Fragile Pieces

All too often children are cosseted instead of being brought into the grieving process. The justification for this decision is outwardly entirely rational: ‘Don’t upset the child.’ But, of course, the death of a family member or friend has short- and long-term effects for a child just as it has for an adult. There may be emotional difficulties for them at school and later, as young adults, it’s possible that they will suffer a loss of self-esteem and a profound sense of aloneness.

Losing a Parent

Instead of being shut out by the surviving parent, it is important for the child to be included in the grieving process from the start. High on the list of priorities for the surviving parent is the need to assure the child that he or she will be looked after, cared for and loved. This in itself might be problematic since a surviving parent may feel ill-equipped, as far as having all the skills necessary to care for and support the child or children, and, at the same time, to hold down a job. However, don’t be afraid to take your children into your confidence. Make time each day to sit with your children and talk over what has happened.

On a more practical level, even if the children are small, you might have to ask them to take on some more household responsibilities. This will not only give you all the chance to understand that you are still working together as part of a family, but also give you a framework to talk about the significant, though less serious, events that are part of everyday life. But remember that if you do ask your children to shoulder more of the day-to-day chores, it’s best if you are consistent in the demands you make of them. In other words, don’t impose extra work on them just because you may be busy at the time.

The child will have a lot of questions about the death that will probably be disturbingly frank: When? Where? How? and Why? These should be answered as openly and as honestly as possible. Perhaps most important of all, the distinction between the temporary and permanent absence of the parent should be made evident. This can be difficult with the very young. Children under the age of five have a poor understanding of the permanence of death and are likely to think of it as extended sleep. As a result they may even worry about sleeping themselves. Often the very young believe that death is a planned act for which someone is responsible. They may even feel that they are responsible in some way.

Those who are a little older realize that death is final.

However, they may seem morbidly interested in the process of the body’s decay rather than simply wanting to grieve. This may be because they tend to view death in very impersonal terms; it’s something that happens to other (and older) people. For this reason they find it interesting, but in what can seem to be a cold and heartless way. It’s possible that their impressions of death may be distorted by what they experience through television or the snippets of adults’ discussions about death they overhear.

Children of about 9-11 begin to realize that death is not only permanent, but also irreversible. They also have an understanding that it’s something that could happen to them. However, it’s not their death that worries them so much as the possibility that one or both of their parents will die – and soon. Some children attempt to hide their fears by joking about death or pretending to be perfectly indifferent to it.

Like adults, children experience similar stages of the grieving process, but can react differently. This is because they have limited experience of life and find it difficult to express the confused jumble of emotions they feel. Extremes of behaviour are common. They may at turns seem very upset and then totally disinterested in what has happened. They may want to talk about the person who’s died all the time or conversely not at all. There may be similar reactions in their attitudes to schoolwork. Almost inevitably there will be some children who constantly want attention or complain of minor illnesses such as headaches or stomach upsets.

Sometimes these extreme reactions can persist and deepen.

Some children may exhibit a constant and unreasonable anger towards everyone and everything. This may be manifested in shouting or screaming or in physical attacks on siblings or friends. Sadly, animals are often the victim of a child’s confused state; they can feel that it’s acceptable to take out their anger on a family’s pet or to shoot at birds with a catapult or air gun. Depression for children can be a real problem. They may isolate themselves from all their friends and family, develop an extreme fear of going to school, and threaten suicide. If you feel your child’s behaviour goes beyond a normal expression of grief then consider outside help.

Given these stresses, it is immensely difficult for those left behind to pick up the pieces of their lives, and start to recover. It’s quite possible that specialist help will be necessary to overcome the barriers of silence inside the family, and feelings of public isolation. However, regardless of whether a specialist is brought in, there are a number of strategies that you can use to help cope with your loss:

• Talk Make sure that the family talks about what has happened. It’s important for everyone to show each other constructive support at this time. This is especially true in the first few days following the death since this is a time when feelings of guilt, and bitter accusations of blame, are likely to surface and stifle and ensnare a family in a cycle of unhealthy recrimination.
• Be objective It is common for survivors of an adult suicide to view the death, and the person, in extreme terms. This can result in seeing your loved one as having had an almost saintlike personality. In addition, survivors often assume total responsibility for not having foreseen the act itself, and blame themselves for not having ‘done enough’ to prevent it. While sadly there is sometimes good reason for such guilt, it is important to realize that suicide is not necessarily motivated by a feeling of not being supported by others, but can be a result of an unseen accumulation of stresses, or by psychiatric disorders and personality factors that probably could not have been influenced by immediate family members. It is essential to correct distorted guilt patterns and reassess attitudes so that the fact of suicide, and objective feelings of guilt, can be accepted as soon as possible. With acceptance and understanding, it is more likely that a sense of peace will follow.

Coping with a death that was self-inflicted is extremely difficult. It seems to be beyond question that the stresses on a family where a death is a result of suicide are greater than those imposed by most other forms of death. A great deal depends on the age of the person who takes their life, but in all cases the reactions of family members and friends are likely to be harsh and complex.

Stresses

In addition to dealing with the range of emotions that all the bereaved have to cope with, the families of a suicide face other extreme stresses. Typically they include:

• Denial In common with those who have become bereaved under less tragic circumstances, the families of suicides find it difficult to accept that their loved one has died. Yet, more than this, it’s not unusual for them to deny that the death was due to suicide at all. If the suicide was a teenager or young adult, his or her father tends to take it very badly. Of all of the family members it’s fathers who typically deny the fact of suicide the most. Even when they become more accepting, they commonly rationalize the act of suicide. Instead of recognizing in the tragedy any internal family problem or other unreleased pressures, outside factors such as drugs in society, the company that the suicide kept, and the breakdown of society as a whole are blamed.
• Shame There is such stigma attached to suicide that one of the most powerful emotional reactions to an act of suicide within the family is shame. Registrars are routinely asked to falsify death certificates by grieving family members who don’t want the truth to emerge publicly. Even within the family there is often a conspiracy of silence to keep the dread secret. To neighbours and acquaintances, the death is passed off as an ‘accident’.
• Guilt The guilt in the aftermath of a suicide is unlike the regrets and guilt associated with other forms of death. Instead of bitter regrets over a catalogue of actions or arguments, you might feel almost overpowering guilt not only for what you feel you should have done to prevent the suicide, but also for what you might have done that contributed to its happening. The guilt of parents whose children have taken their own lives may be extreme. Western society holds that they are responsible for the upbringing of children, and with the suicide they are deemed to have failed as stable, nurturing parents. Similarly, adult children may feel overwhelming guilt if their elderly, recently widowed parent died by suicide. They will inevitably feel they should have visited them more often. Partners of suicides may feel a peculiarly acute form of guilt since they more than anyone should have ‘seen the signs’.
• Fear A darker, and perhaps more disturbing, reaction to suicide is the fear that it can unleash. Primarily, this is the fear of self and of an individual’s impulse to self-destruct, but in addition it is the fear that someone else in the family might take their own life.

Perhaps more tragic, and very real, is the constant fear that people outside the family will discover the fact of the suicide and almost inevitably interpret it in such a way as to negatively affect the family’s social standing. There seems little doubt that someone who dies as a result of an accident, illness, old age or even violence is more likely to be viewed with sympathy than someone who takes their own life. The act is often interpreted by others as a shocking and violent end to a tragic story of rejection or abuse by (usually) the suicide’s father, and is symptomatic of a dysfunctional family.

These perceptions are increased if the suicide act of your loved one required some determination and energy, such as hanging, as opposed to a more passive end through taking an overdose of pills. Furthermore, even if there are mitigating factors, such as the proven psychological instability of the suicide, these tend not to alter an outsider’s interpretation of events.

Of course, not all of the difficulties of terminal illness relate solely to the patient. Friends and family are also affected. If you have been aware of the nature of your loved one’s illness, you will have been anticipating their death. It’s only natural, but it makes an already distressing ordeal all the more demanding. This is because in anticipating the death it’s likely that you will have been feeling guilty at thinking about the practical issues of how you will live your life after they are dead even while they are still alive. It seems as though you’re being disloyal in letting go before you’re supposed to.

But, again, this is to be expected. There is an inevitable conflict between looking after someone who is dying, and the need to reorder your life. It’s a pre-death reshuffling of roles that happens when people recognize that someone they love is dying that is similar to post-death grief. However, the two processes shouldn’t be confused, in the sense that in anticipating what happens after the death you will somehow subsequently grieve less. There isn’t a fixed amount of grieving that takes place when someone dies. You’ll just grieve differently, that’s all.

Younger children tend to have a very clear notion of causation, and commonly believe that since no-one else is to blame for their illness, they somehow are responsible for bad things happening to them. They may not openly say this, but it’s likely that these thoughts will be deeply troubling them. Questions like: ‘Why am I ill?’ or ‘What’s happening to me?’ can be coded messages from children, inviting reassurance rather than a straightforward explanation of what’s happening to their bodies. One way of gently opening up these thoughts, and resolving these fears, is to turn questions like these on their head and ask your child why they think they’re ill or what could be happening to them. Thus they have the opportunity to express what is really worrying them.

This doesn’t mean, of course, that children don’t worry about what’s happening to their bodies. They do. In cases where there are multiple treatments, constant side-effects, and occasional relapses and failures, it can feel to the child that their body no longer belongs to them, but somehow is the property of the doctors and nurses. Very young children can become extremely upset when medical staff have to take blood samples, not understanding that their bodies can replace any blood that’s taken from them.

Furthermore, children also may be aware that they will die.

They will be anxious about this even though they might not openly say so.

All of these constitute delicate subjects that should be treated according to your child’s age and understanding, and in a spirit of honesty, reassurance and supportiveness. Children aren’t incapable of understanding what’s happening, and, like an adult, can feel very alone and fearful. They need to be listened to, by you and by professionals, and be given guidance on how to face their illness, and to live optimistically despite it.

Perhaps the most important factor in relation to terminal illness is for you and your loved one to maintain a belief and dignity in life until death comes, despite possible increasing pain, and decreasing autonomy. For some people for whose illness there is no cure, the needs of security and support are not necessarily provided by a conventional hospital. Hospital staff don’t have the luxury of time to devote to dying patients or their loved ones. The primary aim of a hospital is medical and physical intervention, without necessarily taking into account the emotional needs of the patient or those closest to them.

An alternative is hospice care. The approach of a hospice is to alleviate suffering through medical intervention, and to maintain the dignity of the person who is dying while giving support to their family. A collaborative programme of care is developed, and the family is consulted and included in providing support for their loved one. The intention is to allow the patient to die with dignity, and in an atmosphere of humanity.

However, regardless of whether your loved one is in a hospital, a hospice, or at home, they will probably exhibit the fears and needs common to those in their position. It’s possible to identify these, and, with the assistance of professional carers, offer them some help in coping with a whole range of issues. Apart from the illness itself, these can include the sometimes painful diagnostic procedures, treatments such as radiation or chemotherapy, and turbulent emotional states including a sense of worthlessness, aloneness and a need to tidy up the loose ends of life.

• Fear of being alone One of the greatest fears of people who have been told, or believe, that they are dying is that they may die alone. Sometimes they feel that any physical deterioration may turn people away; they fear that they might become too repulsive, or ugly, or too much of a burden. In a sense this is true. Often, when death is inevitable or draws near, friends and relatives outside the immediate family tend to disengage themselves, and draw away from the dying person on the assumption that they would want to be alone in order to prepare themselves for death. There may be additional factors that influence whether or not people visit the dying person. For example, the continuing stigma of a disease such as AIDS might keep potential visitors away from a dying AIDS patient. But a person who is dying needs the love and support of their closest and dearest. It’s a very human need. They need you to be there to appreciate them, to reminisce, to cry and to laugh.
• Feelings of worthlessness Up until the time they started to become ill, people who are dying had a more positive selfimage, and a greater sense of worth as members of their family and society. However, their illness may have led to a gradual physical deterioration to the point that they are unable to go to work or even live at home. Whereas previously they may have had important jobs, or contributed to the household as a decisionmaker or bread-winner, these roles are gone. With these, all too easily, goes their positive self-image. It won’t help their feelings of uselessness to say: ‘Don’t waste your time thinking about these little things. You just concentrate on conserving your energy. Don’t waste it.’ You can help restore their spirits and feelings of selfworth by finding ways to fully involve them in making many of the important everyday decisions that involve family members and finances. You could draw up a list of decisions that need to be made, or an account of expenses that need to be sorted out, and find a regular time to discuss them. Naturally, they should be fully consulted in all the medical decisions made on their behalf.
• A need to ‘tidy up’ For those adults who recognize that they are dying, there is usually a need to put their affairs in order. This can take the form of writing a will, planning the funeral or making sure that the family is financially secure or employed. It can also involve a desire to release old resentments, and to resolve any outstanding personal or family feuds that may exist. These issues can be painful, not only because of what might be said, but also because this might seem as though they are somehow ‘giving in’ to death or abandoning hope. This probably isn’t the case; when people feel they are near death they can feel an extreme need to tie up the loose ends of their life. Their attitude may be rather businesslike, but that’s only because they know that there’s so little time left. You’ll help in being similarly pragmatic in order to bring them towards a sense of closure and inner peace.

In the despair following a child’s death, the grief of the surviving children can easily be overlooked, since friends and relatives generally pay their respects to the parents first, and only afterwards to the children. If the surviving child or children are teenagers or younger, they may hardly be acknowledged at all except with a passing ‘Are the children coping?’

Perhaps, if it was pointed out to someone that this attitude was slightly thoughtless, they might dispute it, saying that the parent-child relationship is the most significant – a sibling is someone who’s ‘just’ lost a brother or sister. The received wisdom appears to be that the grief of a parent who has lost a child is greater than the grief of a sibling of that child.

But a sibling’s grief is not ‘greater’ or ‘lesser’ than a parent’s; it’s simply different. And, regardless of whether they got on with their brother or sister when they were alive, it’s very real. They have lost someone who shared a common bond and background. Despite this, many surviving children feel they can’t express their feelings to the rest of the family, which in turn increases their sense of frustration, anger and resentment at being left alone to deal with their grief.

In many cases they are expected to help their parents grieve, and this can be a heavy burden because they feel that they always have to be upbeat for their parents’ sake while keeping their own grief private. Don’t forget that children can experience acute feelings of guilt as well, especially if they fostered long-term ill will against their brother or sister. For other siblings, who have lost a close companion who shared a special bond during childhood and adult life, there can be intense and long-term feelings of regret. These feelings often emerge at significant points in the surviving sibling’s life when it’s apparent that their brother or sister is not there to share in the joy, say, of a marriage, birth of a child, or even moving to a new place and starting an exciting new job.

Surviving siblings also tend to believe that the favourite or ‘wrong’ child died. So, if your other (particularly younger) children begin to adopt the personality and habits of their dead brother or sister, it may be an attempt to lessen your pain as parents. To the same end, other surviving children temporarily assume parental roles when adults cannot cope. This may happen particularly at significant family occasions such as birthdays and family reunions.

So, remember to include your children, and talk with them when they need it, but remember that they also need space. Allow them to grieve.

It is important for someone who has lost a child to deal with feelings of guilt for not having done something to prevent it. Feelings of having failed or having done something wrong can be deep-set. Perhaps the best way of overcoming these thoughts is to find out as much as you can about the death. If your child died in hospital, ask the doctors to explain as clearly as possible what happened. You might have to rephrase your questions several times; some doctors are good at communicating, others are not. Ask them if there was anything that could realistically have been done to make a difference.

A ‘difference’ does not mean your child’s life would necessarily have been saved by another form of, or quicker, intervention. For example, when my wife died we asked a lot of questions in the weeks and months afterwards. We found out that even if Shirin had been given a liver transplant, which the doctors were in the process of setting up when she died, it’s likely that this would only have prolonged her life rather than saved it. She would also only have been sustained by a variety of drugs, primarily steroids, which would themselves have produced severe adverse reactions.

There were other questions that we asked which the doctors had no answer to. Sometimes there are no answers. Sadly, there are not always obvious reasons for a person’s death. It’s no-one’s fault; no-one’s to blame. Even so, as parents, the future is undermined. A spark of joy is extinguished; never again will you share the beauty of your child’s life.

It is significant that the death of a child is not just the tragedy of stillbirth, cot death, or illnesses or accidents that take the life of a young girl or boy, or adolescent. A child is a child at thirty or forty to the parents of that adult. And when adults die there is often a parent, or parents, left to grieve.

The death of a child is especially brutal because it’s untimely, in that it upsets the concept of a ‘natural’ order of life and death wherein parents die before their children. For this reason alone, perhaps, there is no greater grief than the grief following the death

I of a child. It’s a crushing upset from which many people feel they do not fully recover. This is especially true if the death is accompanied, as it often is, by intense feelings of guilt, regret and failure.

Death of a Fetus or Newborn Baby

While the loss of a child throws up unique issues whatever the child’s age, there do appear to be special problems associated with the death of a child during pregnancy, or soon after birth. If your child died a very early death it’s likely that your feelings of being somehow at fault are intense. This may be because parents are parents, and the duty of parents is to be able to provide for their children. In a sense parents are the ones whose duty it is to ‘fix’ it so that their child will have a safe environment in which to grow up. Sadly, parents simply cannot fix everything. Miscarriage, stillbirth, neonatal death and cot death (otherwise known as Sudden Infant Death Syndrome or SIDS) are often wholly unpredictable. They are therefore unpreventable.

Nevertheless, the shock of saying goodbye to a dear child before having said hello is devastating. This sense of loss and aloneness may be amplified by the staggeringly insensitive and unhelpful comments of others. Choice among these are: ‘Don’t worry. You can have another one’, or ‘I know it’s sad, but it’s not as if you really knew the baby’. The expectation of those who have not suffered such a loss seems to be that the bonds of parenthood are somehow more valid if the child who died was at least a toddler, or boy or girl of primary school age. The reality is different. Attachment to a child usually begins even before it is born – a mother is likely to recognize her foetus as an individual.

The background to the death, when it occurs in the hospital, may be cloudy. Mothers are often sedated. They may not be given the option of holding their dead child, as some hospitals continue the practice of routinely cremating foetuses and the stillborn, even though many foetuses are well formed by twenty-eight weeks. Mothers may feel particularly bereft if they have no token to indicate that their baby existed at all. It is natural and comforting to cherish a lock of hair, a photograph or an inky foot- or handprint on a piece of paper. They may have nothing except the memory of a small white coffin, and a short, sad service just before the burial or cremation of their child.

All of this can cause ,specific patterns of grief in parents whose children die very young. In addition to thoughts of anger, guilt and depression there is often a profound sense of ‘what might have been’. Linked to this are private fantasies of what the child could have achieved. This can add to feelings of being detached socially, and from reality, which in turn fuel fears of going slightly crazy.

It’s not too surprising, therefore, to find that couples find it difficult to talk to each other about the death of their baby. But there is a further problem in that fathers are unlikely to have formed as strong an attachment to the baby as the mother at the earliest stages. As a result, marriages after a stillbirth or SIDS death can suffer severe trauma.

Clearly, recovery after the early death of a child is by no means easy, but there are positive steps you can take which will help to rebuild your life:

• Hold the baby If possible, and the doctors agree, hold your baby. For a few minutes look upon your child as having been born; cradle the baby gently in your arms, and caress him or her. This might seem a strange thing to suggest, but it is important for mothers to form a final attachment with their baby, and for fathers to be given an opportunity to develop an emotional bond with their child. This provides a sensitive and very human closing to life that will serve as a small, yet significant, memory that will sustain you in grief. Take photographs, ask for a lock of hair, or a print of your baby’s hand or foot.
• Help plan the funeral The funeral provides an opportunity to say goodbye to your baby. Normally, hospitals will provide such a service free for foetal deaths and neonatal deaths. They use the services of a contract undertaker for a specific cemetery. Remember that you are not obliged to accept these arrangements if you believe they are unsatisfactory for any reason. It may be that you disapprove of the cemetery itself or the style of service it offers. If the thought of a white coffin is too harsh a container for a child that has not tasted much of life, you could consider using something that has altogether less jarring imagery and connotations. This could simply be a soft shawl or shroud, or other cloth. Ask if you can personally place the body in the grave; you can ensure that it is a ‘natural’ position. Choosing a private ceremony might also mean fewer restrictions on the placing of tokens of love, such as teddies and dollies, by the grave. In making a private arrangement you could think about buying an adult grave so that you can be buried with your child when you die.
• Remember Naturally, you will want to remember your baby. However, the best way to remember your baby is not to succumb to the temptation to make a shrine out of a nursery that you might have prepared in anticipation of your baby’s birth. There will come a time when you will have to reappraise the value of keeping hold of what could have been, and remember your baby in more healthy and positive ways. These may include simply looking at what photographs or other remembrances you may have, and openly (without bitter regret) talking with your partner of what hopes you had for your child. But more than this, you could add to the memory of your child by giving gifts to organizations that help needy children throughout the world. You could choose significant dates such as Christmas or the birthday of your child to do this.

It is not possible to describe every kind of loss or every way in which people grieve. Death comes in all forms, and people react in countless ways. For each individual, the death and loss of a loved one is unique, and grieved for in a wholly distinctive fashion. However, it is possible to focus on similarities in broad categories of grief, and show ways that could help in resolving them.

The following sections provide a framework to patterns of death and grief that can be applied to the commonality of many other people’s experiences.