“Our daughter Claire is in hospital with leukaemia. She is nine years old. She has been very difficult, refusing any lessons and throwing things. Sometimes I stay with her in hospital and sometimes my husband does. We are losing the energy to stay cheerful for her. Our 4 year old is getting disturbed when I stay in the hospital and the baby keeps us awake at night with his crying. I’d like to give up my part-time job but we need the money as travelling to the hospital is expensive in itself. Claire is not likely to live.”
Mr and Mrs Z
A bad cold can change the equilibrium of an individual and a family. Not being well, even when there is nothing life-threatening about the illness, takes away from normal resources that are taken for granted. It is inevitable, therefore, that chronic pain, illness and handicap are very depleting of family energy, let alone life-threatening illnesses. There is, in addition, a particular grief when the normal process of parents dying in old age when their children are grown up is changed or reversed.
Thanks to the work of Dr. John Bowlby and the Robertsons, it is now acknowledged that children in hospital need to have a parent or parents with them and that separation at a young age is emotionally damaging. However, when the nature of an illness means a child has to be hospitalised in a specialist hospital that is a long distance from the home, and there are also other siblings who need attending to who feel the loss of separation too, there is a difficult balancing of needs to work out.
Mr and Mrs Z do not say if they have parents, relatives or friends who can help share the hospital visiting or provide time for the other children. If they do not have such help now perhaps they can make links with the parents of other children in the hospital. Other parents might also provide help in assessing whether the strain of work is worse than the economic strain of visits. One mother in that situation said she now understood what prisoners’ families felt like. “If you have not got the money to keep the visiting up you let down the relationship and if you keep the visiting up you run out of money and that strains the rest of the family”. There is an important case for extra financial grants to be given at such times.
Dr. Dora Black has pointed out the way financial and practical issues burden the already stressed family. She comments that children with leukaemia have a high incidence of behaviour problems, their siblings are often disturbed and the relationship of the parents suffers. Her department provides individual and family therapy to help with these stresses as well as bereavement work when the child dies.
One strain on Mr and Mrs Z is their wish to be stay cheerful for Claire. In the face of death, pain or handicap, workers and parents can mistakenly think that being cheerful is a helpful act. Surrounded by false bright smiles the patient is actually being told that his pain is not bearable. Such denial of real feelings can create a death-in-life for the family. Sometimes, someone else’s words - books specially written for children- can be of help.
When a child has to face painful medical procedures in order to survive s/he often needs to keep the doctors “good” and it is the hospital teachers, therapists or parents who receive the anger. Claire’s anger with lessons is no surprise. Hospital teachers often have to deal with the terminally ill child’s feeling that all knowledge is useless if the child is not going to grow up and become an adult. Like everyone else, they have to weigh up at what point survival issues come first and when death has to be accepted. 12 year old Tony, in hospital for a bone marrow transplant, furiously attacked all lessons until his teacher brought him a book on poisonous plants. His sense of being damaged and contaminating found some relief in that. Dorothy Judd (“Give Sorrow Words, Working with a Dying Child”) shows how therapy for the dying child can also bring relief by containing rage and distress.
What about the 4 year old? Siblings are competing for their parents’ love and attention. When a sibling is ill or learning disabled there has been an unfair victory and children can then feel a guilty triumph as well as concern for the physical wellbeing of the sick one. Sometimes the well child can feel so guilty about his own good health that emotional disturbance follows.
Everyone in the family feels the impact of illness and the baby, the most vulnerable to tensions in its surroundings, adds his cries in the night. Sleeplessness is an exhausting condition and Mr and Mrs Z are losing the relief they could be gaining. The transition from day to night and sleeping can itself be experienced as a death. The closeness of a real death needs to be worked through so the whole family can be helped through this period and after. Dr. Dora Black ‘s research has shown that family work can help with the grief and mourning in families after a death partly by aiding adaptation beforehand.