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Parents are often unsure how much to tell other people about their child's illness. Friends and family will ask questions and be concerned for you and for your child.
You don't need to tell them anything if you don't want to. But you need support too at this time, and your friends and family may be able to be more supportive if they know that you are having a difficult time because of your child's illness.
Sometimes parents find it difficult to talk to other people about their child's illness. It can be very upsetting to have to talk to others about what is happening. Sometimes parents find that they have to explain what they know to a number of different people. That can take up a lot of time and energy at a time when you are needed elsewhere.
Sometimes it helps to give family or friends a contact that they can speak to for updates. Then you don't have to talk to people if you don't want to. You can leave a message on your answering machine or voicemail (see below for an example)
Thanks for calling. We are in the hospital at the moment with our son J… J… needs us right now, and we won't be able to return your call. We really appreciate your support. If you give my brother Peter a call, he can give you an update on J's condition and will pass on any messages to us.
You don't have to tell other people about your child's life support if you don't want to.
Parents sometimes worry that other people won't understand their decisions about life support, or might judge them.
Decisions about life support are more common than you might think. Sometimes parents are surprised to find out that their friends or family have been through similar things and are very understanding.
But you don't have to give other people all the details of what has happened. Some example phrases that you could use are provided below:
The doctors have done everything that they could, but they don't think that J… is going to make it.
J… isn't responding to treatment, so we are now focusing on keeping him comfortable.
The doctors have asked the palliative care specialists to see J because they don't know how long he has left
See also What should I do if others in my family do not agree about life support treatment?
What you tell other children will depend a lot on their age and how much they are able to understand.
It is usually best to be honest with other children. They will know that you are upset and stressed. Often they have some awareness of what is happening to their brother or sister, but they might not understand the details, or they may have misunderstood some things. They will probably be scared too, and what they imagine is often worse than reality.
You could ask them what they understand or have heard. Talk to them about their feelings and about your feelings. They are likely to be scared and sad. Sometimes children can be worried that they will lose other members of their family including their parents. It is a time when they are in need of extra attention and support, and parents can feel torn between the needs of their different children.
Talk to your child's doctors and nurses. They may be able to help you to talk with your children. There is often support for siblings available within hospitals. That can include counselling for siblings if they need it.