“Mental illness,” neuropsychologist R. Walter Heinrichs concluded, “is among us and diminishes to the extent that we care for those who endure it.”
Unfortunately, far too many people have to endure one of the most serious mental illnesses: schizophrenia. The National Institute of Mental Health estimates that today in the United States 2.2 million individuals suffer from this brain disease. Other estimates place the figure above 3 million.
It appears in approximately one of every 100 people in the world today. The disease takes a shocking emotional and financial toll on those affected by it. The image of the homeless, untreated person with schizophrenia is too often accurate, but it does not reflect the full impact of this disease. While some individuals with psychiatric illnesses are homeless and have no caregivers, many live independently and have committed caregivers and adequate support. Because the disease tends to strike in late adolescence or early adulthood, millions of patients have friends and family members — parents, grandparents, or siblings — who support them. A diagnosis of schizophrenia presents unwanted and unexpected challenges for everyone who cares for a friend or relative living with the disease.
Because schizophrenia strikes just as people are planning and training for careers, it takes an additional toll on individuals and society. Lack of work experience compounds their problems as they struggle to recover the basic social skills necessary to live a satisfying life.
In the United States, the disease removes an estimated $32.5 billion from the economy each year. While the total financial cost has been estimated in excess of $100 billion, the cost in terms of human suffering for patients and family is incalculable. Without adequate care, lives are disrupted, careers are cut short, and people are lost to each other.
To the uninformed, schizophrenia brings to mind a raving, dangerous lunatic or someone with a split personality. In reality, some people with the disease experience few psychotic episodes and are lucid and rational for much of their lives. Between 20 percent and 35 percent recover — some completely. While this can be a devastating disease for some, it is effectively treatable for most. There are many success stories.
Yet by some estimates, the severe symptoms and the persistent nature of the disorder mean that up to 80 percent of people with schizophrenia may experience varying levels of disability, possibly for their entire lives. Sadly, the percentage of patients with schizophrenia who commit suicide is 10 percent or higher.
You, as a caregiver, may have to assume responsibilities you never imagined or wanted as you help your loved one get treatment and learn skills that will help her regain control of her life. With your help, and with effort by the patient, the illness may be brought under control.
The purpose of this book is to help you educate yourself to find, get, and give the best possible care. For most patients, a combination of counseling or therapy, a social support network, and the short-or long-term use of antipsychotic medications offers the best option for lessening the impact of this most serious of psychiatric disorders. Arm yourself with knowledge so you can begin to counter the effects of this disease. With it, you may be able to reduce the frequency of hospitalizations and possibly eliminate them. You can gain a measure of control by advocating for better treatment, social services, and more money for research.
If one observation, suggestion, opinion, or reference in this book helps you move toward achieving any of those goals, it will have been worth the effort of writing it.