To care for a child with a brain tumour, parents need to look after themselves – some tips from the Brainchild Foundation.
A brain tumour diagnosis is life-changing, for children and adults alike. For children, the experience is complicated by the fact that they may not understand what is happening.
Depending upon a child’s age, they may have no concept of their own mortality. Very young children may perceive their illness to be no more serious than the common cold, whereas a teenager may be shocked and devastated by the news.
Whatever the age of the child, the parents usually carry the bulk of the emotional burden. Those caring for a diagnosed child often supress their true emotions. Brain and spinal cord tumour diagnosis and treatment is a frightening topic. Parents may be selective about what is explained to their child and how. They put on a cheerful disposition in the child’s presence and carefully downplay the enormity of the situation. As a result, parents can experience depression or anxiety in varying degrees long after their child has finished his or her treatment.
Parents need to talk about their feelings and concerns. Taking time out to debrief with a partner or friend can be therapeutic. The old saying, ‘A problem shared is a problem halved’, may not literally be true, but it can certainly help us to gather our thoughts, regroup and regain some logical order in our thinking.
Sometimes concerns need the attention of a professional. Health care teams are not only concerned with a diagnosed child’s physical treatment, but also the psychosocial wellbeing of the child and their family.
Discuss all of your concerns with your child’s doctor, clinical nurse and social worker. Don’t withhold questions for fear they may seem trivial. Expressing your concerns allows the health care team to provide the greatest amount of assistance and support that is necessary.
It may seem impossible at times, but parents caring for diagnosed children need to participate in normal routines. Any parent will agree that from the moment they heard the news of their child’s diagnosis, what was normal suddenly ceased to exist. But consciously retaining your usual routine can help alleviate the distress this change can cause.
The routine does not need to be remarkable. Walking the dog, mowing the lawn or meeting a friend for coffee are simple measures that can help you regain a feeling of control over your life. We have all heard people say, “Oh, I don’t think I could cope if my child were diagnosed with a brain tumour.” We do manage to find the strength and courage to cope with the situation. But we can’t do it alone, and we shouldn’t try.
After a child’s diagnosis, the allocation of roles and responsibilities among family members varies greatly from family to family. Larger families living in close proximity to the treating hospital are better resourced to physically cope with the situation compared to a small or single parent family who lives remotely to the treating hospital. Whatever your situation, don’t be afraid to ask for help!
There are several organisations that offer support, and the type of support varies among them. Just some of the services available include: financial assistance, counselling, tutoring for diagnosed children, camps and outings, holiday accommodation and provision of information.
Unfortunately, some families are reluctant to seek support from these organisations.
For many, they feel too proud to ask. The reality is that many charitable organisations were started by people who have walked the same road, people who have felt the same pain and were driven to making the journey a little easier for those who follow. When families reach out and ask for support, charitable organisations are strengthened and inspired to continue the work they do.
At the end of the day, how can a carer care for another if they are needing care themselves? Carers need to think about their own physical, social and emotional needs and wellbeing. During uncertain and overwhelming times, they need to put positive strategies in place in order to help themselves, which will subsequently benefit the children in their care. In this tech-savvy world we live in today, advice and assistance is only a click or call away.
“One small query from a concerned parent may make a world of difference in the life of the child they love.”