Talking to your taitamaiti

Most parents find this hard to do when a taitamaiti  has cancer. How much do you tell them? What do you tell them? Do you give honest answers to their questions?

Sometimes we feel we cannot give an honest answer because we want to protect our taitamaiti or because it is easier for us. Tamariki are quick to sense when something is wrong and will need reassurance. 

 

Younger tamariki may not understand what cancer is but they will be fearful of all that is going on: the hospital, tests and treatments, unfamiliar people and separation from home and whānau. What they want most is reassurance, that you are with them and the hospital team is there to help. Most hospitals have Play Specialists on staff who, through therapeutic play, can help your taitamaiti understand what is happening. You and your other tamariki can often participate in the play with your taitamaiti so the environment becomes more familiar and less threatening. 

Older tamariki are better able to understand their diagnosis and, even though it is difficult, being honest when discussing cancer is usually the best approach. Talking to them openly about their diagnosis, treatment and future can help to alleviate the fear of all that lies ahead. 

 

If you're finding it hard to talk to your taitamaiti, let your hospital Social Worker or Play Specialist know. They have resources that can help. 

How to manage your child's behaviour

A cancer diagnosis will have a huge impact on your taitamaiti. Fear and feelings of anxiety may cause him or her to become more needy and dependent, argumentative and difficult. The medications your taitamaiti receives can also affect behaviour causing irritability, outbursts of anger and tears. Such unpredictability can make it hard for you to know what to expect. 

 

The entire routine changes for you and your taitamaiti with lengthy stays in hospital and attending appointments. The treatments can make your taitamaiti feel unwell for some time and then there are the physical side effects to manage, in particular, changes in their appearance (hair loss) which can affect confidence and self image (especially in older tamariki). The emotional aspect of a diagnosis can make discipline difficult. You may feel helpless and guilty. Watching a taitamaiti go through treatment can be hard and so it is natural to want to make the taitamaiti the centre of attention, offering treats and special privileges but too much can have consequences for your taitamaiti and whānau. 

Tamariki need guidance and structure from their parents, even when they are unwell. The rest of the whānau may feel neglected and maintaining routines, structure and boundaries within the family can be a challenge, especially if your taitamaiti requires lengthy treatment and long stays in hospital. 

 

During treatment, your taitamaiti will be given gifts and extra attention from you and from visitors. When treatment is finished, there may be an expectation that this will continue. Issues with discipline can arise when the special attention ends and normal life resumes. 

Here are some tips that may help:

  • As parents and partners, find time to talk to each other about the effect your child's illness is having on you and the rest of the whānau 
  • Try spending most of your hospital visiting time during the day and go home in the evenings to be with whānau (if possible)
  • Set behavioural limits, make these clear to your taitamaiti and stick to them
  • If treatment is lengthy, work out a strategy to care for your taitamaiti and ensure other whānau members are not neglected
  • Adjust expectations to how your taitamaiti feels physically on any given day
  • Reward good behaviour with praise
  • Make it clear to your taitamaiti that misbehaving will have a consequence, This could be time out or temporary revoking of privileges and ensure that the consequence is realistic, something that you can enforce and carry out
  • Seek help from your medical team. They have helpful resources on hand and can suggest parent support services which could be helpful 
  • If you are having a difficult time managing your child's behaviour or feel there is something else going on (for example, you observe dramatic changes in your child's personality and behaviour or your taitamaiti will not respond to the boundaries and limits you have set), then seek help from :
  • Supportive family and friends
  • Your child's care team
  • Kenzie's Gift

Talking to your other tamariki

Siblings of a taitamaiti with cancer can experience the same feelings as you. Your other tamariki may also feel resentful of the attention their brother or sister is receiving and they can feel left out, angry and isolated. 

Their needs can often be overlooked, especially in the initial weeks after diagnosis, and often these feelings are because siblings feel you have enough to worry about. 

 

These feelings may be expressed outside of the whānau unit, perhaps at kura (school), so it's a good idea to let teachers know that a brother or sister has been diagnosed with cancer. 

 

Teachers will be aware of the stress within the whānau and can alert you to any behavioural changes at kura, like: 

  • withdrawal, becoming very quiet
  • crying
  • argumentative and disruptive, fighting, angry, frustrated
  • quality of schoolwork declines, falls behind in class
  • missing kura

If a sibling is having trouble coping, let your medical team know. Hospital Social Workers can recommend support systems, such as Kenzie's Gift and others, that can help.

Include your other tamariki:

  • Let them know you still care about them. With all the attention the sick taitamaiti is receiving, siblings may feel left out and neglected 
  • Try to keep the whānau routines as normal as possible. Enlist the support of wider whānau and friends to help and keep tamariki well informed in an open and honest way 
  • Encourage visitors to bring a small gift for other tamariki too if they have brought one for the sick taitamaiti.

Encourage them to show their emotions and tell you how they feel

Your other tamariki will be on the same emotional rollercoaster. Let them know it is OK to feel anger or fear, sadness and grief. Help your tamariki give voice to their feelings by asking some leading questions and reassure them it is safe to speak openly and express themselves. 

Feelings of guilt

It is not unusual for a taitamaiti to feel that the cancer of a sibling is their fault. Perhaps they said terrible words to them or wished that something awful would happen to them. They may feel guilty because they are healthy and their brother or sister is not. Reassure them that nothing they said or did caused the cancer. 

Kura

Tamariki at kura may tease or leave your tamariki out of social circles, fearing they may catch cancer from them. Let teachers know about the cancer diagnosis within the whānau so they can help other staff and pupils understand. Involving your children's close friends in discussions about the cancer can also be helpful. 

Fear of hospital and treatments

Younger tamariki in particular can be very frightened by the thought of their sibling in hospital. and the sight of the sick child Seeing them, either in hospital (for example, with tubes attached, lying in bed) or at home (hair loss), can be upsetting. Be proactive if you can, explaining what the treatments are, what the tubes are for, how the treatments may affect the child their sibling and what others in the whānau may expect to see. Tamariki can often be reassured by visiting the hospital and seeing where their sibling is but they should not be forced to go if they are unwilling. 

 

Often one parent will spend more time at the hospital and the other will be with the whānau. Something as simple as a phone call from hospital to speak to tamariki at home can help everyone feel connected. 

Fear that their sibling might die

Many people hear the word cancer and associate death with it. Your other tamariki may think their sibling will die. They may not express this to you because they are scared it could happen or they do not wish to upset you. Once again, being open and honest is important here. Explain that the medical team is providing the best possible treatment for the best possible outcome and that many tamariki do get better but, with cancer, it is not always the case. If you feel unable to answer some questions, assure your tamariki that you will find the answer and let them know. Ask your medical team for advice and information. 

  • Give them a choice where possible e.g. "who would they like to pick them up from kura? Auntie Martha or Uncle Joe?"
  • Fair and consistent discipline, even during tough times, is important
  • Seek advice and support from your care team if you have difficulties with your other tamariki that you cannot manage
  • Let your tamariki know they can always ask questions, speak openly, confide their fears, worries, joy and sadness with you 
  • Let all of your tamariki know and often that you love them 
  • If one of your tamariki  enjoys Facebook or Blogging, ask them to pass information through social media. This is a good way to keep the friends of your ill taitamaiti in the loop and will give other tamariki in your whānau an important role to play
  • Sometimes as a parent, you can become too tired to talk on the telephone, relaying information. If you have an older taitamaiti, suggest they assume this responsibility
  • If difficult information needs to be shared with the whānau, ask a member of your care team to deliver this at a whānau meeting 
  • Involving your other tamariki in the support team can help them feel needed and appreciated at a time when the focus is on the tamariki with cancer. Enlist their help with running the household, doing the shopping, keeping relatives and friends informed
  • Take as many opportunities as you can to be with your other tamariki - to play, cuddle and enjoy special time together

Talking to Extended Family and Friends

It can be difficult to tell other whānau members, relatives and friends that your taitamaiti has cancer. Every whānau is different but being open and honest can be a good way to start. 

Providing information and reading material you receive from the hospital may help others get the picture. In general, the greater the understanding, the more helpful and supportive others can be.

Family and whānau want to help but how? Extended whānau and friends will be concerned. They will want to help but do not always know what you need or even how to offer assistance. "Call me if you need anything" places additional stress on overwhelmed parents who must then think about what they need, pick up the phone and ask. 

The best support can be an offer of something definite, for example, "Let me go to the grocery store for you today or "Can I mow the lawn for you?"

Your friends can coordinate themselves into a team, dividing up tasks to meet a family's your needs, this can be really helpful. 

Here are some other ways friends and whānau can help - don't be afraid to suggest them:

  • prepare meals to bring to the home or to hospital 
  • feed the family pets 
  • develop a roster for visiting the taitamaiti in hospital or at home (in consultation with you) 
  • being a supportive ear for you, listening in a caring way 
  • providing things your whānau enjoys, for example, a day at the beach or a fun bicycle ride 
  • drop off and pick up tamariki from kura or after school activities (sports, hobbies etc) 
  • clean the home, do the laundry, water the plants and tend to the garden
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