Caring for the carer

Your CF clinic team has probably given you lots of information about cystic fibrosis and how to manage your child’s day-to-day health. But bear in mind that the most important part of this whole plan is you.

Research has indicated links between a parent’s wellbeing (particularly a mum’s) and their child’s mental and physical health. This means that looking after yourself will also have a positive impact on your child.

Self-care can come in many forms and, although having a newborn can make things difficult, it’s important to find time for it.

Looking after you

Be kind to yourself as you adjust to the new information and diagnosis. Here are a few ideas that can often help.

  • Don’t be hard on yourself. Acknowledge that you can only do so much, and allow yourself to make mistakes and forget things occasionally. You aren’t going to get it perfect every day
  • Use positive self-talk. Focus on what you achieve each day and the quality of life your family has.
  • Celebrate the wins.
  • Take time out. This will make you more resilient.
  • Practice relaxation or mindfulness.
  • Make sure you get enough rest, eat healthily and exercise – they’re all good for you and great role modeling for your child.
  • Encourage your partner or a family member or friend to attend initial clinic appointments so you’re not the only person hearing new information.
  • Acknowledge that you can only do so much, and allow yourself to make mistakes and forget things occasionally.

Taking care of your mental health

Good mental health is an important part of treating CF, both for people living with CF and the people around them. Mental health impacts on physical health, and conversely physical health also affects mental health. You can’t treat one in isolation from the other.

Understand that adjusting to life with a child with CF can take time, and may involve a process of grieving. You’ll sometimes be surprised by how you’re feeling.

Share your feelings with someone you trust, and don’t be afraid to show your emotions. Be aware that difficult events, like going back to the hospital, may set off memories and sadness and anxiety

It’s normal to experience feelings of anxiety or depression. It’s also important to ask for help and talk about how you are feeling. Tell people who offer to help exactly what you need – a shoulder to cry on, a helping hand with the children or making meals. Don’t be afraid to ask for help or accept it as it comes.

If your feel that you need to explore options for professional help to work through intense emotions and overcome obstacles, visit Beyond Blue.

Coping skills

Over the years you will have learned a wide array of coping strategies and styles. Now it’s important to tap into the resilience and resources you already have to cope with the challenges of caring for a child with CF. Your coping strategies can vary widely, from having a coffee with a friend to reading a celebrity magazine or seeking out professional help.

You might have used exercise to cope in the past but suddenly find you have very little time for it. However, including exercise in your weekly routine may be an important part of your child’s CF care. Tap into the resilience and resources that you already have to help you cope with the challenges.

Not in sync with your partner?

Difficulties may arise if your partner has a different coping style. One parent might cope by focusing only on what can be “fixed” now. The other might need to worry about, and predict, all the possible problems up until the child is 20 years old.

Each strategy can make the parent feel more in control, but if they are at odds with each other then your communication with one another can be difficult. Talk about it together so you can accept the differences and take them into account.

Sometimes it’s great just to talk with someone who knows what you are going through. CF Community Care can connect our members with others from the CF community who share similar experiences. Contact our office on (03) 9686 1811 or email if you would like a confidential one-one-one chat.