“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.