HOW TO GET HELP -- AN INTRODUCTION

TABLE OF CONTENTS FOR HOW TO HELP


The following write-up, on how to get help was provided by the Alliance for the Mentally ILL Affiliates of Cambridge-Middlesex and Central Middlesex, who have published an excellent booklet and resource guide. Copies may be purchased. Please refer to note following this write-up. To use the table of contents, once you have finished reading a chapter, Page UP to the beginning of this document to access the Table of Contents again.

I. TREATMENT AND RESOURCES
Early Recognition. Mental illness may show up in childhood, adolescence, young adulthood or later. Getting help for a young person in a school or academic setting can be eased by teachers and guidance counselors, who can alert parents of personality or behavior changes and aid in finding a therapist or psychiatrist (M.D.). Sometimes, however, the illness first erupts suddenly, precipitating a crisis.

Crisis Intervention. When a mental illness is suspected and a severe crisis in behavior occurs, family members are often at a loss to what to say and do. It is most important to defuse the situation by establishing that you are genuinely concerned for your loved one’s welfare. Know what is most significant and valuable to the ill person. If you see that one approach is not working, back off and try another. Do not expect to know all the answers. Remember, because you are a family member, your experience with the person is extremely valuable. The following are suggestions for preparing yourself and members of your family for a possible crisis situation:

Keep a diary or thorough notes about 
(1) the ill person's diagnosis and medical conditions, 
(2) medications being taken as well as medications not tolerated and 
(3) specific behaviors and actions that preceded and followed the crisis. 

You may need to provide this information to the Crisis Team, the police and to mental health professionals. Plan and think ahead. Know what steps to take if the mentally ill individual gets out of control. Locate available sources for help such as emergency phone numbers (in some communities 911 will reach both fire and police departments), mental health crisis team or telephone number of the individual's therapist, helpful friends or neighbors and the Alliance for the Mentally Ill nearest you. Keep these numbers posted by your telephone. Consult ahead of time with the social worker or psychiatrist or with the nearest Community Mental Health Center so you will know how to obtain services when you need them.

As you deal with the situation, keep in mind that the mental illness is not your fault: nor is it the fault of the person who is in crisis. Mental illness involves a biochemical disorder of the brain, and it is diagnosed by its symptoms. It causes much distress to the person suffering from it. He or she may not be able to tell you how the mental pain is hurting.  Learn about your local Crisis Team and how it operates. Call them before a full-blown crisis develops. You will then better able to evaluate the situation and ask for help when really needed. The Crisis Team and/or law enforcement officers should be called for threat of suicide or danger to any person or property. If you psychiatrist or the Crisis Team deems it necessary, the ill person may be hospitalized. Therefore, it is prudent to plan for voluntary hospitalization or emergency commitment. Call you local AMI support group to help you put the situation in perspective and to carry on your personal life.

II. HELPFUL HINTS

It will not help to argue or deny that what your relative is seeing, hearing and feeling is real. Instead, assure him/her of your love and understanding, that what they are experiencing is real only to them, and that you want to help. - Honesty is always essential. Your relative needs to know that he/she can trust you. Discuss commitment if this is a possibility. Do not make threats unless you plan to follow through.

- Do not be discouraged if your loved one does not comprehend what you are saying when he/she is psychotic. Even though the thoughts of the person who is ill are disordered, he/she may perceive and remember later.

- In extreme circumstances, you may have to get a restraining order from the court. If the order is violated, you may have in hand the only certain way to get help from the Crisis Team and other authorities.

III.  STRAYING, MISSING OR HOMELESS
Many people who are mentally ill may feel a need to escape from their environment. Many families have had their mentally ill relatives missing for various lengths of time. Sometimes the ill person may call a family member or friend periodically or let him/herself be found in a hospital, shelter or jail.
However, some may vanish completely, possibly eluding much-needed treatment. As soon as you are certain your ill relative is missing, you should call the local police, requesting that the person be placed on the Police Missing Persons’ List nationwide. Then you should enlist the aid of NAMI’s network of volunteers who may be able to help locate the missing person. You can reach them by writing to Lonnie M. Edenfield, Sr., Chair, Homeless and Missing Network, Family SupportAMI, 1239-C Russell Pkwy. #2, Warner Robins, GA 31088, or by calling (912) 328-3555 (AMIoffice).
In Massachusetts the Homeless and Missing Network contacts are Sherry Lang (617) 242-1436 and Joan Wardwell, (978)283-9361 or at work (617)855-2771.

IV. HOSPITALIZATION: VOLUNTARY OR INVOLUNTARY
As the number of state hospitals has decreased, the current trend is to send patients to general or psychiatric hospitals for acute care. If the ill person presents a severe danger to him or herself or to others, a locked ward will be needed. A private hospital may be used, but not all private mental hospital units have locked wards. State mental hospitals usually have locked wards. Another reason for requiring care in a state hospital may be financial: private hospitals usually keep the patient for a limited stay, depending on health insurance coverage. At the end of this time, the ill person may have to be transferred to a state psychiatric facility or discharged.


While hospitalized in a safe environment, the mentally ill person will be observed and diagnosed; proper medication will be determined (in part by trial and error) and therapy offered individually, in groups or with the family. When the patient is discharged, the family will be an important therapeutic element. Therefore, the family will need to prepare by keeping close contact with the psychiatrists, social workers, support groups and the case manager, in order to learn as much as possible about the medication and the necessary home therapy environment. If it is determined that the family may not be able to deal with the situation, then the discharge may be to a halfway house or group residence, rather than to the family home. The family can benefit during this whole process by connecting with the support groups through the hospital or through an AMI affiliate.

V. LEGAL CONSIDERATIONS
Massachusetts General Law Chapter (MGL) 123 provides:
(1) for emergency involuntary hospitalization by a physician, police officer or district court ("pink slip") that my not exceed ten (10) days. 
(2) State law requires that, once admitted, the patient must be offered the opportunity to apply for voluntary admission. However, people suffering a mental illness crisis frequently suffer from impaired reasoning ability, and may not be convinced of the need for hospitalization. 
(3)If the patient then refuses, he or she must be discharged within ten days of admission unless the superintendent of the facility applies for commitment of the patient with the local district court ("Section 7" proceeding), in which case the patient may be detained at the facility until the court hearing or in which case the patient may be detained at the facility until the court hearing or up to six months, with resubmission possible for another year. 
(4) In order to treat an uncooperative patient, a "Rogers Guardianship," strictly limited to medication, may be a necessary step.
The rights of in-patients and out-patients of mental health facilities to participate in decisions regarding medications are protected by Massachusetts law. Patients have rights to informed consent for all forms of treatment, including medications.

In order to exercise informed consent, patients must be told and have the capacity to adequately understand
(1) the nature and extent of their illness: 
(2)what medications are prescribed and why; 
(3) what possible benefits might result from the medication and (4) potential risks of the medication, both general and specific to each patient's condition.

Forcible medication may be used only in emergency situations, and must comply with applicable DMH regulations. "Rogers Guardianship" with authority to order anti-psychotic medications may be petitioned for in Probate Court only when a doctor determines that a patient is not competent to make treatment decisions. Patients and their families may need legal assistance in any proceedings involving the rights of patients. According to MGL Chapter 201 a mentally ill individual who objects may not be committed or admitted to a mental health facility without proof that the person is mentally ill; that the failure to retain the person in a facility would create a likelihood of serious harm by reason of mental illness: and that there is no less restrictive alternative to commitment of admission.


The Massachusetts Department of Mental Health has defined mental illness for the purpose of involuntary commitment as follows: "a substantial disorder of thought, mood, perception, orientation, or memory which grossly impairs judgment, behavior, capacity to recognize reality or ability to meet the ordinary demands of life, but shall not include alcoholism as defined in MGL Chapter 123, Section 35."


The fact of mental illness must be determined by a judge. Doctors certifications or statements must answer the legal requirement of "substantial impairment" which "grossly impairs" functioning, in addition to fitting the standards of definition commonly used by physicians found in Diagnostic and Statistical Manual of Mental Disorders, Third Edition revised, commonly known as DSM III-R. After May 1994, look for DSM IV-R, the fourth edition. "Serious harm" can include a mentally ill person's threats to himself or herself or others or that impairment of the individual's judgment is such that his or her existence in the community would be a danger.


Although guardianship is a separate issue, involuntary admission or commitment involves a petition for either temporary or permanent guardianship with authority to commit, which may be petitioned for simultaneously. Any guardianship proceeding which includes the issue of admission or commitment requires at minimum 

(1)proper notice; 
(2) appointment of counsel for indigent persons; 
(3) a hearing; and 
(4)the presence of the proposed ward, except for extraordinary circumstance.


Preference (if obtainable) of the person who is mentally ill and his or her "best interests "are seriously to be considered by the judge. The District Court Judge's decision maybe reviewed by the Appellate Division of the District Courts. Any patient confined in a state hospital or DMH-approved facility may make written application to the Superior Court to determine whether he or she is being lawfully detained. The above discussion refers only to the medical considerations.


VI.  MEDICATIONS


Medications can be very useful in helping people who are mentally ill to think more clearly and gain control of their thoughts and actions. Words such as "psychotropic" or "psychoactive" (affecting mood, thought, emotions, and behavior) are generally used more or less interchangeably. They refer to certain drugs prescribed by a licensed physician, preferably a psychiatrist. The1992 MGL Chapter 10 (effective January 1993) extended prescription writing power to nurse practitioners and psychiatric nurse mental health clinical specialists, provided the nurses' prescriptions include the name of a physician with whom the nurse has signed an approved guideline agreement.


The effectiveness of a particular medication may help determine a doctor's diagnosis of a patient's mental illness. Each person reacts differently to a medication or combination of medications. Dosages should be individually tailored and may need to be adjusted from time to time. Most drugs may take several weeks to become fully effective.


All psychotropic medications have side effects and may cause risks; sometimes a stay in the hospital, with thorough monitoring, may be necessary until stabilization is achieved. Side effects may be temporary, continual or appear only after long-term use.
Dosages should be carefully checked and adjusted or fine-tuned to be most effective and yet minimize side-effects. 

Anti-seizure medications, such as Depakote (evaporate) or Tegretol (carbamazephine) may be added to increase the effectiveness of anti-psychotic drugs, helping to prevent disruptive or disturbing thoughts, hallucinations or delusions and antisocial behaviors. They often enable an ill person to function and be receptive to therapy or other psychoactive drugs. The patient or a family member should keep records of medications taken, dosages, and dates begun or terminated. Each drug has both a trade or commercial name and a generic or chemical name. The former is usually written with an initial capital letter.


The ability of people who are mentally ill to handle their "meds" should be weighed and watched by family, friends and clinicians.

 The use of alcohol could seriously impair a patient's rational use of medication. 

If the person stops taking his or her medications or overdoses, this should be noticed and reported to the physician promptly. 

Quick action may be required to avert a crisis or deal with adverse reactions or regression in the absence or medications. 

Some mentally ill people in the community may need extra help or stronger measures to make sure they take their medications properly. People with mental illness can devise clever ways to fake taking their medications. Furthermore, "life style" agents such as caffeine or nicotine can interfere with desired effects.


NOTE: Medications cannot do it all! The unfortunate human beings suffering from mental illness continue to need respect, support and love of friends and family, who can also help and encourage optimal use of medications. In order to best fulfill their helping role, families should try to maintain contact with therapists or social workers, in hospital as well as community settings. Do not be afraid to ask questions about medications and discuss what you have read in books, and other publications. Do not be discouraged. If medications do not seem to be helping, new drugs and new uses for existing ones are continually being tested and reported. Better treatments are on the way!


Below are outlined the main groups of drugs now used.


1. Antipsychotics or narcoleptics. 

These are drugs or medications used to treat psychotic symptoms by acting on transmission of nerve impulses through synapses in the brain. They include:


Clozaril (clozapine) Haldol (haloperidol)
Loxitane (loxapine) Mellaril (thioridazine)
Moban (molindone) Navane (thiothixene)
Prolixin (fluphenazine) Risperdal (risperidone)
Stelazine (trifluoperazine) Thorazine (chlorpromazine)
Trilafon (perphenazine)


This group of drugs is used to counteract psychotic thoughts, perceptions and behavior. Formerly called "major tranquilizers" (amisnomer), the major purpose of these drugs is to help stop delusions, hallucinations and catatonic symptoms. Most are ingested as pills or capsules. When tolerance and effectiveness have been clearly established, a few of the drugs may be injected, providing lasting avoidance-proof dosage. Side-effects and reactions can be flu-like illnesses or autonomic reactions such as drop in blood pressure, dry mouth, blurred vision, constipation or urinary difficulty. Parkinson-like symptoms, restlessness or rocking symptoms sometimes can be counteracted by drugs such as Cogentin or Artane.


Tardive dyskinesia is a side-effect sometimes occurring after long-term use of anti-psychotic drugs. Characteristics are involuntary movements such as tongue rolling, chewing movements, grimacing or frowning. Early signs should be reported to the physician promptly. A change or discontinuation of the drug or drugs causing the effect may reduce or eliminate the symptoms.
A recent addition to this group is clozapine (trade name Clozaril). This drug offers great hope to those who have not responded well to previously available antipsychotic. Unlike other antipsychotics, clozapine almost never causes acute neurological side-effects or tardive dyskinesia. Clozapine has often relieved symptoms of existing tardive dyskinesia, previously thought to be irreversible.


The drawbacks of clozapine are two-fold: high cost and, for about two percent of recipients, a potentially dangerous drop in the white blood cell count called agranulocytosis. About half of the high cost of about $9,000 per year per patient is due to the required weekly blood testing to detect this difficulty before it becomes acute. Sometimes other drugs may be used along with clozapine, but any medication that might also cause agranulocytosis, such as Tegretol, should not be added. Clozapine is now available to Massachusetts Medicaid recipients. Any individual for whom clozapine has been advised but is having difficulty obtaining the drug, should call the Clozaril hotline 1-800-448-5938 or Sandoz in NewJersey at 1-800-631-8184 Extension 7094 (Philip A. Spurr) or (201) 503-7094 for information and assistance.


Risperidone is the newest drug to become available, and it does not present the danger of agranulocytosis. Therefore, frequent blood testing is not required.


2. Mood Stabilizing and Antidepressant Drugs


Lithium carbonate is the unique and powerful mood stabilizer, reducing both mania (high flying mood characterized by super ambition, rapid speech, wild buying sprees, excessive activity, disproportionate euphoria and exaggerated behaviors) and depression, and it can be taken safely with little sedation or other effects on awareness or mental functioning. Many individuals have taken lithium long-term. Some people who suffer only mild and rare mood disorder may be able to discontinue lithium treatment safely. Only experience can tell.


With properly adjusted dosage and use, lithium is both safe and effective. Lithium poisoning or intoxication from overdose can appear as confusion, loss of appetite, vomiting and diarrhea, fatigue, weakness, slurred speech, muscle twitching and severe shakiness. Lithium blood levels should be checked as frequently as necessary to watch for excessive retention of lithium, especially for people taking diuretics (medications to reduce fluid retention through excretion, frequently prescribed to reduce high blood pressure). Lithium may be prescribed along with other drugs such as antipsychotic or antiseizure drugs such as Tegretol (carbamazepine) orDepakene/Depakote (forms of valproic acid). Among possible side effects of lithium are acne, gastrointestinal symptoms, hand tremor, thirst, frequent urination and gain of weight. If these become severe, the level of lithium in the blood should be checked.


Along with supportive counseling, several types of antidepressants, all of them requiring about three to four weeks to become fully effective, are prescribed for clinical or severe depression:


Tricyclic antidepressants include:


Elavil (amitriptyline) Norpramin (desipramine)
Pamelor (nortiptyline) Sinequan (doxepin)
Tofranil (imipramine) Vivactil (protriptyline).
Side effects may include dry mouth, blurred vision,sweating, dizziness, constipation, difficulty urinating, rapid pulse or irregular heart rhythms, tremor, and weight gain. These problems should be reported promptly.