Pulmonary Alveolar Proteinosis
Information for relatives
TALK TO EACH OTHER
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INTRODUCTION YOU MAKE A DIFFERENCE YOU ARE NOT ALONE TALK TO EACH OTHER DON’T BE AFRAID TO ASK BE OPEN AND HONEST
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TAKE CARE OF YOUR RELATIONSHIP LOOK OUT FOR YOURSELF LEARN MORE ABOUT PAP
Introduction Chronic diseases do not only affect the person with the diagnosis. Everybody around the diagnosed person is affected to some extent. Loved ones in particular are emotionally impacted when their partner, parent, friend, sibling or child is diagnosed with a chronic disease. Whole families are thrown into a crisis period that they must learn to handle in order to adapt to a new life. It is not easy. It may take years. How do you support the person you love when you yourself are under immense emotional pressure and have to juggle practicalities of everyday life at the same time? There is no easy answer and no quick fix but in this handbook you will be able to find good advice, tips and tricks related to being a relative to a PAP patient.
You make a difference You may feel scared, angry, powerless, and experience a lot of other overwhelming feelings. It is understandable. But once the initial shock has settled, you will realise that you are not at all powerless. You are a very important support for your relative, and just being there makes a difference. Research has shown that family and friends can play an important role in helping patients deal with a chronic illness. The most important thing for people suffering from a chronic illness like PAP is to feel cared for and to know that they are not alone. As a relative, you can be an enormous support by helping out with daily errands and chores. For instance, you can offer to help out with cleaning, shopping, gardening and cooking dinner, go for a walk together, help with breathing and relaxation exercises, etc. And by accepting that your relative may need more rest than usual. Last but not least, you can offer emotional support. It is important to have someone to share oneâ€™s thoughts, fearsâ€™ and frustrations with. It helps your relative accept and adapt to his or her situation. When a person is diagnosed with a chronic and life-changing disease, it is a great support not to have to face all the changes alone. 06
You are not alone Being the relative of someone with a
If you feel alone as a relative to a person
disease as rare as PAP can feel very lonely.
with PAP, you may want to visit PAP Life
As Elisabeth, the mother of 15-year-old
which is an online community where you
Julie, describes it:
can connect to other relatives. You can also contact your local lung disease
I was in shock when the doctors
patient association to learn more about
told me that my daughter had
support groups for relatives of people
a very rare lung disease. It scared me,
with lung diseases.
because I didn’t know what it meant. And the doctors couldn’t even tell me. PAP is so
Although PAP is a very rare disease, many
rare that only few people know anything
of the challenges that people with PAP
about it. The worst thing was that I had
as well as their relatives face are similar
nobody to share my experiences with. No
to the challenges of people with other
one to tell me about what I could expect –
chronic lung diseases such as e.g. chronic
for Julie, for us as a family, for future plans.
obstructive pulmonary disease (COPD).
There was no one in the same situation as me because of the rarity of the disease. 07
Talk to each other Facing a chronic lung disease like PAP can bring you and your relative closer together. However, there are also challenges to overcome and pitfalls to navigate - and the best way to do this is through communication. According to Marianne Obed Madsen who advices lung patients and their relatives in the Danish Lung Association, it is only natural that your relationship is affected when a chronic lung disease like PAP enters your life: The relationship is put under pressure, and this can enhance both the positive and the negative aspects of your relationship. In connection with rare diseases like PAP, the diagnosis process is often a long and fatiguing journey, so when your relative finally gets the diagnosis, you may both be exhausted already. It is important to remember that if you are having a bad day, it doesnâ€™t have to mean that your relationship is not strong enough. It just means that you are going through a difficult time due to the disease.
Don’t be afraid to ask Trying to guess what your relative wants and
3 questions for your relative
needs from you is often not the best approach. Although you may have known each other for a
Ask your relative to think about these three
long time, you cannot read each other’s minds.
questions and write down the answers:
And if you try, you may end up in a situation where you try to give your relative space when,
- What do you want help with/support for?
in fact, what he or she really needs is for you to
- Who do you want help/support from?
be more involved. Or maybe you try to help by
- Who do you not want help/support from?
taking on a lot of responsibility and tasks that your relative would actually rather you didn’t
This gives you a good starting point for
talking about how you can support your relative in the best way.
Instead, you should have an open and honest talk about how your relative would like you to help and offer support in your daily life together and in situations with severe breathlessness, etc.
Be open and honest Talk to each other. It may seem obvious, but many forget it. It is important to be open and honest about how both your relative and yourself are feeling. Some relatives of patients with chronic lung diseases experience that the patients do not involve them and maybe even hide symptoms that could indicate disease progression in an attempt to spare them. Likewise, as a relative, you may be reluctant to talk about problems you are experiencing at work, etc. because you think they might seem trivial compared to what your relative is going through, or you donâ€™t want to burden your relative further. Every relationship is unique. Some people prefer to be informed and involved a lot because it makes them feel useful and close to each other, while others prefer otherwise. So open and honest talks with your relative are important.
Take care of your relationship A chronic disease like PAP can influence both yours and your relativeâ€™s daily life in many ways, practically as well as emotionally. It may affect the energy and mood of both of you and 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. It is important to take care of your relationship to avoid becoming merely patient and caregiver. Below you will find six good advice on how to do this.
1. 2. 3.
Make PAP an external factor Make room for PAP
Do things together
1. Make PAP an external factor 12
4. Be there, but beware 5. Listen, donâ€™t lecture 6. Stay intimate
1. Make PAP an external factor If you talk about PAP as something that is “outside” you 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.
2. Make room for PAP - but don’t let it take over It is important that you take time to talk about the condition and any problems or frustrations it may cause, but PAP should not become so dominant in your life and relationship, that 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. You may use these meetings to talk about how you both feel about the situation as patient and relative. Would your relative like you to be more involved and ask more questions, or less? Does one of you feel that PAP is taking up too much room or not enough? Etc.
3. Do things together 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 see 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. 14
4. Be there, but beware According to Danish psychologist, Bente Ă˜stergaard, patients and relatives go through the same crisis phases, but not at the same pace. The four crisis phases are:
Planning for the future
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 phase, and he or she may get stuck in one of the initial crisis phases. You can read more about PAP and crisis handling at www.pap.info. As a relative, you may feel powerless and feel a need to act â€“ to do something. Some end up taking on full responsibility for their relative's disease, medication, exercise, etc. In some relationships, this works fine but in others it causes problems, because the disease seems to leave no room for anything else. 15
5. Listen, donâ€™t lecture If you have read and learned a lot about PAP (which is good because it enables you to understand the challenges your relative is facing), you may feel you have lot of good advice to offer or suggestions for new ways to deal with the condition. Enthusiasm is positive just be careful not to come across as lecturing or demanding. Remember that even small changes can be very 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.
6. Stay intimate 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. Or you may be reluctant to be intimate because you are afraid that something might happen. If you don’t talk to each other about these things it might lead to unnecessary misunderstandings. Sex is an important part of life for many people, and this doesn’t necessarily 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. Read more about sex and breathlessness at the British Lung Foundation’s website www.blf.org.uk/Page/Sex-and-breathlessness
Look out for yourself When someone you love is diagnosed with a chronic condition like PAP, it often feels like a loss â€“ for the one who is ill, but also for you as a relative. It can be very difficult to see someone you love suffer without being able to help, and you may feel helpless and scared. 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.
1. 2. 3.
Recharge your batteries Manage your worries Talk to someone
4. 5. 6.
Deal with anger Be open about PAP Involve your children
1. Recharge your batteries 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 prioritise yourself, but it is important in order for you to stay strong and be able to be a support for your relative.
Are you recharging enough? Are there times during the week where you relax? Are there times where you forget about your worries, and just enjoy what youâ€™re doing? Do you find time to see the people you care about? Do you find time to exercise?
2. Manage your worries When someone close to you is diagnosed with a chronic disease like PAP, you may feel scared and frustrated. It is important, however, to prevent your worries from taking over your life. 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. - Elisabeth, the mother of a PAP patient. Today, Elisabeth has found a way to be the mother of a PAP patient without letting her worries take over her life. She now recognises the warning signs, so she doesn’t have to worry all the time. And she is good at staying positive, even when Julie worries.
3. Talk to someone
4. Deal with anger
If you feel dictated by your worries, try to find
Your relative may get angry and frustrated about
out what they are actually about. Once identified
the injustice of being hit by PAP. And as a relative,
you can start seeking information about it.
you may find yourself in the firing line. Although
For instance, you can ask your relative if you
your relativeâ€™s anger is not aimed at you, it can
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
Some relatives feel they have to put up with
(this option varies from country to country).
everything, others get angry themselves. Both reactions are understandable, but it is more
To some, it is helpful to talk to a professional,
constructive to talk to your relative about it and
like your doctor or a psychologist. It can also
let him or her know that you understand his or
be a great help to talk to other relatives who
hers frustrations, but that it is not fair to take
are facing similar challenges. PAP Life at www.
them out on you. Perhaps your relative needs to
pap.info is an online community where you can
find other ways to handle his or her frustration,
connect to other relatives. You can also contact
e.g. by talking to friends or getting professional
your local lung disease patient association to
help from a doctor, nurse or psychologist.
learn more about support groups for relatives of people with chronic lung diseases. 23
5. Be open about PAP At times, life with PAP can be challenging for the
children still appreciate being told what is going
one who is ill, but also for you as a relative. If
on around them. Children can sometimes view
you and your relative tell your family and friends
themselves as the cause of problems or major
about your relative’s condition and how it affects
events that happen around them, and they may
your life, they may be able to help you and relieve
view a parent's illness as haven't been caused by
you of some of your burdens. People often want
something they did.
to feel useful. Be clear about how they can help and don't be ashamed to ask for help or favours,
Children whose parents are diagnosed with
such as cooking a meal or helping with the school
serious diseases almost always struggle with
two questions: “Is it my fault?” and “Is my Mum/
6. Involve your children
Dad going to die?”. Talk to them and let them know that it is always okay to ask questions. This
If there are children in the picture, it is also
will help relieve some of their anxiety. Remember
important to talk to them. Although their
to take into consideration the age of the child and
understanding of the situation may be limited,
adjust your communication to it.
IS IT MY FAULT?
Learn more about PAP www.pap.info www.papfoundation.org www.rarediseases.org 25
This folder has been produced by Serendex in collaboration with specialists who have contributed with their knowledge about the psychological aspects of being a relative to someone with a chronic disease like PAP. Serendex Pharmaceuticals Slotsmarken 17 2970 HĂ¸rsholm Denmark www.serendex.com Info@serendex.com Tel: +45 7930 1414
Information for relatives to people with pulmonary alveolar proteinosis