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Becoming a carer for someone can happen abruptly or creep in slowly unnoticed until one day you realise you are caring more for someone else than you are for yourself

It is not a job you applied for. We know. And this new job as a carer can become as frightening as the initial diagnosis. Here we can help you...

Supporting the younger generation

It is a tragic fact the brain cancer kills more children than any other illness in the UK. It is also the most common form of cancer in teenagers and young adults. This will change. Leukaemia was once thought to be terminal; it is treatable and curable today. One day it will be the same for brain cancer. New surgical techniques and developments in chemotherapy and radiation treatments in recent years are improving the prognosis for our children. But sometimes it feels that you are fighting their corner on your own. This needn’t be the case – call us.

There is one word that will resonate throughout this section: TALK.

Talk with your child

Children have overactive imaginations. If you don’t talk about this situation you’re your child then they will provide their own answers, which will probably be wrong. They will know something isn’t right. Often, as adults, we are humbled by the strength, courage and dignity with which a child handles a situation. Use simple language, working on the premise that less is more. If your child is young, avoid words such as benign, malignant, therapies, cancer. It is important to let them know that they can talk about the illness (whether it is theirs, or yours) at any time. The child needs to know that they will not be abandoned and that you will be there for them. Tell them that you too have moments when you are frightened, angry, lost but that these moments pass, particularly when you can tell someone how you feel. Be truthful, but optimistic and sensitive.

Don’t be upset if your child chooses another person to be their confidante. Children have an innate need to protect those they love and they may feel that it is less of a burden for you. Just let them know that you are happy to chat – whenever.

Talk with your family

The bottom line is that, as a family, you have a shared history together. It may not seem like it initially; you will all feel that you are treading on eggshells and that the bonds you had have gone forever. They haven’t – they are just finding a new groove. You are in different places now, but the shakedown period will pass. As time goes on the weft and warp will be rewoven and you will emerge as a stronger unit. Routines are important and one meal a day together is crucial - this could be breakfast. It maybe that there needs to be a new division of labour as parents are dividing time between hospital and home, and possibly work. There needs to be a shared understanding about what is needed and family members must feel able to ask for help. Yes, there will be anger but by raising the tolerance levels this can pass.

Brothers and sisters may be coping with strong and conflicting feelings. They may feel guilty, feeling perhaps that they may be in some way responsible for their sibling’s illness. They may also feel jealous about the attention that is being given. Be sensitive, but firm. More than ever they need love and need to know what the boundaries are.

Talk with the school

Anxieties will be two way: the teacher will need to know what the limits are about what to expect and your child will be anxious about slotting back into the routine, the friendships and work.

Ideally the teacher and school will have kept in touch during the child’s absence, as will have friends. This makes the transition from home to school. It is important that you have a conversation with the teacher about exactly how much your child knows about their illness.

These are things to consider:

  • Change in physical appearance – be guided by your child about how they want to approach this. Some may be happy wearing funky hats or wigs if they have lost their hair. This may not be an issue for others and they may actually be quite proud that they are different. Having a close knit group of friends around will be very important. These are friends who have been on the journey with your child and so changes will not be a surprise to them.
  • Physical limitations – some drugs may leave your child unable to participate in sport. If they are already feeling isolated this can increase their feelings of frustration. Teachers can compensate for this by giving other, special tasks to do. Most children will do what they can.
  • Falling behind with work – hopefully work will have been provided during your child’s absence. If they are at secondary school it is important to identify one teacher who will coordinate this. It is important to focus on the skills, rather than the content of the curriculum and this will ease your child’s anxiety. Talk with the teacher about what is absolutely key for your child to do, what can be cut down or out altogether and draw up a realistic plan together about what can be done. Involve your child in this; it will enable them to feel more in control.

For the teacher:

  • Try to visit the child in hospital and at home before they come back to school. Take messages to and from friends and classmates. Talk to the parents about any concerns they may have. You don’t need to have all the answers, but you can take away any concerns and get back to the parents.
  • Liaise with the hospital tutor.
  • Talk with the parents about how much their child knows about their illness so that there are no mixed messages.
  • Talk with the child about how much information they would like others to know and whom should know.
  • Prepare the class for the return of the child. Explain any changes to appearance and ask the class if they have any concerns, as well as talking with them about how they might help.
  • Integrate the child into activities within the classroom. This is important if they can’t join in everything.
  • Ensure that there are no physical barriers and that the child has easy access to everything. This may mean making some slight changes to timings – e.g. letting them slip to the toilet before breaks.
  • Do not treat them any differently when it comes to discipline. But be aware too that at times situations may become overwrought so allow time out when appropriate. You will know if the child is taking advantage.
  • You should expect the same academic standards as before but also be aware that memory might be impaired, coordination might be affected and processes might be slower. You may find it useful to reassess the child on their return, so that any additional support can be put in place.

Talk with other parents

Don’t be surprised by some parents’ reactions. You will be astounded at how supportive they can be; equally there will be some parents who don’t know what to say or how to react. And at the far end of the continuum there will be parents who, through ignorance, unintentionally cause hurt. For example, they may tell their own child that they should no longer play with your child for a variety of reasons. Concentrate on the critical mass – those parents whom you know you can talk to and who will give in return. Often adults will be looking to you to give the lead. Help them out. Let them know that it is OK to talk about your child, or if you are having a bad day, that you would prefer to be on your own. Sometimes practical things speak volumes, so leaving a cake on the doorstep, or having a brother or sister over for a sleepover.

Talk with brainstrust

Fancy a chat? Give us a call.

Date published: 17-05-2009   Last edited: 6-12-2012   Due for review 31-01-2014Information Standard accredited brain tumour support information

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