There are ways and means of coping with the emotional distress of caring for a terminally ill child. While there is no set formula, the following tips can help a person find joy and create precious memories amidst the heartache and pain.
Exchange Stories with Other Parents
When a terminal diagnosis is made, the hopes and dreams a parent had for the child, crumble. Instead of a bright future, they now face extended periods of medical tests, hospitalization and possibly financial stress. Support is essential and the best place to find it is from parents and families who have experienced similar situations. Chat to parents in hospital wards and search the internet for support groups.
Live for the Moment
Many parents fall into the trap of existing rather than living. Even in the midst of pain and suffering, there is room for joy. Create moments that are memorable and positive such as picking a perfect rose and taking it to the child’s room. Special moments are often centered around ordinary event such as a favorite meal, a picnic on the beach or a visit to grandparents.
Be Open to the Child’s Questions
Physical pain tends to advance emotional maturity in children and they become adept at reading adults. A glance, an expression, a silent signal, all communicate something, even if the parent is verbally reassuring. Don’t be afraid to discuss your child’s condition with them in an appropriate manner and don’t lie. If a child feels information is being withheld; it can cause stress and anxiety.
How to Handle Teenagers
If a child is young, it is relatively easy for a parent to make decisions about his care and activities. Teenagers are a different story and many want to make the most of the time they have left. This may involve activities that potentially could shorten their lives. While this can be incredibly difficult for a parent to handle, the best way is often to accommodate the teen’s wishes as far as possible and allow him some control, while staying involved.
Making Medical Decisions
This area can be a minefield of confusion and fear. Parents are faced with decisions over how far to go when permitting invasive, painful procedures and treatments, knowing that they may extend their child’s life by a couple of months. There is no quick answer but the options should be thoroughly explored by parents and medical staff. If the child is mature enough, he should also have a chance to express his feelings.
Children Often Try to Protect their Parents
Children have an amazing resilience and may willingly submit to painful procedures in the hopes of sparing their parents, emotional pain. Try and understand what the child is facing and reassure him that he doesn’t have to worry about his parents.
Finding the Balance
There is a tendency for parents to pour all their energies and time into the sick child. Spouses and other children are neglected as a result and if the trend is not corrected, the family unit may fall apart. The key to breaking the cycle is investing time in self and other members of the family. The sick child knows that his parents cannot spend every moment with him and is normally content if assured of their passionate love and concern for him.
Again, there is no set way to do this. If the disease is one that lingers for years, make the most of the time. Don’t leave words of affirmation and love unsaid and fill the days with as much joy and life as possible.
Life is not fair and many questions will never be answered on this earth. The reason for the death of a child is one of those questions. Accepting help and support and making the child’s life as happy and joyful as possible, are ways to help deal with the grief and loss that inevitably follow death.