If you’re not going to recover

It is important to balance hope with reality. There may come a time when the reality is that you are not going to recover. Death and dying are not talked about openly in our culture, and it may be difficult to face the knowledge that you are going to die. It will be difficult for your family/whānau and children too. Facing it together and allowing them to be part of that process is likely to help them face the future.

The more prepared you are to talk about what is happening; the more at ease you are likely to be discussing it with your children. If you find you can’t talk about it, there are others who may be able to help. These may include a trusted family/ whānau member, a friend, doctor, nurse or religious or spiritual person who knows your family/whānau and your values.

Younger children can have difficulty understanding the concept of death. In some cases professional help may assist. Child psychologists or psychotherapists trained in a variety of therapies can help any age group.

Children often know much more than we imagine, and need to be given permission to talk about it. We need to speak in a language that they will understand, avoid jargon and use open, honest, direct communication. Even more importantly, we need to listen. Sometimes children may use symbolic language. For instance, “I’ll stay here and look after you” might mean “I’m frightened to be on my own”.

You may not feel well or strong, but that might not matter too much because it will be the quality of time rather than the quantity that the children are likely to remember. Maybe the children can help to look after or care for you. Without overburdening them, you can help them feel included and special if they can do small things for you. If you are able, you may like to do things together.

Children learn about solitude, intimacy and companionship by being quietly in someone else’s company. You can be together without necessarily needing to talk, for example, when you are reading, drawing, and making things.

Your children will probably ask questions, such as:

What about me?

  • What will happen to me?
  • Am I going to die too?
  • Will others I love die too?

What about you?

  • Will I see you again?
  • What happens to your body?
  • Where do you go?
  • Does it hurt?
  • Why does it have to happen?
  • Is it a punishment?
  • Is it my fault?

It may help to expect questions and to think about how you want to respond in your own way. There is no right way – it will depend on your philosophy of life and beliefs. What is most important is that your child feels able to voice their concerns, questions, and their thoughts and feelings are taken seriously.

Children may ask questions over and over to try to understand what’s going on. Try and give consistent answers and information. Be aware that children’s level of understanding may change during your illness.

Here are some things you could say in answer to:

“What will happen to me?”

“Daddy/Mummy/Granny, for example, will still be here and will look after you. Daddy will take you to school and Auntie will collect you after school and you will stay with her until Daddy comes home and collects you. Uncle will take you to swimming/football.”

Children need very specific answers to this question. They need to know where they will live and with whom, and who will do all the things you have been doing for them.

“Will Daddy/Granny die, too?”

“Everybody has to die sometime, but Daddy/Granny is healthy at present and there is no reason for you to think that they will die soon.”

“What about you?"

You may feel comfortable talking about your death with your child. Many parents or caregivers find this too painful. If you feel like that, then ask a friend or a professional who knows your child and you to talk to your child.

The main thing to remember about telling children is that they need clear, simple, truthful information repeated as things change.

Other things you could say:

“It’s no-one’s fault. Nothing you did or said made me get ill”.

“Cancer is not catching. Most people die when they are old and their bodies get worn out. It is very unusual and very sad for someone young to be so ill that the doctors cannot make them better.”

Talking about dying

“Although Mummy is dying, the family/whānau will stay together; we will look after one another. Mummy’s love will always be with us and will help us.”

Children need to know what will change in their family/whānau life and why, and the reassurance of knowing that some things will stay the same: “We will still go to the football match on Saturday”.

“Everyone is very sad that Mummy is dying. Sometimes it makes us all feel very angry too. It seems so unfair. It is no-one’s fault. It is because of Mummy’s illness.”

Remember – no-one knows exactly when someone will die. Children need to have gradual explanations about what has happened and why, and what may happen next. When death is very near, children may need to know that: “We don’t think Dad will live much longer now”. “We think he will be weaker each day.”

Older children may want to know something about how death will occur and may be reassured to know that: “Dad will become more deeply unconscious, his breathing will get much slower, with big gaps between the breaths, until eventually it stops altogether. Dad’s heart will stop beating and he will be dead. It will be quite peaceful.”

Here’s an example of how death and a funeral can be explained to a child.

“When someone dies their body is no more use to them. It cannot feel pain, happiness, hunger or sadness. A dead body has stopped working forever. It is not like being asleep. A dead body cannot wake up again. A dead body is usually put in a special box called a coffin. Their coffin is either buried in the ground or burnt in a special oven called a cremator. This is known as cremation.

A funeral is a time when everyone who knew Mummy will get together to remember her. Some people will cry, everyone will think a lot about Mummy. There will be special prayers and hymns/songs. We will play Mummy’s favourite music. Uncle will talk about Mummy. Is there something that makes you think of Mum – a special song or story that you would like to share at the funeral?”

Feeling a part of this ceremony can give children a sense of belonging.

Tangihanga

Tangihanga is one of the most important cultural rituals of Māori. While it is an emotional time for all, it also unites members of the whānau, hapu and iwi who are affected by the ‘mighty hand of death – te ringa kaha o aituā. The formalities begin with the karanga – the call of welcome by selected women – onto the marae. Women from the visiting group of mourners respond in kind. They are directed to seating while close members of the deceased’s family may approach and sit beside the body. Formal speeches by the local male leaders begin and are replied to by males from the visiting group.

Speeches on the marae ātea are usually in Māori. However, if the body is held inside the meeting house, opportunities are given for women and even young adults to pay their respects in English.

Children are an integral part of the mourning and fare-welling ceremonies, often being seated beside the open coffin. These speech formalities are completed by the hongi, the pressing of noses, between visitors and local people.

Young people are often seen working in the kitchen, providing food and drink as part of the process of removing the tapu from the visitors. This is called whakanoa. Tangihanga generally last for three days but may be prolonged for up to a week. Nowadays, tangihanga are also held in family homes, community halls and urban marae.

After the burial, the ritual of ‘takahi whare’ occurs to remove any lingering spirits, followed by a formal hakari.

The ritual of ‘kawe mate’ – taking the spirit of the deceased to related marae – takes place sometime after the burial.

After a year, the unveiling of a headstone – te hura kōhatu – takes place to commemorate the passing of a loved one.

Lee Smith

Afterwards

You can help children face life afterwards by preparing them for the future without you. A letter or DVD from you to be read/viewed later can be very positive.

You can make a photo album or scrapbook with photos recording the child/children’s babyhood and childhood, with messages about how you felt about your child at the time the photo was taken. You could select a special treasure that is significant to each of your children individually – this does not have to be a bit of jewellery or a family heirloom – something that they associate with a memory of you. Leave a story with it. You can, for example, leave their baby blanket, the shells you collected together at the beach, the first drawing they did for you. It doesn’t have to be fancy or expensive, but these things show your children that you valued and treasured them and your times together.

Who is going to care for your children after your death?

As a parent or caregiver, it is important to sort out who will care for your children after your death. You may want to talk to a lawyer to ensure these details, along with your Will, are taken care of properly. For more information, contact your local Cancer Society or call 0800 CANCER (0800 226 237). The Cancer Society has a booklet titled Advanced Cancer: A guide for people with advanced cancer that you may like read.

“It’s very important to me to make sure you will be safe and looked after, so I’ve talked to mum/dad/grandpa about what is going to happen. We will talk to you about it as well.”

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