National Alliance on Mental Illness
If you are reading this handbook, someone in your family probably has been diagnosed with severe mental illness and your family members may be suffering through some hard times. This handbook has been written by members of the National Alliance for the Mentally Ill of Massachusetts (NAMI- Mass) and (NAMI – Virginia) who have
experienced unnerving brushes with brain disorders and can empathize strongly with your feelings and uncertainties. We have published this guide to help your family and others cope and gain confidence and competence in your many perplexing roles: active management, quiet and loving support, steadfastness throughout the healing process, and advocacy. By helping families, we also hope to help persons with mental illness.
Each diagnosed mentally ill person will differ from every other ill person, even those sharing the same diagnosis. Each mentally ill person will follow a different path on the road to recovery. The timing and intensity of episodes will vary, as will the quality of advocacy, professional support, and mental health services.
Predicting how a mental illness will develop is difficult. Family member’s roles in helping the mentally ill person
may not be significant at first, but over time they may become quite influential and a steadying influence in a treatment world that is constantly changing.
Who could have predicted that many large institutions for the mentally ill would disappear due to dramatically improved and continually improving medications? We have great hope. Nevertheless, progress toward recovery may be painfully slow, with awakenings, setbacks, surprises, and disappointments. There may be inappropriate behaviors, substance abuse, or rash or illegal acts as a response to inner personal tortures. As families learn to support and advocate, there may be appropriate and adequate treatment that leads the way to recovery.
We, the families of NAMI Mass and Virginia, wish you and your loved ones well on your journey and stand ready to help in anyway we can.
WHAT IS NAMI?
NAMI is a grassroots organization of individuals with brain disorders and their family members whose mission is to eradicate brain disorders and improve the quality of life of persons of all ages who are affected by them.
The primary functions of NAMI are support, education, and advocacy for consumers and their families; for research and services; and for the education of all professionals, providers, and the general public. An individual with a brain disorder is sometimes referred to as a consumer. When speaking of NAMI members in general, we speak of family and that includes the consumer as a family member. We speak of consumer when it is necessary to make the distinction.
NAMI promotes the prevailing scientific judgment that "severe mental illnesses" are brain disorders, which at the present time are neither preventable nor curable, but are treatable and manageable with combinations of medication, supportive counseling, and community support services, including appropriate education and vocational training. The causes of brain disorders are complex, and they are not understood thoroughly. There is a genetic component to some brain disorders. Although stress or drug and alcohol abuse can precipitate or aggravate episodes of an illness, they are not primary causes. NAMI's roots grew from the need of people for knowledge, understanding, sharing of grief, relief of guilt, mutual support, and mutual love. NAMI's membership is likely to be concentrated in families and consumers needing and seeking this same solace. Family means consumers and their parents, siblings, adult children, spouses, and other involved relatives.
While primary peer support is concentrated in local affiliates and conventions, all components of NAMI declare:
Together we can give each other strong support;
The illness is treatable;
You can survive as an intact family;
It's not anyone's fault;
You don't need to explain anything– we already know.
With dedication and unity, we have enormous strength through which we can accomplish constructive change.
WHAT IS MENTAL ILLNESS?
Mental illness is a term used for a group of disorders causing severe disturbances in thinking, feeling, and relating. They result in substantially diminished capacity for coping with the ordinary demands of life. Mental illnesses can affect persons of any age: children, adolescents, adults, and the elderly, and they can occur in any family. Several million people in the country suffer from a serious long term mental illness. The cost to society is high due to lost productivity and treatment expense. Patients with mental illness occupy more hospital beds than do persons with any other illness. Those with mental illnesses are usually of normal intelligence, although they may have difficulty performing at a normal level due to their illness.
Schizophrenia is one of the most serious and disabling of the mental illnesses. It affects approximately one person in one hundred. The disease affects men and women about equally. Its onset is usually in the late teens or early twenties. People with schizophrenia usually have several of the following symptoms
Disconnected and confused language
Poor reasoning, memory, and judgment
High levels of anxiety
Eating and sleeping disorders
Hallucinations-hearing and seeing things that exist only in the mind of the patient
Delusions – persistent false beliefs about something, e.g.
others are controlling their thoughts
Deterioration of appearance and personal hygiene Loss of motivation and poor concentration
Tendencies to withdraw from others
Unfortunately there are many myths about schizophrenia. People with schizophrenia do not have a "split personality" and are not prone to criminal violence. Their illness is not caused by bad parenting and it is not evidence of weakness of character. Their illness is due to biochemical disturbance of the brain.
Depressive illnesses are the most common of psychiatric disorders. They are generally less persistently disabling than schizophrenia. The primary disturbance in these disorders is that of affect or mood. These mood disorders may be manic depression (bipolar) in which the person swings between extreme high and low moods, or they may be uni-polar in which the person suffers from persistent severe depression. About six percent of the population suffers from an affective disorder –a major cause of suicide.
Persons diagnosed as having bipolar illness usually have several of the following characteristics during a period of mania:
Boundless energy, enthusiasm, and need for activity Decreased need for sleep
Grandiose ideas and poor judgment
Rapid, loud, disorganized speech
Short temper and argumentativeness
Impulsive and erratic behavior
Possible delusional thinking
Rapid switch to severe depression
Persons having depression (or depressive phase of a bipolar disorder) may have four or five of the following characteristics for two weeks or longer:
Difficulty in sleeping
Loss of appetite
Feelings of worthlessness, guilt and hopelessness Feelings of despondence or sadness
Inability to concentrate
Possible psychotic symptoms
Suicidal thoughts and even actions
Other disabling mental illnesses include Asperser’s Syndrome, Attention-deficit/hyperactivity disorder, Borderline Personality Disorder, Bulimia Nervosa, Obsessive-compulsive Disorder, Panic disorders, Personality disorders, Post-traumatic Stress Disorder, Schizoaffective Disorder, and Tourette’s Syndrome.
These and other illnesses are described in detail on the national NAMI website: www.nami.org. Type the name of the illness you want to know more about in the search box on NAMI’s home page or click on "Inform Yourself" in the upper left hand corner, then choose "About Mental Illness." There is a Fact Sheet about each illness with symptoms, causes, medications, treatments, and links to other sites.
CAUSES OF MENTAL ILLNESS
The causes of biologically based brain diseases are not well understood, although it is believed that the functioning of the brain's neurotransmitters is involved. Many factors may contribute to this disturbed functioning. Heredity may be a
factor in mental illness as it is in diabetes and cancer. Stress may contribute to the onset of mental illness in a vulnerable person. Recreational drugs may also contribute to onset, but are unlikely to be the single cause. Family interaction and early child training were once thought to cause mental illness; however, research does not support that theory any longer.
Can Mental Illness be Prevented? Cured?
Since the causes of long term mental illnesses are not known, there is no effective prevention at this time. More research is needed to determine causes and strategies of prevention. Likewise, there are no cures for mental illnesses. However, treatments can substantially improve the functioning of persons with these disorders.
What Are the Treatments for Mental Illness?
An expanding range of medications markedly reduce symptoms for many people. Electroconvulsive Therapy (ECT) can be a safe and effective treatment for some. Supportive counseling, self-help support groups and community rehabilitation programs promote recovery and build self-confidence. Housing and employment services enable some people to develop independent living skills, hold a job, and achieve a fulfilling life. Others may need support for most or all of their lives. Helping them achieve a sense of dignity with the highest degree of independence, productivity, and satisfaction with life is the goal.
WARNING SIGNS OF POSSIBLE MENTAL
Sitting and doing nothing; rocking or pacing Friendlessness; abnormal self-centeredness Dropping out of activities; decline in academic/athletic performance
Loss of interest in once pleasurable activities Frequent or sustained crying for no apparent reason Expressions of hopelessness; extreme pessimism about everything
Excessive fatigue or sleepiness, or persistent insomnia Inability to concentrate or cope with minor problems Irrational statements and/or peculiar use of words Excessive fears or suspicions
Bursts of emotion unrelated or out or proportion to the situation
Hostility from a person formerly passive and compliant Indifference in important situations
Apparent inability to cry, or to express joy Inappropriate laughter
Unexplained severe anxiety or fearfulness
Changes in eating habits; gorging, purging, starving Hyperactivity or inactivity or both
Deterioration in personal hygiene or grooming Extreme washing, checking, or counting
Noticeable or rapid weight gain or loss
Hair pulling or other forms of self-mutilation Unusual involvement in automobile accidents Drug or alcohol abuse
Forgetfulness or loss of valuable possessions
Frequent moves or hitchhiking trips; running away Bizarre behavior; skipping, staring, or strange posturing Extensive, sustained hoarding
Excessive sensitivity to noises, light, clothing, or smells Obsession with and collection of guns, knives, explosives, etc.
Violence directed towards objects, animals, others, or self Fever or delirium
Reports of hearing voices or seeing sights unknown to others
Beliefs that are obviously contrary to fact
Delusions of grandeur or persecution (paranoia) Please note: If a person starts talking about suicide, it’s important to call a doctor or crisis team “immediately”.
TREATMENT AND RESOURCES
Early recognition is crucial. 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 erupts suddenly, precipitating a crisis. When a mental illness is suspected and a severe crisis in behavior occurs, family members are often at a loss as 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