In most cases the child will get steadily worse until the last days. Try to stay in control, involve friends and people you trust and go through it together. Shut out the outside world that doesn’t belong to this group. Focus all energy that you still have on the most peaceful possible death for your child. Don’t wait too long with sedation. It is an almost impossible task for parents to decide this moment. If the child seems to have pain or a lot of discomfort, then sedation is the best choice.
Nothing is as awful as the feeling of powerlessness as your child deteriorates and there is nothing you can do about it. Trust your own intuition to act as needed. That’s why it’s important to have drugs like Morphine ready at home. You can use suppositories or an enema to quickly bring a child in a sedated state. After administering the drugs, always contact your doctor to check the next steps. You can always decide to bring the child under permanent sedation.
In most people’s experience, it was better to have their child at home for this stage. Try to get approval for this, make your wishes clear. Involving brothers and sisters at this stage can help them to cope better with the loss later.
Lastly, the most important advice: Have no regrets, every decision you take is at that moment the best one!