When someone you care about has lung disease or lung cancer, it can be tough. You want to help them, but it’s important to remember that you need support too. This page has tips and information to help you look after yourself while you’re caring for your loved one.
Being a carer
Helping someone with a lung condition can be a big job. It often means being there for them all the time, without any breaks or time off. You might feel like you’re always “on duty.” Even though you care about the person a lot, it can be tiring and emotional.
Read our blog posts about becoming a partner-carer or parent-carer to learn more.
Understanding their condition
Learning more about your loved one’s lung condition is a helpful first step. But be careful! There’s a lot of information online, some of which isn’t accurate. Our Information and Support Centre team can help you find good information and support. Call us at 1800 654 301 (it’s a free call) or email enquiries@lungfoundation.com.au.
Feelings of helplessness
Sometimes, you might feel helpless watching your loved one struggle with things like breathing or coughing. Just know that being there for them can make a big difference.
“It’s hard for my wife in a caring role. She can’t help me to breathe, but just her being there helps.” – Anonymous, living with idiopathic pulmonary fibrosis (IPF).
Read more about how to deal with feelings of helplessness.
Changes in behaviour and mood
People with long-term conditions may experience mood changes. They might get upset more easily, have less patience, or seem distracted. This can be hard for both of you.
If you notice these changes, talk to your loved one about it. Choose a calm time for both of you and focus on finding solutions together.
“Carers need support. They not only have to understand the disease their loved one has, but need to cope when their loved one has a good or a bad day. Because you are living with the disease, on a bad day, it can cause you to say some nasty things that may hurt your loved one, which you really don’t mean to do.” – Anonymous, living with chronic obstructive pulmonary disease (COPD).
You could start the conversation by saying something like, “I’ve noticed some changes lately. I know living with [their condition] is hard, and it seems like you’re dealing with some pretty tough emotions. Can you let me know when you’re really struggling, so I can try not to take it too personally?”
Regularly checking in with each other helps maintain a healthy relationship.
“Every night I check in with my wife and ask if there’s anything she wants to talk about, so things don’t build up through looking after me.” – Anonymous, living with bronchiectasis.
Staying positive and grieving
You’ll often hear “stay positive” when caring for someone with a lung condition. But let’s be honest, that’s not always possible. It’s hard to be optimistic when you see someone you love struggling. There are, however, healthier ways to build a positive mindset.
- Allow yourself to grieve: Grief isn’t just about losing someone to death. It’s about losing things that matter, like hopes and dreams. It’s a key part of processing the changes that come with caring for someone with a lung condition. These feelings won’t last forever, but they help you adjust to your “new normal.”
- Confront the realities: It’s easy to avoid talking about difficult things like the disease, fears, and what’s possible. Carers sometimes try to protect their loved ones by putting on a “brave face.” Meanwhile, your loved one might be doing the same for you. It’s healthier to talk about these things, share your fears, and even cry together. It can bring you closer.
Let your loved one do as much as they can
It’s hard to resist rushing in to help when you see someone struggling. While your instinct to help is good, you can help them more by letting them do as much as they can. Maintaining their independence boosts their self-esteem and helps them stay positive.
If you want to help, ask first, saying things like, “If that’s a bit of a struggle, I can give you a hand,” or “Would it be okay if I did this for you?” If they say no, accept it and let them continue, as long as it’s safe.
“Sometimes I wonder if I’m in a caring role or not, because he often doesn’t want my help. I have learnt that if he says no he doesn’t want help, then it means no, even if he is struggling.” – Anonymous, carer for partner with idiopathic pulmonary fibrosis (IPF).
Take time for yourself
Making time for yourself is essential as a carer. Caring for someone with a lung condition can take a heavy toll, and burnout is a real risk. Self-care is vital. It’s not selfish; it’s necessary.
Find out more about regular self-care tips and recognising the signs of carer burnout on our blog.
Resources
Blog: Feelings of helplessness in carers
Blog: Becoming a partner-carer
Webinar: Support for the carer’s wellbeing
Blog: Becoming a caregiver for a loved one
Video: Becoming a caregiver for a loved one
Blog: Offering support in the hard times
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