My child has a terminal brain tumour

Writing a plan for where your child dies and the care you want for your child at the end of their life can be a positive and supportive thing to do and can give you some control at this difficult time. Some choices are only possible for your child with planning, such as brain donation or deciding what will happen to their social networking accounts after they die, often called their digital legacy.

This is called advance care planning. Talk to your child’s healthcare team about the care choices your child has and about setting up an Advance Care Plan (ACP).

Doing this helps to make sure that everyone knows your/your child’s wishes and things can be put in place for your child’s care to run smoothly.

It can help to prevent, for example, unwanted admissions to hospital. It can also prompt the difficult conversations around symptom management, organ donation and how and where you/your child wants their funeral to be. You may want to visit a hospice to get a feel of the place and the staff, or investigate having hospice care at home.

In the plan, you could also designate a close family member or friend to act as a co-ordinator to communicate your desires/needs to others and sort out the practical issues after your child dies.

Planning ahead allows you to think about practical issues, make the important decisions and put things in place so that they’re out of the way and you can then forget about them until you need them. You can then spend your time with your child, focussing on your, your child’s and your family’s feelings and needs.

You can find more information about creating an Advance Care Plan, including suggestions for things you may want to discuss with your child’s healthcare team, here:

• Together for Short Lives
  Helps children and their families living with a life-limiting or life-threatening condition get the very best care and support they can, so they can make the most of every moment together.

We all tend to avoid talking about death and dying, and it can also be very difficult to decide whether to tell your child they’re dying.

While it will depend on your child’s age and whether it’s right for your family, talking about death can help demystify it. It can help you know what you and/or your child want and, depending on your child’s age, help you support them (and their brothers and sisters) in talking about and alleviating their fears. Not talking about it can lead to feelings of isolation.

Brothers and sisters will need time to come to terms with it all and need just as much support and understanding as you, the parents. It’s important for them to spend time with their sibling, building memories they can take with them through the months and years following their death.

Of course, talking about death can be really difficult and most people don’t know how to go about it or how to start the conversation.

Be aware that this is unlikely to be a one-off conversation and don’t feel that you have to always get it right. The more you talk, the easier it will become.

The following organisations and websites give helpful advice on how to talk about death to your child, to people in your family and to friends:

• CCLG (Children’s Cancer and Leukaemia Group):
  Preparing for your child’s death
• Dying Matters:
  Talking about death and dying
• CLIC Sargent:
  Facing death and talking about it: a booklet to help young people (aged 17+)
• Child Bereavement UK:
  When a sibling is not expected to live: supporting children

For older children who have social media accounts, it will save a lot of difficulty if measures are put in place to sort out what will happen to these. It can be difficult to talk to your child about this, but if you can, try to ask them what they would like to happen to their accounts.

If they would like it to be closed down after they die, they could write down the various passwords and give them to a trusted friend or family member, or they could set up password managers on their computer and leave details in their Will.

Facebook now allows people to request that their account is permanently deleted after they die or they can set up someone they trust as a legacy contact to manage their account after they die. Either of these can be set up from Settings.

A legacy contact can pin a tribute post on their timeline and respond to new friend requests, but they can’t post as the person or see their messages. Depending on the settings, other friends can share memories of your child.

If measures are not put in place, although family members can request an account to be permanently deleted, it’s a much more complicated process, involving proof that your child has died and also that you’re an immediate family member.

• Facebook: Memorialized accounts

Unless you have relevant passwords, Twitter, Instagram, other social media networks and email accounts also require much documentation to deactivate an account after someone has died, regardless of a person’s relationship to them. This process can be distressing as well as time-consuming. The only alternative is to close the account beforehand, which may be extremely upsetting to your child nor what they want, so it helps to have the passwords stored and given to a trusted person or written in a Will.

Twitter:

• Deactivating a Twitter account (with password)
• Deactivating a Twitter account (without password)

Instagram:

• Deactivating an Instagram account (with password)
• Deactivating an Instagram account (without password)

For other social media and email accounts, details of their processes can be found on the relevant company’s website.

It’s very important at this time to also look after yourself physically. This will help you face the stress and the challenges you’re likely to meet. You may be caring for many hours a week, including at night. If you’re not well, you’ll be less able to support your child and family.

You can find more information about how this can help, here:

• Child Bereavement UK:
  Maintaining your physical wellbeing

Some people don’t want to know, so this section may not be for you. But other parents ask how they’ll know that death is approaching.

What happens in these last few days/hours is different for everyone, but it can help you to support your child, your family and yourself if you know what might happen.

Knowing what are natural physical changes, and how to manage them, means you won’t be worried that it’s a medical emergency which requires more drastic intervention. Some physical changes can be distressing to parents if they’re not aware that this is a normal part of the dying process.

Ask your child’s medical team which symptoms your child is likely to have. You may feel you don’t want to ask, but they’re comfortable having these conversations.

This is not something that many parents think about or know about, and some find it hard to consider. But when parents have been told about it, some have said they wish they’d been given the option before their child died. Others have donated their child’s brain and found it a comfort.

Giving researchers access to brain tissue helps them develop new and better treatments to help find a cure and prevent other families being affected in the same way. It can help people feel their child is making a difference and saving lives indirectly.

If this is something you think you/your child would like to do, it needs to be planned in advance.

More information about this, including a video of one mum’s story about why she and her family decided to donate her daughter’s brain to research, can be found on our Brain donation page.