Caring for a loved one

Mind Matters

Carers and close family members of people with lung conditions don’t always receive the attention and support they need. In this section, we arm you with the tools and resources to look after your own wellbeing while caring for a loved ones living with lung disease or lung cancer.

Being in a carer role

Finding yourself in a caring role can be one of the greatest challenges you will face. In most cases, these roles are performed out of love for the person living with a condition and rarely carry any form of remuneration. Most people in a carer role are on duty 24/7. It can be an emotional rollercoaster, you don’t get holidays, sick leave or weekends off! Regardless of how much you care about the person youre caring for, it is not an easy taskSee our blogs for more information on being a partner-carer and a parent-carer.  

Understanding the disease

Educating yourself about your loved onecondition is a valuable first step towards feeling more prepared for the challenges to come. It is important to receive this information from reputable sources. Our Information and Support Centre can connect you with reliable resources and support services freecall 1800 654 301 (option 3).    

Feelings of helplessness

Many carers report feeling helpless. It is difficult to watch your loved one struggle with breathlessness, chronic cough and other symptoms while knowing that you can’t do anything other than to simply be there. But the fact that your loved one knows you are there, quietly supporting them with your presence, is one of the best things you can do.

 “It is hard for my wife in a caring role, she can’t help me to breathe but just her being there helps.” –  Anonymous, living with IPF.

Behaviour and mood changes 

It is not unusual for people to experience mood fluctuations as they adjust to a chronic or life-limiting condition. People who feel overwhelmed often become less tolerant, distracted and short tempered. These changes can be challenging.  

If these things begin to occur for your loved one, one of the most effective and helpful things to do is to talk about changes you have noticed.  Schedule time to talk when you are both calm and in a good frame of mind. Acknowledge it is a difficult conversation and your goal is to come up with possible solutions, rather than throw accusations around. 

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.

 Your opening might go along the lines of: “I’m not sure if you have noticed, but I have seen a change in the past few days/weeks. I know that having … is really hard for you and it looks like you might be struggling with some tricky emotions. I wonder if you could let me know when you are struggling so if you snap or appear distracted, I can make allowances and not take it personally”.  

 Making time to regularly check in with each other will help keep relationships healthier. 

Every night I check in with my wife and ask if there is anything she wants to talk about, so things don’t build up through looking after me. – Anonymous, living with bronchiectasis.

Staying positive and grief 

It is impossible to stay positive all the time. You can’t always stay optimistic and hopeful while watching a loved one struggle with a lung condition.  The good news is there are strategies you can use to help with a positive outlook. 

  • GrievingThe key to supporting someone living with a lung condition and remain as positive as possible is to allow yourself to also grieve and be sad along the way. Grieving is not just the sadness we feel when a person we care about dies, grief happens when we lose things that are important to us or when major changes happen in our lives. We grieve lost hopes and dreams. Feelings of grief and sadness won’t last forever but are integral to adjusting to your ‘new normal’.
  • Confront realities: Another trick to staying as positive as possible is to talk about ‘the elephant in the room’: the disease, fears, realities, possibilities and how you might manage the challenges. Too many carers try to protect their loved one by putting on a brave face and not talking about fears and concerns. In most cases, the reality is that your partner is busy trying to protect you too by also not voicing their worries, fears and concerns. Talking and crying about it together can bring you closer and let the other know that they can talk about the ‘untalkable’.

Letting your loved one do as much as they can 

It can be hard to stand by and watch your loved one struggle to do something when your first instinct is to rush in and do it for them. However, letting your loved one maintain as much independence as possible is essential for their self-esteem. It might take them a bit longer and may be hard to watch but it is important to let them do it for themselves, for as long as they possibly can.

If you do want to help, ask first if it is OK for you to assist. Use phrases like “If that is a bit of a struggle, I can give you a hand” or “would it be OK if I did … for you, it would let me feel useful”. If they say no, accept it and let them continue with it as far as is safely possible.

“Sometimes I wonder if I am in a caring role or not, because he doesn’t often 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.

Time for Self 

Finding time for yourself is very important. Taking care of others takes a toll, especially if it is a long-term proposition, and carer burnout is a real possibility. A great deal of research has gone into the emotional and physical toll that caring for a chronically ill person has. The most commonly reported thing that carers miss out on is time for self-care. Without it, you will burn out and be less able to care for the person you love. Making time for yourself is not selfish, it is wise. 

Read more about day to day self-care activities and recognising carer burnout in our blogs. 

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Mind Matters was part funded by a COVID Response Grant from MSD.