Together for Short Lives
Call the Helpline 0808 8088 100

Looking after your emotional wellbeing

Caring for a child who has a life-limiting condition or terminal illness can be overwhelming. It’s easy to forget about or ignore your own emotions and feelings. It’s normal to find things difficult and it can be helpful to develop some self-care techniques to help protect your own mental health.

The following approaches can be helpful in practising the self-care you need:

  1. Try not to judge anything that you’re feeling
    As difficult as it is to come to terms with, you can’t change your child’s situation. You are probably experiencing a huge range of emotions, and it’s best to try not to judge anything you’re feeling as good or bad.  You may have some deep feelings and that’s OK, whatever feelings you have are allowed, and you have permission to find them difficult.

    Top tip: Try writing down emotions that you are experiencing, as this can help you to process your feelings.

  2. Be aware of how anxiety can appear in the body
    At times you may notice physical sensations such as a faster heartbeat, shallow breathing, tightness in the chest, emptiness in the stomach, or pins and needles in the legs and arms.  When we know to look out for sensations we can notice them and then let them pass us by – feelings in the body will come and go if we let them. This in turn can help us cope with them.

    Top tip: If you’re feeling claustrophobic or trapped open the windows, or sit on your front step or in garden, try to see the sky.

  3. Eat regularly and stay hydrated
    There is a strong link between food and mood, so eating and drinking regularly can help our minds have a better chance of staying healthy.

    Top tip: Keep a bottle of water in the fridge and try to make sure you have easy to prepare food in the house that you can eat quickly.

  4. ‘Move your mood’ by keeping active
    Moving your body can have a significant impact on your mood. Being outdoors has a profound impact on mental and physical health so going for regular walks, even if they’re just around the block, can be helpful.

    Top tip: If you’re feeling down, see if you can find something to do that involves moving – make a cup of tea, water a plant, or wipe a surface.

  5. Connect with people – reach out to friends and peers
    You may not always feel like talking, but if you can, sharing your feelings can be a helpful way of coping with them. Speaking to a friend or relative might not feel comfortable, so you might like to speak to our helpline on 0808 8088 100, or connect with people who have shared your experience, for example by joining our online family group on Facebook.

    Top tip: If you’re worried and feeling lonely start to think about ways to connect with people in your life – looking at pictures of people you love gets you thinking about them.

  6. Be kind to yourself
    What you’re going through is very difficult, so it’s OK to be struggling. Though you may feel alone, you’re not. If you can, reaching out to your partner, your friends or family, or a service like our helpline can be really helpful. But if you’re not ready for that yet even just listening to a chatty radio station or podcast or even an audio book can be useful if everything feels too quiet.

    Top tip: Most of all try to be kind to yourself. Try to avoid giving yourself a hard time for your feelings. It’s ok to be struggling.

Find out more

Mental health is a vital part of overall wellbeing and we need to take care of it like we would our physical bodies.

For more ideas for simple things you can do to help keep on an even keel have a look at our Looking After Yourself leaflet that has been designed to support families with a seriously ill child, even if you only have a few moments to focus on your wellbeing each day.

“I felt really scared and alone, but I didn’t want to speak to my family”

Mum of child with West Syndrome