There are visiting guidelines for children whilst you are an in-patient during your transplant. You will need protecting as your immunity will be reduced and children are more likely to be in contact with infections. An infection during your transplant is very serious and spending time in isolation immediately after your transplant helps to protect you until your immunity is on the road to recovery.
All children, particularly those under 11 years and especially those under 1 year, are discouraged from visiting the unit. Children of this age are more likely to have been in contact with infectious diseases and coughs and colds.
Children over 11 who are picked as part of the ‘3 permitted visitors in 24 hours’ should be supervised at all times and should remain in the patient’s room. Staff will turn away visitors in excess of the permitted amount or those that do not fit into these guidelines. They have your best interests at heart and are trying to reduce your chances of catching an infection.
Although children are not able to visit it is important for you both to be in touch by writing, phoning and sending messages via your permitted visitors. They will then feel included in what is happening and it will give an opening for them to ask questions and talk about the situation.
Talking to children about cancer is not easy but it will help them understand what is going on and they will feel more able to express their own feelings.
The many benefits to being open and honest and involving your children are:
- They will know what’s going on and so may feel less anxious and more secure
- It gives them permission to talk – they can ask questions and say how they feel
- It shows you trust them
- You won’t need to guard what you say all the time
- It can make you all feel closer and support each other
- They will learn some coping strategies for when life isn’t going to plan
Children often find out what’s going on even when they haven’t been told. Finding out like this can have a negative effect on a child’s relationship with their parent. They may wonder if they can trust you or other adults to tell them about important things. You will probably need time to take things in and cope with your own feelings before you talk to your children. Try to talk to them before they pick up on things and start to worry. Here are some practical suggestions:
- Explain the treatment plan and what this will mean for them. For example, who will take them to football practice or dance class.
- Prepare them for any physical changes you may encounter throughout treatment such as hair loss, weight changes, fatigue etc.
- Answer your children’s questions as accurately as possible given their age and prior experience with serious illness. If you do not know the answer, don’t panic say “I don’t know. I will try and find out the answer.”
- Reassure them that they have done nothing to cause the cancer, no matter how they have been behaving or what their thoughts have been. Explain that you cannot “catch” cancer like you can a cold.
- Allow your children to participate and make a contribution by giving them age appropriate tasks such as bringing a glass of water or reading to you.
- Encourage them to talk and express their feelings, even ones that are uncomfortable. But also let them know it’s OK to say “ I don’t want to talk right now”
- Assure your children that their needs are still important and that they will be cared for, even if you can’t always provide the care directly.
- Let them know how other members of the family and friends will support all of you and that they will be there to talk to.
- As always, show them lots of love and affection. Let them know that although things are different, your love for them has not changed.
For further information visit the macmillan website
They have advice on:
Tell your children you have cancer
Understand their reactions
Help them cope
Explain treatments to your children
Deal with changes to your family life
Talking to children of different ages and stages
Talking to your child if you are not going to recover
While you do not want to scare children that a close member of the family may die, if death becomes a real possibility, you need to seriously consider sharing this information with the children in the family. This is a complicated topic and you may wish to consult your clinical team or social worker to get some help.
One of the most important things to remember is to take your child’s age into account.
Pre- school children, for example do not understand that death is final. School age children tend to know that dead things don’t eat, breathe or sleep. By the age of ten, children begin to understand that death is the end of life.
When talking to a child about death:
- Try to use clear, specific terms. Being vague will only confuse your child.
- Use the words “death” and “dying”. Do not use terms like “sleeping forever” or “put to sleep”, because children will think sleeping is like death or be afraid that if they sleep, they might die.
- Try to be patient. It will take a long time for a child to fully understand and accept any type of loss. They certainly will not understand the first time when you try to tell them.
Please visit the Macmillan website (see above) for further help. You may have been referred to the palliative care team in the hospital or at home. They also have a wealth of knowledge to be able to guide you through this process.