The following are questions commonly posted on our discussion boards, along with answers and advice from responding members. In many cases, member answers have been expanded on from other sources, and relevant links have been addedfor more information. These answers are meant only as a helpful guide and a resource for further information; each individual situation is unique and may need a tailored solution. Your treating psychiatrist is always a good person to ask when you have specific questions pertaining to your own case.

If you don't find what you're looking for here, please visit the Schizophrenia Main Discussion Board (see the righthand menu column on the Schizophrenia.com homepage ) and post your question. Our members are usually very generous with their advice and support.

Index of Questions:

Diagnosis and Treatment:
How is schizophrenia diagnosed? How can I tell if someone has schizophrenia?
What to do if you suspect you or a loved one may have a psychiatric disorder
What if my family member refuses to see a doctor?
What to do after recieving a diagnosis - how you can help
What is the prognosis? How likely is it that a person with schizophrenia will ever have a "normal" life?
How is schizophrenia treated?
What to expect after going on medication
What if I can't afford prescription medications?
Working with the psychiatrist
Hospitalization - when and why is it necessary?
    The hospital experience    
    Choosing a facility
      Concerns of families
My son (or daughter) is over the legal age of 18 and the doctors won't share with me information on his treatment (due to current laws). What can I do to help my son/daughter, or sister/brother?

How can I help my loved one get the best care possible?
Why won't my loved one stick to their treatment?

Coping With Schizophrenia:
How do I understand and deal with the symptoms? (Delusions; Voices/Hallucinations; Anger/Irritability/Mood swings; Violence and Abuse; Paranoia; Suicidal Thoughts and Tendencies; Apathy/Lack of Motivation; Emotional Flatness and Social Withdrawal)
How Can I Help Someone Who's Depressed? Why Is Depression So Common Among Schizophrenia Patients?
     Possible causes of depression
      How to cope and where to get help
What are the chances of relapse? How can you plan for a relapse situation?
How do I explain the illness to family, close friends, and others?

Living With a Severe Mental Illness - Practical Matters:
Planning for the future - issues for caregivers and resources to help
Federal Aid and Funding Programs
Health Insurance and Aid
Housing concerns - if your loved one can't live at home
Job and School Issues - can a person with schizophrenia go back to work?
How can I help a family member who's been arrested?

How is schizophrenia diagnosed? How can I tell if someone has schizophrenia?

There is currently no physical or lab test that can absolutely diagnose schizophrenia - a psychiatrist usually comes to the diagnosis based on clinical symptoms. What physical testing can do is rule out a lot of other conditions (seizure disorders, metabolic disorders, thyroid disfunction, brain tumor, street drug use, etc) that sometimes have similar symptoms.

Current research is evaluating possible physical diagnostic tests (such as a blood test for schizophrenia, special IQ tests for identifying schizophrenia, eye-tracking, brain imaging, 'smell tests', etc), but these are still in trial stages at only a few universities and companies and are not yet widely used. I t will likely be a few years before these on the market, and adopted by hospitals, etc.

People diagnosed with schizophrenia usually experience a combination of positive and negative symptoms. These may include (but are not limited to) racing or uncontrollable thoughts, uncontrollable mannerisms, talking to yourself, paranoia, hallucinations or delusions, sensing that people are following or talking to you, insomnia. The Symptoms and Diagnosis section of this website may help you identify some of your own symptoms, or the symptoms of someone close to you; however, only a psychiatrist can make a diagnosis and start a treatment program. If the symptoms are bothersome, debilitating, or harmful, please make an appointment with your doctor and/or a psychiatrist.

The best places for schizophrenia diagnosis are the new early psychosis and schizophrenia diagnosis and treatment centers that are beginning to be launched worldwide. See our Worldwide list of early psychosis/schizophrenia diagnosis and treatment clinics and contact them if you, or someone you know, may be developing schizophrenia. They have the most intensive testing process and can help get early treatment (which improves changes of a good outcome).

What to do if you suspect you or a loved one may have a psychiatric disorder:

The best places for schizophrenia diagnosis are the new early psychosis and schizophrenia diagnosis and treatment centers that are being offered worldwide. See our Worldwide list of early psychosis/schizophrenia diagnosis and treatment clinics and contact the center closest to you, if you or someone you know, may be developing schizophrenia. They have the most comprehensive psychiatric evaluation process and can help get early treatment (which improves chances of a good outcome).

If you are not close to these early treatment centers or university-associated psychiatric hospitals (click for list) , then the next thing you might try is make an appointment with a qualified psychiatrist with experience with psychosis and schizophrenia. See our section on Finding and Working with a Psychiatrist (click here) for more information on how to find a good one.

Another approach is to start with your primary care physician, and get a full check-up and evaluation to rule out some other common neurological disorders. Some tests that you might expect include an EEG, MRI, or PET scan to rule out seizure disorders, and some lab tests to determine pituitary and thyroid function. The doctor will listen to what you have to say, hear about what difficulties you're having, and recommend a course of action. This may be a referral to a psychiatrist. If you are having trouble finding a good psychiatrist, again see "Finding and working with the psychiatrist" section of this FAQ guide for ideas.

It's a good idea to prepare materials and questions to take with you to your appointments. Keep a journal of symptoms, odd or troubling behaviors, psychotic episodes, and anything else that you want your doctor to know about. Make a list of questions that you want your doctor to answer. "Choosing the Right Mental Health Therapist" (information provided by the U.S. organization SAMHSA) has an easy-to-follow procedure list for appointments, as well as some suggestions for questions you might ask.

What if my family member refuses to see a doctor?

Many people with schizophrenia are literally unable to see that there's anything abnormal about them (this is commonly called 'lack of insight' or 'poor insight'). It's almost a hallmark characteristic of the disorder, like memory loss is for Alzheimer's disease. There are several physical explanations for impaired awareness - the important thing to realize is that your relative is most likely not being purposely obstinate, difficult, or defensive when they deny their symptoms and refuse help.

This, however, leaves you as a concerned family member in an awkward and extremely frustrating position. Current U.S. laws make it very difficult to get help for someone who actively refuses it - someone may be actively psychotic and in desperate straits, but still not considered a serious-enough threat to themselves or others to merit involuntary hospitalization. This is a constant source of trouble for families dealing with mental illness. Visit the Treatment Advocacy Center website to look up state laws on mental illness

The best course of action depends on the type and severity of symptoms. If the symptoms are worrisome but not absolutely harmful yet, try locating a mental health professional or a social worker who is familiar with dealing with psychiatric disorders. They can discuss your relative's behavior with you, and brainstorm the best way to get him/her help. Options will vary from state to state, based on state law. In some areas, you can call a crisis unit (look in the telephone book or call the hospital) that will send an evaluation team, and maybe instigate a 72 hour psych hold. Contact a local NAMI chapter or call their helpline (1-800-950-NAMI) to look up resources in your area.

Family members at schizophrenia.com have firsthand experience of what has worked for them, and what you might do to help your situation. See their suggestions and advice on the schizophrenia.com website.

When patients are provided with full and accurate information for understanding their illness and its treatment, sometimes their insight may improve. You as a caregiver can play an important role by providing this information, and presenting it in as optimistically as possible. See 'How Caregivers Can Help a Relative Accept Their Illness'.

It can be very frightening to go through what your loved one is experiencing, and a lot of people are hesitant to seek treatment because they are afraid of being hospitalized. If you can, reassure your loved one that if treatment is started eary enough, hospitalization is probably not necessary. Emphasize that medication can make a huge difference in the way they are feeling.

If the symptoms are very severe, your best option is to persuade a hospital ER or the police department that your loved one is in grave danger of harming him/herself or others. Although this might be absolutely clear to you and other family members, the current strictness of legislation places a very narrow definition on what counts as "harm to self or others." Try and become familiar with what the criteria is ahead of time, so that you can choose the right words to describe the situation. If the hospital agrees that an involunatry admittance is necessary, they will begin a three-day (or maybe less, depending on hospital policy) psych hold. Without a court order, they are not permitted to hold anyone involuntarily for longer. Talk to the treating physicians about how to start court proceedings, or see your options for 'Assisted Treatment' (this can include benevolent coersion, conservatorship or guardianship, conditional release, outpaitent commitment, or an extended voluntary commitment).

An Advanced Psychiatric Directive is also an option to discuss during times when the ill person is in control and in a reasonable frame of mind. This legal document allows the person with the illness to dictate what actions should be taken on their behalf (including appointing another person to make treatment decisions) if they should become unable to make decisions for their own well-being. Bear in mind that Advance Directives are not appropriate for all, or maybe even the majority, of people with schizophrenia. In order for a Directive to be an empowering rather than a coercive tool, the person who prepares the document for themselves must have the skills and the social support to make beneficial decisions. For more information, and for downloadable documents to help prepare an AD, see the Advanced Psychiatric Directives section of the Bazelon Mental Health Law Website.

If the person has EVER violently threatened or actively harmed you, another person, or themselves, call 911 or an emergency room immediately. Violence against family members of the mentally ill is a reality, and you need to protect yourself and everyone by getting your loved one committed.

What to do after recieving a diagnosis - how you can help:

Whatever diagnosis is given, whether it is schizophrenia or something else, know that there are many many patients and families out there with the same questions, concerns, and problems that you face. There is a wealth of information and support available to you. Here are some things to try first:

1. Educate yourself and other family members as much as you can about the illness, the treatments, and long-term prospects. Greater understanding can help alleviate fears and can make communication, treatment programs, and day-to-day coping much easier. See Recommended Books for a list of helpful, reviewed reading material. There is also a wealth of online information to read here at schizophrenia.com (where we have over 12,000 pages of information on schizophrenia) and other websites. Other web sites include that have some good information include:

NAMI - National Alliance for the Mentally Ill
MentalHealth.com - free encyclopedia of mental health information created by Canadian psychiatrist Dr. Phillip Long.
British Columbia Schizophrenia Society - excellent resources for family members
National Institute of Mental Health - concise overview of different disorders, diagnoses, treatments, options, and resoureces
Rethink - UK mental illness charity - wealth of information for patients and family on disorders, coping, practical matters, etc.
Check out our full list of web-based resources, including organizations and online reading material

Also check out our online PDF reference library, with links to the most helpful pdf documents on mental illness and related issues. Ideal for printing for your own reference files, or passing out to family/friends/teachers/employers.

2. Watch and Listen to our archives of internet-based audio and video files on schizophrenia, mental illness, and related issues. Good files to start with include:

--Schizophrenia Introduction and Overview - An Educational Video (Schizophrenia Society of Canada)
--Schizophrenia - Second Chances - public radio program covers the personal experiences of schizophrenia, how to help people who don't understand they have schizophrenia, and how dramatic advances in schizophrenia research are providing new hope for people suffering from the disease.
--Schizophrenia: Treatment, Access, Hope for the Future? - public radio progam invites a panel of experts to discuss current research, treatment options, and impact on family members.

3. Build a support network as soon as you can of other families with similar experiences. The discussion boards at schizophrenia.com are a good place to start, but a local support group can be a long term source of relief and resource for you during difficult times. The National Alliance for the Mentally Ill has local chapters in every U.S. state - visit their website and find one near you. Also, consider taking a Family-to-Family class (also through NAMI), a free 12-week education course designed for (and taught by) family caregivers of people with severe mental illness. This class is highly recommended by many members of schizophrenia.com. See the Family-to-Family website for more program information and class schedules.

4. Find the mental health support resources in your area. Search a state-by-state database of available mental health services in the U.S., or try www.rethink.org for services in the U.K.

What is the prognosis? How likely is it that a person with schizophrenia will ever have a "normal" life?

With treatment, rehabilitation therapy, and lots of social support and understanding, many schizophrenia patients can recover to the point where their symptoms are more or less completely controlled. Many are living independently, have families and jobs, and lead happy lives. See the success stories of some such patients on the schizophrenia.com website. One schizophrenia.com member had the following to say about living with schizophrenia:

"Those early years when you are first diagnosed are very hard. Many people are very surprised by the illness and don't know what to do. Many refuse medicines. But as time goes on, most people learn what works. They find their best medication. They find a way to live that is satisfying and doesn't stress them too much. They learn not to drink too much alcohol, and to take care of themselves. The find a good doctor, and often others help them, such as friends, priest, or counselor. People make a decent life for themselves. They find love, ,they find work....it gets better. The key is to stick with the medication, and to never give up."

However, although research has made great strides in both understanding and treating the disorder, there is still much that we don't know. We still don't know why some patients deteriorate faster than others, why some don't respond to medication as well, why some make good recoveries while others are unable to. It's important to realize that while there are lots of things that the patient and the family can do to help the prognosis, schizophrenia is a disease that sometimes takes its own unexpected course. Setbacks are to be expected, and are not signs of failure on anyone's part. It's important to set your own expectations and goals (whether you are the person suffering from schizophrenia or a caregiver) to an achievable level, and appreciate accomplishments for what they are rather than what they're not. One schizophrenia.com member pointed out that everyone's "climbing the ladder" of life, but someone who starts from the bottom and manages to climb up halfway has achieved a lot more than someone who starts at halfway but only climbs a rung or two.

There are factors in the course of the disease that can, to a certain degree, help predict the various outcomes. You can improve the chances for a good prognosis by knowing what the indicators for possible relapse are, working to get the best possible treatment as quickly as possible, and learning how to effectively self-manage a long-term mental illness. The mentalhealth.com website also has information on what family members can do to help ensure the best possible outcome.

For a good presentation on the prognosis for people who have schizophrenia, and an update on new treatments for schizophrenia see the Stanford University "New Treatments for Schizophrenia" presentation.

How is schizophrenia treated?

American Psychiatric Association's Guideline For The Treatment Of Patients With Schizophrenia states: "antipsychotic medications are indicated for nearly all acute psychotic episodes in patients with schizophrenia." In addition to antipsychotic medications, some patients also take anti-depressants or mood-stabilizers to help control related symptoms.

Medications work successfully in the majority of patients (approximately 70% of patients will improve, according to research - but we've also seen research that suggests the chances of any one drug working for a person may be only 50% so people frequently have to try more than one drug to partially or completely control the positive symptoms (hallucinations, delusions, paranoia, racing thoughts, etc). They are not as effective in controlling negative symptoms, and may cause side-effects of their own. See our Medications area for information on commonly prescribed antipsychotic medications - how they work, how effective they are, what side-effects they cause - as well as additional info on research studies and medications in clinical trials. See also New and Newer Mechanisms of Action for Antipsychotic Medications, an online UCLA grand rounds video presentation that explains (in some detail) what areas of the brain different drugs target, and what effects they have.

For a good presentation on the prognosis for people who have schizophrenia, and an update on new treatments for schizophrenia see the Stanford University "New Treatments for Schizophrenia" presentation.

Although an important element, medication is far from the only treatment used for schizophrenia patients. Many patients and their families choose supplemental therapies (these can include psychosocial or cognitive therapy, rehabilitation day programs, peer support groups, nutritional supplements, etc) to use in conjunction with their medications. In certain severe cases, some patients also respond to electroconvulsive therapy (which has been shown to be safe and effective) or transcranial magnetic stimulation (TMS).

In the case of therapy, some research has shown that psychotherapy and medication can be more effective than medication alone (however, the same study noted that psycotherapy alone was NOT a substitute for medication). The three main types of psychosocial therapy are: behavioral therapy (focuses on current behaviors) cognitive therapy (focuses on thoughts and thinking patterns) and interpersonal therapy (focuses on current relationships). For schizophrenia, cognitive-behavioral therapy has shown the most promise in conjunction with medication.

For some supplementary treatments options (as well as "alternative therapies" that have been disproved), see Other Treatments on the schizophrenia.com homepage.

For more information, see Treating Schizophrenia - What Are the Options? (ABC News webcast). ABC news host talks with a panel of experts about what treatments are out there and how successful they are.. Link to video file and transcript. (If you don't have it, Download Quicktime video player.)

What to expect after going on medication:

Medication can greatly decrease symptoms and help a person return to a functional level; however, every case is unique, and medications are not perfect. It will likely take a long, frustrating trial-and-error process before a treatment regimen is found that works best for the patient.

When a psychiatrist prescribes any medication, ask what symptoms it primarily treats, what the common side effects are, what dosage he/she is prescribing, and how long it will take to start working. Keep track of every medication (and at what dosage) you (or your loved one) is on, what side effects it causes, which symptoms get better and which get worse. A journal (the same journal where you write down symptoms and behaviors) is an excellent place to do this.

Don't be surprised if the doctor keeps switching medications, or adjusting dosages. They are not frivolously experimenting; trial-and-error is the only way to eventually find a combination that works. Medications are never a perfect fit: a prescription can work for awhile and then stop working, or one that you tried previously may work at some point in the future. You can help this process with feedback about the different medications (see paragraph above).

An antipsychotic medication can take weeks or even months to start working at full strength, so be patient and keep recording things in your journal. Medications are less likely to make any huge, noticeable changes in life; instead they should make things generally "easier." Once you find a medication that seems to work, the voices/hallucinations may gradually fade away and disappear - or they may not. Sometimes these voices quiet down to a point where they are not harmful or debilitating, and many people with schizophrenia make a decision at this point that living with these quieter voices in the background is preferable to going through the pain of more medication and more side-effects.

Some general things to be aware of:

Both the illness itself and many of the medications used to treat it can make a person feel overly tired or lethargic. You may need to sleep more than you think, and it may be unrealistic to try and dive head-on back into your normal activities. Recovering from schizophrenia is like recovering from any long-term illness. Plan small goals to ease yourself back into a routine that you enjoy, and don't expect too much of yourself at first in terms of socializing. Be aware if others are pushing you too hard to "get back out there" - give yourself the time and support you need.

What if I can't afford prescription medications?

Without a good health insurance plan, antipsychotic medications (particularly the newer ones) can be terribly expensive. However, you have some options even if you are currently unemployed or uninsured. Here are a few suggestions:

• Apply for Supplemental Security Income (SSI) or disability benefits, federal funds that are available for physically or mentally disabled persons who are unable to work. See Schizophrenia.com's Help with SSI page, or the Social Security Association website for more info on programs and how to apply.
• See if you qualify for Medicare (for elderly) or Medicaid (for low income persons) health coverage. Your doctor or a hospital social worker can advise you on your eligibility, and help you apply. See also "Living With Schizophrenia - Practical Matters" in this FAQ guide for a list of federal aid programs for disabled or low income persons.
• The older antipsychotics tend to be cheaper than the newer ones - discuss with your doctor the possibility of using a cheaper alternative. Be aware, though, that the older medications also may have significantly more side-effects, and are not as effective controlling negative symptoms
• Information on available low-cost medications, and what benefits are available to mentally ill or disabled persons, is available on the schizophrenia.com website

Finding and Working with the psychiatrist:

A good psychiatrist can and should be an ally in the continual process of treatment and recovery. They should be willing to work with you as an informed member of the treatment team and ideally they should be well-informed and experienced in treating schizophrenia and related disorders. Here are some suggestions to help you find a psychiatrist you can effectively work with:

• See 'Mental Health Professionals: Who They Are and How to Find One', an article provided by NAMI
• See the British Columbia Schizophrenia Society's list of Dos and Don'ts for dealing with mental health care professionals.
• Ask others in the medical profession (friends, relatives, your own physician, etc) who they would send their own family members to for similar problems.
• Contact your local support group in your state or country to get in touch with families dealing with the same situation, and ask them about good mental healthcare providers that they have used.
• DON'T be afraid to move on if you're unhappy with your current provider.

Hospitalization - when and why is it necessary?

At some point or another, most people with schizophrenia will likely have to be hospitalized for at least a short time. Hospitalization can be voluntary (requested by the patient themselves) or involuntary, meaning it is up to the discretion of the treating psychiatrist, emergency room staff, or a courtroom (see the criteria and procedures for involuntary hospitalization by U.S. state). At the point of hospitalization, a person may be in pretty bad shape - feeling sick, scared, out of control, and abandoned. Understandably, at the time it's not a pleasant experience for anyone involved. But it doesn't have to be something to fear.

Why might somebody need hospitalization, rather than outpatient care?

• patient needs to be in a protected environment to keep them from harming themselves or others.
• patient needs to be monitored by trained professionals for symptoms and medication reactions.
• patient needs a safe place where they can stabilize and concentrate on recovery.
• family needs a short respite to gather themselves and make long-term treatment plans.

What can you get with hospital treatment that you can't get as an outpatient?

• constant monitoring in a controlled setting, so medications can be adjusted more quickly and accurately. Hopefully, this means you start feeling better sooner.
• more time with a doctor and/or therapist, maybe every day. Trained staff members are always around to talk to about questions, concerns, or thoughts.
• group therapy, recreation programs, vocational/social rehab (programs will vary depending on the hospital)
• A safe place to gather yourself, get settled with medication, and stabilize so you can return to your own life as soon as possible.
• according to one schizophrenia.com member: "plenty of rest, free food, free laundry, you get to meet nice people, free recreation, [and] you get a chance to draw pictures and watch a show or two."

Many members of schizophrenia.com have written about their experiences in hospitals (either voluntary or involuntary) on the discussion boards. Most agree, at least in retrospect, that getting treated in the hospital was the best thing for their health and well-being at the time. Some of their thoughts are quoted below:

"It's nothing to be scared about. Try the meds they give you and work with the staff. They are there to help and want you to talk to them when you are having problems. The other patients on the ward will have different illnesses than just schizophrenia, like bi-polar, depression and drug addiction...Hopefully if you go you can get things straighten out."

"I found that I was at my worst the two times I was at the hospital. So I did not like being there at all. But it was a place where I was safe, a place where I couldn't hurt myself or wander off. The hospital is the place my healing started, and I find that it was not an enjoyable experience but a helpful one."

"[T]he better your attitude about being hospitalized and the more hope you have for yourself, the better you will do, I think. I had faith that the medicine would help me from the beginning, and it turned out to be true."

"[S]ometimes, as my pdocs have said over the years, we need a "safe place" and sometimes that is the hospital."

Once it has been determined that hospitalization is necessary, you may have a choice (depending on insurance, availability, and your psychiatrist's recommendations) of what hospital to go to. Psychiatric facilities include public hospitals (state, county, or community), university (teaching) hospitals, private psychiatric treatment centers, and VA hospitals. Dr. E. Fuller Torrey, in his book "Surviving Schizophrenia" (pp. 180-188)offers the following suggestions for evaluating psychiatric in-patient facilities:

• talk to your doctor, treating psychiatrist, hospital staff, and other families who are familiar with programs in the area; ask for their recommendations and reviews of various programs
• look for a Joint Commission on Accreditation of Health Care Organizations (JCAHO) accreditation. A JCAHO team, upon invitation by the hospital, surveys patient care and services, therapeutic environment, safety of the patient, and quality of staff and administration. The hospital may receive full 3-year accreditation, full accreditation with a contingency (meaning that a follow-up inspection may be warranted), or no accreditation. Bear in mind that accreditation is given to hospital as a whole, NOT to individual wards. Ask for JCAHO accreditation at the hospital administration office, or look for a certificate by the entryway or in the lobby.
• the quality of staff, first and foremost, should indicate the quality of the ward. Due to the staff, even individual wards in the same treament facility may vary in quality.
• do NOT assess quality by fees charged. Private facilities are not necessarily better than public ones. Again, evaulations of the staff at each location should guide you.

Hospitalization is no easy experience for friends or family members either. Especially if commitment was involuntary, family may be hesitant about visiting, unsure of how to react when their loved one returns home, and fearful that their loved one will never forgive them for making that hard choice. One schizophrenia.com member had the following thoughts about committing her child:

"In the early years, I would grieve myself so badly I would get physically sick. I felt so much guilt if I allowed myself the slightest amount of pleasure, so instead would stay in continuous grief mode. It consumed me day and night - all I could think of was, what was what my child going through at that very moment? What kind of a Mother could I be if I dared allow myself to read a book, go to a movie, etc. when my son was locked up...

This I tell you serves no purpose. You need to be kind to yourself right now. Enjoying a bubble bath, going window shopping, having a laugh, does not mean you do not care and are not concerned. Instead it enables you to focus on helping your child and keeping up your spirits so you can show them a positive attitude."

Keeping a positive attitude, even through the difficult experience of hospitalization, is something that many family members stressed as important. As one relative said, "It's so important to be cheery & positive when you visit them in hospital. I found it helped a lot if I just talked as if I EXPECTED him to be better soon." Some family members are unsure about visiting, not knowing what to say or if their loved one even wants to see them. Visiting might indeed be difficult until medications start working - the ill person is not feeling well, and may be angry, frightened, or even out-of-control. In retrospect, most people who were committed agree that they needed to be hospitalized at the time, and appreciate that someone was looking out for them. Even if your loved one refuses to see you, or is angry with you, showing your love and support by continuing to go is one of the best things you can do. It helps to get through to them, even subconsciously, that they have not been abandoned. Below are thoguhts on visiting from schizophrenia.com parents:

"He hated us for putting him in there.... until the meds kicked in. (He was never happy we did it, but never held a grudge that we did.) We went each evening after work all the way to the hospital to see if he would visit with us. The answer was always no, so we'd turn around and head for home. But we went anyway. The reason? Because we felt (and so did the psychiatrist we had then) that deep inside that pile of rage and paranoia was our son. And that deep down inside he needed to know that he was loved. So we went, were turned away, and did the same the next day or so, until the meds had kicked in and he wanted to see us."

Other things family members can do to make the hospital stay as easy as possible:

• Get to know the ward staff, so they know that someone is actively interested in the welfare of that particular patient. These are also the people who will ultimately be able to explain to you what is going on with your loved one, and help address your questions and concerns.
• Arrange for a tour of the facility, and become familiar with admissions procedure, daily schedules, and visiting hours and regulations.
• Ask about any rules regarding bringing a patient gifts, photographs, or food.
• Ask to be notified when your loved one is getting ready to be discharged.
• Learn about the treatment plan, and find out what your role in it can be.
• Talk with the staff before your loved one is discharged about how to continue care at home, what signs might signal a relapse or a mdeication reaction, and how to make the transition to living at home as smooth as possible for everyone.

The following online resources have more information about the logistics and experience of psychiatric hospitalization:

--involuntary commitment - another section of the FAQs, deals with procedures for commitment and common fears/concerns of loved ones making the decision.
--Let's Talk Facts about Psychiatric Hospitalization (APA publication).
--Psychiatric Inpatient Experiences - a personal voice on what psychiatric hospitalization is like, and advice to make it a more positive experience.
--a public radio show about mental hospitals (particularly Bellvue in New York)
--Psychiatric Hospitalization: What It's Like on the Inside (radio program)
--Returning Home - an online booklet for families about helping a loved one transition back into the home environment after spending time in a psychiatric facility.

My son/daughter or brother/sister is over the legal age of 18 and the doctors won't share with me information on his treatment (due to current laws). How can I make sure my son/daughter is getting the best possible treatment and the doctor is well informed?

While doctors and nurses "BY LAW" are not allowed to talk to you about the situation with your son/daughter or brother/sister if they are over the age of 18 (in most states). Many doctors and nurses are sympathetic to the challenges the family faces - but they have to follow the law or they could lose their jobs.

The doctors are, in most situations, required by Law to tell the patient if they talk with you, and generally cannot talk with you - but the tip here is that a lot of smarter and more compasionate doctors know of the challenges that families face and so "bend" the rules a bit. In a recent presentation by a psychiatry doctor at one of the top medical schools in the US said that what she would do is accept phone calls from family members and let them talk to the doctor (her) - and listen to the family member (for example to let the family member tell the doctor of what the behavior was at home recently, the delusions, actions, etc. - for example if the ill family member is in the hospital for a 72 hour hold and the hold is about to expire - but the doctor would not "speak" back to the family member who was calling - just listen. This woman said that if she got such a phone call she would quickly add another 72 hours to the hospital "hold" to help give the ill person time to start working towards recovery.

So - if you call the doctor, and tell them that you know that they can't talk to you - but if they just hold on to the phone so that you can tell them some things, that you don't think that this would be breaking the rule of patient confidentiality...

Of course - every doctor is different.

If the behavior of the family member is potentially violent or dangerous and the hospital or doctor is not being responsive in a way that you think is best for your son or daughter (or sister or brother) then you may have to let the doctor and hospital know (in writing) that you will hold them legally liable for anything that happens because they are not doing their job and treating the mentally ill person. See: How to Force the System to Give You or Your Family Member Better Care for more information.

And yes - in our view its a very stupid law that prevents a parent from helping and being involved in their mentally ill son's or daughter's treatment; its a legal response designed for situations where the person is mentally capable, not mentally ill. These laws make it very difficult to get help for your mentally ill family member, and difficult to understand how to best help the mentally ill family member (who is frequently living in the same house!). You can work to change the system to make it easier for families to get treatment for the people who need it - by contacting the organization called the Treatment Advocacy Center.

How can I help my loved one get the best care possible?

It can be frustrating working within the modern healthcare system. Especially in the middle of a crisis situation, when everyone is stressed and frightened, it can seem like no one is paying attention to your or your loved one's needs. However, there are many things you can do to communicate effectively and get the care you need and deserve. Here are some resources to help:

1) Make sure the doctor/psychiatrist is aware of all the symptoms - if they don't have all the information, they might be led to an incorrect diagnosis. Keeping a symptom journal is the most thorough and accurate way to do this.

2) Become familiar with the treating psychiatrist, the nurses at the hospital, the social workers, and anyone else directly involved with your relative's care. These are the people who should have your loved one's best interests and welfare at heart, and the people you should go to if you have questions, concerns, or complaints. Be assertive - you have every right to know what is going on, and have things explained to you in a way you understand - but be polite and flexible also. Too many times hospital staff get impatient with "problem" family members who they see as rude or demanding. It's vital to have a good working relationship with the treatment team.

3) Be polite but persistant in your quest to get information and answers. Hospital staff members are inevitably busy, but they are there to give the best care possible to consumers and their family. Keep your conversations and requests short and to the point, to maximize the time they have for you. If they are unable to see you, leave a message with your name, your relative's name, and your number, and keep the phone line clear so they can reach you at the first opportunity. Consider putting your question or request in a letter, and delivering it to their office. Remember to write down things you appreciate - special considerations or care that you or your relative recieved from a care provider - as well as concerns.

4) If you are an immediate relative or caretaker, make sure that you have clearance to speak with the psychiatrist and other doctors about the diagnosis and treatment plans. Current confidentiality laws prevent doctors from speaking with anyone other than the patient (assuming the patient is a legal adult), unless the patient gives their official permission with a HIPPA (Health Insurance Portability and Accountability Act) compliancy form. It can be absolutely essential for another person (a family member, primary caretaker, etc) to be informed of treatment decisions, especially because so many people with schizophrenia have very little insight into their own illness. Getting confidentiality clearance ahead of time can prevent many battles in the future over treatment compliance. See 'Involvement of Family Members in Treatment Plans for their Hospitalized Relative' for more ideas.

5) See 'How to Get Better Care' for ideas on how to work cooperatively with the hospital staff and the treating doctors to improve care.

Why won't my loved one stick to their treatment? How can I convince them to take their medication without upsetting them, or making them feel like I'm the enemy?

According to schizophrenia expert Dr. E. Fuller Torrey ("Surviving Schizophrenia" 4th ed, p. 295), there are several reasons that people with mental illnesses refuse or stop treatment (also known as "medication noncompliance). These reasons include:

• Lack of insight into the illness (also called anosognosia - a biological symptom of the disease)
• Denial (a psychological issue - person is aware of illness but wishes not to be ill)
• Medication side-effects
• Poor doctor-patient relationship
• Delusional beliefs about medication (e.g., that it is poison)
• Cognitive deficits, confusion, disorganization
• Fears of becoming medication-dependent or addicted

Some of these reasons are easier to deal with than others; for example, you always have the option of finding a better doctor, or adjusting medications to reduce side effects. Providing the patient with information about their illness (the benefits of medication, the long-term prognosis, etc) has been shown to improve compliance. Simplifying the treatment regimen with single daily doses, use of compartmentalized pill containers, long-acting injections, etc. can also help.

Unfortunately, one of the most difficult reasons for medication noncompliance is also one of the most common - statistics estimate that 40% of schizophrenia patients lack insight into their own illness as a symptom of the disease. Such anosognosia makes an enemy of anyone who tries to convince them otherwise. There is sometimes no way to force compliance without long and upsetting battles with your loved one. However, medication is currently the best tool we have to control psychotic symptoms and improve patient insight. Many members of schizophrenia.com have indicated on the discussion boards that living with schizophrenia is difficult enough with medication; without it, it's downright impossible.

You do have options available to you. Assisted Treatment is a benign term for an extremely difficult task - to help (or 'assist') a loved one with their treatment because they are unwilling or unable to take care of themselves. Assisted treatment options may include benevolent coercion, obtaining conservatorship or guardianship, conditional release, outpatient commitment, or involuntary commitment. The Treatment Advocacy Center website has excellent information and resources on Assisted Treatment.

A less extreme technique suggested by other schizophrenia.com members is to ask your loved one to try the medication for a specific period of time. Hopefully, once the medication starts to take effect, the person will begin to regain some rational thinking skills, and you start to talk reasonably together about the benefits of long-term treatment. However, make sure you give the medication enough time to work - it can be at least 1-2 weeks before any improvement is noticed, and many antipsychotic medications don't take full effect for weeks or months.

Others at schizophrenia.com have come to the extremely difficult point of offering their loved one an ultimatum - either get treatment and stay med compliant, or someone is going to leave (either you, or the patient). Another similar method of coercion is to stop supporting your relative financially unless they agree to treatment. There is no way to know or guarantee the results of such an ultimatum, so consider carefully if you are willing and able to follow through with your threat. It will only work if you are committed to carrying out your words. Also consider carefully your own safety and the safety of your family before making such a threat, since the illness can make some people behave unpredictably or violently, even against someone they love.

For more ideas and resources for dealing with the difficult subject of treatment compliance, see the following:

--Getting treatment for people when they lack insight into their illness.
--How to help someone who stops taking their medicines
--"I am Not Sick! I Don't Need Help" - a book by Xavier Amador on helping the seriously mentally ill accept treatment. Highly recommended by schizophrenia.com members. See also an internet-based video presentation by Dr. Amador on his book.
--Schizophrenia: Pill Taking is Just Like Golf (U. New Mexico psych dept. conferences) - a video grand rounds presentation about why adherance is a particular problem for schizophrenia patients, why it can be difficult to detect, and how to help the problem.

Coping With Schizophrenia:

How do I understand and deal with the symptoms?

Each case of schizophrenia will have a unique combination (in terms of severity, duration, prominence, etc) of positive, negative, and other symptoms. Related conditions such as depression, anxiety disorders, and mood-swings are not uncommon either.

One schizophrenia.com member diagnosed with the disease described his symptom experience with the following words:

The things that I have that I wish I didn't have are hallucinations, delusions, and loss of thought control.
The things that I don't have that I wish I did have are curiosity, motivation, and sex interest.
The above is pretty much the way schizophrenia goes.

Many family members struggle to understand what their loved one is dealing with, and want to relate and empathize with their illness experience. One of the best ways to understand what is behind some of the common symptoms of schizophrenia is to educate yourself as much as you can. "Surviving Schizophrenia" (Dr. E. Fuller Torrey) and "I Am Not Sick! I Don't Need Help! (Xavier Amados) are two books repeatedly recommended by veteran families on schizophrenia.com for people searching to better understand the experience of mental illness. Other recommended books, videos, and websites can be found on the schizophrenia.com website.

Some general materials to help you live and cope with the symptoms of someone diagnosed with schizophrenia include:

• Understanding and Dealing with the Common Symptoms of Schizophrenia
• 60 Tips for Helping People with Mental Illness (day-to-day interaction and communication tips)
• The Sights and Sounds of Schizophrenia - an NPR report that gives a virtual reality simulation of what a person with schizophrenia might experience.
  

Source: Presentation by Dr. Ira Glick,"New Schizophrenia Treatments" - Stanford University Schizophrenia and Bipolar Education Day, July 2005 (Click to see full presentation) Explanation of Terms: Delusions are fixed inaccurate beliefs, hallucinations are seeing or hearing things that are not actually there, Catatonia is an abnormal condition variously characterized by stupor, stereotypy, mania, and either rigidity or extreme flexibility of the limbs, Affective Flattening means that a person with schizophrenia will tend to have a flat emotion, or be emotionless much of the time, Alogia is the inability to speak, Avolition is a lack of motivation or desire, Anhedonia is the inability to experience pleasure. Dysphoria is an emotional state characterized by anxiety, depression, or unease. Executive functions are the brain's thought processing abilities that allow people to plan and problem solve (and which are typically significantly decreased by schizophrenia).

The following are specific suggestions that schizophrenia.com members have posted on the discussion boards concerning some common symptoms of schizophrenia and their associated problems.

Delusions: The common categories of schizophrenia delusions include persecution delusions (feelings that you are being spied on, conspired against, cheated, drugged, or poisoned), jealousy delusions (a feeling without just cause that your loved on is unfaithful), and self-importance delusions (also known as delusions of grandeur - the feeling that one has a great but unrecognized ability or talent, or the belief that you are an exalted being. Sometimes these have a religious flavor to them). It's upsetting and frustrating (to put it mildly) to be the victim of such delusions, especially when your only goal is to love and support your ill relative; however, the closest family members and relatives are often the first targets of this and other hurtful behavior.

Due to the disease, a person with schizophrenia often can't think or reason rationally. Explaining logically why the accusation can't be true won't work, and will ultimately be draining and frustrating, due to this fact. Try talking directly with the psychiatrist about the delusional symptoms - the current medication may not be adequate to control them. Also, be aware that delusions can take weeks or months to fade, even if the person is medication compliant.

Voices/Hallucinations: The experience of hearing voices or seeing visions are as real as anything else to the person with schizophrenia. Like delusions, it usually does no good to try and refute them. On the other hand, it's also not a good idea to just "go along with them," which ultimately doesn't help anyone. Family members who have tried to support their loved ones in the search for "them", or tried to keep "them" out with elaborate security devices, have only ended up frustrated. There are no lock to keep out invaders in your mind; no matter how hard you search, "they" will always be there.

One thing you can do is to simply acknowledge that your loved one is experiencing something unique to them - you can say "I'm sorry it's bothering you" or "why don't you tell the doctor about it," which doesn't ignore their experience but also doesn't give false evidence that others can see or hear these things. Sometimes the best thing that family members can do is encourage the ill person to write down/remember their experiences, and discuss them with their doctor.

Anger/Irritability/Mood Swings: Try to steel yourself internally; recognize that this is the illness talking, not the person. Some people have tried a detached, non-reaction to their relatives' anger; others have waited for the episode to pass (or calmed themselves down by going for a short walk) and then communicated how much they were hurt by that behavior. If mood swings are severe, a mood stabilizer might be beneficial. Talk to the doctor about possible options.

Violence or Abuse: Call 911 or the emergency room and get help. Your first obligation is to yourself, your own safety, and the safety of other family members. If you truly feel that you are in danger, if you have ever been hurt or seriously threatened, convince the authorities any way you can of the seriousness of your situation. Do not accept a diagnosis of schizophrenia (or anything else) as an excuse for this kind of harmful behavior. The disease may affect a person's thoughts and perceptions, but abuse is still abuse. What you need is not just action for domestic abuse, but an involuntary commitment to a treatment center and a psych evaluation.

Paranoia: See 'How to Manage 5 Common Symptoms of Schizophrenia', which has 6 steps for dealing with paranoia. Try to know and avoid situations that overstimulate or ovewhelm the person - too much sensory input at once can contribute to paranoid or delusionary symptoms.

Suicidal Thoughts and Tendencies: Suicide is a real and tragic consequence for many schizophrenia patients - about 40% will make at least on attempt, and between 10% and 15% actually succeed in killing themselves. A major factor is depression, which is a common companion of schizophrenia disorders. See 'Managing Depression' for further information on this topic, or the section on depression further down in this FAQ guide. If your loved one seems depressed, you can ask the psychiatrist about the possibility of taking an antidepressent medication in addition to antipsychotics.

Family and friends can help by being very aware of depressive and suicidal tendencies, especially in those individuals recently recovering from an episode or a relapse. See 'Preventing Suicide' for warning signs and actions that you can take to prevent a tragedy. If you are currently thinking about suicide, please read this first. Know the places you can call on quickly for help - find the crisis centers in your area and know the services they provide. Contact local NAMI chapter and ask them about such services.

Apathy/lack of motivation: Although many people believe that these sorts of behaviors are due to medication side effects or a lack of will on the part of the patient, most often they are simply another symptom of the disorder. (Excessive apathy - i.e. sleeping all day - may be a medication side effect that is compounding the disease symptom. Talk to the psychiatrist about the possibility of adjusting meds). The current generation of antipsychotic medications are much better at treating the positive (psychotic) symptoms, but have not made major headway against the more cognitive/behavioral negative symptoms. When you consider that schizophrenia severely disorders the way an affected individual senses and perceives the world, it's easier to see why that person might stridently avoid any sort of stimulation, even just going out to a mall or riding on a bus. One schizophrenia.com member suggested a comparable situation: two guys are climbing a mountain, but one is carrying a backpack full of tennis balls and one is carrying a backpack full of rocks. It may seem that the one is lazier for not going at the same pace, but he's got a heavier burden to carry.


One of the best ways to help is to actively pay attention to your loved one's responses. If they respond positively to your overtures or your attempts at conversation, by all means continue. If you feel rejected or rebuffed, remember that it is most likely a protective mechanism against too much sensory overload; stop and try again later. Establishing small routines or rituals can be very helpful, and a good source of shared time.

Emotional flatness or social withdrawal: Many family members are hurt by a feeling that their loved one is emotionally withdrawing into themselves, and that they just don't relate or interact anymore to the people around them. Emotional withdrawal/flatness is one of the negative symptoms of schizophrenia. Some of the newer antipsychotic medications can help alleviate these negative symptoms; however, they are not 100% successful, and the response is different from every patient.

One member described his emotional responses in the following way: "As a schizophrenic I will tell you that my emotions are not just hard for the world to access, sometimes it is also hard for me to access my own emotions."

Schizophrenia patients often have trouble with common social cues that most people do and recognize without thinking - body language, eye-contact, gesturing, varying the tone of the voice, etc. They don't realize they are missing these basic cues, and their absence can make the person seem much more withdrawn and cold than they intend to be. 'Coping with schizophrenia: social deficits' from mentalhealth.com has good explanations and suggestions for dealing with this.

Experienced members suggest finding other emotional outlets for yourself - make time to go out with other friends or just you, and spend another time with your loved one. Another thing you can do is specifically bring to the person's attention the fact that you want to share something with them. Sometimes you may have to simply, lovingly, request their love and attention.

How Can I Help Someone Who's Depressed? How Common Is Depression in Schizophrenia Patients?

According to the president of the 20th Collegium Internationale Neuropsychopharmacologicum (CINP), comorbid mood disorders (such as depression) are so prevalent in this patient group that they may be considered a fundamental characteristic of schizophrenic disorders. Up to 80% of schizophrenia patients experience serious depressive symptoms.

There are several reasons why a person with schizophrenia is more likely to experience depression than the average person. Depression may be a biological symptom of the disease - one of the negative-category symptoms like apathy. This can be compounded by the extra burden of stress carried by someone living with a chronic disease. Depression or mood-blunting might be a side-effect of an antipsychotic medication (abilify and risperidol are two that schizophrenia.com members have indicated can cause depression). Depression might be a co-diagnosis along with schizophrenia - some of the same neurotransmitter imbalances that are implicated in schizophrenia may also contribute to the development of depression. Finally, depression may be the major diagnosis - for example, if a person has manic depression, or major depression with psychotic features. These patients still experience hallucinations and delusions; however, they tend to have a characteristically negative tone (for example, a person might believe he/she will cause the world to end, or he/she is guilty of some unforgivable crime).

Likewise, depressive symptoms can appear at various points during the course of the illness. Many patients who experienced depression before starting on a treatment program reported that their depressive symptoms initially faded with the start of antipsychotic treatments, but then returned once the positive symptoms stabilized. There could be both a biochemical and a psychological factor to this. As visions of grandeur and self-importance, ideas of divine missions, and voices that have been constant companions for years begin to slip away, many people understandably feel lonely and isolated. They are frightened as they wake up to a new "real" world that is unfamiliar and difficult to navigate. Says Dr. Wingerson (psychiatrist) in Rosalynn Carter's book 'Helping Someone with Mental Illness': "To be psychosis free with nothing to look forward to can be devastating" (p. 141).

Regardless of the cause, depression is important to treat, especially given the high rate of suicide among schizophrenia patients. Moreover, research has indicated that depression has a profound effect on quality of life, irresepective of the presence of other schizophrenia symptoms. "Quality of life among people with schizophrenia may be more closely related to levels of anxiety and depression than to the core symptoms of the disorder such as hallucinations, delusions, and anhedonia" ("Quality of life in schizophrenia: contributions of anxiety and depression." Schizophrenia Research, 2001:51(2-3):171-180).

Schizophrenia.com members suggest the following to help deal with depression:

• write your feelings/thoughts in a journal to share with your psychiatrist or a family members/friends, so someone knows how you are feeling on a daily basis
• try not to isolate yourself. If you're not feeling up to socializing or talking face-to-face, a good alternative can be reaching out through emails, chatrooms, and discussion boards. Many members say that peer support groups are invaluable to them. Says on member, "I was an isolationist for a long time, and it only contributed to the depression and negative symptoms I experienced. You need to have someone you can talk to, whether it's through a support group, friends, or an online forum."
• ask your psychiatrist about starting an antidepressant medication. Many schizophrenia patients take an antidepressant in addition to anti-psychotic meds. Common options include: SSRI medications (Prozac, Celexa, Paxil, Zoloft, Lexapro), Effexor, Venlafaxine, Wellbutrin. Remember to give the meds a month or two to take full effect - see "What to Do for 6 Weeks While you Wait for Antidepressants to Kick In" for coping strategies in the meantime. Also, be aware that your body might get "accustomed" to the medication. Let your psychiatrist know if depressive symptoms return, so you can get your medication adjusted or changed.
• Psychotherapy is one of the cornerstones (along with medication) for schizophrenia and depression treatment. It helps improve day-to-day functioning, social skills, quality of life, and motivation at the same time that medication is improving chemical balances in the brain. Moreover, studies have shown that psychotherapy causes similar alterations in brain function to those seen with medication, although it only seems to be effective in conjuction with medication therapy.
• Nutritional supplements have been shown to increase the effects of antidepressent medications. Schizophrenia.com members suggest fish oil supplements (omega-3 fatty acids) or folate supplements. See research supporting the use of nutritional supplements with medication.
• Many schizophrenia.com members say that a regular program of exercise keeps them feeling mentally and physically healthy, and helps combat negative symptoms such as depression and anhedonia. Numerous studies have shown that exercise induces a positive physiological reaction in the body (increases B-endorphins and monoamine neurotransmitters, decreases stress hormones such as catecholamines). Moreover, exercise gives a positive sense of accomplishment, an increased belief in oneself, and positive benefits for physical health. Walking, exercise videos, and yoga are good easy activities for a beginning exerciser, require little/no equipment or training, and can be done either by yourself or with a partner.
• For severe depression, talk with a doctor about electroconvulsive therapy (shown to be safe and effective), or transcranial magnetic stimulation.

Some online support groups and hotlines for you to try if you are feeling depressed or suicidal:

1. American Suicide Survival Line (888) SUICIDE or, (888) 784-2433. This nationwide suicide telephone hotline provides free 24-hour crisis counseling for people who are suicidal or who are suffering the pain of depression.

2. The Samaritans Suicide Hotline (212) 673-3000.

3. Covenant House Nineline (800) 999-9999
http://www.covenanthouse.org This hotline provides crisis intervention, support and referrals for youth and adults in crisis, including those who are feeling depressed and suicidal.

4. Internet site: http://www.metanoia.org/suicide/ For those contemplating suicide.

5. Internet site: http://www.save.org/index.html This is the Web site for SAVE (Suicide Awareness Voices of Education), whose mission is to educate others about suicide and to speak for suicide survivors.

More resources to help yourself or a family member who's depressed:

• How to Help Yourself if You Are Depressed (NIMH)
• Depression is a Treatable Illness - A Patient's Guide
• Wings of Madness - a comprehensive site on recognizing and managing depression, compiled from the personal experience of the site's creator. Includes informative articles, discussion boards, and chatrooms.
  

What are the chances of relapse? How can you plan for a relapse situation?

Medication may be controlling symptoms and working well for a long time; however, even a correctly dosed antipsychotic will not totally guarantee against an eventual relapse. Most medications claim to reduce chance of relapse by about 80%. Be aware that additional medications might be needed to specifically address anxiety, depression, or panic attacks.

Dr. E. Fuller Torrey in his book "Surviving Schizophrenia" identifies common signs and symptoms (ironically, the symptoms were largely the same whether reported by the patient or by families) preceding a relapse episode. These can include: tenseness and nervousness (of either the patient or the home environment in general), trouble concentrating, depression, trouble sleeping, loss of interest in things/enjoying thins less, being overly preoccupied with one or two things (Surviving Schizophrenia, p. 289). Both patients and families will learn over time what individual symptoms tend to herald a relapse.

The family and living environment is key to the recovery process. A low-stress, low-key emotional environment can reduce the chances of relapse. Patients and their families can be aware of what is a high-stress situation or environment, and take steps to avoid those things. It's a good idea to have a straightforward plan to implement in a "get worse" case, as schizophrenia is a very unpredictable disorder and will naturally have its ups and downs.. Keep resources - people you can call on, emergency numbers, lists of medications, etc - close at hand. See Tips for Handling a Crisis and What Relatives Can Do to Help Improve the Course of Illness.

Consider discussing the possibility of an Advance Psychiatric Directive, to help guide family members and healthcare professionals during a crisis.

How do I explain the illness to family, close friends, and others?

First, decide who you want to tell (family and close friends who will be supportive and understanding, who might be involved in the recovery process) and who you need to tell (doctors, school administrators, employers). Not everyone needs to know, and for the most part you can be as discriminating as you wish about how much you disclose.

Once you've decided to tell someone about the illness, be proactive about providing information - books, articles, internet links - that will help them understand. Know that some people will be sympathetic and supportive, and some will not. Schizophrenia is a hard disease to deal with and understand, and some people are just unable to empathize. Some members of schizophrenia.com suggest distancing yourself, to a degree, from relatives and friends who cannot seem to understand or be helpful. It's important to you and your ill family member that you both stay as positive and as hopeful as you can about the illness.

Our online PDF reference library contains documents that are ideal for printing and passing out to family, friends, and others who you would like to share information with about schizophrenia and mental ilness-related issues.

Living with a Severe Mental Illness - Practical Matters:

As with any other chronic illness, there are some practical matters that caregivers and other family members will need to eventually deal with. These might include:

• insurance problems and driving licences
• befriending and leisure activities
• finding appropriate accommodation with any necessary support
• sheltered employment and training for work
• benefits problems and debts
• legal rights and advocacy
• genetic counselling
• treatment, including medication and complementary therapies
• representation at tribunal, court or inquest

Know that you have resources to help you plan these matters. For example:

• Treating psychiatrist or therapist
• social workers at the hospital
• local community organizations for the disabled
• PLAN (Planned Lifetime Assistance Network): developed to meet the needs of families who are actively planning for the future of an adult child with a disability. Programs (currently available in 22 states) help families develop a future-care plan, establish the resources for payment, and identify the person(s) or program(s) responsible for carrying out the plan. May also provide current services that relieve parents of part of the daily burden of care.
• In the UK: Rethink, the largest mental illness charity in the U.K., has information relating to medical, legal and financial benefits available.

The following is a list of federal aid programs and funding to help people with mental and physical disabilities. (Source: Mental Health, Mental Illness, Healthy Aging, a guidebook from the New Hampshire chapter of NAMI):

Disability Benefits (SSDI): Benefits exist for workers who become physically or mentally disabled prior to retirement age. Disability must be severe enough to prohibit substantial work and be expected to last for a year or more. Generally provides a higher income than SSI.
Supplemental Security (SSI): Provides monthly cash payment to aged, blind, and disabled people who have little or no income. Recipients may be eligible for Medicaid benefits. A handicapped child under age 18 may receive this if the child and parent meet income and resource requirements. Those eligible for SSI may also be eligible for benefits such as housing programs, Medicaid, vocational rehabilitation, and food stamps. Children living at home (in some states) can qualify for an extra benefit under "living arrangements", which is meant to offset some of the costs of providing extra attention and care to a special-needs child living at home. NOTE: Many people are denied on their first application, but are later accepted through an appeals process. See NAMI's page on Social Security Benefits, with a list of questions and answers such as who is eligible, how to apply, and what to do if an application is denied. . See also Help With US Social Security Insurance.
National Council on Aging: The National Council on Aging (NCOA) has a website designed to help older Americans determine what federal and state benefits and programs are available, depending on the individual's circumstances and request. The website can be accessed at www.benefitscheckup.org.
Aid to the Permanently and Totally Disabled (APTD): Provides financial assistance to persons determined to be medically disabled and meeting financial need guidelines. Income and other assets are considered. Eligibility guidelines are based on financial need and disability rather than age.

Some thoughts on applying for SSI or SSDI from schizophrenia.com members:

What SSI needs to see is letters from several professionals who have worked with the person, which state that he/she has a severe and permanent disability, that has a name (either medical or from the psychiatry DSM-IV, the Diagnostic and Statistical Manual, 4th edition), and that as a result of this disability she is unlikely ever to be able to earn more than about $500 per month. Obviously, to do this several things must be in place:

1) The ill person has seen a physician, psychiatrist, etc., been examined, and found to meet criterion for such a diagnosis.
2) You must be able to communicate with the professional (with mental illness this is next to impossible unless the ill person has filled out a release of information form saying it's OK).
3) Tthe professional must agree to fill out the forms and write a letter to SSI, and then actually do it.

Any person seeking SSI can have another person appointed to handle all the paper work, etc. Be aware that the Social Security Administration has a reputation for denying the first claim and the first appeal (which is a paper review, that is almost always a rubber-stamped denial). In seventy percent of secondary appeals, the decision is overturned, and SSI is granted. The second appeal is heard in front of an Administrative Law Judge, which in reality is not officially a "judge," but is a lawyer who specializes in administrative law. SSI will be back-paid from the original application. A lawyer can really help with this process, and many will take a percentage of the back SSI; so there is no out-of-pocket cost.

The following are health insurance and aid programs for disabled or low-income persons. (Source: Mental Health, Mental Illness, Healthy Aging, a guidebook from the New Hampshire chapter of NAMI):

Medicaid. Medicaid program helps pay for health care costs for all persons who receive public assistance and for certain persons with low incomes who can't afford the cost of health care. Criteria for this program is the same as Aid to Persons Who Are Totally Dependent (APTD), and persons receiving APTD may also qualify for Medicaid benefits. The Old Age Assistance (OAA) program applies to individuals who are 65 years and older.
Medicare: This federal health insurance program offers hospital insurance coverage (Part A) and medical insurance (Part B) for people 65 and older who qualify for retirement benefits, for workers who have been receiving disability benefits for 24 months or more, and for people who need kidney and dialysis or transplant. There are various plans, with some mental health benefits included. To apply, call 1-800-772-1213.
QMB/SLMB: This provision pays the portion of Medicare that covers health insurance. Check with your local Division of Health and Human Services office for more information.
HICEAS: This program provides health insurance counseling, education, and assistance services to assist Medicare beneficiaries and their families in understanding their insurance coverage and options. For more information: 1-800-852-3388.
Home Health Care: These are in home medical services for qualified older adults in their home. Local visiting nurse or home health associations usually provide home health care. Medicare may cover certain medical and psychiatric services.
Lifeline: This is a personal response service for persons if they fall or have an emergency. It involves using a machine and a help button that calls a central number and is available for a monthly fee. For more information call: 1-800-635-6156.

For more information, see "Mental Health Insurance" news and information.

Housing concerns - if your loved one can't live at home:

Often, a mentally ill family member is unable to be self-sufficient and completely independent, even if they are of legal age to be living alone. In these situations, other arrangements can be made, either in the home or in another facility.

Many families are neither prepared nor equipped to accept a mentally ill relative into their homes, particularly if they have a job and a family of their own. It's most important that the patient be on medication, and if you have no way to ensure that in your house, then taking them in helps no one. Moreover, psychotic episodes may put you or your children in danger. Experts suggest that having a mentally ill family member live with you may work under the following circumstances:

o the ill person functions at a fairly high level, has friendships, and is involved in activities outside the house
o if there are young children, their lives are not negatively affected
o interaction among family members is relaxed, and
o the ill person intends to take advantage of available support services

However, under other circumstances (see below), another arrangement might be more appropriate:

o the main support person is single, ill, or elderly
o the person with schizophrenia is so seriously ill that there is little
or no chance to lead a normal family life
o children become frightened and resentful, and feel like they are living in a hospital
o marital relationships deteriorate
o most family concerns revolve around the person with schizophrenia
o no support services are used, or services are not available
o the individual is habitually aggressive, and the threat of violence disturbs the household.

Even though you may feel obligated to help your family member, and guilty about not taking on the responsibility, you first have an obligation to yourself (your own mental and physical health and well-being) and your family. The best thing for everyone involved is to find them another, supportive place to live. Research treatment centers, halfway houses, group homes, crisis housing, clubhouses, or a live-in home/nursing aide. The following is a list of housing options for the mentally ill, as well as federal/charitable support and aid programs (Source: Mental Health, Mental Illness, Healthy Aging, a guidebook from the New Hampshire chapter of NAMI):

Independent Living: in a subsidized apartment or using federal aid for rent

Supervised apartment: You may have your own apartment, or share an apartment with one or two other clients. Staff members are on call to assist you, and they stop by routinely to see how you're doing.

Home-share: You may share a home with several other clients. Your case manager visits you at your home and assists you if you need help with anything.

Foster care: You may live with a family that has received training and support in providing a place to live for a person who has a mental illness disability.

Community care home (group home): This type of group living arrangement serves only people with mental illness disabilities. Professionals and trained staff are available on the premises to assist you.

Halfway house (group home): This arrangement is particularly helpful for a patient with a dual diagnosis of addiction and mental illness. Professionals at the halfway house offer help to the resident needing assistance with this type of dual recovery.

Boarding home (group home): You may share a home with other clients, and people are available to assist you. This type of housing is different from a "community care home"; the people who are available to assist you are not mental health care professionals. However, they have received training to assist people with mental illnesses.

Clubhouse: The participants are called members, not patients and the focus is on their strengths not their illness. Work in the clubhouse, whether it is clerical, data input, meal preparation or reaching out to their fellow members, provides the core healing process. One of the most important steps members take toward greater independence is transitional employment, where they work in the community at real jobs. Members also receive help in securing housing, advancing their education obtaining good psychiatric and medical care and maintaining government benefits. Membership is for life so members have all the time they need to secure their new life in the community.

Residential treatment facility (group home): This is another type of group living arrangement that treats people with disabilities caused by mental illnesses. A large staff of professionals is available, and people usually stay in this type of facility for long periods of time. Clients attend classes or workshops to learn skills to become more independent.

Temporary respite bed: This temporary living arrangement is available for people having a crisis. Staff members are available to help clients through the crisis period.

Nursing home: This type of facility offers 24-hour care and is staffed by physical and mental health professionals. The client using this type of service is generally the elderly mental health patient

Resource links to housing and aid programs:
1) Mental Health America's list of Federal programs providing housing aid for people with disabilities to live independently in the community.
2) The Fountain House is the original Clubhouse for the mentally ill, founded in New York and now with 250 centers in 43 states. Fountain House has programs for housing, education, outreach, advocacy, and social/recreational activities.
3) International directory of clubhouses.
4) Your local NAMI chapter or support group may have some useful resources in your area. Look also to see if there is an Assertive Community Treatment program in your area
5)Contact local Public Housing Authorities (you can find them listed under county/city offices in the gov pages of the phone book - may not be under exactly that name) - they are responsible for allocating Federal funds for low-cost and subsidized housing. They will know what is available in your area.

Schizophrenia.com members who have gone through the experience of finding appropriate housing for an ill loved one recommend finding a support group or a counselor to talk over your options and your own emotions about the situation. It's a terribly draining experience, and speaking to others who have had to deal with similar situations can be an excellent support.

Job and School Issues - can a person with schizophrenia go back to work? Should they?

Like so many questions about schizophrenia, the short answer to the employment question is "yes and no." Since there is such a wide spectrum of severity under the schizophrenia diagnosis, some people will eventually be able to go back to work full-time, others can take a part-time job with accommodations, still others can find satisfaction in volunteer work, and some simply don't have the capacity to do any of the above. A good predictors for future employment (according to Dr. E. Fuller Torrey, "Surviving Schizophrenia") is if the person held a job before becoming ill. If they have held a job in the past, it is more likely they will be able to hold a job sometime in the future. Likewise for pursuing a higher education degree, much depends on the individual situation. Someone who has their symptoms under good control, and is effectively managing their illness, may be ready to take on the added stress (but also the added rewards) of higher education.

There are always some pros and cons to consider. Pros include increased self-esteem, a reason to get up in the morning, a positive identity, an extended social network, and additional income (although check to see how working will affect federal benefits, if applicable).

Cons include possible stigma in the workplace, symptoms of illness or side-effects of medication (i.e. fatigue, difficulty concentrating, distraction) make working hard or impossible, added stress of a job contributing to relapse, and possibility of losing social security or other healthcare benefits. According to the Social Security Association website, returning to work does not automatically disqualify a person from disability benefits. Familiarize yourself with the legislation, frequently asked questions, and support programs using the following information resources:

• call SSA's toll-free number at 1-800-772-1213
• contact your local Social Security office
• visit the SSA special "Worksite", or read more about SSA's work incentive rules.

If you've decided that returning to work is possible and desirable, think about the kind of work you have the skills to do (or could learn the skills to do), and that you would potentially enjoy. The cognitive symptoms of the illness (distractibility, fatigue, social withdrawal, inability to concentrate, etc) may limit what you can aspire to do, but there are still jobs out there. Know the things that stress you out in day-to-day living, and take those into account. Maybe look for something that requires minimal social interaction, or a job you could do from home.

Making the transition into work (either full-time or part-time) can be difficult, as you are rehabilitating from a long illness episode. The following suggestions from board members may help you work up stamina and gauge your own abilities before attempting to take a formal job:

• Volunteer (this can help you acquire skills, build up contacts, and it looks good on the resume. It can be very enjoyable as well!)
• Take a class at the local college, or sign up for correspondence learning courses. Some schizophrenia.com members are currently working on, or have recently finished, college-level degrees. See the "work and school" board - a subconference under 'People Diagnosed With Schiz' to read their posts and ask your own questions.
• Attend church functions (bible study, church picnics, forums, etc.)
• Start your own business
• Get out and exercise

Some schizophrenia.com members have posted on the boards that they feel overwhelmed at work or school, and have trouble managing deadlines, prioritizing tasks, and keeping focused. If you are currently struggling at work, here are some suggestions that may help. (Note: some are suggestions from schizophrenia.com members, some are excerpted from "Diagnosis: Schizophrenia" by Rachel Miller and Susan E. Mason).

1. Talk to your doctor or a social services agency about finding a job coach (this is something specific mentioned by several people on the Discussion Boards) that can help you with your specific work-related problems and be a supportive voice.
2. Keep lists of small goals and deadlines, number them according to which need to be done first, and look at the list every morning and evening. Check things off when they get done, and revel in the satisfaction.
3. Keep a calendar or a day planner where you can immediately write down all appointments, tasks, and reminders for yourself
4. Make a list of short-and long-term goals, broken down into manageable steps. A job coach, a social worker, or a supportive friend or family member can help with this.
5. Keep your work environment as noise- and distraction-free as possible.
6. If possible, work for short periods of time separated by breaks.

For either work situations or higher education, the following tips might be helpful:

• Know your support resources. Find out about on-campus counseling and disability services ahead of time. Know what support services will be available to you as someone with a mental illness diagnosis. Register with your school's office of disabilities.
• Know your rights. You are not required by law to disclose a mental illness diagnosis to your employer. Consider the relative pros and cons of sharing this information - the benefits of added support, understanding, and accommodations, vs. the possibility of stigma and discrimination.
• Present your needs. Know what sort of accommodations you might need to help you succeed under the stress of work or school, and discuss them with your employer and/or the school disability office. Will you need flexible, part-time work? A note-taking or transcribing service? Extra sick days? A partner for training or moral support? Identify your needs, and present them calmly and clearly.

Other resources to help you in returning to work:

• 'Vocational Rehabilitation'
  
• 'How Schizophrenia Impacts the Ability toWork'
  
• Supported Employment: a vocational rehabilitation program in which the patient chooses the type of employment he/she would like, and is trained in job and social skills before beginning work. Pre-employment classes typically run 15 hours a week for seven weeks; the client is then given a job coach for additional training and support during the initial working months. (Information provided by NAMI)
  
• Improving Work Capacity in Schizophrenia (Yale university grand rounds - online video presentation)
  
• Cognitive Determinants of Work Status in Schizophrenia (UCLA grand rounds - online video presentation).

How Can I Help a Family Member Who's Been Arrested?

This is, tragically, not that uncommon a concern for families of schizophrenia patients. It's important to know that people with schizophrenia are not more violent than the average person - as long as they are receiving adequate treatment. However, it is increasingly difficult for people with schizophrenia to get and stay in treatment, and this is perhaps why about 1 in 6 inmates have some sort of mental illness.

Once someone has been arrested, they are in the domain of the legal system, which can be just as if not more confusing than the medical system. Right now there is not very good coordination between these two systems to help offenders with brain disease. However, there are some things that you can do, and some resources you can tap.

The following suggestions have been adapted for general use from NAMI publications by the chapters of California and Wisconsin. Depending on your state regulations, these may or may not work for you. Look up your local Protection and Advocacy Agency, which offers services for mentally ill citizens, and ask for legal advice pertaining to your area.:

1) Offer your support. Help your loved one stay calm, and remind him/her of legal rights (right to an attorney, etc).

2) Contact the local jail where your relative is being held. Let the offical in charge know that your relative has a psychiatric disorder, and give information about the specific diagnosis and symptoms. Ask how long your loved one is expected to be held. and ask the jail staff about arranging a psychiatric evaluation. If he/she is seriously ill, you can ask for a police transport to a psychiatric hospital (this is called a "5150" hold) for three days of evaluation and treatment. Ask about the possibility of receiving medication at the holding facility (it seems like medication is generally available only at County jails, not city ones).

3) Notify your loved one's psychiatrist, case manager, and the jail medical staff or administrator of the situation, and stress the importance of continuing uninterrupted medical care.

3) If and when your relative is transferred to a county jail facility, contact them and ask for their location and booking number. Ask if you can fax over information regarding your relative's medical diagnosis, and ask about placement in a mental health unit (if available). Information to be included: diagnosis, psychiatrist's name/phone/address, medical doctor's name/phone/address, medications with dosages and times to be administered, side effects that your loved one experiences, history of suicide threats/attempts, other medical conditions and medications prescribed for them. Providing this information can help the staff in conducting their own assessment before placing your loved one in a mental health unit. Keep the information in the fax medically-related only, and keep a copy for future reference.

4) Find out if there are any Mental Health Courts in your area - these are special courts that assist mentally ill offenders. Sometimes these courts make decisions to release an offender (after a certain portion of the sentence is served) on the condition that the person remain in an approved treatment program.

5) Decide about legal representation. If you do not have a private attorney, your loved one will be assigned a public defender. Don't automatically assume that the public defender will do a less credible job than a private one; do some research and find out about all options. A local support group such as a NAMI chapter might be a good resource for this, if other families have had experience in the local legal system. Also, see the American Bar Association's Disability Lawyers Directory.

6) Resources you can contact for assistance:
--The National Association of Protection and Advocacy Systems
--The Bazelon Center for Mental Health Laws (202-467-5730)
--The Treatment Advocacy Center (703-294-6001).
--The Consensus Project - a national effort to improve the services to people with mental illness in the criminal justice system.

An excellent book on this subject is "Northumberland Nightmare", written by a father whose mentally ill son was charged and incarcerated for robbing a bank. He writes about difficult encounters with both the legal and medical system in the struggle to get fair and decent treatment for his son.

Listen online to two public radio special reports on the situation of the mentally ill in America's jails:

--Jailing the Mentally Ill: A Two Part Special Report
--The Concept of Legal Insanity