Schizophrenia is a serious illness that can include multiple episodes and problems. It leaves the person vulnerable to stimuli, both internal and external in nature, and it's important to realize that the resulting symptoms and episodes are not willful behaviors. It's usually the close family members who are first called upon to provide the help that is needed in these instances. Therapists are experts in treating schizophrenia, with many ideas about managing the illness, but the family knows the person with the diagnosis well. Managing symptoms is a team effort that begins with the family.
While families do not cause schizophrenia, it's important to understand that stress tends to make the symptoms worse, and frequently has a role in relapse. In this article I hope to not only bring a better understanding of what the family can do to help the person with the diagnosis, but also to support family members in the important role they play in dealing with this demanding illness.
Our daughter has schizophrenia, and she lives with us. Over the course of the past few years, I have been with her every step of the way. A lot of time has been spent encouraging, supporting and understanding her and her illness, as well as helping to guide her through a multitude of episodes and a huge mountain of paperwork. We've navigated the system and the symptoms together! We've seen the ups and we've seen the downs, and so far God has seen our family through it all! Even though we have this illness in our family, it's very obvious that He is taking care of her and us. I cannot imagine doing this without God right beside us! Even our daughter's counselor has commented on how God must be with us!
The impact of this illness on families is truly significant, and it's not easy. Quite often families do not get the support they need to cope with the symptoms their loved ones are experiencing. They often find themselves dealing with marital conflicts, conflicts between siblings and the loss of long-hoped-for dreams. Much of the time families are isolated due to the circumstances they deal with daily. They tend to not bring guests over, and they find they socialize less. This is sometimes due to stigma or misunderstandings associated with this illness. Sometimes it is because of the severity of the symptoms involved.
The family experiences a wide range of emotions, including anxiety, guilt, embarrassment, pain, frustration, anger and sadness. Watching a loved one act differently can be scary and upsetting. Family members wonder what they could have done to prevent this illness. The fact is: nothing! They look back to see if errors in parenting were made. Parenting mistakes don't cause this illness. They try to help, and sometimes their attempts don't make any difference. Family members have no control over this illness. They might place blame where it isn't warranted because sometimes it's hard to know what the person can and cannot control. Although understanding that this is an illness and not a behavioral issue does help.
The family may try to adapt to symptoms, but as they become more unusual, the adaptation becomes more difficult. The family may try to persuade the person to think or do things a different way, even when it's clear that doesn't work. Family members will try to make sense out of things that don't make sense. They become frustrated and exhausted. They try ignoring the situation in hopes it will go away. They take on more responsibilities, provide supervision and curtail their own activities to care for the person. They begin to base their routines around the person and will sometimes ignore the needs of other family members. The person with the diagnosis becomes the focus of the family. While these coping skills seem to be negative patterns for a family to fall into, they are very normal for any family that is coping with such a difficult and confusing illness.
When psychotic symptoms temporarily fade, families can become impatient and frustrated because the person may still show symptoms of apathy, withdrawal and depression. While this is part of the illness, these symptoms can also improve. It's important to encourage the person to get out and participate in family and social activities.
This illness is cyclical, and relapses do occur. It's important for family members to recognize the warning signs (such as sleep disturbances, irritability, voices worsening and poor concentration), which will help in minimizing episodes. When episodes occur, try to remember what helped in the past and do it again. Talking with the person and contacting his or her therapist is important in managing these episodes successfully. It's also important to maintain a positive outlook. People with schizophrenia are potentially productive and creative people who can contribute to the family and society. The goal is to minimize episodes so that the person can return to work or school.
There are many things the family can do to minimize the effects of this disorder. Try to find the balance between appropriate stimulation and overstimulation by keeping a low-key, but not permissive, environment. The person will need a time out and a place to withdraw to when he or she feels overstimulated, and that's okay. Buying time to allow the medicines to work, while the person learns to tolerate stimulation, is important. The brain of the person with schizophrenia perceives a great deal of stimulation coming at them, and it can be overwhelming.
Staying in touch with family and friends, positive encouragement and normalizing the family routine are very helpful. Change needs to be slow, and stress needs to be moderate. It's important to reduce conflict and criticism and minimize nagging by keeping things cool and calm with regard to enthusiasm and disagreements. Try to always discuss any stressful event with the person. Finding a calm and relaxed time to do this is important. By including the person in family and event planning, and talking with him or her about all unplanned or unavoidable stressful situations, you are providing a good deterrent to good or bad stress-induced symptoms that affect the entire family.
While setting limits is important, conditions and rules should be minimal by keeping them specific and simple. Saying what you have to say clearly, calmly, positively and lowering your expectations temporarily based on how things went last month rather than last year will help. It also helps to selectively ignore the unimportant things, but never ignore any degree of violence.
Being supportive and helpful with the medicine regime is very important. Following the doctor's orders with medications will help to minimize symptoms, but street drugs and alcohol should never be used because they make the symptoms worse. Keeping in contact with a therapist who is knowledgeable about schizophrenia goes a long way in providing the support the family needs.
The family is vulnerable to co-addiction, which is when the person with schizophrenia is the sole focus of the caregiver. There are things that the family can do to minimize this risk. First of all, remember to always put God first! Then remember to take care of yourselves. Try to move toward acceptance of this illness and learn to detach a bit. The easier it is for the family to accept this diagnosis, the easier it will be for the person. Recovery takes time and rest is important for all involved. It's important for family members to keep a life of their own, and to maintain a healthy lifestyle by engaging in activities that are not related to the illness. Enjoy your own activities, have your own life and value your inner resources that God has given to you.
If you can solve problems step by step, and make changes gradually by working on one thing at a time, you are making good progress toward your goal of recovery. Accept your limits as to how much you can really help, and do not blame yourself or others. Expect the unexpected so you are more flexible to go with the flow when episodes come. Continue to educate yourself and others about this illness, and find the support you need. Actively reduce your stress level with exercise. Stay in touch with others socially, and support others who are in situations like yours.
Finally, the best way that you can deal with your own feelings is to look to God. He is our absolute best refuge in times of trouble! Psalms 9:9 Psalms 9:9The LORD also will be a refuge for the oppressed, a refuge in times of trouble.
American King James Version×and 62:8 are two examples of this. We are not alone as we face these battles, and we do win in the end.
Yamhill County Adult Mental Health and Schizophrenia Workshop presented by Sally Godard, MD; Bruce Neben, LPC, PsyD; and Betty Foufos, MA.