«Parents can learn to think about themselves»
Mrs Kiechl, what happens to a family whose child becomes seriously ill and in need of care?
For many parents, such a diagnosis causes great anxiety. Their entire life plan is thrown overboard. They feel bound for the rest of their lives because the child may never become independent. Those affected are suddenly confronted with countless issues: hospitalisation, medical checks, fear of the results, unpleasant examinations and treatments for the child.
The separation rate is twice as high as for other couples.
You have to learn to look after the child. Around the clock. This can include operating a feeding tube at night. A sick child demands an incredible amount of space and time; it is an art to do justice to this.
Do many affected parents separate because of this stress?
The separation rate is twice as high as for other couples. These mothers and fathers come into contact with issues that go beyond what parents usually have to decide. Ethical questions, for example. If one wants to let the terminally ill child go and the other fights to the last, the tensions can hardly be bridged.
Different hours at home can also trigger envy towards the partner who seems to have more freedom. That's why couples need to understand each other's superhuman commitment and exhaustion. It's a marathon run, every day. It is difficult to still feel love for each other.
How can parents be relieved of their task in concrete terms?
To stay healthy as a person or as a couple, you have to accept help. The sick child should regularly spend a few hours or overnight with a trusted person or go to an institution such as the Imago children's home. Parents should learn to think about themselves, to relinquish responsibility temporarily, otherwise they will burn out.
There are also events for the whole family. There, parents realise that they are not alone in the world with their fate. They experience precious moments together with their sick children.
Is it acceptable for someone else to take over the care temporarily to relieve the burden?
Giving your child to someone for care requires a great deal of trust, which must first be built up. A sick child cannot express themselves and tell you how they have spent the day. You feel at their mercy. But over time, the parents realise that it can work and that the children enjoy it.
Why do many people find this so difficult?
The more care a child needs, the closer the bond with them, because you really do everything for them. Letting go is a big challenge. Or the parents believe that it is not medically justifiable. But you can organise a lot of things.
A seriously ill child is a lifelong task. But its parents also grow old. Will the child then go into a home?
In some cases, the child is placed in a weekly boarding school while still at school age. The parents then take the child home with them at the weekend. Later on, children with disabilities often live in supervised residential groups, where they can pursue some form of employment.
Healthy children move out one day to live alone or with a partner. Young adults with disabilities also have this right. The process of letting go should start early, otherwise the child will not be used to anything that comes from outside.
What fears or worries do parents of children in need of care have about the future?
Many important questions need to be clarified: Will the IV still be paying in 30 years? Who will look after
who will look after my child when the current carers are no longer there? It therefore makes sense to think far ahead and make provisions.
Siblings or friends, for example, can support the child. Parents who accept their fate and don't struggle with it get through everyday life better. However, this is easier said than done. Society expects you to carry on functioning, but a diagnosis like this involves a huge amount of grieving.
