Help for Families

Family-to-Family Class - Support Group Locations - Federation of Families -
Families and Treatment - Family Involvement & Obligations - Good Advice

• Learn all you can about the illness.
• Remember other family members are affected by this too, and they probably are experiencing denial, guilt, and depression just as you may be. Keep communication open by talking with them about this.

How To Get Good Results From 'The System:'

What To Do

What Not To Do

• Avoid guilt and placing blame.
• Find out about benefits and support systems when things are going well; don't wait for a crisis.
• Learn to recognize warning signs of relapse, such as changes in sleeping or eating habits, social withdrawal, signs of irritability. The person with mental illness may be able to identify early signs of relapse and may also be able to tell you what method he or she has used successfully in the past to gain control of symptoms and relieve stress. A visit to a psychiatrist may help prevent a full-blown relapse, particularly when the person needs an adjustment of medications.
• Anticipate troublesome situations. If Aunt Tessie can't handle the relationship, don't have her to dinner when your ill member is present.
• Do not agree with stopping medications because the condition is 'cured,' or because the medication 'makes me feel sick.' Refer these decisions to the doctor who prescribed the medication. Make sure your relative's uncomfortable feelings are made known to the doctor. A change in medication or doctors may be in order.
• Set reasonable rules and limits and stick to them. If you find this difficult to do, ask the doctor, or a counselor they have suggested, to help you do this.
• Do not suggest that the patient 'pull himself together.' If they could, they would! Not being able to do this is part of the illness. Remember that your loved one's suffering and distress are even greater than yours.
• Do not expect and insist that all peculiar habits be corrected at once. Focus on what is accomplished, not on what is not accomplished.
• At times people with mental illness suffer from memory loss or inability to concentrate. This is frustrating and frightening. Do not insist that the person with mental illness try harder to concentrate; just repeat the information in a nonjudgemental way.
• Do not fall in with delusional thinking. The person with mental illness needs to be able to depend on a person who is objective and aware of what is really happing. On the other hand, do not argue with this type of thinking or try to point out faulty logic.

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Frequently, when a parent, relative, or close friend becomes involved -- especially during the early phases of the illness -- each person is so overwhelmed by the experience that vague information and 'jargon' is accepted as substantive. Families want and need honest, direct information about the illness. They want specific, practical suggestions about how to cope during acute or stable phases of the illness. To get this kind of information, there are some things which you must do, and other things to avoid doing. Here are some hints to obtain positive results from 'the system.'

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• Keep a record of everything. List names, addresses, phone numbers, etc. Nothing is unimportant. Every date, time, etc., may come in handy. Make notes of what went on during conferences. Keep copies of all notices and letters. Make copies of everything you mail. Keep a notebook or file of all contacts. Don't throw anything away.
• Be polite. Keep all conversations to the point. Ask for specific information.
• Request written permission from your ill relative to review all documents. Only if permission is granted in writing will you be able to do so. This applies to people 18 or older.
• If the patient is in a private hospital, rather than a state institution, you may have your own physician who is in charge. Get the name of the Primary Therapist on the ward (usually a psychiatric nurse) - they will know most about the patient. Ask for an appointment to meet with this person; make it at their convenience.
• Come prepared with a list of specific questions. Some sample questions are: What are the specific symptoms about which you are most concerned? What do these indicate? How are you monitoring them? Who is documenting the chart? How often is the medication being monitored? What, specifically, is the patient getting? How much? How often? Has the patient been informed about medication side-effects? When can you look at the record book or chart? When can you meet to plan the transition back home?
• Keep the meeting short. If you come with a list of questions, you will be able to get all the information you need in less than half an hour.
• Write letters of appreciation when warranted; write letters of criticism when necessary. Send these to the head of the hospital (or unit -- or both), and send copies to anyone else who may be involved.
• Keep the patient informed about everything you plan to do. They might disapprove of your action or may wish to modify your plan.
• Finally, BE ASSERTIVE! As a taxpayer, you are entitled to information, respect, and courtesy. Your taxes go to public employees. You are not asking for gratuities. You are simply helping to get the job done.

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There are, however, some specific responsibilities for which you can hold staff accountable. The following don'ts will help both you and the helping professionals.

• Do not come late to appointments.
• Do not accept repeated cancellations.
• Do not make excessive demands on staff, i.e., don't harass the staff with special requests.
• Do not have long phone conversations filled with unnecessary details.
• Do not accept vague answers or statements which seem confusing. If a clinician says "we are observing your daughter carefully," recognize that this is a statement which provides you with no information. Don't accept it without further clarification, such as who is doing the observing, what is being observed (exactly), how is the information being documented, and when can you view the progress of the observation.
• Do not feel that you 'should know' and therefore inhibit yourself from asking for substantive information.
• If your loved one is in a state mental hospital and you have permission to look at the record book, set up an appointment with the Social Worker assigned to the ward. Do not postpone this meeting,and the earlier, the better! Request that the ward physician also attend the meeting. Ask to review your relative's Individualized Treatment Plan. This is legally mandated and must be carried out. You can ask to participate in the development of the plan. The patient has the right to have their wishes taken into account.
• When you ask how the staff is implementing the Treatment Plan, do not accept answers which imply that the patient is responsible for their own progress. Persist in finding out exactly what actions staff are taking; i.e., how often are they taking the patient for walks, which staff person is in charge of group therapy, how consistent is the treatment, does each treatment team member know what others are doing?
• Do not allow yourself to be intimidated.
• If your relative is in a group home or community care home, or any facility receiving public money, you are entitled to inquire about personnel qualifications. Do not permit unqualified personnel to continue to work without a formal complaint to the Department of Social and Rehabilitation Services.
• Never be afraid or ashamed to acknowledge that you are related to a person with mental illness.

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