The diagnosis of a rare condition might mean you think more about issues to do with ‘life and death’. Many rare conditions are lived with over a usual life expectancy, but some may shorten life.   

Talking about dying – whether your own, or someone you care about – is not easy. You may also have particular cultural beliefs or taboos that make conversations like these harder (or maybe easier) to do.

There may come a point when talking about the end of your own life, or that of your child or partner, is needed. 

Talking about the end of life can feel very daunting, or even frightening. You might feel worried about how the person you are talking to might respond, or what it might bring up for you both. There can be a lot to think about, and manage, both emotionally and practically.   

Ask for help and support from health or social care professionals, and the people you feel closest during this time.

Conversations about dying

Conversations about dying do not need to be had ‘all in one go’. Sometimes it is about ‘testing the water’ and working out what sort of conversations might – or might not – feel possible between the people involved. What it is possible to talk about can change over time. Not everyone will be ready for some conversations at the same time.

Dying Matters (at Hospice UK) produce a very helpful guide about starting conversations about death and dying.

Together for Short Lives  provide lots of helpful resources when your child is dying, or for when you know your child will live a shortened life including ‘A guide to caring for your child at end of life’.

Practical matters

Talking about practical aspects like finances and wills can also help you feel more prepared emotionally.

Practical things to talk about may include:

• who has ‘power of attorney’ if your health declines
• a ‘living will’ if you are no longer able to communicate your wishes, or for certain circumstances that might occur
• talking with a partner, other family members and health/social care professionals about what would be involved in caring for your child/partner at home, and what help you might be able to have

My partner found it very hard to talk about dying, he just didn’t really want to go there. I needed to though, and I felt very on my own. Accepting we had different ways of coping took a while. It was the hospice nurse who helped me understand that, she was a big help.

Dying Matters have a useful guide to what to think about in advance.

Making memories

When someone is dying, or may live a shortened life, having enjoyable experiences and making good memories together is really important.

These don’t always have to be ‘big things.’ Sometimes it might be enjoying ordinary, everyday activities or time together in a way you find meaningful.

Doing something together that you have always wanted to do or see, or is a change from your usual daily life, is often not only a very positive experience in the present, but as a memory to look back on too.

Keepsakes

When you or someone you know is going to die, ‘keepsakes’ are often treasured by those who are left behind.

Some examples of keepsakes include:

• voice recordings on a USB stick
• videos and photographs
• messages or ‘memory books’ of messages
• memory boxes of favourite things
  letters for key events such as ‘big birthdays’ or a wedding day
• hand, foot or finger prints, or locks of hair

Purple Heart Wishes grant wishes to adults aged 18-55 diagnosed with a terminal illness.

The Good Grief Trust have ideas for ‘memory-making’.

The Willow Foundation provides special days out for seriously ill 16-40 year olds.

Talking to children when someone is dying

There may come a time when you need to talk to a child about the fact that their parent or sibling is – or may be – dying.

Even if you have been aware for some time that someone is dying, you cannot assume that your child or young person will necessarily have been aware of this too.

It can be tempting to ‘put off’ talking to them dying, particularly when things seem uncertain. Working out what to say, and when, may not be easy.  However, even very young children can pick up what is going on around them. If they are not told what is happening, they may feel more anxious.

Children show their worries by how they behave.

Children and young people often ‘show’ that they are worried by how they behave. They might become more argumentative than usual, find it hard to be away from you, have trouble sleeping, or not want to go to school.

Talking about the possibility of someone close to them dying will help them feel less ‘on their own’. It can mean they can also ask questions about any worries such as what will happen, or who will look after them.

How, what and when to say something will depend on a lot of different aspects.

This includes how likely it is that someone will die, and the timing of that. You will need to take into account:

• a child’s age (developmentally, not just in years)
• what they understand and know already
• their personality and cognitive ability
• what else they are dealing with right now –  for example, exams, changing year groups or friendship issues

Process your own feelings first.

The Child Bereavement Trust has a very helpful guide about how to talk with children when a parent is dying, and support a grieving child, or young person. It includes how to talk to children or young people with autism.

Talking to a child with the same condition

If your child has inherited – or shares – the rare condition with someone who is dying, they may have additional worries or questions.

Sometimes, they might ask if they are going to die too.

It can help to be prepared for this question as it may well bring up a lot of feelings for you during at an already difficult time.

• take a deep breath
• acknowledge that’s a big question to be talking about, and that you are glad they felt able to share it with you

Your response will then depend upon:

• the nature of the rare condition itself, and its impact overall
• how it was diagnosed (and how advanced it was in a parent/sibling)
• how old your child is, and what they are able to understand

Some example responses might include:

‘Although we all die one day, you will have very good care from doctors to help you live as well, and as long, as possible.’

‘Mum/Dad was much older when the doctors found out they had [name of condition]. Sadly, that means it was further along it when the doctors found it. The doctors know you have it already, so will be able to deal with any problems that come up much earlier to help keep you well.’   

‘[Sibling name] had a lot more health problems than you do . That’s very sad, but it’s no-ones fault. We all have to look after each other as best we can.’ 

There can be many things to take into account when someone is dying, and a sibling or child shares that same rare condition with their family member. Talking to a healthcare professional such as a psychologist, family therapist or child psychotherapist about these, and how best to approach difficult conversations, can help you feel more confident, prepared and supported.