Caring for a child who has a life-shortening condition or is terminally ill can feel overwhelming. From the time that a terminal or life-shortening condition is diagnosed you may experience feelings of bereavement and grief. You may also have to make important and difficult decisions about your child’s treatment. It can be difficult to support your child when your own emotions are so strong.
Depending on the age of your child and their condition, you may have to decide whether to tell them what is happening. If your child is old enough, they may realise that they are quite ill and ask questions about their health. It is natural to want to protect your child from being hurt or upset, making it difficult to decide what to tell them. You may find it helpful to talk about it with family, friends and your child’s healthcare team.
If you decide to tell your child about their condition, they are likely to have questions and concerns, and they may want to have a say in their healthcare and treatment. They may want your help to achieve something while they still can, or they may want to speak to you about spiritual matters, such as what will happen to them after they die.
Preparing for their death
You will have to consider arrangements for your child’s funeral. It is up to you and your child whether this is something you plan together. While nothing can take away your grief, many parents find comfort in knowing their child had the send off that they wanted. It may be an emotional struggle, but it is important that your child feels able to express themself and that they have an outlet for their emotions.
The family
If you have other children at home it can be difficult to cope with your own emotions and those of your children. They may have questions that you find difficult to answer. Children are perceptive, so try to be as honest with them as you can. In most cases it is best that they find things out from their family rather than that they find things out from other people or the internet, which can be more upsetting.
It is perfectly normal to want to spend all your time with your terminally ill child. But your other children will still need your time too.
It is important that all of your children have someone to talk to about their emotions and proper time with their parents and family. Try to spend quality time together as a family. If you are able to leave the house you could go to the park, visit friends or organise a day trip to the zoo.
Your child may want to continue with a routine, such as going to school or playing with friends. This sense of normality can be beneficial, but it is essential that they have someone close by to help if anything happens or they get too tired.
It can help to involve your whole family, including siblings, grandparents, aunts and uncles, in the care of your child. The more people you involve, the more help you are likely to receive. You should keep them informed on the progress of the illness and don’t hide anything away. Listen to any concerns they may have and try to answer their questions if you can.
Respite
If you have a child with a life-shortening condition or a terminal illness, they may need a great deal of care. Caring for a substantial amount of time can put a strain on you and your family.
Having a rest from caring or time away with the person you care for can break up your routine and allow you to reconnect with family and friends.
You should mention respite and find out what can be provided when you have a carer’s assessment or an assessment of your child’s needs. Some charities and carers groups also offer respite services or day trips which you might all find beneficial.
Watch the video below to see how one family deal with their loss.
Click on the bars below for more information on caring for a terminally ill child.
