Caring for a loved one

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. 

• Grieving: The 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’.

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. 

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