When your child suffers from schizophrenia

[David Baxter PhD]

Parents of Adolescents With Schizophrenia
Center for reintegration

People with schizophrenia typically exhibit their first symptoms during adolescence or young adulthood, and thus are likely to be living with their parents. When parents first learn their child has schizophrenia, they usually experience a range of strong emotions - shock, confusion, dismay, sadness, and even anger. Parents often search frantically for answers that may not exist. They may even deny their child's illness or blame themselves or their circumstances for the illness.

Helping the Adolescent/Young Adult With Schizophrenia Who Refuses Treatment
A common problem among parents of an adolescent with schizophrenia is how best to help the person who doesn't know she is ill or who refuses to recognize the illness. There are several tactics a family can use in trying to get help for such an adolescent:

Contact a local support group for families of people with schizophrenia, to talk with others who have had similar experiences and to hear their ideas.

Keep a detailed journal or diary of the person's strange behavior and thoughts. This may be a valuable tool later when trying to get financial assistance for her.

Find a good psychiatrist. You can do this by finding other families who can recommend a psychiatrist who has successfully treated their own family member. You can also contact one of the national organizations, such as NAMI or the American Psychiatric Association (202-682-6000; American Psychiatric Association), for a referral.

Contact the psychiatrist before he sees your family member. Provide him with information from the journal you've kept and ask about his treatment approaches, including medications.

Contact appropriate officials if the person with schizophrenia has threatened to hurt others or herself, or if she shows a tendency toward violent behavior.

Make your home as "suicide-proof" as possible. Remove any guns, large knives, ropes, and poisonous/toxic materials that the person could use to harm herself.

Get involved. After getting your child into treatment, consider working with an advocacy group to improve the laws in your state concerning treatment and benefits for people with schizophrenia.

Don't give up! Much research is being done worldwide to better understand and treat schizophrenia. Medications developed in the last decade are a great improvement on older anti-psychotics. New medications are in development to improve symptom management for people with schizophrenia, allowing them to feel better, move more quickly toward recovery, and ultimately lead more productive lives.

How to Be Supportive With the Adolescent Who Has Schizophrenia
Adolescence can be a very difficult stage of life, even for teenagers who do not have a mental disorder. Adolescents are trying to separate from their parents and establish their own identity and freedom, which can become especially challenging for parents of an adolescent with schizophrenia. Parents may become frustrated and bewildered in trying to find the "happy medium" between helping their adolescent manage her illness and allowing her the appropriate freedom and privileges.

Enlisting the help of the treatment team is critical to successfully managing an adolescent with schizophrenia. Remember -- you do not have to handle everything by yourself. Members of the treatment team can offer useful ideas to help you manage various aspects of your child's illness, and to be the most help you can to her.

Some specific things you can do to be supportive in your adolescent's treatment include:

• Work with the treatment team.
• Get to know the individuals on your child's treatment team, and establish good communication with them.
• Know whom you can contact in case of an emergency or if you have important questions.
• Be observant for unusual or inappropriate behaviors that may indicate a return of symptoms and relapse, and report these to the treatment team immediately.
• Help with medication compliance, sticking to a medication regimen is the cornerstone of successful treatment of schizophrenia, and most people with schizophrenia must take medication for the rest of their lives to control the symptoms. You and other family members will play a significant role in helping your child consistently take her medications. Even people with schizophrenia who are highly functional and capable of managing many of their daily activities sometimes need help and reminders for sticking with their medication routine. Medication adherence can be a difficult issue with some people -- especially those who are not convinced they need medication in the first place. In these cases, getting help and support from the treatment team is essential - and it can also keep the parent from having to be the "bad guy."

You may find some of the following tips useful in helping your child consistently take prescribed medications:

• Talk to her about the importance of taking her medication - tell her that it is a key in the road to her recovery. If she resists, try to persuade her using benefits you both agree on (for example, her medication will help stop the voices, reduce her anxiety, help her sleep better, and so forth).
• Know which times are not good ones to talk about medication schedules - don't push the issue or get into a confrontation about it.
• Help her establish a routine for taking her medications at the same time each day (for instance, setting her watch, taking the medication with her morning juice, taking it when she brushes her teeth, etc.).
• Monitor for side effects and make sure she understands which ones are serious and need immediate attention.
• Discourage the use of alcohol and street drugs, and remind her that avoiding these substances lessens her chances for return of symptoms.
• Compliance at home and school.
• Involve the person having the illness, and seek his input in establishing routines and guidelines for activities of daily living.
• Establish set times for going to bed and getting up, eating meals, studying, and recreational activity.
• Be clear and consistent with expectations -- but try not to overload the individual with too many expectations at once.
• Help with diet and exercise.

Recovery from schizophrenia requires not only medication and therapy, but also proper nutrition and regular exercise. Unfortunately, both the illness itself and side effects from medications can interfere with proper eating habits and regular exercise. Helping your child establish healthy eating patterns and the habit of exercising - especially if these were not part of her routine before she became ill - can be very trying. Be as patient as possible, and keep reinforcing the positive benefits to her of good nutrition and exercise.

Specific tips for helping with proper diet and exercise:

• Encourage healthy eating habits, and help your child choose foods that are balanced and nutritious.
• Minimize the snacks and junk food you keep in the house.
• Actively encourage some form of daily physical exercise.
• Consult your child's doctor, case manager, and/or recreational therapist for ideas about a regular exercise program and available community resources.
• Be aware that certain anti-psychotics can cause increased appetite in some people, especially at the beginning of treatment.

Making Use of Available Services
The need for belonging and peer acceptance is a major issue during anyone's adolescence and young adulthood. Teenagers with schizophrenia have the same needs; however, group acceptance and fitting in may be especially hard for them. One of the biggest problems that people with schizophrenia say they face is not being accepted by others. This can lead to social withdrawal and isolation -- which are also symptoms of the illness itself.

By making use of a number of available services and organizations, you can help your child find a peer group in which she feels safe and accepted. Your child's case manager, doctor, or rehabilitation counselor can offer assessment and input regarding the type of group that may be appropriate and your child's readiness to participate in such a group.

Suggestions for group involvement include:

• Organizations such as the Girl Scouts or Boy Scouts, local sports teams, social clubs, church-affiliated youth groups, and so forth.
• Group therapy (this can be arranged through your child's therapist, doctor, or case manager).
• Support groups for people with schizophrenia (such as Clubhouses, Internet chat rooms for people with schizophrenia, local support groups, and so forth).
• Avoiding Neglect of Other Children in the Household: Siblings of people with schizophrenia often secretly share the guilt and fear their parents feel. When the fears and concerns of siblings are neglected, these family members may become resentful and even jealous of their ill sibling. It is important to help siblings feel that they are not "forgotten," since much of your time is bound to be consumed by managing the care of the child who is ill.

Siblings of children with schizophrenia need special attention and support to deal with the many issues they will face. A first step in helping siblings process a brother's or sister's illness is simply acknowledging that all family members are profoundly affected, and that you cannot do anything to make this go away.

Some things parents can't do:

• Can't lessen the impact of the illness by not talking about it
• Can't shield the siblings from their own feelings
• Can't determine how each child will cope
• Can't take away the stigma of mental illness that persists in our society

Some things parents can do:

• Can talk about your feelings and encourage your other children to express their feelings, as well
• Can learn as much as possible about the illness, and communicate what you know to your other children
• Can make sure the child with schizophrenia does not become the axis around which all other family members revolve (which is detrimental to both the ill person and the other family members)
• Can read some books and articles about the sibling experience with schizophrenia

Here are some books that may help you deal with issues facing the sibling(s) of a person with schizophrenia:

• Surviving Schizophrenia: A Manual for Families, Consumers, and Providers by E. Fuller Torrey, Paperback - 480 pages (4th edition, April 2001)
• How to Cope With Mental Illness in Your Family: A Self-Care Guide for Siblings, Offspring, and Parents, by Diane T. Marsh, Rex M. Dickens, and E. Fuller Torrey, Paperback - 206 pages (May 1998)
• Imagining Robert: My Brother, Madness and Survival: A Memoir, By Jay Neugeboren, Paperback - 304 pages, (Reprint edition, April 1998)

Managing Your Emotions
A multitude of feelings and emotions come up in families coping with a child diagnosed with schizophrenia. Some of these feelings and emotions will occur over and over again as you face new experiences and challenges on the road to recovery. Therefore, it is helpful to take a look at some specific feelings, how they manifest themselves, and how you can manage them.

Anger: Anger is a completely normal, healthy human emotion that we all feel at certain times. Anger can be caused by both internal and external events. You have probably experienced some feelings of anger over the fact that your child has schizophrenia. You may have asked yourself, "Why did this have to happen to our family?" or thought, "No matter what I do to help my child, he will never have a normal life." Although you may not be able to get rid of angry feelings or change the things that caused them, you can learn to control your feelings of anger with three techniques - expressing, suppressing, and calming.

Expressing your feelings in a non-aggressive manner is the healthiest way to deal with anger. Learn how to clarify your needs and how to get them met without hurting others.

Suppressing anger and redirecting it will help you convert anger into constructive behavior. Be careful, however, that your anger is directed outward, not turned inward on yourself.

Calming yourself inside will help you control both your internal responses and your outward behaviors. By calming yourself down, you will be able to lower your heart rate and let negative feelings subside.

Some tips that might help you control your anger include:

• Practice relaxation technique. Use deep breathing, or visualize a relaxing experience (such as being near a body of water or watching a sunset).
• Change the way you think. Replace irrational, angry thoughts with more rational ones, and be careful of using words like "never" and "always".
• Try to communicate more positively. Instead of jumping to conclusions, slow down and think through your responses, and listen to what is underlying the anger.
• Use humor whenever possible. Try to use some humor to face your problems constructively, and refuse to take yourself too seriously.
• Change your environment. Schedule personal time and space to give yourself a break from the problems and responsibilities that weigh on you and make you feel "trapped".

Having a child with schizophrenia is a reality that will not go away, and there may be many times when you experience angry feelings about aspects of your child's illness and behavior. Although you cannot change the fact of the illness, you can try to change the way you react to it. Controlling angry responses can keep you from becoming even more unhappy in the long run.

Blame and shame. It is quite common for parents of people with schizophrenia to blame themselves or one another. When you first found out about your child's diagnosis, you might have asked yourself, "Are we to blame?", or thought, "If only I/you had been a better parent."

As you know by now, schizophrenia is a disorder of the brain, thought to be caused by a chemical imbalance. One certain fact is that family problems and conflicts do not cause schizophrenia. There is nothing you did (or didn't do) that "caused" your child to develop schizophrenia. As the parent of a child with schizophrenia, fully processing and putting to rest feelings of "blame and shame" can help you move toward acceptance and understanding of your child's illness and allow you to manage your situation more effectively.

Stress: Stress is a natural part of life, although it is hard to define precisely because it means different things to different people. Each person handles stress differently - some people feel overwhelmed by situations that others actually welcome. You may feel a lot of stress in trying to cope with your child's schizophrenia, as well as with the needs of other household members.

Stress can cause physical, emotional, and behavioral disorders that affect health, vitality, peace of mind, and relationships (both personal and professional). Some suggestions for reducing or controlling stress include:

• Be realistic - If you feel overwhelmed by certain activities, learn to say NO. You may be taking on more responsibility than you can or should handle.
  
• Shed the "superman/superwoman" urge - Don't expect perfection from yourself or others, and don't hesitate to ask for help when you need it.
  
• Meditate - Just spending 10 - 20 minutes of quiet reflection daily may bring relief from chronic stress, as well as increase your tolerance to it.
  
• Visualize - Picture how you might manage a stressful situation more successfully.
  
• Take one thing at a time - Pick one urgent task, and take up the next one only after you finish the first one.
  
• Exercise- 20 to 30 minutes of physical activity each day benefits both the body and the mind.
  
• Share your feelings - Find love, support, and guidance from friends and loved ones. Don't try to cope alone.
  
• Go easy with criticism - You may expect too much of yourself and others. Try not to have unrealistic expectations of your child who is ill, or of other household members who are also trying to cope with the child with schizophrenia.
  
• Seek professional help when you need it - It may be helpful to talk with your doctor, spiritual advisor, or employee assistance program (EAP) professional if your stress is controlling you. They may refer you to a psychologist, psychiatrist, social worker, or other qualified counselor.

Planning for the Future: Estate Planning for Families of People With Schizophrenia
There are different ways you can leave money for your mentally ill relative without making him ineligible for public benefits like Social Security, SSI, Medicaid, etc. Naturally, parents of a child or young adult with schizophrenia may well be concerned about assuring that their ill relative is cared for financially without the risk that he will lose his entitlement, mismanage or squander the money, or be taken advantage of.

One option for parents to consider is a Discretionary Trust. A Discretionary Trust is a special kind of trust fund you set up for your child in which the money, property, possessions, etc. intended for the child are willed to the Trust instead of directly to the relative. You then choose a trustee who will manage and distribute the money to your child. The trustee will manage the money for as long as the Trust exists, make investment decisions, and decide how much money to release to the individual (and when). Therefore, it will be the trustee -- not the beneficiary of the Trust -- who determines how the money is spent.

Obviously, choosing the trustee is a critical decision - it must be someone very reliable, who will look after your relative properly and be a good steward of the Trust. It is important to know that the trustee has power only over the Trust, not over the individual - that is, the trustee cannot control the personal decisions of the individual with the mental illness.

It is best not to state in your will the exact amount (or any amount) to be distributed to a mentally ill person by a trustee. That person must be counted on to use his or her own judgment, depending on the emotional condition of the ill person at any given time. Choose a trustee who is familiar with mental illness and the problems of the individual he/she will be representing.

To find out the appropriate steps for establishing a Discretionary Trust, contact an attorney. Through self-help and support groups or national organizations for mental illness, you can also seek out other parents of people with schizophrenia, who have gone through this process.

Siblings of People With Schizophrenia
Most siblings of people with schizophrenia are profoundly affected by the occurrence of mental illness in their brother or sister. Experiencing abrupt and frightening changes in the behavior of a sibling can be a traumatic event that provokes anxiety, bewilderment, and embarrassment. Siblings of newly diagnosed individuals may find themselves struggling for ways to cope as their parents reel from shock and devastation and struggle to come to terms with their own grief and pain.

Although it may be hard at first, most siblings of people with schizophrenia find that they become knowledgeable about the illness over time and gradually learn effective coping mechanisms. Communication within the family unit is critical in helping siblings understand - and cope with - schizophrenia. Because of the variety of issues the family of an individual with schizophrenia is bound to face, seeking help through self-help and support groups is especially critical.

Siblings of a person with schizophrenia should keep the following points in mind:

• It is not your fault, or anyone else's, that your sibling developed schizophrenia.
• Everyone in the family is affected by the individual's schizophrenia.
• It is normal to have many strong emotions and feelings about your sibling's illness - talking about these with the rest of the family can help.
• You are an important member of the family and deserve attention just as much as your sibling who is ill.
• Don't feel guilty when you need to set limits and boundaries with your ill sibling.
• You are not responsible for your sibling's illness or behavior.
• You are not your sibling's therapist.

Helping your sibling with the illness will help everyone in the family to cope. Maintaining a positive attitude will help you deal successfully with your sibling's mental illness.

The Spouse of a Person With Schizophrenia
Living with a spouse who has been diagnosed with schizophrenia or who develops schizophrenia during the marriage places an enormous strain on all aspects of the relationship. It can also take a real toll on family life if there are children.

Spouses of persons with schizophrenia often experience guilt and shame, and they may even blame themselves in some way if the ill individual was diagnosed after the marriage. Personality changes, social withdrawal, irrational thoughts and behaviors, agitation, and difficulty relating to others - all aspects of schizophrenia - can make the spouse feel alienated, hurt, and resentful of the burdens her partner's illness imposes.

Schizophrenia disconnects people from themselves and from the ones they love. Feeling she has tried everything and failed, the spouse of an individual with schizophrenia may ultimately feel like giving up on the ill partner - and on the relationship itself.

Before things get to this point, it is important for the healthy spouse to understand that therapy is available which can help maintain and foster the relationship. Even if the person with schizophrenia is in individual therapy, marital therapy can be helpful if:

• The individual with schizophrenia is experiencing increased feelings of depression, anxiety, mood swings, or suicidal thoughts or feelings.
• The individual's illness is causing lifestyle disruption (inability to take care of herself properly, alienation of family and friends with inappropriate words or behaviors, etc.).
• The individual is having difficulty with intimacy.
• Getting a relationship back on track requires honesty, persistence, patience, and realistic expectations on the part of both partners. Marital (or "couples") therapy can help spouses:
• Understand the impact of schizophrenia on their relationship.
• Find new ways of relating that may relieve symptoms of schizophrenia.
• Clarify what the spouse can and cannot do for the ill individual.
• Strengthen the sense of intimacy in the relationship.

Adult Children Whose Parents Have Schizophrenia
There is an increasing prevalence of elderly persons with psychiatric disorders. The causes of psychosis in the elderly can be related to a diagnosis of schizophrenia earlier in life, or to the onset of a new condition.

Many adults serve as the primary caregiver for their elderly parent(s), which requires patience and understanding as well as resources of time and money. Some of the responsibilities you may be assuming if you are the caregiver for your parent with schizophrenia or psychosis are:

• Helping her with activities of daily living (bathing, dressing, grooming, eating, or toileting).
• Overseeing her medication routine.
• Transporting her to the doctor's office and other health-related appointments.
• Planning appropriate activities for her.

Overseeing her finances
As for caregivers of younger people with schizophrenia help is available in caring for an elderly parent. A good place to start is by asking your parent's doctor and/or social worker what resources are available in your area. You should also contact your parent's insurance provider(s), including Medicare and Medicaid, for information on what kinds of services are covered.

Types of Care Available for Seniors

• Living at home with adult children: As in any household with an ill individual, caring for an elderly parent at home requires education and the participation of all family members. Your parent may qualify for visiting nurses if he/she requires certain physical care or help with activities of daily living.
  
• Assisted living: This living situation offers elderly persons partial care and assistance with certain activities, meals, etc. The patient is generally ambulatory and can perform basic activities of daily living on her own.
  
• Skilled nursing care: This is usually in a nursing home or extended care facility (ECF), in which licensed nurses and other staff provide patients with around-the-clock medical care, assistance with activities of daily living, medications, etc. Patients in these settings are often partially ambulatory or non-ambulatory.

Some elderly people seem to feel that they should not take up the time of their doctors or other health care providers by asking questions. Or they may become nervous or flustered and forget which questions they wanted to ask. As a caregiver, there are certain questions you can encourage your parent to ask (or ask on her behalf), particularly with regard to medications.

These questions may include:

• Why am I taking this medicine?
• When should I take my medicine, and should I take it with food or on an empty stomach?
• Can I take it with my other medicines?
• How long will it take before I see benefits or results with this medicine?
• I feel all right now - can I stop taking my medicine? Will I ever be able to stop taking my medicine?
• What are the side effects of this medicine?
• Am I taking too many medicines now?
• I can't afford all of my medicines - what can I do?

Your parent's pharmacist is also a good resource for answering questions about medications. And your parent's social worker can help with questions regarding financial assistance for those medications.