Care at home is often the most peaceful option for the family and the child. Try to arrange that, possibly with the help of wider family and friends and home care services. Sticking to your regular routines helps to give the child a familiar structure and peace. Children want as much a normal life as possible, however sick they are. One of the things that we’ve heard from parents, is that they were grateful later that they went on with normal life as long as possible. Try to also take some time for yourself to re-charge (with support from home care services or family and friends).
Specialist Child Home Care Services (‘kinderthuiszorg’)
At the time of diagnosis, you may not automatically think about engaging home care services. From experience, it is recommended not to wait too long to do this, so that they can be engaged in the early stages and can support you, request any medical aids on time, make good agreements with you and the various parties involved. It’s helpful to have a fixed contact person. They will make a ‘care plan’ in discussion with you, laying out all the agreements that are important in the care of your child. The Child Home Care services organisation or ‘MEE” can help you get the right approvals so that they can offer the help needed. This can be:
- Nursing help
- Physical care (e.g. bathing your child)
- Respite assistance (e.g. taking your child our for a walk in the wheel-chair, day out to the farm, taking them to give blood) so that you as parent can give some attention to other children or take some essential rest.
As the disease progresses, the agreement may change as in later phases different or more intensive help is needed than in the beginning.
Discuss with the fixed contact person which treatments will be done by the nursing staff and which by you. You can consider having the more unpleasant or painful procedures done by the nursing team. They can administer medicines, show you how to work with tube feeding (if needed).
The Home care services can arrange a lot of things for you, don’t wait to get that in motion. Some examples you can think of are:
Three-wheel bike with foot supports
Special mattress to prevent bed-sores
Wheel-chair with optional support and table
They can also take over tasks after your child has died, like returning medical aids etc