Preparing for change

Explaining the side-effects

“I wasn’t aware that John had been so affected by the changes he saw in his dad which were caused by the drugs – perhaps because I saw him every day, I didn’t notice them so much. John came home from college and seemed really shocked by Dean’s weight and hair loss.” Corinne

“My dad has cancer, and he was in hospital for a long time. When he finally got to come home he was really sick. I had to help him up the stairs because he was so weak. It was strange because he had always been so big and strong, and now he was weak. It bothered me.” Richard

Some illnesses and their treatments can change people’s appearance. They may lose weight or lose their hair and they may have tubes connected to various parts of their body. You need to warn children if a parent looks changed and give them a simple explanation why this has happened.

If someone is very sick, it may be worth taking a photo to prepare the children in advance. Try to reassure the children that the person is just the same, even though they may look different.

It may also help to talk about some of the side-effects the medicine might be causing.

Dad’s medicine makes sure he doesn’t have any pain. But the doctor told me it sometimes makes him feel woozy and he might say things that come out all funny. That’s because of the medicine – but don’t worry, he’s not in pain.

When someone is ill they often do very little because their bodies aren’t working well. They don’t need to eat very often or do much. The medicine will make sure dad is not in too much pain.

Overwhelming tiredness

This is an excerpt from a mother’s blog diary which gives a sense of the  exhaustion that many parents feel from cancer treatments.

“I’ve been very tired lately and I seem to have spent the last week in and out of bed during the afternoons. It’s not really fair on the kids but I just can’t help it. Freddie wrote me a note saying that he wished I wouldn’t go to bed so much and that when he asks me to get up he wishes I would. He says that he gets bored when I’m in bed! What can I do? I’m forever being told that I don’t rest enough and should ask for more help and then when I do listen to my body I get moaned at. Oh well, such is life when you’ve got kids!”  Dawn, www.wigstowishes.org.uk

When the children want to visit the hospital or hospice

Often the well or sick parent may think:
I don’t want them to see me (or mum/dad) like this.
I don’t want them to remember me (or her/him) in this way.
I don’t want them to be frightened or have nightmares.

If the children themselves are asking to visit, try to put these thoughts aside and consider the benefits of not shutting them out at this critical point. Children may be thinking:

Why can’t I see my mum/dad? I really need to see them.
Do they look like a monster then?
Don’t they want to see me? Don’t they love me any more?

Prepare your children for what their parent will look like and how the room is set up. Describe the colours, furniture, equipment, smells, even the pictures on the wall. It can help children to have a task to perform, such as to fill up the flower vases, offer their parent a drink or draw a picture that can remain when they leave.

When children do not want to visit

On the other hand, some children may feel that they do not want to visit their sick parent. This can be very upsetting for everyone involved but insisting is probably counter-productive. Instead, develop ways to keep close links between them and the person who is ill. Phone calls are important. When even this is difficult, they can send in cards, bunches of flowers picked from the garden, the latest football scores, photos of the family pet, a CD of music.

Even the very briefest of visits can help both the child and the ill parent to maintain a connection, for example a quick dash in and out with the newspaper.

Staying away from home

“Sometimes when they wanted me to stay with Auntie Mary, I’d make out I felt sick or had a really bad tummy ache so I could stay at home. I wanted to be at home with dad in case he needed anything.” Jamie

You might feel that your children would be better off staying with relatives or friends because you’re trying so hard to cope with the extra pressures that illness brings and have so little time to look after your children. But even if things are very hard at home, many children don’t want to be separated from their immediate family and find it quite scary to be away at such a time. If they are sent somewhere else they may worry that things are actually much worse than they thought, or that they’ve been so naughty that they can’t be allowed to stay.

However, the illness, symptom or treatment may be so severe that the only solution is for the children to stay somewhere else – at least for short periods of time. If you decide this is the best option, work out ways to stay in touch.
Organise regular visits, phone calls, texts, e-mails or send letters, web cam or MSN messages to keep children up to date with what is happening. If at all possible, try to give children an idea of when they may be able to come home.