Life in the shadow of death

17th May 1996 at 01:00
For the small group of children whose siblings are suffering from a terminal illness, there is no such thing as a normal day. Bob Drought reports on ways that teachers can help these children survive the unendurable.

Brian's GCSE results were disappointing. With grades way below what had been predicted, his hopes of going to university now look bleak.

At her comprehensive school Gemma is unpopular, ostracised in the playground and isolated in class where her peers are reluctant to work with her.

Angela, aged 10, is withdrawn, pensive, and often sleepy. Ben, another 10-year-old, has a very different disposition highly extrovert, enjoying his clown image until his classmates tire of him when he resorts to aggression and even destruction.

Youngsters like these exist in many schools. Brian, Gemma, Angela and Ben are real children sharing the same sad experience; all four have a brother or sister with a terminal illness and will encounter the death of a sibling within the next two years.

It is an experience they will come through, but not unscathed. Already they are grieving, a process which begins for all the family with the trauma of diagnosis. Medical advances will prolong that grieving as it takes longer to die these days. The families would have it no other way but it makes for a very different childhood for those who are healthy.

Each of these families makes desperate efforts to live a normal life but their homes bear the tell-tale signs of sadness electric beds and wheelchairs, recharging machines, suction equipment, feeding pumps, syringes, incontinence pads and all the paraphernalia that goes with caring for a dying child.

The necessary routine, exhaustion and sheer sadness inevitably impinges on healthy children. Living with death is far from normal and for many such children, though by no means all, it affects their life at school as well as at home.

For Brian it is the perpetual night time interruptions from his brother "buzzing" his parents to turn him. It is the guilt he feels that the fatal hand of Duchenne muscular dystrophy didn't touch him and the resentment that family holidays and outings are dictated by wheelchair access, or the jibes of insensitive pupils about his "spastic" brother. He is beginning to feel less central to the family, as if he is living on the fringes of it.

Gemma has thrown herself into looking after her sister who suffers from infantile Battens disease. Sharing the care virtually as a third parent has been at the expense of going out or having friends round. Classmates see her as different, perhaps a bit of a "fuddy duddy".

Ben, whose baby brother will die from Leukodystrophy, a neurological disease, feels an inconsequential member of his family. He is too young to care as Gemma does. He seeks attention elsewhere.

When Angela got up last Thursday morning her dad made breakfast; the emergency during the night with Sam had meant her mum had gone to hospital with him again. Gemma has a vague memory of the noises in the night the clonk of oxygen cylinders and the whispered conversation with the ambulance men on the landing. As on other occasions she knew this latest crisis could be the last. After breakfast she went to school.

While all four children, unlike their siblings, will survive their resilience never ceases to amaze the quality of their existence will in some measure depend on the support they receive from school. For it is in the classroom where many expressions of their pain and sadness can be observed.

So what signs and symptoms should teachers be aware of and how might schools help, bearing in mind that every child is different and some may appear to be coping without any ill effects?

The nature of the dying child's illness will affect their brothers or sisters responses; physical and mental symptoms and the speed of deterioration are important factors along with the age of all the children at diagnosis. The sibling's position in the family as well as the level of family and agency support are also important variables.

Many terminal illnesses are characterised not by a steady deterioration but by sudden decline, sometimes plateauing and even short-lived improvements. There are also milestones in that deterioration sensory loss, mobility loss or the need for special help with feeding.

Behavioural responses from the healthy sibling are likely to be patchy and variable but there are signs for the teacher to watch for. These include academic inconsistency, especially in homework; anxiety, depression and tension, often with physical signs sweating, frequent requests for the toilet or an inexplicable illness, sometimes with fantasy symptoms but also, worryingly, symptoms which mimic those of the dying child.

Poor attention, day-dreaming and tiredness are often caused by genuine difficulties in sleeping and disturbed nights. Behavioural problems may be expressed in attention seeking, the "what about me?" syndrome. This may be compensatory a search for approval from staff or peers but also a feature of anger, hurt, or even guilt. At the other end of the spectrum is the child whose behaviour is quiet and withdrawn.

Such features require observation not only in the classroom but within the peer group at break times or between lessons. It is often within the peer group that the well sibling can feel most vulnerable, different and alone, taunted and teased by the cruel, or pressurised into giving information by the inquisitive. For some, integrating into extra curricular activities is difficult because of home pressures, especially where such children are sharing the care.

Before offering advice to schools on how to support these children, three points need to be made. First, terminal illness strikes throughout the social spectrum. Healthy siblings run the risk of deviance and disturbance within the whole child population. Second, many children not only live through this experience well, but ultimately gain much from it; many achieve a sensitivity and capacity to care for others which they would otherwise not have developed. Third, the enormous demands and logistical problems in caring for a terminally ill child can totally preoccupy parents so they may seem difficult to approach. If they are not to become strangers to the school, communication needs to be handled sensitively.

The school and its teachers will want to show they care. Preferably, a skilled and designated person within school needs to get to know the family to establish how it can support and respond. In the information-gathering process it is vital to learn what exactly the well child knows as well as how he integrates into the family unit; find out about their involvement in day to day care, about sleep, homework, activities and holidays, peer group relationships, and what other family and agency support exists. By all means share (professionally) this information with colleagues but ensure the child has time to talk with someone, preferably of their choosing.

The chronic sadness of having a terminally ill sibling is, for this small group of children, a cruel fact of life. For some that sadness and cruelty can continue at school; for others school might be a place of refuge and respite, but all such children can benefit from the special sensitivity and understanding of their teachers.

Bob Drought has over 2O years' experience of teaching in special education. Three years ago he moved to Martin House, a children's hospice in Yorkshire which provides terminal and respite care to dying children and their families. The identities of the children discussed in this article have been changed but they, together with their families, regularly attend Martin House.

An information pack together with ideas for schools to raise money for this hospice is available by writing to Martin House, Grove Road, Boston Spa, West Yorkshire LS23 6TX

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