Fragile Pieces

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.

Be assured that you will never be the same after the death of your loved one. The death of someone close to you is not something that anyone ‘gets over’. In fact, it’s something that most people don’t want to get over. Getting over something implies forgetting about it and the last thing that you’ll want to do is to forget about your wife, husband, father, mother, brother, sister or friend. This in turn does not mean that someone who has recently been bereaved should live by, or in, the past. The aim is to accept that they have gone, draw strength from the past and let go of the pain.

The ideal, perhaps, is to have joyful, invigorating memories of the past with no diminishing of the present. Strength comes from memories of shared experiences. These can be the memories of single, frivolous incidents that made both of you laugh, but perhaps more important are the memories of significant incidents that reinforced the beliefs in the values that you shared in your relationship. Typically, these might include: honesty, integrity, supportiveness, respect, trust and devotion.

These memories will help in two ways. When you feel yourself slipping into pessimism and depression they will remind you of how you loved, and were loved, and will sustain you in what will be exceptionally difficult times.

Anxieties associated with bereavement range from the major to the trivial. When one partner dies, for example, it often happens that the surviving partner feels they are unable to cope with all of the obligations and demands of the future, especially when they do not have the support of their partner to help and guide them. This fear of the future can be so terrifying that the person lies awake at night so tense with worry that they almost feel on the verge of emotional collapse. Their anxieties might include worrying about being able to pay a mortgage, distress at being forced into unwanted work in order to make ends meet, or even fear over how to change fuses in a fuse box if they’ve never done it before.

If you’ve lost a child you could feel anxious that you might not be able to look after surviving children properly, or even those you might intend to have in the future. A young child might have deep and often unrealistic worries concerning death itself, and might feel that either they have somehow contributed to a person’s death or that they or people close to them will die soon. A friend or sibling might worry that others will be judging their emotional reactions after a death as being too distant or insincere.

Quite simply, someone who has been bereaved may feel that they may be losing their mind, or believe that they are just unable to cope with the future. Their great anxiety is that of breaking down and being incapable of functioning from one day to the next. Of course, in the majority of cases, the reality is the opposite. However, the fact that the person is experiencing fears out of proportion to the reality of the situation is the defining characteristic of anxiety.

Initially, the scale of worry that you might feel you have to face will be enormous. It might make you feel indecisive, helpless and useless, which in turn feeds your anxiety. But over the weeks and the months that follow you will haoe to confront these fears and, in confronting them, you will find that they will diminish. Perhaps the greatest aid in combating anxiety is being able to relax. Relaxation is a series of skills that can be learnt and practised at almost any time of the day. When you are able to relax you will be able to tackle you fears head on and, in tackling them, you will find that they disappear. See Chapter 5 on relaxation and meditation techniques for more ideas.

For a long time after the death of someone close to you, you will feel extremely sad. This sadness is more commonly known as depression, which is a clinical neurosis and not just ‘feeling a bit down’. Depression is not a mental disorder but a condition caused by circumstances and the depressed person’s inability to adapt to them. Most people who suffer depression as a reaction to the death of a loved one experience it in a mild form - although, of course, there will be some people who have a more extreme response. The usual signs of depression are fatigue, social withdrawal, disinterest in your surroundings, not caring about how you look or your general health, insomnia and a tendency to brood.

The danger with depression is that in cases where the bereaved lives alone or is otherwise isolated, the cycle of neglect is unbroken, which may lead to increased depression, possible abuse of drugs and/or alcohol, and/or an exhibition of extreme and unbalanced behaviour. The ultimate expression of depression is despair and suicide. Evidence suggests that elderly widows have a higher suicide rate than those who have not been widowed. Similarly, elderly widowers, who may have lost their sole emotional confidante as well as closest companion, seem likely to experience a loneliness that drives them towards suicidal thoughts. Still, the overwhelming majority of people who are recovering from the shock of a bereavement do not attempt suicide. But do not be surprised if you entertain morbid thoughts of taking your own life. Such gruesome fantasies are common.

It is relatively simple to counter the mild depression associated with bereavement. The answer is to keep busy and try to do something that increases your self-esteem, since the death of someone close to you inevitably lowers your feelings of self-worth. However, if the intensity of your depression is such that getting involved in your work, hobbies, pastimes or looking after your health doesn’t seem to help, consult your doctor. More extreme depression requires medical attention from experts, which is normally very effective. The treatment should not be seen as evidence of mental incapacity on your part. A depression that is the result of the death of a loved one is a natural occurrence and will be well understood by any good doctor.

Death is often sudden, but sadly, some people have to endure a great deal of suffering before they die. For some terminally ill patients, doctors may only be able to relieve pain and distress. Others, such as victims of multiple sclerosis or of the AIDS virus, suffer the progressive degeneration of their bodies. Others still, might recognize the onset of senile dementia. They may feel that they are, or will be, a burden to friends and family.

When the terminally ill partner, friend or family member dies you may experience a great sense of relief that can manifest itself in two forms. The first is on an immediate level of thankfulness that he or she is no longer suffering, feels no pain and is at peace. The second level seems more insidious because you may find yourself thinking that your suffering has ended too. You no longer have to devote your life to caring for, feeding, washing or dressing the loved one, who may not even have recognized you towards the end. All the days, months or years of watching their physical or mental deterioration are over. It is no surprise that you feel relief. Associated with the relief you feel at the release of your loved one’s pain, however, will be guilt. This brings pain, but it’s important to realize that only a saint would feel no resentment at having to look after a sick partner or forgive and forget all their imperfections. Every human relationship is bound together with conflicting feelings of love and occasional dislike. And after someone you love dies it’s normal to feel guilt at having had some feelings of dislike for them when they were alive. Recognize this, and forgive yourself for experiencing almost inevitable negative reactions when death occurs.

Very soon after you have partially recovered from the shock of death, you may experience an anger that spills over into an almost uncontrollable rage. The anger may be directed against yourself for example, if you were not with your son when he died and feel you could have prevented what happened by some action or other, or that you should have had enough money to hire the services of a famous specialist who might have been able to save or prolong your partner’s life. Perversely, you may direct your anger against the loved one who has died: Why did he leave me to face the world all alone? \Xlhy did she deprive me of the chance to see her grow up/to fulfil all the plans we’d made together, etc? How could he be so selfish?

The explanation for this ill will is hurt, and the cause of your hurt is, in an indirect fashion, the person who has died. Anger may be the result of a sad misunderstanding in the last few hours or minutes of your loved one’s life. A last kiss or squeeze of the hand may not have been acknowledged by the dying person. And since the bereaved are so sensitive to any clues about how they are valued by their loved one, so close to death, this can feel like a massive rejection. In reality, it may be that they had no energy to respond, or they needed to save their strength to deal with their oncoming death. But such rational understanding is virtually impossible at times like this.

Don’t be surprised if you find yourself dwelling on the more negative aspects of their character, or re-running specific incidents in your head from your life together when, for example, you thought they didn’t behave as they should have, or when they dismissed as trivial something you strongly believed in. Perhaps you nursed them for years at home and feel angry for having had this time ‘taken away’ from you. This seeming disavowal of your love is a common emotional self-defence strategy among the recently bereaved.

There are more obvious targets for anger. If death was tragically caused by a third party in a car crash or murder, for example, then your anger will be directed there. Violent fantasies of revenge against those who caused the death of your loved one can be extreme and all-enveloping.

It may be hospital staff, including the doctors and nurses, who are the prime objects of your anger, especially if you believe that, for whatever reason, they were able to prevent, or were negligent in causing, the death of your loved one. If you believe in a god, then you may direct your anger there. If your loved one died young, you might even look at elderly people in the street and ask yourself: ‘Why didn’t they die instead? They’ve already had their time.’

Much anger of this type is based on prejudice and misperceptions of reality. In the vast majority of cases, the causes of your anger are likely to be spurious and, ultimately, self-defeating. No amount of rage will make any difference to the reality that death has separated you from the person you loved. The only result of prolonged and irrational rage is bitterness, hatred, resentment (on your part and on the part of those who have had to listen to your rage) and probable ill health. The first step is to recognize that you are angry. It is only then that you will be able to release your anger in a constructive fashion.

Nevertheless, there may be times when you feel you just can’t help yourself. It is quite likely that you will feel furious hostility welling up within you when you see people you know in the weeks following the funeral - at the supermarket, in the street, at work and at parties.

These are awkward moments, but it is important to keep in mind that it is possibly as difficult (if not more so) for them as it is for you. You will have had a little time to begin to adjust to your present state while they will have been becoming increasingly anxious about seeing you again. They will have been dreading it for fear of saying the wrong thing and upsetting you. And when they do eventually meet you they may feel that they are unable to cope. Some people cannot cope. 1 particularly remember, for instance, bumping into an acquaintance in the street fairly soon after Shirin’s death. 1 saw the panic in her eyes before she looked away and strode off as fast as she could without saying anything.

These uncomfortable and embarrassing encounters continue as you begin to return to work and start going to social gatherings. Your colleagues at work might avoid you. You might see people at parties visibly stiffen as you walk into a room, as they steel themselves for what they anticipate will be an awkward interchange.

Almost inevitably, people are nervous and try to say something comforting, but mostly it just turns out to be foolish. For example, people commonly ask: ‘Are you all right?’ (I could hardly believe that so many people thought that this was an appropriate thing to ask because even in the fog of the earliest days of my despair it was obvious to me that this was a breathtakingly stupid question. My wife had just died. Of course 1 wasn’t ‘all right’.) Yet there is worse. ‘Have you got over it yet?’, ‘I suppose that it’s just one of those things’, and ‘Never mind’ are examples.

There will be others you talk to who will try to rationalize the senselessness of death. For instance, 1 was told by a colleague that there was a purpose to Shirin’s life and death. It was to make me ‘grow as a person’. And while I’m able to understand an argument that suffering might lead to a greater understanding of self, 1 certainly didn’t appreciate such trite, unsolicited and altogether dubious homespun philosophy. What such people do not realize is that someone in extreme grief doesn’t want to know what they might have gained as a result of a tragedy; the bereaved are only concerned about what they have lost.

Even after a year or more, people presume to intrude on your grief. 1 remember being frustrated by something or other at work well into the second year after my wife’s death, only to be told in the comforting tones reserved for the very smallest of children: ‘Get over it, Hamish. After all, it was a long time ago.’

Feeling hurt by these sorts of ‘well-intentioned’ comments is not unusual. In fact you should expect it. However, if you find that your reaction to hurtful comments is to become antagonistic, you might want to consider reframing your thoughts. Instead of choosing to become incensed, a more constructive approach would be to empathize with the predicament of your workmates and acquaintances. Try and appreciate the apprehension that they are experiencing; they are only trying to do the best that they can. No-one, except an intensely callous person, would intentionally offend someone who has recently been bereaved. Don’t strike out or think bitter thoughts; accept the attempts, however clumsy, of one individual trying to offer comfort and support to another.

Shock is almost inevitable if the death had come suddenly or unexpectedly. Shock can be regarded as a physiological trauma that seems almost to overload the system. The news is too much to take in. There are two possible outward reactions: an unnerving feeling of composure and normality, or near hysteria.

At this stage you have little or no control over the way you behave. I remember being almost unable to move or speak when the doctors came in from the Intensive Care Unit to tell us the news, even though I had known that the end was near. It was only later when I had completed the formalities and was in the hospital car park that I broke down totally, in a near panic of confusion and anxiety.

Because of the enormity of what has happened it is more than likely that at first you will be unable to accept the reality of death. In fact, you may find yourself refusing to accept your situation. However, it is essential, if you are to start recovering from the shock you’ve had, that you take in the truth and admit that you will not be able to change what has happened. This is not easy to do, but if you do not acknowledge that this is the case, and resist it, then it is almost certain that the stresses and anxieties that will inevitably build up within you will lead to a severe strain on your bodily and psychological resources.

Denial is all too easy. We are surrounded by an elaborate codified language of death that is used to cloud reality and to create a distance between ourselves and it. We talk of the ‘chapel of rest’, ‘to rest in peace’, ‘to sleep peacefully’, ‘to be at rest’, ‘eternal rest’ or ‘not dead but sleeping’. However, exhaustion and emotional collapse are certain outcomes of a prolonged period of refusal to accept the inevitable. More common reactions are a desire to withdraw socially, feeling unable to cope with the new responsibilities that you’ve inherited after a loved one’s death, or being incapable of making even simple decisions. You have no choice but to accept and adapt to your new, unwanted circumstances. And the sooner you do so, the better.

Despite these differences between individuals’ experiences, there seem to be a number of stages and emotions in the grieving process that are common, and which mix and merge from day to day, and even moment to moment. The stages are sometimes presented as an impact stage, a recoil stage, and finally a readjustment stage, but other models concentrate on the wide range of emotions of grief to build up a composite picture of grief. These include: shock, denial, anger, guilt, relief, sadness, despair, anxiety, and, eventually, readjustment built on acceptance and strength drawn from the memories of the good times you had with your loved one.

It has been suggested that this ‘logical’ ordering of stages and emotions is superficial. This is probably the case. Reactions to death are not straightforward, and appear to involve a waxing and waning of all of these different states and emotions in a rollercoaster interplay of bewilderment and pain. Nevertheless, they are convenient labels which are useful in describing different states of grief, and for this reason I use them here.