Sample Text from Chapter 3
PROBLEMS FACED BY ADVOCATES
When you are communicating with someone who is psychotic, as Joyce Burland says in the NAMI Family-to-Family Education Program, you need to come in on the same runway they are on. Do not challenge their delusions or argue with them. If they think the house is surrounded by the FBI or Mafia, say “It must be frightening to think the house is surrounded by the FBI. Do you feel safer with me here? Do you want me to look out the window and tell you what I see?” Be kind, respectful, gentle, truthful, patient, and help them to feel safe. Speak in brief and simple words. Repeat yourself if necessary. Listen carefully without interrupting them and try to find the feeling behind what they are saying, for example, fear of harm or abandonment or loss or . . . . Use “I” messages instead of “you” messages which feel accusatory. For example, “I get worried when you don’t take your medications because I don’t want you to have to go to the hospital again.” If the person is psychotic, ignore obscenities or hurtful comments. Get help if you need to.
At times, many of us find ourselves listening on the phone to tirades of abusive language against us for: putting them in the hospital or not getting them out, not bailing them out of jail, or for just not doing what they want. We do not have to listen. We do not have to respond and be the other half of that conversation. Why indulge someone in something that brings out the worst in them? We can say something like “I would like to talk with you when you’re feeling better and I’m going to hang up now.” Sometimes they’ll say “No, no” and stop the abusive talk so you can have a regular conversation. If not, hang up and do not answer when they call back. If you find it too hard to hang up the first time, set a time limit such as “I’ll listen for three more minutes and then I’m going to hang up.” It is OK to take a break from this and as the “crisis” runs its course and things return to the way they were, you can communicate again. If the person is always abusive, try to designate a time to deal with it (say 3 P.M.. tomorrow or 3 P.M. on Wednesdays) and let it go from your mind until then. If you are with the person, you can leave or suggest a walk in silence for one or both of you. It helps to take days off and is even essential to your health. You are definitely not a bad family member or friend if you do this. Taking care of yourself is a good thing. Sometimes if it is true, we can say, “I’m just too tired to think about this or to deal with this now. Let’s talk about it tomorrow.”
A high percentage of people with mental illness smoke. Smoking apparently has a calming affect on the brain. Consider not criticizing or judging and just let the smoking be. You can certainly set limits that a smoker must smoke outside. Anyone in crisis might want to postpone a desire to quit smoking until they are stable and well along in recovery. A person with a brain disorder deserves the same education and health information from medical providers regarding the dangers of smoking. Addressing the health issues of smoking might best be done when the person is very stable or expresses an interest in stopping the smoking.
8. Encounters with the Criminal Justice System
Too often people who suffer from mental illness get involved with the criminal justice system. Very often the precipitating event is illness related. For example, stealing a car in a manic episode, stealing a blanket when psychotic and cold on the street, urinating in public when homeless. When a person is in jail, you can act quickly to notify the jail medical people of the past medical history and the symptoms exhibited prior to the arrest. You can request a medical evaluation and medical treatment. Do not expect an answer from them unless the person signs a Release of Information form. I recommend written information directed to the jail medical provider. That way the information can be more complete and you don’t have to deal with another person’s interpretation of what you are saying. You may want to write a letter to the Public Defender or private attorney explaining the medical condition and asking the court to please consider ordering a psychiatric evaluation and medical treatment, instead of or in addition to, incarceration. See sample letter in Appendix 6.
9. Dealing with Difficult People
When mental illness strikes, you begin to have to deal with a lot of other people in various government agencies and medical facilities. Sometimes the people are kind and helpful but others may be insensitive, unkind, and disrespectful. Try to stay focused on the goal of getting help for someone and be as kind as you can to this person who is a gatekeeper to that help. If you can get nowhere with this person, start up the ladder from their boss to the agency director. Do this with letters and send copies to your County Supervisor who will sometimes help you. It is important for them to know what happens on the front lines of local government service agencies. Contact your local NAMI and they may help you. When you have to deal regularly with a difficult person, designate a particular time to contact them, say Tuesday afternoons, and then take a break and do not think about it in between.
10. Embarrassing Public Behavior
Tell them to stop. If they will not stop, say “We have to leave” or “I’m leaving.”
11. Dealing with Guilt
Many of us have to deal with and release guilty feelings about the mental illness. This often goes back to the old days and the ignorant idea that bad parenting causes mental illness. We think things like “If her father and I hadn’t divorced” or “If I had been more structured” or . . . . Nobody benefits by replaying all the what-ifs. Release the guilt and stay in the present time. We have what we have and you cannot erase it. Guilt is useless. Pour your energy into useful activity. A friend reminds us in NAMI Family Support Group of something she learned through Alanon—“You didn’t cause it. You can’t control it. You can’t cure it.”
12. Dealing with Perpetual Grief
Mental illness can rob you of someone you love, and grief is a natural response to life changing loss. We want: our child to grow increasingly independent; a spouse who is independent and an equal participant in a marriage; a parent who can be loving, caring, protective, and nurturing; a sibling who can be a supportive, loving friend and companion who is always there for you. Mental illness cruelly shatters so many dreams, hopes, and plans. With a mentally disabled loved one, it is a continuing grief, unlike with a death or divorce where time eventually helps the healing process.
Writing about my grief helped me to accept and release some of it. Talking about my grief and listening to the grief of others in NAMI Family Support Group and class also helped me. Counseling and reading grief literature can also help.
13. Family Issues
Try to keep a balance in your life. Take good care of yourselves. Pay attention to and nurture your relationship with each other. There is a high divorce rate in families with a mentally ill member.
Often, the mentally ill family member gets all or most all the parent’s attention. Parents need to find a way to be able to spend time with the other siblings. Siblings should be able to express their negative feelings without feeling guilty. Siblings can make their own decision about involvement with the ill sibling and everyone else should accept it.
Holidays can be nightmares. The unusual behavior of a mentally ill family member may frighten some relatives or friends who do not understand. The ill person may be excessively jealous of well siblings or cousins. There may be problems with small children who tease or annoy the ill person. There may be times when you cannot get together with your family for a gathering because the ill family member was not invited or refuses to go; and you do not want to leave them alone. When the ill family member is included, make sure there is a quiet place where they can go and that they have permission not to eat with or be with the others if that is their choice.