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Caring for a terminally ill child

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.

Finding help

You and your child may find it helpful to talk to a counsellor about how you are feeling. Your GP or hospital staff may be able to refer you to someone you can talk to individually or together.

If you feel you need a break you could speak to your local authority and find out about respite services in your area. Your local carers’ centre may also be able to advise you on services. You can find details of your local authority and nearest carers’ centre by searching our directory (above right).

Charities such as the Rainbow Trust may provide services in your area, offering advice and support to family members of people with your child’s condition. Your GP or hospital can also help to direct you to them.

Seriously or terminally ill children can sometimes be granted holidays, events or presents by organisations such as Starlight, Rays of Sunshine, and Hopes and Dreams.

If you find yourself in an immediate crisis you can contact the Samaritans 24 hours a day for confidential advice and support.

If any of your children want to talk things through confidentially with someone independent they can call ChildLine on 0800 1111. The service is free and open 24 hours a day.

Bereavement help

If you have lost a child you may find it helpful to talk to someone impartial about how you are feeling. You can call the following helplines:

  • The Child Death Helpline on 0800 282 986 is open 365 days a year and is for anyone who has been affected by the death of a child.
  • The Compassionate Friends helpline on 0845 1 23 23 04 offers advice and support to families of bereaved people.
  • Cruse Bereavement Care helpline on 08444 477 9400 offers free counselling and support to anyone who has been bereaved.

Support for your other children

You can find information and support for the other children in your family from:

  • the Child Bereavement Charity helpline on 01494 446 648
  • the RD4U website (part of Cruse Bereavement), which has online forums for bereaved children to express themselves and receive support from others
  • the Winston’s Wish helpline on 08452 03 04 05, which provides support and information to young bereaved people and their families

Assistance for your family

Finding out that your child has a terminal illness can feel overwhelming. It may take you a long time to come to terms with your child’s diagnosis, but having the right information and support to manage your child’s care can help you make the most of your time together.

Family and friends may want to provide emotional support or practical help with everyday tasks. Accepting this extra help may make you feel less stressed and will give you more quality time with your child.

It is important to make your child feel as comfortable and loved as possible, and to answer any questions they may have about their illness. This can be very difficult for parents, but there are lots of organisations that can help and that can put you in touch with other parents in similar situations either through online forums or support groups.

Practical help

You can get practical help by:

If your child has had to stay in hospital, the NHS and local authority will carry out an assessment of your child’s needs before they leave to ensure that they are receiving the right care at home.

Where to find support

Contact your local social services department to carry out an assessment of your needs and those of your family while you are caring. Social services may be able to provide services such as help with housework and equipment such as stairlifts to help you in your caring role.

Support groups offer emotional help and can introduce you to other people in a similar position to you. You can find details of local support groups in hospitals, churches, the phone book, through your social services department or in our directory of local support services for carers (above right).

Many websites provide information and advice for parents or carers of terminally ill children. Some have discussion boards where you can talk through your situation with others. To find a website see External links (above right).

An impartial and confidential counsellor can help you and your family discuss your feelings and advise you on techniques to help you deal with your loved one’s illness. For details on how to get in touch with a counsellor see Finding help.

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Page last reviewed: 21/03/2013

Next review due: 21/03/2015

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