A chronic disease like PAP can influence both yours and your relative’s daily life in many ways, practically as well as emotionally. It may affect the energy and mood of both of you, and this can, naturally, lead to conflicts. Whether you are the partner, child, sibling or close friend, you may feel that the dynamics of your relationship suddenly changes when PAP enters your lives. Therefore, it is important to take care of your relationship to avoid becoming merely patient and caregiver. Below, you find some advice on how to do this.
If you talk about PAP as something that is “outside” your relative and your relationship, as opposed to being a part of your relative, it is easier, for both of you, to be open about any problems or frustrations in connection with the condition.
It is important that you take time to talk about the condition and any problems or frustrations it may cause, but PAP should not be the dominant factor in your life and relationship, so you forget to make time for the good experiences you can still share. To some, having “meetings” regularly makes it easier to keep this balance. The meetings can be used for talking about how it feels to be a relative, and whether your relative would like you to be more involved and ask more questions, or less, if one of you feels that PAP is taking up too much room, or not enough, etc.
Take a moment to think about the activities you have enjoyed together during the years and would like to do again. Or come up with new activities to do together. Whether it is going to watch a movie or an exhibition together, cooking together or something completely different, doing something nice together that has nothing to do with PAP is important.
If you are the partner of a PAP patient, and your partner is experiencing breathlessness due to PAP, it may be difficult to make love together. Or you may be reluctant to do so because you are afraid. It is completely natural to experience these feelings, and it is important to talk to each other about these feelings to avoid misunderstandings.
Sex is an important part of life for many people, and this doesn’t have to change because your partner has PAP. When you learn more about which things worsen your partner’s breathlessness, you can try to avoid it when you are intimate by e.g. avoiding to press down on your partner’s chest.
Remember that just holding each other, hugging and kissing can also be a fulfilling way to show your love and remain intimate.
According to Danish psychologist, Bente Østergaard, patients and relatives go through the same crisis phases, but not at the same pace. The four crisis phases are
The relative is often further along in the crisis phases. If the relative unintentionally pushes too hard to make the person who is ill realize that he or she has to adapt to the new living conditions, eat healthy, exercise, go to the doctor, etc., the relative may actually make it difficult for the one who is ill to reach the next realization phase, and he or she may get stuck in one of the initial crisis phases. Learn more about PAP and crisis handling here.
As a relative you may feel powerless, and if so it is only natural to feel a need to act – to do something. Some, therefore, end up taking on full responsibility for their relatives’ disease, medication, exercise, etc. In some relationships, this works fine but in others it causes problems, because the disease takes over completely and does not leave room for anything else.
If you have read and learned a lot about PAP – which is good because it makes you equipped to understand the challenges your relative is facing – you may feel you have lot of good advice to offer, suggestions for new ways to deal with the condition, etc. But although it is important that you support your relative in exercising and eating healthy, as this improves quality of life, you should be careful not to come across as lecturing or demanding. Remember that even small changes can be difficult for the one who is ill. If you are too ambitious and push too hard, it may have the opposite effect, and you may cause your relative to feel insecure and worried that you are not satisfied with his or her efforts. Instead, it is often a good idea to just listen and let your relative know that you are there. And if you do offer advice, always remember to do it in a positive way.