When someone you love is diagnosed with a chronic condition like PAP, it often feels like a loss – for the one who is ill as well as the relative. Things change and limitations enter your lives. It can be very difficult to see someone you love suffer without being able to help, and you may feel helpless and scared.
It may feel wrong to do things your relative is no longer able to but neglecting to live your life due to a feeling of guilt is not the answer. You must find a way to go on with your life – your work, hobbies, etc. – and it may help to talk to your relative about your feelings.
As a relative, you are probably doing all you can to help your loved one. But it is important that you remember to look out for yourself as well. No one benefits from you trying so hard that you wear yourself out.
Think about how passengers of airlines are always told during the pre-flight instructions that in the event of an emergency, they must put on their own oxygen masks first before trying to assist others. The same applies to you as a relative. Below, you find some advice on how to look out for yourself.
If you start feeling worn out, it is important that you take it seriously and deal with it immediately. Ask for help. Just being able to get away and go for a walk for an hour to clear your head can make a difference.
Remember to take time to recharge your batteries by holding on to some of the activities that make you happy and give you energy. Whether it is a hobby, spending time with your friends or something else that brings joy to your daily life. It may feel difficult to prioritize yourself, but it is important in order for you to stay strong and be able to be a support for your relative.
Try asking yourself these questions to see if you are recharging enough in your everyday life:
When someone close to you is diagnosed with a chronic disease like PAP, you may feel scared and frustrated. But although it is natural to worry about your relative, it is important to try to stay positive and avoid your worries taking over your life. Elisabeth describes being the mother of a PAP patient this way:
Julie’s condition took over my life. No matter if she was in hospital, at home or in school, my life was all about looking after her. I couldn’t even go shopping. The shops are half an hour away and I would risk that she would need me. So I couldn’t really do much.
Today, Elisabeth has found a way to be the mother of a PAP patient without letting her worries take over her life. She now knows the warning signs, so she doesn’t have to worry all the time. And she is good at staying positive, even when Julie worries.
If your worries are taking over your life, it is a good idea to talk to someone about it. Try to find out what your worries are actually about. When you have identified what it is you are scared of and worried about, you can find information about it. For instance, you can ask your relative if you can come along and talk to his or her doctor about your worries. Or if you are worried about economic issues you can talk to a social worker at the hospital (this option varies from country to country).
To some, it is helpful to talk to a professional, like your doctor or a psychologist. It can also be a great help to talk to other relatives who are facing similar challenges. PAP Life is an online community where you can connect to other relatives. You can also contact your local lung disease patient association to learn more about support groups for relatives of people with chronic lung diseases near you.
Your relative may get angry and frustrated about the injustice of being hit by PAP. And as a relative, you may find yourself in the firing line. Although your relative’s anger is not aimed at you, it can be exhausting.
Some relatives feel they have to put up with everything, others get angry themselves. Both reactions are understandable, but it is more constructive to talk to your relative about it and let him or her know that you understand his or hers frustrations, but that it is not fair to take them out on you. Perhaps your relative needs to find other ways to handle his or her frustration, e.g. by talking to his or her friends or getting professional help from a doctor, nurse or psychologist.