ….. ‘If I am nice to my partner’ ….. If I never do this or that again, maybe I’ll find it’ …..

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Fear of what you might lose in the future

Asking other people to look after you

Denial – refusing to believe you have lost it for good

Self protection – not wanting to own something similar again in case you lose that too

Exhaustion – both physical and mental Did any of the reactions you had in response to the feelings listed above surprise you? What were they?

3. Death of a Child

For parents, the agony of losing a child at any age is unparalleled. The feelings this loss evokes have been described as having part of you amputated, a vital part of you missing. Gradually the raw wound heals, a scar forms and the pain subsides, the body learns to manage without this vital part. But nothing can replace the missing part, and actions and events keep highlighting its absence and recalling the pain of its loss. The loss of a child is devastating. It carries with it the loss of the future, the hopes and dreams that can never be fulfilled. The longing for the child and the feeling of emptiness can last a lifetime. Parents in particular may suffer feelings of guilt – the child was their responsibility, it was their duty to keep their child safe. Was there something they could have done to have prevented their child’s death? Grief is solitary. Even when others in the family are grieving, the parent can feel alone and normal patterns in relationships may be disrupted. Couples often have an inability to communicate with one another, to express the awfulness of their feelings. A mother’s response is frequently different to that of the father. To illustrate the differences, Margaret Stroebe et al (1993) proposed the dual process model of grieving in which people engage in both loss-orientated and restoration-orientated grieving activity and oscillate between the two reactions. This may be particularly true when families are living the ‘seesaw’ impact of treatment for a sick child, when they oscillate between hope and despair.

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This diagram may have been explained to you on your workshop:

Everyday Life

Experience

Loss-oriented

Grief work

Intrusion of grief

Breaking

bonds/ties

Denial/avoidance

of restoration

changes

Restoration-

oriented

Attending to life

changes

Doing new things

Distraction from grief

Denial/avoidance of

grief

New roles/identity/

relationship

The Dual Process Model of Coping with Bereavement

Rationale and Description, Stroebe, M. & Schut, H. (1999)

Death Studies 23, 197-224

Women tend to be loss-orientated and are very much concerned with their feelings. They focus on their loss and the emotions they are experiencing. When the child has died they need memories on which to focus their grief. In contrast men tend to be more restoration-oriented – they often wish to ‘fix’ what is wrong, look for cures and have hope for the future. These different ways of dealing with grief can put a significant strain on the parents’ relationship and it is helpful for them to understand that their partner’s response to grief is natural and find ways of sharing their feelings and reaching out to one another. When people engage in either activity to the exclusion of the other it can cause difficulties. Women need help to develop some form of restorative response to enable them to move on from the intensity of the pain, and men need to be helped to allow themselves to face up to and explore their painful feelings. Attending the funeral

Everyone comes from a culture, not only a national culture and a religious culture, but a family culture as well. The bereaved family may be agnostic or atheist, Catholic or Church of England, Muslim or Jewish, Hindu or Sikh. Each group will have its own traditions that need to be honoured. The best advice is to assume nothing and when in doubt ask. People outside of the family should refrain from forcing their personal beliefs which may contradict those of the parents. It is important to recognise also that adolescence is a time of questioning and challenging, and young people may not share the same beliefs as their parents.

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Although some parents and grandparents may feel that children need to be protected from being present at the funeral, children usually find it helpful to be included in the family’s rituals of mourning. The funeral is an opportunity for them to witness friends and family show their respect for the dead parent or sibling and for the family together to start to learn to live without the dead person. To be excluded from these events can widen the gap between the grieving parents and the child. However a child who is frightened about attending a funeral should not be pressured or forced to do so. Some other way needs to be found for the child to say goodbye to the dead person – such as putting a letter or flowers in the coffin, lighting a candle, choosing a poem or visiting the grave. If children wish to attend the funeral, thought needs to be given to preparing them for what will happen and the service needs to be child-friendly. They need to be told that people will be sad and cry, and be given the opportunity to ask questions. They may like to take an active part in the service by choosing a favourite song or reading. It is often a good idea to arrange for a caring adult of their choice to be responsible for looking after them during the service so that the parents do not have to have this responsibility.

Exercise - Coping with other people’s emotions

Try to remember an occasion when someone was very upset in your company and started to cry. What was your reaction? Did you:

Give them a hug?

Feel embarrassed and wish they would stop?

Allow them to cry?

Cry with them?

Reassure them and try to stop them crying?

Sit in silence?

Leave?

Something else?

Having thought about your reaction and looked at the list of possibilities, how well do you think you handled the situation? Could you have handled it differently? Would you handle it differently in future? In general it is better for people to be able to express their emotions than to feel they have to bottle them up and hide their feelings. Expression of feelings is an essential part of the grieving process and requires the sympathetic presence of a caring supportive person.

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Ways to Remember

In order to look forward, we need to be able to look back and remember. Grief is not about forgetting the person who has died, but finding ways to remember – and in remembering, healing. When someone dies our feelings for them do not die with them, nor does our memory of them. Our memories and feelings stay alive and active inside us, so we need to find ways of expressing those feelings, which can help us internalise the person who has died and through this, allow us to move on with life. One of the most common fears that bereaved people express is forgetting how the person looked, or that they will not be able to conjure up all the memories. Consequently, these memories can become their most prized possessions, since there are no future memories to be made. It is extremely helpful to be actively involved in creating ways of remembering. This is as true for children as it is for adults. The Funeral Funerals are not only important as a way of saying goodbye to the person who has died, but also as an event to look back on and remember. There are now a broad range of choices available for funerals and they no longer need to be in the fixed format of service, followed by burial or cremation. The huge variety of funerals on offer means families really can create a service that captures the essence of the person who has died. Memory Box A special box can be made or bought in which to put precious possessions such as letters or cards from friends, dried flowers from the funeral, photographs or treasured possessions of the person who has died – for example a piece of jewellery, their glasses, a diary or letter. A range of memory boxes can be obtained from CBUK. Visiting the Grave For some people this is an integral part of their mourning for the person who has died. Often it is their way of maintaining a connection with the person, putting the rest of the world aside and communicating with them; telling their news, expressing their sadness, and often showing their love through flowers and other gifts. Memory Book Creating a special book in memory of the person who has died, in which photographs, poems, letters and thoughts can be placed, can itself be a helpful process for a bereaved person and it will be there for them to look through and remember. CBUK produces a memory book for children called ‘Remembering’. Planting Trees or Shrubs Some people like to plant a tree or a shrub as a way of remembering, perhaps commemorating it with a plaque. It is important to make sure that a hardy plant tree or shrub is planted to reduce the risk of it dying. It is also important that it is planted in a place where the family are always able to visit – if they don’t have a place of their own in which to plant the tree, parks and other public areas may give permission. Artwork Stitching a sampler and framing it can be a lovely option for those who like sewing, or they may like to paint a picture. Making something in memory of someone special who has died helps connect to them in the making of it, and gives the bereaved person something to treasure in the future. Candles Lighting a candle and perhaps reading a special prayer or poem can be a simple and yet powerful way of commemorating an anniversary or other special time.

http://www.childbereavement.org.uk/Shop/Memoryboxes

http://www.childbereavement.org.uk/Shop/Forchildren

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Walks A parent once wrote a beautifully illustrated leaflet about a special walk in memory of a little girl who had died. The leaflet briefly described the little girl, showed the route and invited anyone who was interested to go on the walk. It was about two miles long, down roads, through a wood, ending up at a river. Along the way there were little hand-carved commemorative plaques with just a few lines of a poem or a line drawing. People could do something similar in their own way, wherever they live. Journal Writing a diary of their journey through grief can be helpful for bereaved people for a number of reasons. Putting into words what they feel can help release some of the pain. It is helpful as a reference point to look back on how they felt before, and to realise however bad that was, they survived. It also allows them to look back on what they have been through and what it was like. How people use such a journal is, of course, very individual – some people sketch, others write down memories, some pour out feelings, or a combination of all of these, or they can do something entirely original to them. ‘In Memory Of’ Some families, particularly when a child has died, like to create a charity or a scholarship in their memory – a living memorial to that person. It can be a way of healing the wounds of the person’s death, by either investing in a cure for the disease that led to their death, or perhaps by developing their field of interest or continuing their work. Undoubtedly this can be an extremely productive and helpful enterprise. However, it is important not to allow the charity to become all-consuming so that it diverts too much energy away from the grieving process and an acceptance of the reality of the loss. Remembrance Service Many organisations hold memorial services; hospitals, for example, often hold a remembrance service each year. These services are usually very beautiful and enormously appreciated; there is something deeply moving about a group of people from very different backgrounds, coming together in one place to have a shared experience – remembering the special person in their lives who has died. The services are often non-denominational, simple with a few readings, poems and hymns, with a time for those attending to light a candle in memory of those who have died. For some people who have really moved forward in their lives, it is a time they can put aside to remember, love, feel the sadness and somehow not be diminished by it, but feel enriched by the remembering and the loving. There is a dual purpose in finding ways to remember, both in the task of creating whatever the person chooses and in having something to look back on or to turn to at special times and connect again with the person who has died. There is no right or wrong way of remembering, nor is this a task of seeking perfection. At its best, it is a deeply personal expression of love for this special person in their life who has died and yet lives on inside them.

4. Bereaved Children and Young People

How parents and professionals respond emotionally to bereaved children and young people can have a profound impact on their ability to deal with the enormity of what is happening. It is impossible not to communicate with children. Not speaking only serves to create fear, not diminish it. Children need support in their feelings, not protection from them. As with adults, children need information and the opportunity to express their fears, questions and confusions. Often both adults and children protect each other from these feelings, with the heartfelt wish of reducing pain.

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This can lead to a conspiracy of silence, where both feel alone and lost. You may be able to be the mediator of communication, building bridges between the family members. If they still feel the need to protect each other, you can at least give them the opportunity to express themselves to you. Siblings’ responses to a sick child or a child who has died can be complicated and varied. They may feel resentful and angry towards their brother or sister for diverting so much of the attention away from them; they may also experience tremendous guilt in entertaining these negative feelings. Often they may not be able to express themselves through words, but may exhibit behaviours like bed wetting and violent tears. Sometimes they may not show any feelings at all. They may have spent years anticipating and thereby grieving the death of their brother or sister, so that when it happens, they exhibit less sadness than their parents.

How children respond to a loss depends on a number of factors:

Their age and consequent understanding of death

The nature of their relationship with the person who has died

The circumstances of the death

The reactions of other family members to the death

The overall effect on the family unit

Their culture and religion What bereaved children need

A child’s first instinct is a basic one of survival, so it is vital that they are given information about who will be taking care of them and how

Children need clear, accurate and truthful information about the illness or the death – what they are not told they will imagine, and what they imagine is likely to be worse than the reality. This information may have to be repeated many times, and it helps to check with them that they have understood what has been said

When talking to children, it is important to use age appropriate language and concrete terms, not euphemisms

Children need to feel involved and included during the illness and after the death in order to facilitate a healthy grieving process. Memories of the funeral can help them to accept the reality of the loss

A bereaved child is a child, first and foremost, so routine activities should be continued. It is important to listen carefully to their fears, fantasies and questions. And remember children need to be allowed to tell their story too

Children are often told what to feel, but need to be able to say for themselves what they are really feeling

Children often have active imaginations and may need reassurance that they didn’t cause the death

Parents are models for the expression of feelings – children will learn from their parents either to express themselves or repress their feelings

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Reactions to the death Children’s capacity to sustain sad emotions increases with age and maturity. Apparent lack of sadness may lead adults to believe they are unaffected by the loss. Normal signs of grief in children, particularly young children, include bed wetting, loss of appetite, tummy upsets, restlessness, disturbed sleep, nightmares, crying, attention-seeking behaviour, difficulty concentrating, increased anxiety and clinginess. These only become a cause for concern when they occur over a prolonged period of time.

Older children often display changes in personality and alterations in psychosocial functioning including depressive mood, sleep and appetite disturbances, angelic behaviour, rudeness, learning problems, lack of concentration and refusal to go to school. School work may be affected by underachieving or overworking. Boys, particularly in teenage years, are likely to experience academic difficulties in the early months following parental death, but bereaved children do not necessarily develop long-term learning problems. In adolescents, bereavement can cause a regression to a younger, more dependent stage in their development. Emotions may be suppressed, resulting in a display of apparent indifference or lack of feelings. In a search for love and affection, they may develop premature new sexual relationships. Some teenagers start truanting, turn to petty delinquency or begin shop-lifting as a general protest against the upheaval in their family life. This is more likely in adolescents who have lost their mother, particularly girls. Others become silent, withdrawn and self critical. Many young people will grieve privately and shed their tears in the solitude of their own rooms, maintaining a brave face in society. In an attempt to numb the pain some youngsters develop self destructive behaviour such as excessive drinking or drug taking. Reaction to the fear of death may cause some teenagers to take unnecessary chances with their lives. By confronting death they try to overcome their fears and demonstrate their control over their own mortality. Some children will assume the role of a parent taking on heavy responsibilities causing them to mature rapidly and denying themselves the opportunity or permission to grieve. Others will take this experience in their stride. Often after a major bereavement children suffer some form of depression and a loss of confidence and it is important to help build up their resilience. Life has dealt them a terrible blow and they may feel incapable of carrying on. They need help to examine their own skills and acknowledge the things they are good at, to focus on the positive things that they can do, however small, to improve the situation. Although they may have lost an important person in their life, they can usually find other support mechanisms, such as a favourite relative, a close friend, a special teacher and draw strength from them. This will all help to bolster their self esteem and self efficacy and enable them to face life again.

Children’s understanding of death at different ages 0-2 years Toddlers react emotionally and physically to the disappearance of a significant person in their life to whom they were attached, even if they are unable to express their feelings in words. They will pick up on parental feelings of grief and changes in their routine and are likely to feel confused and fear separation from close family members. They do not understand the concept of death. 2-5 years Young children can understand the concept of death, but do not appreciate its finality and may expect the dead person to reappear – “shall we dig Granny up now?”. They think in literal and concrete terms and so will be confused by euphemisms for death such as, ‘lost’ or ‘gone away’ or ‘gone to sleep’. They may require repeated explanations of what has happened. As their thinking is very much centred on themselves, they may consider that something they did or said caused the death. They are prone to fantasise at this age and if not told what is happening, may dream up something more frightening and far-fetched than reality. It is thought the capacity to mourn is acquired around 3 - 4 years of age.

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5-8 years At five years of age most children realise that dead people are different from live people – they do not feel, they cannot hear, see, smell or speak and they do not need to eat or drink. By seven years of age the majority of children accept that death is permanent and that it can happen to anyone. They are more able to express their thoughts and feelings but may conceal them and appear unaffected. They need to be given an opportunity to ask questions and to be given as much information as possible to allow them to adjust. They are likely to be very interested in the rituals surrounding death. 8-12 years At this age children’s understanding of death almost matches that of an adult, although they find it difficult to grasp abstract concepts. An important factor is their deepening realisation of the inevitability of death and an increasing awareness of their own mortality and the fear this can cause. Adolescence The struggle for independence and increasing intellectual ability which occurs at this age may cause teenagers to challenge the beliefs and explanations given to them by others. They may question the meaning of life if it ends in death. Teenagers may find it easier to discuss their feelings with a sympathetic friend or adult than with close family members. They may be having difficulty coming to terms with their own mortality and that of those close to them, and cope by refusing to contemplate the possibility of death. This can lead to risk-taking behaviour that can be very worrying for parents.

5. Developing Listening Skills

Please listen, listen & listen again - that is what families keep telling us. Working with grieving families is one of the most difficult things anybody may have to face, and it is not unusual to experience feelings of powerlessness and inadequacy when faced with the enormity of their loss. It is important to remember you can be very powerful in the area of emotional support. You may feel impotent medically, but you can be potent emotionally. This can be crucial to the family’s future psychological wellbeing. Your key tool in this is listening. Listen to the family’s individual needs, anxieties, and beliefs so that you can meet them where they are coming from. Never underestimate the power of being fully heard. Families can often feel as if they are in a foreign country, with no language and no map; by listening to their individual needs you can help them find their voice, and through that help them find their way. We all want to ‘get it right’, but the uniqueness of each situation means there can be no blueprint for emotional support. However, it is less likely that you will make irreparable mistakes with a family if you have been able to see the world through their eyes – and if you do make a mistake, the strength of the relationship is likely to enable you to work through it. Another area of uncertainty for professionals when responding to situations of death and dying is knowing what to say. There are no perfect words or answers. Every situation is unique. Finding an appropriate way to respond comes with understanding, experience and trusting our intuition. The more self-aware we are, the better we are able to trust that intuition. Our ability to be human and caring, our willingness to help, when genuinely felt, will communicate itself. A good listener helps people to listen to themselves. This section will help you to develop your communication skills – mainly the skills of active listening. Having a clearer understanding of what contributes to being able to listen more attentively, and what can get in the way

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of being able to hear another person, will be a powerful tool in your development both as a professional and personally. Listening to others means using all of our senses to pick up on what the person is communicating, both verbally and subliminally. The Chinese Pictogram shown below helps to demonstrate that listening involves much more that just what we are hearing.

The Chinese Pictogram for Listening

We need to listen with our ears, listening to the words, the tone of voice and the feelings being conveyed.

We need to listen with our eyes, observing body language and facial expressions. Maintaining eye contact lets the other person know we are concentrating on what they are saying.

We need to give our undivided attention to the other person and notice what is being said, and also what is NOT being talked about. By setting time boundaries we create a safe environment and enable the other person to know how long they can expect us to spend listening to them, so that the interaction doesn’t end abruptly.

We need to listen with our heart, communicating our interest and empathy by our own voice tone and body language.

We need to use all of ourselves to connect with the other person, to ensure there is two-way communication.

Learning how to listen effectively is a skill. Active listening requires that, as carers, we are truly self-aware and have explored and managed our own feelings. When we have given time to listen to ourselves and our innermost feelings, then we are more available to focus on others, without our own feelings intruding and breaking our concentration.

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Exercise - Learning to listen effectively

Listening is a key element of effective bereavement support. Some CBUK training days involve a listening exercise; if that was the case you can draw upon that experience now. Otherwise, try to recall a situation when you were listening to a child, parent or a work colleague, and one where you were telling something important to someone.

Think back to how you felt, as both the listener and the one who was listened to. What was that like? Which felt more natural?

You may have felt that the listener was an empathetic and attentive listener who understood what you had told them. Did you notice anything they did to convey this?

When you were listened to, did you feel understood or misunderstood, or perhaps they didn’t pick up the most significant aspect of what you said, or simply misheard. Did any of these things happen to you? Did you feel you didn’t explain properly, or they didn’t listen properly?

This is likely to be what a family member feels when professionals for any reason have not been able to listen to them. How easy or difficult did you find it to listen with your full attention?

Can you think of any ways you can give better attention? What do you need to do differently? Maybe you have noticed how others could listen to you better?

Working with bereaved or distressed and anxious families, there may be times when you find it hard to really listen to them. Is there anything you could do to make this part of the support you offer more effective?

Sometimes simply not having an appropriate place to talk without fear of interruption can make listening very difficult. Are there any practical changes which could be made in your work environment which would offer you and your colleagues a better chance to listen to the needs of families in distress?

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When you were talking, were you aware of being listened to? Can you identify what the listener did or didn’t do? What sort of effect did their behaviour have on you?

Families in distress often say that being listened to is helpful and provides comfort and relief. As professionals, we often feel we need to ‘do’ something; being alongside a grieving person and listening to them is doing something. Effective listening is an active process and needs considerable skills and resource.

Write down some of the ways you can listen to other people beyond just remembering what they said

You may have mentioned things like noticing the tone of their voice, non-verbal communication such as body language, facial expression, the way they spoke and the words they used. In what circumstances do you find it most difficult to listen?

What sort of concerns of your own make listening difficult?

You may have noticed that what other people said during the training day brought to mind your own personal experience of loss. It is often difficult to separate our own feelings of sadness and personal involvement when working with bereaved families. Do you have personal support available from a supervisor or from family, friends or colleagues at times when your work exposes you to painful experiences?

Sometimes what is not being said, what is being implied, what is being avoided by bereaved family members is significant. All of these subtle communications stand out more clearly if you focus on listening. You may also find that a spontaneous response comes to mind more readily when you listen fully and allow yourself to take in what is being said to you. This often lessens your anxiety about “What can I say to ease the pain of these people”. Listening carefully leads to more effective communication when you speak yourself. Involved listening will lead you to a genuine response which will be appreciated by the family. You cannot provide them with a solution, but to accept what they say and being alongside them in their distress will, in itself, frequently give comfort.

Try and recall a situation where you felt your presence was helpful and that what you did or said made a difference. On a piece of paper briefly describe the circumstances and what you think helped the other person. Focusing on positive interventions reinforces your self-worth as a carer and makes it easier to manage the more negative effects.

Anger is a very natural part of grief. If you feel you are being attacked and accused, it can be difficult to listen. If you are preparing to say something in reply, you may find yourself waiting for your chance to speak rather than listening to what the other person is saying. Pressures of other work, lack of time, tiredness and our personal feelings can all make active listening difficult, but you can consciously develop this skill.

In what situations have you found it most difficult to listen and talk to families in distress? Can you think what might have helped?

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Try to monitor your own listening skills when you are interacting with both families and colleagues. If you have a chance, jot down if you notice any positive changes in these exchanges when you focus fully on listening.

Listening Guidelines Only interrupt with questions to check facts or to clarify your own understanding while the person is speaking. You do not need to remain entirely silent while listening – encourage people to speak by:

Sometimes echoing what they have said:

“I was so shocked. I never expected my child to die.” “Yes, it must have been very shocking for you.”

Expressing empathy:

“I can imagine that must have been a terrible shock for you.”

Reflecting back what they have said in a slightly different way:

“Yes, it is hard to believe when a child dies.”

Noticing what hasn’t been said and offering an opportunity to talk:

“You haven’t mentioned how you feel about...” This shows you are offering an opportunity to say more but without requiring any specific response. If the subject is one they are not ready to address, you have left the opportunity for them to say that.

Saying something about your experience of them:

“You give me the impression you are.... …totally exhausted by what you have been through ...feeling responsible for your child’s death ...feeling very angry about what has happened.”

Stating that you have noticed something in this tentative way offers the chance for families to say “No, I don’t feel...but I do feel...”

This approach offers comfort and reassurance that you are taking account of their feelings and trying to support them by understanding and not judging. Although none of these responses provides any kind of answer, they will show you are listening and trying to understand the other person’s experience. Family members frequently feel very isolated in their distress and these kinds of responses from you will help them to accept their distress as a normal response which can be understood. It is not helpful to say “I know how you must be feeling”. We cannot ever truly know how another person feels, even if we have had a similar experience, but we can offer to try and understand and accept their feelings without trying to negate or judge them.

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6. Developing Self-Awareness

Working with families in grief is very special. We get close to people during the worst tragedy in their lives. In touching such sadness and pain and sharing in their tragedy we can be reminded of our own losses – the deaths of people special to us, the broken relationships, the anger and resentment never fully dealt with. In working with bereaved families we bring our own hurts and losses to each situation; our preconceived ideas about death; our willingness to care for others; our capacity to give of ourselves: and often our helplessness in the face of desperately sad events. The way we are will fundamentally affect the care we offer to others. So in working with grieving people it is essential that we become self-aware and get to know ourselves better, to know our own strengths and weaknesses and recognise our own needs. This can enable us to be better prepared for difficult situations. Developing self-awareness allows us to know how we think and feel, and enables us to clarify our values and beliefs about death and loss. In considering how we have experienced life, we may reflect on why we chose to work in a caring role. This may be because of a personal loss or bereavement. However, being taught by life itself does not automatically make us a better carer. It may mean we can begin to understand someone else’s pain, having experienced loss ourselves, but that very experience can make us vulnerable, stirring up painful feelings of our own, turning our thoughts inwards, and possibly putting us in touch with our own hurt, more than that of the person we are trying to help. It is important to recognise and acknowledge the feelings within ourselves, to reflect on incidents in our lives which have caused us pain – not only through death, but through other losses such as a broken relationship or illness. This helps us to have some insight into how we are likely to react in a certain situation, to be aware of our own limitations, and when we are likely to need someone else to talk to for support. Try the next exercise and see what thoughts arise for you.

Exercise - Getting to know yourself

Some questions to ask yourself:

What sort of person am I?

Why did I choose my career?

What are the normal stresses of my job?

What are the abnormal stresses of my job?

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Are there outside stresses that add to the difficulty?

Do I have a network of supportive people to call on? If so, who are they?

What makes me angry, resentful, ‘burnt out’?

What can I change?

If some things cannot be changed, how can I change myself, in order to cope? When we spend time considering ourselves – who we are and what makes us tick – we frequently come up with surprising answers. There may well be undesirable factors in our lives that we can’t change, but instead of letting them get us down we can find ways of managing them more successfully. There are likely to be a number of things that we can alter with some effort – we need to begin with a positive outlook and make a conscious decision to change things for the better. Sometimes just planning to do things differently in the future can make us feel a lot better about a situation. Clinical supervision is recognised as a valuable way of reflecting and gaining insight into our own feelings and responses. It can be offered by experienced individuals, either to groups or in one-to-one sessions. Another aspect of being self-aware is the concept of self monitoring. If we are aware of how we are affected by other people’s painful feelings, we can take positive action to look after ourselves and learn to manage in these situations. For example, if we are uncomfortable with long, silent pauses in the conversation while the bereaved person struggles to find the right words to express their feelings adequately, we could practise a relaxation technique such as concentrating on breathing which will help us to relax whilst allowing the bereaved person time to put their difficult thoughts and feelings into words. We also need to be able to read our own signs of stress or discomfort and find ways to make time for ourselves. One of the reasons that people burn out is that they often do not notice they are under pressure until it is too late. We must take the time to recharge our own batteries and seek support from colleagues and others when we need it. Interacting with someone who is profoundly sad and distressed during their relative’s illness, or after a death, can leave even the most experienced professional feeling inadequate and helpless. Professionals in healthcare choose their careers to make people better and take pain away, but in bereavement people need to have their painful feelings, to feel and express their emotions in order to work through their grief. When looking after bereaved families our feelings often mirror those of the bereaved and can be very difficult. In this interaction we may feel as if we have the weight of the world on our shoulders. We may carry feelings of discomfort in our bodies – tension can be felt in the muscles of the shoulder, or perhaps grief and sadness in the muscles around the neck, heart and stomach. Once we notice which parts of our body carry our strong

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and painful emotions, we can learn to look after this part of ourselves and release these trapped emotions by relaxation and other alternative therapies that we enjoy. Some people like vigorous exercise, others listening to music, having a massage or reflexology, or perhaps watching a comedy programme on television – all are therapeutic. Very often when we feel unable to deal with our own emotions, we develop protective strategies such as distancing ourselves from other people’s feelings, appearing unaffected and detached or conversely becoming very busy in order to avoid the pain. When we do not take care of ourselves, we can begin to develop negative feelings about ourselves and our work and see ourselves as failures. This may develop into anger and resentment which can colour our family and professional relationships. Some of the warning signs of feeling depleted include experiencing chronic exhaustion, frequently being upset, having difficulty eating or sleeping, developing headaches or backaches, having nightmares, feeling worthless and pessimistic, avoiding contact with others, leaving work early and arriving late, or perhaps overworking.

Exercise - Identifying feelings

As you read through this workbook you may find that certain elements evoke a response in you. Take a moment to notice how you are feeling. Is it what is contained in the text which is moving you or is it the text reminding you of something else?

What part of your body is the feeling coming from? Is it welling up from your stomach or is it your throat that is feeling tight?

Next time you see a moving film or watch a sad programme on television, try to identify what you are feeling sad about. How much of your sadness is about the film and how much is perhaps due to some unrelated event in your past which you feel sad about and the film is triggering? Reflect on where you carry these feelings in your body.

Once you realise you are carrying these feelings, you can look after yourself by thinking of ways of releasing these emotions. If feelings are expressed and acknowledged they are more manageable. Most people find talking about their feelings very useful but some people prefer to write about their experiences as this helps them to recognise what they have been through. Write any ways that you have found to release your own bottled up emotions.

Being able to effectively and appropriately communicate and listen enables us to help and support bereaved people effectively and safely. Child Bereavement UK training is designed as a way of providing this education.

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Exercise - Being aware of oneself A very simple way of learning how to develop self-awareness is through the way your body reacts to difficult situations. Spend five minutes totally focusing on your body and what it is doing. Sit and listen and experience:

What is your breathing like – is it deep or shallow?

Are you sitting comfortably? Can you feel the seat beneath you?

What is your facial expression – are you frowning or relaxed?

What can you hear?

Does any part of you feel tense?

Are you feeling tired?

Have you got any aches or pains?

Are you feeling hungry?

Are your clothes tight?

Are you feeling hot or cold?

Being able to notice yourself is the first step towards developing the conscious use of self. It is useful to carry out this exercise at regular intervals and observe how your body responses change in different situations and at different times of the day.

1. Try clenching your fist and feel what a tensed muscle is like.

2. Then open your fist, relax your muscle and remember what the difference between a tensed muscle

and a relaxed one is like. This will help you to identify when you are feeling tense and enable you to consciously relax your muscles and lose the tension from your body. Gradually as you become more self-aware you will be conscious of what you say, do, think and feel. You will be able to notice how you treat other people, how your behaviour changes in different situations and, if you consider it necessary, you can consciously change the way you respond. One way to consider self awareness is to consider what influences have been part of your life so far. What happens in families can be very revealing!

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Family Influences and the Genogram Part of getting to know ourselves better involves looking at our own family situation. None of us exists in a vacuum or in isolation – the way we are and the way we function are greatly influenced by our family background. The family is the most powerful system to which a person ever belongs and the physical, social and emotional functioning of family members is interdependent. Changes in one part of the system can profoundly affect other parts of the system. Genograms or family trees are a graphical way of recording information about family members and looking at how we are affected by relationships within the family. They enable us to see ourselves in a new way. The information included on the genogram can be as simple as just names, dates and events, or much more complex and include details such as objective information on medical, emotional and behavioural functioning of different family members. When starting to construct a genogram, it is important to decide what information you are most interested in and include details of those particular aspects. For example you may be interested in behavioural patterns and so you would include details on whether individuals are dominant or submissive, successful or failures, warm or cold. You may also be interested in how the family responds to traumatic events such as the death of a family member, redundancy, illness or alcoholism, and so it is useful to include a chronology of important life events. Once you have produced your own genogram you can start looking for patterns. The way a family adapts to problems can be repeated across the generations. Recognition of patterns offers the possibility of helping members alter those patterns and produce a better outcome for the future. You can also look for strengths and weaknesses repeated within the family and analyse whether you display any of these traits. Acknowledging these characteristics and where they come from will help you to build on the strengths and adjust for the weaknesses. It is interesting to note how birth order influences character. Great things are expected of a firstborn and the eldest child may suffer under pressure to excel. Youngest born children in families tend to be child-like and carefree. In contrast, the oldest born are more likely to be overly responsible, conscientious and parental; they may feel particularly responsible for maintaining family welfare or carrying on family tradition. Only children are often more socially independent, more adult-like in their behaviour but more anxious at times, due to the attention and protectiveness of their parents.

Creating a Genogram

Typically, individuals are represented by symbols – classically squares for males and circles for females, with lines between the symbols denoting relationships. The index person around whom the genogram is constructed (perhaps yourself?) has a symbol with double lines. For someone who is dead an X is placed inside the symbol. Two people who are married are connected by a line, husband on the left, wife on the right – divorce is denoted by two slashes across the line. If a couple has children then the symbol for each child hangs down from the line that connects the couple, with the eldest child on the left. Strong bonds between individuals can be signified by double lines and conflicting relationships can be shown by a wavy line. Normally at least three generations are represented on a genogram. A simple genogram is shown below:

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The genogram of Doris Taylor shows that she was originally married to Eric Shaw and they had one son, Charles. They divorced in 1977 and she married Alan Brown in 1980. They have two surviving sons, twin daughters and an adopted daughter, Rachel. Another daughter, Amy, died in 1990. Doris’s father, Edgar, is dead; she has a close relationship with her mother, Ethel. Her husband Alan does not get on with Doris’s younger brother, Andrew.

Once you have the simple genogram structure in place you can add details concerning medical, emotional and behavioural details which enable you to track inherited characteristics and medical conditions.

Exercise - Constructing your own genogram

In order to help you understand the factors that make each family unique and to give you an insight into your own personal attitudes which will influence you as you work with families, you may find it useful to create your own genogram. On a separate sheet of paper draw your genogram, including three generations of your family and add names, ages, health etc of the more important members. Write a short analysis of your family background, structure and how your family functions. Consider aspects such as religion, occupation, finance, discipline, relationships, family routines and rules, and ways of coping with problems. Think about how the individual members of your family show emotion and consder the display of emotion within your family. Write down what you see as the strengths and weaknesses in your family.

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For the weaknesses, how do you adjust or allow for these so that your work is not affected? What can you learn or do differently to change this particular weakness? Try asking your colleagues for feedback and be willing to give constructive feedback in return. A useful model of giving feedback is to say what your colleague does well and what he or she may do differently – not what he or she does wrong or could do better. Regarding the strengths you can identify, how do you see yourself utilising these in your work with families? Self Development Carl Rogers talks about the ‘Paradoxical Theory of Change’: “the curious paradox is that when I accept myself as I am then I change … we cannot change, we cannot move away from what we are, until we thoroughly accept what we are. Then change seems to come about almost unnoticed.” (On Becoming A Person, 1961) This concept of acceptance suggests that we cannot force emotional change on ourselves by thinking our way into it, it is only by accepting the emotional attitudes we have – like being vulnerable or sensitive to other people’s opinions – that we can begin to change them. The following is an interesting concept that connects with this idea of self-acceptance: We start off from a State of Complacency through Unconscious Incompetence – we are not aware of what we don’t know, blissfully ignorant. We move, through Training and Awareness into Conscious Incompetence – and become aware of our own inadequacy, creating anxieties of failure and non-acceptance from others (often painful). We then move, through Practice and Courage to a state of Conscious Competence – where practice feels artificial and contrived. At last we reach a state of Unconscious Competence – where we forget what we know as being separate from ourselves, and live it automatically. We then become aware of another aspect we had previously been unaware of and start the cycle again. So the process of development is the product. It has no finite end and is a life-long task.

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Exercise - Self development Self development Think of a time you learnt to do something new; like riding a bicycle, playing an instrument, or using a computer.

What were your initial feelings?

Were you aware of a critical or a supportive voice coming from inside you? What were the messages of this voice? Who did this voice really belong to?

How did those feelings change over the time of your learning?

What were the supports you had in place to help you?

What were the aspects that hindered your learning?

How did you know you had learnt ‘well enough’? Or is that something you never achieve?

Did you reward yourself?

Think of a way you could reward yourself. What is E-Motion? Previously we focused on self-awareness by identifying feelings, what triggers them and how to support ourselves. It may also be helpful to understand the underlying role of emotions and their importance in our well being. Being aware of a discomfort in our bodies is not enough information to support us; we need to be able to identify the meaning of the discomfort – it is the messenger to our wellbeing. The discomfort will be telling us something specific like ‘I am frightened’ or ‘I am angry’. Once we identify the discomfort accurately, we are much more likely to be able to meet its underlying need. If we suppress our emotions, for instance by filling the emptiness that a family’s grief can evoke in us by becoming overly-busy, reaching for the chocolate or the wine bottle, it is likely to remain alive inside us. If, on

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the other hand, we recognise the empty feeling, find words to describe it and ways of expressing the emptiness, this allows a new feeling to emerge. This links to boundaries. If we listen to our needs accurately and respond to them appropriately, it is likely that we will be better supported to respond effectively to the complex demands of a grieving family. This enables us to maintain a separateness that is containing and holding, and avoids us becoming enmeshed and caught up in their pain. This also connects with Heidegger’s (Being and Time, 1962) basic idea of ‘being’ as an active process rather than a passive state. It is our very ‘beingness’ in relation to families which supports them. In other words ‘being’ is ‘doing’! To elucidate this concept further it is useful to look at how John Bradshaw, in his book The Family (1991), defined E-motion: The power to feel allows each of us to know our own unique spontaneous reality. Emotions are tools that allow us to be fully aware of where we are in fulfilling our needs. An E-motion is energy in motion. This energy (say the beating of the heart and tensing of muscles in anger) allows us to prepare to meet and resolve any threat to our basic needs. Without this energy (called anger), we are powerless to uphold our dignity and self worth. Fear is the energy of discernment. It allows us to assess danger and be aware of danger zones in terms of satisfying our basic needs. Sadness is the energy of saying goodbye and completing. Life is a prolonged farewell. It is a continuous saying goodbye and completing the cycles of growth. Grief and sadness give us the energy to complete the past. Saying goodbye to infancy and toddlerhood is essential in order to grow in the latency period of school age. Saying goodbye to school is essential if we are to make our way and take our place in the world. Growth demands a continual dying and being reborn. Grief is the ‘healing feeling’. Shame is the energy that lets us know we are limited and finite. Shame allows us to make mistakes and lets us know we need help. Shame is the source of our spirituality. Joy is the energy that signals that all is well. All needs are being fulfilled. We are becoming and growing. Joy creates new and boundless energy. Each person has the power to want and desire. This energy we usually call the volitional faculty or will. Our will is the power of desire raised to the intensity of action. Our choices shape our reality and our life.

Empowering others

The philosophy underpinning the person-centred approach, as described by Carl Rogers, is that ‘the person knows best’. Often when interacting with other people it is tempting to try to solve their problems, tell them what to do, how they feel and make their decisions for them. It is much harder to acknowledge that individuals have the capacity to know best about their own feelings and actions, and empower them to make decisions for themselves. To facilitate this approach, Carl Rogers considers that three basic attitudes are necessary:

Empathic listening – this can be very hard to do but involves giving our attention to the person speaking by putting to one side our own thoughts, so we can concentrate on what the person is saying. If we can let the other person feel that we are really listening and have understood what has been said, then the individual is more likely to open up and entrust us with their personal feelings and thoughts. Blocks to empathy include thinking we know best, needing to show how clever we are, and wanting to solve problems and ‘make it better’ for others.

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Acceptance – we need to be able to accept whatever is said without being judgmental or critical. This can be difficult as our own prejudices and conditioning may intrude, but it is important to allow the other person to feel safe and able to explore issues more deeply without fear of judgement. The more self-aware we are, knowing what we think, feel and believe, the more able we are to be accepting of difference.

To be genuine and congruent – this requires us to be authentic, honest and open in order to promote trust in the person we are dealing with. A false attitude will soon be picked up and will create mistrust in the developing relationship.

Person-centred art work A climate of empathy, acceptance and genuineness can promote personal development, but sometimes it can be impossible to adequately express feelings with words. Perhaps it is too painful, or the feelings are too deeply buried or the right words just won’t come. This is where art work can be so valuable – it can act as a vehicle for expressing and sharing feelings. Words are often used to distract, defend or to hide feelings, whereas images can be used to explore and reveal feelings which may be hidden deep in the subconscious. The use of imagery and play can be especially valuable when interacting with children. Such work involves the use of the right side of the brain – the creative, intuitive, non-verbal part of the brain, which is so often dominated by the thinking, analytical, judgmental, verbal, left side of the brain. As Philip Burnard (1992) described, the intuitive dimension tends to be undervalued and yet professionals are often required to intuit what other people are feeling in order to empathise with them. Art therapy provides a way of promoting and nurturing the creative, intuitive aspect within us. If we can think less, deliberately let our brain freewheel, we can access our creative force and produce an amazing array of symbolic imagery – messages from the subconscious. Spontaneous images can contain suppressed material. In recognising these messages in our own artwork, we can enhance our self-awareness and it can be a healing process. However, in working with others, we must be careful never to interpret their work, but encourage them to express what meaning it holds for them.

Exercise - Using art Prepare a blank sheet of paper and some coloured pencils or pens. Close your eyes, try to clear your mind and then focus on how you are feeling. Don’t consciously think about it or analyse it, but just experience the feeling and let the images surface. When you are ready, whatever comes to mind, however irrelevant or silly you consider it to be, just try and reproduce the images on paper. Simple line drawings are fine – nothing too complicated.

Now look at what you have drawn and try to describe your image and how it represents what you are feeling.

Why did you use these particular colours? Are they predominantly bright or dark colours? What do the colours mean for you?

Did you cover the whole page? Is there a lot of empty space? Does this have any significance for you?

Is there just one image in your drawing or is something else influencing how you feel? What is it?

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7. Beliefs and Thoughts on Dying

We all have spiritual beliefs, even if we are not religious. What matters are our personal beliefs, what gives our lives meaning. Everyone needs a sense of purpose in life. For some people this comes through a religious conviction, whereas others may be driven by a political or philosophical belief. It is important to explore our own beliefs and motivations and to recognise and acknowledge that not everyone thinks about things in the same way as we do. This means not being judgmental. If we are clear about our own sense of self we will find it easier to be open to other people’s points of view and to acknowledge them as valid, even if we don’t agree with them. In learning about what other people believe, it is important to enable them to decide for themselves what it is they would most value and encourage them to do what is right for them. Many of us avoid thinking of our own death and choose not think about it. But if we are to deal with death in our lives and help other people through this experience, we need to confront our own fears and anxieties about the subject. Being aware of our own thoughts can help us to be more understanding of other people’s feelings. We all come from a culture, a family culture, the family in which we grew up. When interacting with people from different backgrounds, cultures and faiths, it is particularly important to be aware of their beliefs and open to asking what is likely to be of help and support to them at the time of bereavement and what could be considered insensitive. It is vital we never make assumptions as to what is or is not appropriate. For a parent, finding out their child is going to die is probably the worst thing that can ever happen. Even for families who have known for some time that their child’s illness is terminal, it is hard for them to actually believe that their child is going to die. For some, the final decision to withdraw treatment can feel ‘wrong’; for others, it may be a relief. Choices are often perceived as empowering. However, when working with families who are facing life and death dilemmas, choices can be disabling. John Wyatt, a highly respected neonatologist, talks about allowing parents to have a ‘good death’, rather than ‘clawing back a broken life’. He also talks about partnering ‘expert’ (family) with ‘expert’ (professional) so they can work together to make these impossible decisions. The key to working with these dilemmas is for us, as professionals, to be aware of our beliefs and opinions, and able to hold them safe inside us, setting them aside to work with families. When this is not possible, we need to be honest with ourselves and in some cases seek support and stop working with this family.

Reflective Questions In the questions below on death and dying and your spiritual beliefs, you will also begin to look at your own ethical beliefs in more depth.

Does a fetus, a few hours after conception, have as much value as a ‘life’, compared to a full term baby?

Does the degree of the abnormality or disability denote a child’s worth as a human being – for instance does a less severe abnormality such as a cleft palate mean the child is more valuable than a child with spina bifida?

Are we playing ‘God’ when we turn off a life support machine?

What meaning is there to be made of the fact that bad things can happen to good people, and vice versa?

How can a perfectly innocent child die? Is there any sense to be made of it?

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The Importance of Endings For all of us, loss, endings and grieving will have a slightly different flavour or meaning, depending on our life experiences and culture. What we have come to understand is that although our reflex action may be to ‘get over’ the ending as quickly as possible, and do whatever we can to bypass the pain, this isn’t always the most helpful attitude. There is an enormous difference between a ‘good’ ending and a ‘bad’ ending. Often, a bad ending is to do with trying to avoid the difficulty of it and it is often the things we don’t do at the time that come back to haunt us later. The haunting can twist and wrench the loss in a way that can make it much harder to process. When we have experienced a ‘good’ ending it does not mean we don’t feel the pain, but that the pain can be slightly different because with it there are some healing memories and the warmth of knowing we ‘did all we could’, the peace of having found a way to say goodbye. It is also important to acknowledge that to talk of ‘good’ and ‘bad’ endings is probably too simplistic, as death can be a complex, messy business with both positive and negative aspects. Nevertheless, we need to recognise how important endings are, how they impact on our ability to grieve, and that it is through these memories that the healing occurs.

8. Coping with Stress

There is no doubt that the pace of life today is much faster than it was just a decade ago and we are all exposed to stressful situations both in the workplace and in our own homes. Many professionals have to deal with a lack of resources, too little time to complete a job to their satisfaction, too large a workload, as well as emotionally draining situations. The way we react to stressful events depends on our own individual make-up as well as how much control we have over a situation. If we can choose how to deal with an incident, or whether or not to deal with it, we are much less likely to find it stressful than if we are given no choice in the matter. Too many pressures? Questions to ask yourself:

How much of this ‘over’ demand comes out of my choice?

How much of it is because I really am the only one who can do it?

If I should go before the rest of you, Break not a flower nor inscribe a stone, Nor when I’m gone speak in a Sunday voice, But be the usual selves that I have known, Weep if you must, Parting is hell, But life goes on, So sing as well.

Joyce Grenfell

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How much is because I like to be the only one who can do it and to be seen to be the only one who can do it?

How much of what I am doing is what I really want to do?

If you are feeling pressured, try to analyse the situation and choose to do less or reorganise your workload – learn to delegate, ask for help when you need it, say ‘no’ and mean it. Skills for those with too many pressures Many of these skills overlap management skills, and they are particularly important today as we learn to put up with all the extra pressures life presents.

Know your own strengths and weaknesses

Know your own sources of ‘in-filling’ and reward

Set yourself realistic targets

Recognise your own need to demonstrate how over-worked, put upon, virtuous or superhuman you are

Build in time to allow for ‘lows’ and also time for personal restoration

Learn and practise new ways of sorting out what has to be done and when and how to do it

Develop relationships that will support what you are trying to do and will be a resource when you need help

Give yourself permission to ask for help when you need it

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Exercise - Coping with stress

We all have stress in our lives to a certain extent and some people seem to thrive on stress, but most of us just put up with it without really confronting it and considering whether we are doing enough to combat stress in our lives. The following table contains a list of suggestions as to how you might cope with stress in your life. Fill it in and indicate whether this is a method you already use, would like to consider using or feel is a negative way of coping with stress.

Methods of coping with stress

Often use Could consider using Negative method

Talk about it

Get tense

Drink too much

Take part in sport

Ignore it

Have an absorbing hobby

Get bad tempered

Get aggressive

Smoke a lot

Have a massage

Blame other people

Listen to music

Cry

Pray

Drive too fast

Use relaxation methods

Write it all down

Seek out someone to talk to

Some other ways

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We need to combat stress in our lives by taking control, making choices and resolving to change the things that can be changed and to accept the things that cannot be changed, planning time for personal restoration and reflection and making sure there are positive enjoyable elements to our lives. As a start to taking control of your life, make a list of things that you could do to make life better or more enjoyable for yourself. I intend to……. Now pick one simple suggestion and decide to actually do it in the near future. Also take one of the more longer term goals and start to plan how you could put it into operation e.g. find out more information; have a serious conversation with your partner; work out a budget. When you have achieved one of your goals, reflect on how it makes you feel. Hopefully it will give you a sense of well being and satisfaction and you will wonder why you didn’t do it earlier! Care for the caretaker Thoughts on looking after yourself:

Be gentle with yourself!

Remind yourself that you are an enabler not a magician. We cannot change anyone else, we can only change how we relate to them.

Find a hermit spot. Use it daily.

Give support, encouragement and praise to peers and to management.

Learn to accept it in return.

Remember that in the light of all the pain we see, we are bound to feel helpless at times. Admit it without shame. Caring and being there are sometimes more important than doing.

Make space for some flexibility and spontaneity in your life.

Learn to recognise the difference between complaining that relieves and complaining that reinforces negative stress.

On the way home, focus on a good thing that occurred during the day.

Be a resource to yourself! Get creative – try new approaches. Be an artist as well as a technician.

Use supervision or the buddy system regularly as a source of support, assurance and re-direction.

Avoid ‘shop talk’ during breaks and when socialising with colleagues.

Schedule ‘withdraw’ periods during the week – limit interruptions.

Say “I choose” rather than “I should”, “I ought to” or “I have to”, say “I won’t” rather than “I can’t”.

If you never say “no” – what is your “yes” worth?

Aloofness and indifference are far more harmful than admitting an inability to do more.

Laugh and play!

34


9. References and Useful Information To enable you to enhance your understanding of the grieving process and build on the information and training provided by Child Bereavement UK, a number of useful references for further reading have been included. 1. Barnard P, Nagy J, Morland I. 1999. Children, Bereavement and Trauma. Nurturing Resilience. Jessica

Kingsley Publishing

2. Brown E. 1999. Loss, Change and Grief. An Education Perspective. David Fulton Publications 3. Rogers CR. 1961. On Becoming a Person. Constable, London

4. Stroebe MS, Schut H. 1999. The dual process model of coping with bereavement: Rationale and

descriptions. Death Studies 23 (3): 197-224 5. Stroebe MS, Stroebe W, Hansoon RO (Eds.) 1993. Handbook of Bereavement. Cambridge University

Press, New York 6. Worden WJ. 1991. Grief Counselling and Grief Therapy (2

nd ed). Routledge

SUPPORT AND INFORMATION Support and Information helpline 0800 02 888 40* Monday – Friday 9am-5pm *Freephone number. Some mobile providers may charge, alternatively call 01494 568900 Email: Support and Information - [email protected] PUBLICATIONS Child Bereavement UK has developed a number of information sheets and award winning publications designed either to support the professional carer or for use directly with families. For full details of all publications available please visit our website www.childbereavementuk.org SUGGESTED READING AND RESOURCES For Bereaved Families For Professionals No part of this workbook may be reproduced without permission of Child Bereavement UK Child Bereavement UK Clare Charity Centre Wycombe Road Saunderton Bucks HP14 4BF Tel: 01494 568900 Fax: 01494 568920 Email: [email protected] Web: www.childbereavement.org.uk

mailto:[email protected]

http://www.childbereavementuk.org/Publications/Informationsheets

http://www.childbereavementuk.org/shop

http://www.childbereavement.org.uk/Support/Families/Readingandresources

http://www.childbereavement.org.uk/Support/Professionals/Readingandresources

http://www.childbereavement.org.uk/

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