Family grief

June was 14 when she died. I was five years younger but we’d never been very close as sisters. She was definitely my mother’s favourite. When she got leukaemia that was it: everything revolved around her. It was ‘June this... ‘and June that...’. Mum devoted her life to her. I was sorry for Dad – he had to do everything.

We had to cancel a holiday because ‘June has a hospital appointment’. There was a collection for us all to go to Disneyland but in the end there was only enough to pay for Mum and her. It’s a terrible thing when you come to hate your sister. Imagine how I felt when she died. But it’s Mum I blame. Things have never been the same since – that’s 40 years. It’s as though she takes a pleasure in rubbing it in –‘Just think, our June would have been 54 next week’.

So far we’ve been considering the way that a death can affect individuals – we’re suddenly forced to adjust to who we’re going to be in a world without the dead person. In many ways this is a straightforward task compared to the work that a family may have do when they lose a key member – and in families everyone is a vital component.

A personal relationship is two-dimensional and there is some clarity about roles and functions. It may be painful but we can usually, at least, understand what we have lost and, eventually, what we need to do to resolve our grief.

A family, however, is a more complicated matter.

Families grow silently over the years, each member establishing a role for themselves – or having one assigned; sometimes it’s not clear, but in any case, we all know our place:

A solves the problems	B is the clever one
C has the bright ideas	D needs all the sympathy
E makes the decisions	F is the one who gets the blame
G is in charge	H cleans out the goldfish.

Usually, if all goes well a family will be open and positive, aiming at good relationships and personal growth. More likely – and this happens in most families – roles and expectations will not be so clear. There may be unspoken misunderstandings, rivalries and secrets which may (or may not) be very serious and which pass unnoticed because we conspire to keep things on an even keel.

When someone dies this long-preserved equilibrium is destroyed. Each family member will have their own special grief, which may not be understood by the others. They will all be thrown together, their attitudes and behaviour may be confused and skewed. This becomes fertile ground for tension, recrimination, accusations, demands and hurtful remarks.

In a study by Ira O. Click in 1974, 28 per cent of widows reported having angry feelings towards family members –officiousness, meddling, not doing enough. The main target was their own ‘interfering’ mothers – maybe because their present vulnerability evoked past dependency. Sisters came out best (for men and women): brothers and brothers-in-law weren’t much help at all. In the same study 42 per cent of these same widows expressed dissatisfaction with women in their partner’s family.

There’ll be a lot of – usually unexpressed – thinking going on:

• Who organises and pays for the funeral?
• What’s in the will?
• Who’s to ‘blame’ for the death?
• Who’s grieving most/too much/not enough?
• Who’s being inconsiderate and insensitive?
• Why won’t they stop telling me what to do?
• Now that my partner’s dead what is my relationship with her family?
• With mother gone who will be on my side in the future?
• Who’ll keep father from drinking too much now that my brother’s been killed?
• She wouldn’t be so upset if it was me that had died.
• Would I be so upset if it was her that had died?

We must guard against family collusion in creating substitute roles for bereaved young people; it is easy for a boy to become ‘the man of the house’ or for his sister to become ‘a little mother’. This is dangerous because it denies their own needs for development. One widow, Jackie, talked on Radio 4 (Home Truths, May 1999) about how her 7-year-old son would ask her if she had remembered her keys when she went out; on another occasion when she was talking about hiring a car he asked, ‘What about the insurance?’ She regretted that he had taken on the burden of such concerns.

However, in spite of all these problems there is a brighter side. It is common for a death to bring family members into a new closeness and the time around the funeral may gather together far-flung relatives who rarely meet. Grieving people also commonly turn towards their family for support; one study reported that 40 per cent of bereaved spouses named a family member as the person who had been most helpful to them.

A child loses a brother or sister

Unless a brother or sister has given substantial care to a very young child, he will not be seriously bereaved if they die. Under the age of about three months a baby has little memory of any family members when they are out of sight, so long as there is one major caretaker.

As the child gets older he will know what death is – but maybe only in the same way that he responds to the death of a pet. The importance of relationships within our families usually only becomes really evident as we get older – although there are often close sibling relationships at this age, which may need to be mourned. Nonetheless, a young child’s apparent detachment or callous indifference may be unnerving to the rest of the family:

After the funeral can I have his bedroom?

Young children usually think the world revolves around them and gradually come to realise how powerful they can be; it’s possible they may feel that somehow they are responsible for wishing a brother dead – there can be confusion between feelings, acts, guilt and responsibility. Because young children don’t have the vocabulary to express subtle feelings their grief may show itself in unusual behaviour.

All parents will make big mistakes coping with the grief of their other children after the death of a child. We will have temporarily lost our normal sensitivity to their needs. We’ll know that it’s an important loss for them and we will stumble to try to do our best to prevent them being hurt.

The child may collude with us to avoid dealing with things by being quiet and withdrawn; we might fool ourselves that they’re not taking it too badly. However, they may be suffering much more than we are – they haven’t the experience to see the context and know what the future might be. So we need to do something. The danger is that we’ll try to think up complicated things to do and say in our well-intentioned effort to do ‘the right thing’.

The best thing to do is to respond openly and authentically – giving as much attention and physical contact as we are able. There is no need to justify, soothe or protect their feelings. The key is honesty – about what has happened, how everyone is feeling and the future security of family life.

It’s usually not helpful to be negative, but we may need to steel ourselves to resist going down unhelpful cul-de-sacs. So, here are some ‘don’ts’.

• Don’t try to minimise his reactions or protect him from his feelings. Allow him to be part of the family sadness.
• On the other hand, don’t put pressure on the child to express his feelings; he may do it more through his behaviour than with words. He may be able to handle his grief only in short snatches. Let him be in charge of the pace of his own grief.
• Don’t expect his response to be the same as ours.
• We won’t be able to hide our own feelings – we shouldn’t even try. Our own tears give the child permission to show real feelings too.
• If there are no tears we shouldn’t assume he’s not grieving.
• Don’t try to simplify things – ‘She’s gone to Heaven and will be happier now’ ‘You’ll feel better in a few weeks’. It’s OK to say that we ‘don’t know’.
• Don’t make demands on him to give you comfort.
• Don’t use woolly language: ‘Mary died’ not ‘Mary passed away’.
• Don’t single him out for special treatment. He may need the comfort of the structure and limits of his day-to-day life.

Although young children should be given the opportunity to talk about their feelings we should be careful about pushing them into confronting their loss. It’s easy to be over-enthusiastic about ‘helping them to face up to the situation’.

Dr Richard Harrington of the Department of Child and Adolescent Psychiatry of the Royal Manchester Children’s Hospital challenged (in May 1999) the idea that bereavement counselling should be offered to children:

This assumption is unwise. There are plenty of examples in child mental health of interventions that were thought at first to be beneficial but proved in randomised trials to be harmful.

We cannot be confident that the theory behind some childhood bereavement programmes is sound. It may not be necessary to encourage children through the painful process of crying and expressing sadness. Such procedures could be harmful.

Failure to mourn (in children) does not seem to be linked to later psychological disorders.

Dr Harrington claims that most bereaved children do not develop serious psychiatric problems later in life. It needs a certain maturity and developed thinking capacity to become depressed and children normally have a natural protective resilience to see them through the crisis – much more so than adolescents and adults. To insist on invading this self-defence can do more harm than good.

As time goes by parents need to be aware – where a sibling has died – that remaining children are protected from feelings spilling over from the dead child. We may become overprotective and frightened of normal risks for fear of losing another child; we may put the dead child ‘on a pedestal’ and measure the others against their ‘perfection’. They may feel that they have to replace or ‘make up for’ their dead brother.

Regrets about simmering sibling rivalries from early childhood may cause a child to feel guilty about the death of a brother or sister.

The natural egotism of adolescence will assume that no one feels grief quite so sharply as they do. (In fact bereavement may well be their most intense emotional experience to date.) Their aspiration towards ‘responsible’ adulthood, however, may prevent a young person from showing ‘childish’ emotions. In this way they may appear ‘strong’ and become a ‘crutch’ for someone else’s grief.

The important thing is for us to include our children in our own bereavements; to show by the way that we express ourselves that talking about our loss is a mature, healthy thing to do. On the other hand it may be that they will prefer to seek emotional support from their friends rather than their family.

When our own child dies...

By the calamity of April last, I lost my little all in the world; and have no soul left who can make any corner of this world into a home for me any more. Bright, heroic, tender, true and noble was that lost treasure of my heart, who faithfully accompanied me in all the rocky ways and climbing, and I am forever poor without her.

Thomas Carlyle (1795–1881), Letters

Just as we expect our parents to die before us so we, like our parents, invest our hopes and support in our children. It was our parents’ job to pass on their genes to us and our basic biological purpose is to create new gene combinations for future generations: there is no other biological purpose in life. Tf we have a child who dies we could honestly say – without the emotional exaggeration that usually accompanies it – ‘There is no reason for me to go on living.’

However, there are more aspects to our life than simple genetic regeneration and we can eventually find many good reasons to go on. However, this initial real sense of meaninglessness is what sets the death of a child apart from all others. Compared to the loss of a son or daughter our grief at other deaths seems an indulgence; here we are up against the ultimate loss.

Other people, apart from our parents, usually came into our affections by accident – we chose to become attached and, although their deaths may be devastating, we can in time adjust to life without them. Children, however, are special – we generated them from our flesh and we usually have an invariable commitment to supporting their growth and development as long as we live. This is a commitment which, once started, cannot be stopped. When our child dies we cannot, as with other deaths, eventually accept the world without them – for us they will always exist.

We cannot accept that their hopes and potential can be stopped. We shall carry their dead memory for the rest of our lives.

When an older person dies there is normal personal grieving but, after the initial shock of the loss of a child, our first response is to challenge the circumstances – such is the ‘unnatural’, incredible impact of the event.

With other deaths we tend to turn our grief in on ourselves and it burns inside. Child death is different. Parents’ grief is often passionately energised and turned outwards to the world in which their child has been lost. They will be driven to find out the precise cause of the death with the thought in the back of their minds that ‘It won’t happen again to someone else’. It may be the occasion for beginning a campaign for a change in legislation ‘so that, at least, something good can come out of this...’

It is as though there is a need to ‘achieve’ something on behalf of the child – almost to make up for the child’s lost achievements. Parents seem to absorb some of their child’s unlived life such is the commitment and energy they will reveal. With their child gone ‘nothing matters any more’ they may lose their normal reticence and become provocative and ‘dangerous’.

In the short term, this ‘busyness’ can be helpful as an anaesthetic for the intolerable pain inside and it can mask some of the quieter feelings of bereavement, but these will surely come — the depression, the guilt, the ‘if onlys’. We may begin to measure up our partner – looking for blame. It is estimated that between 70 per cent and 90 per cent of marriages where a child has died become seriously endangered or end in separation or divorce.

When an adult dies we grieve for their past life. Parents of a young child will grieve for what they have lost but they will also grieve for what the future promised. At least with an adult their past life was real – it is much harder to contemplate aspirations, unfulfilled hopes and an imagined future. In a sense the child will continue to live and grow in the parents’ imagination; its presence may be so real as to cause confusion:

The thing I most fear is when some stranger innocently asks you how many children we have. Should I be honest and say ‘two’? Susan is still so alive for me it always seems like a betrayal. I’ll always have three children.’

When we grieve for an adult we can conceive of eventual normality – ‘it’s been sad, but that’s life’. After the loss of a child, however, part of us will have been permanently harmed. We’ll learn to live with the wound, but it will never heal.

Baby death

Even a very young child will have had a characteristic personality – a presence and individuality that was evident to family and friends and whose loss can therefore be shared.

The miscarried, recently born or stillborn child, however, will have a socially ‘unknown’ identity and will not have ‘existed’ so tangibly for others as for the parents – especially the mother. The parents themselves will have nothing to ‘remember’ about its unlived life.

Stillbirth

Until recently it was assumed that a parent’s bonding with their baby began only after it was born. It has now been found that this is not so. Bonding is a process that emerges much earlier, as the mother becomes aware of her pregnancy; it strengthens as the baby makes its physical presence known by her increased size and its movements within her. Ultrasound scanning puts a physical shape to the bond; by the time the baby is born mothers are commonly able to have ideas about the baby’s temperament. They – and fathers to a lesser extent –already have a strong sense of attachment to their child before they have even seen it.

Research has shown that, often, parents of lost newborn babies grieve less successfully than those of older children.

Often the mother is young – without the maturity to come to terms with loss; this may be her first experience of death and her need to grieve may not be fully acknowledged. The father may be totally ignored and be less willing to talk about his feelings.

Childbirth is to do with health, growth and hope so a baby’s death is always shocking, particularly if the mother’s antenatal care had suggested no problem.

Because of the medical risks surrounding pregnancy and birth, parents are more ready to search for reasons for the death. They will wonder about the treatment they have had and will inevitably question their own responsibility and medical fitness for bearing children in the future.

Although the baby has no ‘history’ to grieve for, the parents will have constructed a fantasy reality for the child which will be made up of expectations, hopes and aspirations. They will also have thought themselves into the role of mother and father. They will have made plans, accepted new responsibilities and prepared a new lifestyle. The last months will have been a countdown to a new future. There is already so much to be lost – and bereaved.

A unique feature of baby bereavement is that its sharpness is usually limited to the parents. Friends and other family members will have their own special sense of loss, but only the mother and father will have made such a massive emotional investment. In other bereavements there will be understanding and support from people who also knew the dead person but few others will realise how great an impact the loss will have had on the dead baby’s parents.

To some extent the mother’s partner may also fail to understand the depth of her biological and emotional needs. She had such an intimate physical relationship with the baby and her hormone balance is poorly suited to coping with the stress of the loss. This may leave the mother unsupported and isolated.

If it is known that the baby has died in the womb, it is common for the mother to deny it or, more usually, to develop revulsion for her body – ‘a living coffin’. There usually remains an irrational vestige of hope that the baby could be alive (even amongst hospital staff). This might mean that the grieving process is put ‘on hold’ until the dead baby is born.

The hospital will offer to arrange and provide a simple funeral free of charge. Many parents are distressed and agree to this without considering that taking their own responsibility for arranging the funeral will give some reality to their loss.

It helps also to give the baby a name. This may not seem important at the time but in the years to come the name will help focus memories.

If a baby is stillborn (born dead after the 24th week of pregnancy) the death will need to be registered in the normal way – you can ask to have a first name entered for a stillborn baby.

Miscarriage

A study in 1990 (Bansen and Stevens) estimated that clinically recognised miscarriages occur in an amazing 31 per cent of pregnancies. Because of this frequency, the non-visibility of the foetus and the assumption that there is no parent/child relationship the effects are underestimated.

Miscarriages happen usually in the early weeks and months of pregnancy – often before the pregnancy has been announced. The first sign will usually be heavy bleeding which may carry away the small foetus. The mother may not even have seen it and few people may know about it – miscarriage is, therefore, often the most private and unacknowledged of losses.

The mother will have been admitted to hospital for the ‘products of conception’ – as the foetus is cruelly called – to be removed and will be quickly discharged. Everything happens so quickly – yesterday there was a baby, today there isn’t.

There is more awareness nowadays of the emotional needs of miscarrying mothers but they remain the most neglected and misunderstood of bereaved people.

Common sense (that most unreliable of friends) tells us that a miscarriage a few months into pregnancy is not such a great loss: the pregnancy is not visible, the mother can’t feel the baby’s presence – our friends will even tell us that ‘perhaps it’s for the best: it’s nature’s way’. However, a surprising study published in 1980 by Peppers and Knapp, in Psychiatry showed that there was little difference in the bereavement needs of mothers who had miscarried and those who had stillborn babies or those whose babies died at birth. These mothers needed many months’ grieving to recover from the loss.

In her book Loss and Bereavement in Childbearing (Blackwell 1994) Rosemary Mander describes a study by Bansen and Stevens in 1992:

These researchers found profound guilt, anger at their bodies and fear for future childbearing... The mothers’ grief was long lasting; resolution of their grief may have been impeded by the sudden onset of their miscarriage, precluding any opportunities for anticipatory grieving. Social support was unforthcoming, which was compounded by unhelpful comments denigrating the loss.

There are two organisations who can help: the Miscarriage Association and the Stillbirth and Neonatal Death Society (see page 189).

Terminations of pregnancy

There are two sorts of terminations of pregnancy. Mostly (80 per cent) these are to do with social circumstances or the mother’s health. Although it is sought by her, she will not have been able to have prevented natural hormonal preparation for the birth which will have set in an unconscious psychological anticipation whether she likes it or not. There will need therefore to be some adjustment to the loss in even the most ‘straightforward’ circumstances. Most women underestimate their need to grieve following a termination.

More complex still are those terminations following diagnosis of a foetal abnormality.

Because it is an unviable foetus that is aborted, unseen, and because it is with the consent of the mother there is little public acknowledgement of her grief (even less for the father’s).

Far from the relief that friends might expect, the parents’ emotions will be complex.

• Because the foetus is not seen, the ‘reality’ of the loss is not established. The loss does not have the ‘official’ recognition of death registration or funeral.
• This was a ‘wanted’ pregnancy, however abnormal; there is likely to be a strong sense of loss as well as guilt feelings. Would a ‘good’ mother not want to keep her baby whatever disability it might have?
• Because these terminations often take place later – when the pregnancy may be visible – other people may know of the decision and may be critical.
• Will she ever produce a ‘normal’ baby? Will she ever be pregnant again? – especially if she is an older woman.

In a 1989 study of 36 women who had had terminations because of foetal abnormality, three-quarters reported a severe grief reaction and a fifth needed psychiatric treatment –particularly if the operation was very late in the pregnancy or if the abnormality had been non life-threatening. The voluntary nature of the decision – far from making things easier – made them worse. (Only 5 per cent of women who had terminations for ‘social’ reasons reported severe grief reactions.)

Sudden Infant Death Syndrome: cot death

Although we tend to think that cot death is a modern phenomenon, the number of these apparently inexplicable baby deaths – usually up to six months of age – has remained steady over the years. The apparent increase simply reflects the dramatic decrease of all other infant deaths during the last half of the twentieth century.

A cot death sets the scene for a combination of particularly cruel circumstances.

• It happens at the height of the ‘bonding’ honeymoon period when the child is particularly appealing and when the parents are feeling proud and successful.
• It usually happens after the baby returns home from hospital. The parents are often inexperienced in baby care and their first instinct is to blame themselves or feel guilty about some imagined neglect.
• The usual lack of obvious explanation for the death may involve an investigation by the coroner, an inquest and questions from the police.
• There will be doubts in the minds of others about the full explanation for the death.
• Parents may be reticent about sharing their complex feelings with other people and there may be recriminations within their relationship, which may have serious long-term effects.
• Parents can be so harmed that they may withdraw from older children for fear of losing them.

If we find ourselves in such heartbreaking circumstances, we should find the strength to seek reassurance about the medical causes and the extent of our own responsibility.

Contacting groups of other parents who have been through a cot death is particularly useful. These will be able to offer individual counselling, information and local group support. You may find it helpful to join one of the local groups in raising funds for further medical research. Contact The Foundation for the Study of Infant Deaths or SANDS, The Stillbirth and Neonatal Death Society (see page 189).

The needs of baby-bereft parents

The first requirement is for the parents to experience the reality of what has happened. It’s helpful for the mother of a stillborn child to be encouraged to be fully conscious during labour, to experience labour contractions and to take part in the washing, dressing and laying-out of the baby.

There should be prompt, honest information from doctors and nurses. Often mothers have fantasies about their blame for the death – ‘If only I’d rested more/smoked less/eaten better/ drunk less alcohol.’ Medical information can give reassurance. The prospects for future pregnancies should also be spelled out: there will be an immediate anxiety that ‘If it happened once, it’ll happen again.’

It is now firmly established that it is most important for the baby to be seen and held. In a study of 22 mothers, 12 had seen their babies – all were pleased they had; 10 chose not to see their babies – all regretted it. Parents may be discouraged from having contact if the child is disfigured but not to see the child is to substitute fantasy images perhaps even more disturbing – forever more.

Taking photographs will give a focus and establish memories for the years to come.

Above all the grieving parents need to talk about their feelings. However, they will have trouble finding the words because it will be hard to disentangle all the facts, dreams, guilt, aspirations, regrets, fears and miseries. It may be even harder to find someone who will understand this profound need so it’s important to take seriously anyone who offers an ear.

Infertility

A brief word is needed about grief and infertility. How can we grieve for a person who has never existed?

Many people who are unable to have a baby may have spent years with their partner imagining how life would be different if they had a child; the prospect of parenthood is a very real, ever-present reality. The gradual fear that this may be impossible may cause a profound bereavement for the loss of their expectations.

Not only will there be grief for the loss of hope for the child they will never have – there may also be grief for their lost sense of themselves becoming a family. This is often a testing time for their relationship and the strain may cause it to break down.

If we find ourselves in this situation we won’t find the same support that other bereaved people can expect. It may even be that people – not knowing the truth – will think we don’t like children or that we are selfish.