10 Tips for Supporting a Family Member with Schizophrenia
Learn More: One of the most challenging and frustrating aspects of schizophrenia derives from a lack of knowledge and understanding. Quite simply, the more you learn, the easier it becomes to understand and explain what is happening and why. Although good progress has been made, schizophrenia still isn't fully understood, so don't try searching for the answer or the treatment, because they don't exist. It's far better, and actually fairly easy, to start with a broad understanding of schizophrenia. On this website, you could start with an introduction to schizophrenia, which explains the different forms the illness can take. Then take a look at the What You Should Know article, which explains about the causes & the symptoms of schizophrenia.
It's Not About Blame: The fact that your son or daughter has schizophrenia can tap into deep-rooted concerns and beliefs. For example, some people believe it is a punishment from God, while others may blame themselves or a spouse for a perceived weakness in the family line. The fact is blame of any sort is completely ill-founded. Blame is a negative and eroding emotion that achieves nothing. Far better therefore to focus on the positives and to look for the best.
Or Shame: We spend a good deal of time conforming to the standards of behavior others find acceptable. Whenever the spotlight of unwelcome attention falls on us we feel uncomfortable, worried, irritated and unsettled. Even if you have taken the time and trouble to learn about schizophrenia others may not. People whose only knowledge of schizophrenia comes from the media or gossip are likely to feel anxious, apprehensive and maybe even worried about their safety. What is your role in such circumstances? Is it to feel ashamed and apologetic, or might it be to reassure and educate? If we all adopt the second option we can make a positive impression.
Remember the Person: Amongst the turmoil of diagnosis, unfamiliar behavior, hospitalization, changes in medication, reactions from others and personal concerns, there remains a person in your life with a need for love and compassion. This same person is possibly experiencing a level of turmoil that most of us can't even imagine. At the end of the day they are a person with an illness. As the saying goes, love the person - hate the illness.
Remember Who You Are: When taking on the role of caregiver it's all too easy to see this as your role. The person you give support to knows as much about their future as you. They may recover. They may gradually get worse. They may dip in and out of psychosis for years and carry the burden that comes with years of medication, side effects, discrimination and hurt. The person may be confused so the structure around them needs to be stable. If you are the caregiver you are also just as likely to be the mother or father or sister or brother. Try to hold on to that role, the family structure and the dignity that comes from this.
Allow Space: This isn't just about physical space it's also about emotional space. Schizophrenia may limit capabilities but it doesn't mean you should take over the person's life. Equally, there is nothing to be gained from criticism, shouting, use of threats, or assuming an air of authority or superiority. Everyone needs time out and every so often it's simply better just to let things slide, as you would with anyone else. If you see every day as a challenge and you start to feel resentment, you are over-involved. It's time to step back.
Set Boundaries: This isn't a contradiction of the previous tip, it's actually the counterweight. If we accept the rights of an individual we also need to consider their responsibilities. Certain things are simply unacceptable and other things require feedback and some expectation that things will improve. Violence is one example, but matters of personal hygiene, sexual behaviors, time spent in bed, use of medication, are just a few examples where boundaries may need to be set. If you struggle with boundary setting you should discuss the matter with a mental health professional, who should be able to offer guidance.
Don't Forget Yourself: These last three tips are about you. We all have needs but the role of caregiver is one that can easily come to dominate your life. It is important to maintain your links with friends, family, hobbies and interests. A structured and involving life is important for everyone and while you may need to modify your needs from time to time, this is not the same as shutting down your life completely.
Stay Positive: Nobody can take away from you the years of commitment you have given or are about to give. You have experienced, or you will experience, a huge range of emotions. Faced with this it may seem a little superficial to be advised to look on the bright side. My argument is that it makes sense. Your emotional journey is part of a process that will hopefully lead to compassion and greater understanding. If you allow your mind to fill with gloomy thoughts, anger, frustration and resentment, it quickly becomes exhausting and your own mental health will suffer as a result. It can help greatly if you network with others in a similar situation to you (see below).
Seek Help & Support: By now you may have seen a psychiatrist, a social worker and nurses. Your experience may have been very positive, mixed or negative. Professional advice can be extremely useful but it is not really designed to meet all your needs. Sometimes you just want to talk to someone who lives what you live and who actually experiences the turmoil you feel. Sometimes you are in a position where you can help others. There are many different places to seek or offer help and support. For example, the National Alliance on Mental Illness (NAMI) provides extensive information. This link takes you to their Find Support page. NAMI also offer a free 12 week Family to Family education program. The National Institute for Mental Health (NIMH) also maintains a website packed with information, tips, advice and topical research updates.
Closer to home, why not visit our very own message boards get involved with the topics, or start your own? If you want to add face-to-face contact to your support network, it can be worth checking for local support groups in your local library, in local newspapers or maybe check with social services or your family doctor. Very often these support groups are quite small, have little or no funding, and may meet in a church hall or in people's homes. If you can't find anything, why not consider starting your own group?