9
OUT OF THE HOSPITAL AND STAYING WELL
At first it may seem that nothing could be harder than the hospital experience, but in the hospital there are many people helping you to recover. It’s when you go home that you face the real challenge. You have more control over your life, which is good. But you also have many important decisions to make that will play a major role in your recovery.
You may have several options for follow-up treatment. It is not unusual to have some symptoms when you leave the hospital; if you do, you may need to attend a special program during the day. There are day programs and intensive outpatient programs that give you specialized treatment but allow you to sleep at home. Or you may be offered outpatient appointments with your psychiatrist and therapist.
When you make the choice to take advantage of follow-up treatment, you begin traveling down the road toward recovery. That road may have some bumps and curves. You will need to develop some good navigational skills to continue to stay on a healthy track and avoid relapse.
LINDA: I was twenty-three when it hit me. I was in college working on my degree, working part-time for the board of education. I had an obsessive, jealous boyfriend. It took me four years to break up with him. During those four years I wasn’t allowed to talk to anyone. He always kept me like a caged bird. I felt trapped within myself. I had nowhere to go. He was my only key for survival. It was very difficult to be alone, a young girl alone trying to make something of herself. He stalked me the day I went to get an order of protection from him. He really scared me because he was always stalking me. I started having gynecological problems, so I called my gynecologist. His secretary said there were no appointments. After I hung up, something in my brain clicked. Her voice triggered something.
Special contributors: Julia Becker, M.D. and Steve Anderson, M.A.
LINDA
I knew something was going on. I felt alive again for the first time in four years. I left work. I was in my apartment and started writing. I couldn’t stop writing. Then my best friend called me up out of the blue. She was just great. I called my social worker from when I was a foster child. I was crying and crying. Then my mind started to race. I thought my boyfriend was sleeping with my roommate. I thought my roommate was killing my cats.
My parents had passed away. I couldn’t go to my sister or my brother, so my last hope was the Blacks, my foster family. I hadn’t talked to them in four years. I went back to them and they took me in. They cooked me dinner but I didn’t eat it. I was 101 pounds, a twig. I hadn’t eaten, slept, or gone to the bathroom in five days. All I could think of was that everyone was out to get me. I thought my friends were talking about me. The only people I trusted were my brother, my sister, and the Blacks. I was having these hallucinations, seeing people who weren’t there. The main man I was focusing on was my art professor. It had been love at first sight. But he was my professor and I was a student. I started calling him up and harassing him. When he didn’t respond, I thought he was “in on it.” My sister told me to stop calling him. I was leaving him notes under his office door. I even followed him one time. Then he threw me out of his class and told me he was going to call security. There was this guy in the class I liked. I was trying to get his number from information in the middle of the night. In my effort to get the number from information I was screaming. Mrs. Black woke up and called 911. The police took me to the hospital. When they locked me in a room, I started kicking the door. It took five men to keep me down. They gave me a shot, and I fell asleep. The next thing I knew, I was in a gown in a wheelchair. It’s scary. I stayed in the hospital for fourteen days. When I went home I took myself off the medication. My symptoms were coming back. I did a lot of crying and I was very angry.
I now know what happened to me. It took me five years to accept it and adjust to my medications. I used to cry. I wouldn’t even mind surgery. I wish I could have had anything rather than a mental illness, but now I am accepting it.
ACCEPTANCE
Acceptance of your illness will come slowly but not steadily. One day you accept and the next you deny. This is a normal response to any serious illness. Talk about your feelings regarding your diagnosis. Talk to your group members, your therapist, your doctor, your family, and close friends. Don’t let a relapse force you to get help.
BETH: I didn’t believe it was going to be for the rest of my life. I was hoping that it was going to be the schizophreniform diagnosis and it wasn’t going to continue. So I wound up stopping my medicine. It would make me tired, and I didn’t want to take it because I didn’t think I would have to.
BEN: With this illness, reaching the point of self-awareness is very important. That means acknowledging that you are sick. If other people try to help, you have to let them. Accepting that you have the illness is very important. If you think, “I only have to take the drugs till I feel better,” it doesn’t work. Accept the truth and move on.
BUDDY: It has a lot to do with the individual being willing to get help. If the individual is not willing, then the family has to be involved.
JACKIE: A few times I felt sorry for myself and just cried, but I didn’t like feeling that way. I realized I could have a normal life even though I went through this, even if I have to stay on medication. I don’t regret anything from the past. I’m almost glad my life went the way it did. I’m happy with my life now.
LUCINDA: Realize it’s not a life-threatening illness, like cancer or heart disease, and you can lead a good life on your medication. Talk with people who understand your illness, like those people that have the same illness as you, and your doctors and social workers.
One Day at a Time
Sometimes it seems like you will never be where you want to be. It feels like getting well takes forever. At those times, recall other times when you thought you would never get to your goal, like graduating from elementary school or getting over the flu. It does take a long time to heal, but remember, it will get better. Meanwhile, take one day at a time.
ILAN: I know it’s a cliché, but take it one day at a time. What I learned from my counselor is that many of us can’t see a light at the end of the tunnel. I always saw a light, and the light helped me. I didn’t always know that I would reach it, but having it out there kept me going. It didn’t clear away every problem. I also knew that every time you get punched down you have to get up. Parts of my immediate family were very supportive. I had them to hold me up at times. I had a good social network, people I could continually count on. Also, if you lose a friend, whether it is over your illness or not, you are bound to find another one as long as you are open to it.
And don’t forget to breathe. Sometimes I cry and sometimes I take a deep breath, and sometimes I stare directly into space, better known as the television. I cried this morning. I don’t think it makes me weak. It’s a kind of therapy. Then I get up and I breathe. Music helps; it’s a bit of an escape.
One Step at a Time
When the severe symptoms begin to disappear, it is time to get back into your life. At first you will not be quite ready to go to school or work. After all, if you were recovering from any other serious illness you would not go right back to your old schedule. You would be encouraged to start gradually, one step at a time.
LINDA: Get up, force yourself into the shower. Do not go back to bed after that alarm rings. Then get into that shower. Try to exercise and eat a healthy diet. Exercise your mind. Read the newspaper in the morning. Read a book at night. Watch a movie. Meditate. Listen to the radio. Play with your dog or get a cat. Talk to a friend. Go to school, to a program, to work. Have a structured routine. Every morning, get up at the same time. Get enough sleep, at least seven or eight hours a night.
SAMANTHA: I try to keep myself as busy as possible, occupied with things and activities that I enjoy. I try to focus my attention on other people at times.
GENEVIVE: Take the meds and then set a goal for yourself, something you are going to work toward.
ILAN: Just go on with your life. Because at the beginning you think you are some crazy person, and your self-esteem can get low. I think seeing a social worker helps me. I like exercising and feeling good. So do whatever it takes to help you keep your self-esteem up. So, what helps you to keep your self-esteem high?
BEN: It’s part of life. You make the best of what you have. Play with the cards you are dealt. You can make things like this work for you. A lot of people, when they are at a disadvantage, they excel.
STAYING CONNECTED TO TREATMENT
Treatment means going to your doctor, who will monitor your medication. It also means going to a day program or to therapy. Some people go to group psychotherapy while others attend individual sessions. Having a group or a therapist with whom you can discuss anything at all about your illness and your goals is a big step toward staying well.
ALEXIS: When I was eighteen, I knew something was wrong. It started before I even got sick. I shoplifted and I got arrested. About two months after that, I got so scared I was going to go to jail that I didn’t feel right. I lost my concentration when I was reading my schoolwork, and I noticed that my arm was hurting. I called the social worker at the time and I went in for a visit. He said it was just a panic attack, but I wanted to go to the hospital. So my mom and I went over to the hospital and I stayed overnight. The next day they took me from Coney Island Hospital to Kings County Hospital. I was scared of the “big nurse.” I was there for five weeks, and I thought I was going to die. I kept saying, “Am I dying, am I dying?” I hallucinated that I was raped. I felt very stiff from the medicine, so stiff that I couldn’t move at one point. The hospital was very depressing during the day, and we would just sit. That made the days seem very long. The only activity you could do was pace up and down the hallway. Then I was transferred to Hillside. I didn’t want to take a shower for weeks. I just didn’t want to get out of bed. My feet kept moving—like a march. I couldn’t read because I couldn’t concentrate, and my arms were so stiff I thought I would never drive again. Most of the time I couldn’t sleep at night. When I was in the hospital I thought that I was there because I stole. I didn’t understand then that the stealing was just a losing-yourjudgment type of thing. I did feel scared, and I thought I would never get better. I told my mother to sell the car. I just thought I was dying.
You have to want to get well. I have to take the medicine to stay well. I wouldn’t be where I am today without the medicine. I tried, and I can’t go off it. The therapist and doctor are there to help me, but I have to come to help myself. Therapy is a two-way street.
ILAN: I think that therapy gave me a great deal of self-esteem and self-confidence. It also made me feel comfortable with myself. Within therapy there are boundaries. It also helps you understand other people better as well as yourself. You can make small but very important decisions based on things you learn in therapy. You are better as a person, healthier mentally when you can understand other people. My friends come to me sometimes now because they know I will hear them out and I’ll listen to all sides of the story. Group therapy helps other people too, because you are giving support to others from what you’ve learned. It’s a good boost, and it also helps the stress level.
JAMES: The groups help a lot because I’m talking with a lot of other people who have the same problems. Just the fact that you are going to the meetings is keeping you busy. And the doctors and the therapist you have are there to help. Coming to the hospital, it’s like the only place you can really get down and talk about it because you are with people who went through the same thing. Every time I left a meeting I felt good; I was in a good mood. The times that I wouldn’t go or didn’t feel like going, those were the times I wouldn’t feel too good. Once I got to the meeting I could talk about everything.
ROMAN: Go to group therapy. Stay on your medication.
ALEXANDRA: Now I come to Hillside every week. I come to see my therapist, nurse, and doctor. I see the nurse about the clozapine medicine. I see Dr. Becker for my other two medicines. I come to see Mrs. Miller for more counseling and to talk about what I’ve been doing and setting goals. Tomorrow I’m going to an interview at Citiview Connections. I hope they can try to get me a volunteer or part-time job, whichever comes first. I want to learn more about computers, learn how to get there, and make new friends.
Day Programs
Day programs are very helpful to many people who do not need treatment in the hospital unit but still need some extra help. Many day programs will help you with plans for school or work when you are ready.
LAURIE: Being in the day program is like you have a lot of friends and teachers who are really nice. They are always there to be a friend to you. I like the classes; you get to cook and talk about anything you want. It helps having something to do every day until I get well. They helped me with getting into college.
BEN: Everyone is different. The day hospital works, although people keep denying, saying, “I don’t want to go.” I was one of them. A lot of times when doctors, social workers, or counselors tell you something, you just have to stick with it because at the time you don’t realize it’s beneficial for you. Later when you look back you will thank God that they were very persistent. But that’s the thing—a lot of times, so many factors have to work together.
BUCK: I would say take your medication. Listen to your therapists. If you are in a program, do the activities they have for you in the rehabilitation process.
DECREASING STRESS
Doctors do not believe that stress causes schizophrenia, but once you have schizophrenia, stress can affect your health. This is true of many other illnesses. For example, people with diabetes or heart disease are more likely to develop some symptoms when under too much stress.
When you work to keep your stress level at a minimum, you are helping to keep the chemistry of the brain from becoming imbalanced.
MEREDITH: I try to stay away from stressful things that will make it worse. Every time I think I’m going to be sick, I get more selfish for myself instead of taking care of other people.
I think more about what I want than what everyone else wants. I think more about who I am and what I need to do to stay healthy. I’m more aware of other people’s pain. I’m learning now to avoid negative people and negative situations and learning how to deal with them. And after everything I’ve been through, I can still have hope for my future.
GARY: I talk more about other things that are giving me stress, am a little bit more talkative with my family and my friends, see my therapist and psychiatrist.
ALEXIS: Don’t take on too much stress at one time. It might take a little longer to do something, but you will get it done. It’s good to build up gradually. If you get overwhelmed, nothing will get done. Do deep breathing exercises.
AMBER: Be around people you like to be around. I spend a lot of time with my family. We like to eat out, Indian food, Korean food. I do a lot of things with my friends. We go shopping, have lunch, or just hang out at my friend’s house.
Because schizophrenia is an illness, it is important that you sleep well, eat well, and exercise regularly. Likewise, it is important that you socialize, date, and visit with family as soon as you can tolerate it. Ask your treatment team to help you plan this.—Julia Becker, M.D.
DATING
Dating and intimate relationships are an important part of life. It may take time to begin relationships again, but this is part of returning to healthy living. It is best to meet people through friends and family, in school, or at work. There are many Web sites for dating. However, like everyone else, you will need to be extremely careful using the Web to meet people. Sometimes it is easier to date someone who also has a mental illness. You may want to ask your therapist or NAMI for help locating dating services that specialize in people with mental illnesses.
VAN: I think initially it’s challenging to kind of get back into the dating scene, but you should realize that it could help in your recovery because it can make you realize that you have recovered and that you still have the need to be with someone. I think it is important to date. I also think that your treatment and your diagnosis shouldn’t be the topic of conversation on the date. At first it was difficult to get myself over thinking that I was in this place, that I was sick, and that I was on medication. When I put that aside and I was myself and would talk to someone, I would enjoy seeing who I was again and enjoy it. That made me feel a lot better. I think that’s a big step in recovery.
BETH: Dating is normal, the same as for anybody else. It’s difficult when you get sick, though. My relationship with my first boyfriend ended after I became ill. We didn’t even stay friends. My new boyfriend knew about it beforehand. It’s in his family too. He was very understanding and it didn’t matter to him.
RELAPSE
A relapse occurs when symptoms that were once completely gone or under control begin to appear again. Sometimes people experience brief episodes of symptoms that come and then quickly disappear. We call these “blips.” Many relapses can be stopped with help from your treatment team. The sooner you let your doctor know about symptoms, the better.
AMBER: When you have symptoms, tell your doctor. Maybe she can raise your medication so the symptoms don’t recur. For example, the minute you notice that you are seeing things or hearing things that aren’t there, tell your doctor.
GENEVIVE: I just don’t let symptoms bother me as much because I know it’s an illness. I try hard not to think about them. Now when I’m sad I know it’s my illness. I know I don’t have to do something drastic. I can try to do something to come out of it. I do the breathing exercises. I watch TV, play music. I kind of lift myself up from the depression that I’m getting. When they lowered my meds and I started to get symptoms, I made sure my doctor knew about it. I had my olanzapine dose raised. I was doing a lot better with it. When I’m feeling sad, I tell my father or my mother or my sister. They always tell me I have nothing to feel sad about. I think maybe they don’t understand that when I’m sad it is part of my illness.
MEREDITH: Relapse is very frustrating because you depend on the medication to work. It works most of the time, but there’s a chance you’ll just get sick. It’s not anyone’s fault. You have this illness. It may not work the way you want. You just have to live with the highs and lows. It doesn’t mean it’s always going to be there. But it makes you aware of the precious moments, how wonderful the little things, how great the big things. And you just keep moving on.
Know the Signs of Relapse
It is helpful to know your own warning signs so that you can get help as early as possible. Some early warning signs may be changes in appetite, weight loss, decreased or increased sleep, disturbed sleep, or changes in energy level. There may also be symptoms such as paranoia, feeling people are looking at you, or a return of other symptoms you experienced previously. As soon as you notice a change or a new symptom, it is very important to call your doctor. The doctor may be able to adjust the medication to prevent further symptoms and avoid hospitalization. If it is too uncomfortable to speak with the doctor, talk to a family member or therapist to get help.—Julia Becker, M.D.
ILAN: While I was in day hospital the first time, the doctors were telling me they believed my diagnosis wasn’t exactly schizophrenia. It was “brief reactive psychosis,” and that meant that it was a schizophrenialike breakdown where I had the illness and it was gone. They believed this because I was able to get better from the medication so quickly. I remember, I think it was the last day of day hospital, my father came to pick me up. I said, “I’m free,” and I really thought this was the end because they took me off the medication. I really wanted to believe it.
After some time passed, manic symptoms began to surface that nobody noticed, including me. I was buying a lot of things I didn’t need. I had no space for this stuff. My bedroom looked like someone had pushed all of the things from the rest of my apartment into one room. My thoughts on the matter were that I bought furniture to start my own apartment. The only problem was, it was enough furniture for a two-bedroom apartment.
As for the second breakdown, I remember I was in class in college and was kicked out of two classes. This breakdown was different. I was in the emergency room and I wasn’t screaming or anything. They were able to bring me in without strapping me down. But I was delusional. At the hospital they interviewed me, and I noticed the pause in the writer’s hands as she was trying to make sense of what I said so she could chart it. After more breakdownlike behavior, I was admitted to Low III. It becomes a little vague. I was in the quiet room. I still didn’t know what was going on because I thought I was there to help other people. When I was finally discharged, I really didn’t want to go back to day hospital because it was a living hell. But I realized I wasn’t going to win. I went through day hospital and started vocational rehab. At that point my doctor took me off the Prolixin, after I had only been put back on for five months.
The next break came when I was at synagogue. It was my holiday, Passover, and I was praying with the congregation. I realized for the first time that my thoughts were going quickly. I couldn’t concentrate on one thought alone. They were jumping from one to another. I made it through the holiday and the festive meals because I thought it was important to do so. My father returned from my stepmom’s family and I told him in a way that I thought would be easy on him, let him know I was getting sick again. Finally I said, “Dad, I’m going down. I need to go to the hospital tomorrow.” That was the last hospitalization—four years ago.
AUDREY: The first thing is to be completely honest with your doctors about your symptoms. Also, being aware of your symptoms in order to prevent relapse is very important.
JEFF: Early signs: not sleeping, worrying about stuff that didn’t happen. ALEXIS: Recognize your symptoms—mine are talking too much, spending too much, not sleeping, not eating. And then get help.
BETH: Every time that I’ve gotten sick, I’ve had anxiety before.
Tips on Preventing Relapse
Staying well can be more difficult than getting well. Most times this is because of problems with the medication or skipping doses, but sometimes it is due to mistakes in taking care of the stressors that can interfere with recovery. Sticking with the treatment, abstaining from drugs and alcohol, having structure, getting good sleep, and making time for enjoyment are all important elements in staying well.
ZELDA: To stay well, you never give in to actions that you know may cause harm. For instance, I know that I can’t stay up really late. So one night I’ll stay up till four o’clock, but the rest of the month I know I have to stay on track. So give yourself a little slack, but not too much.
LINDA: Go to therapy. Talk to a friend. Go to school, to a program, to work. Have a structured routine. Every morning, get up at the same time. Get enough sleep, at least seven or eight hours a night. Of course you are going to take your medicine, that’s a given. And take it at the same time each day.
VANESSA: I take my medication every day. And if I run out I call the doctor. I try to eat right. I try to get out with my friends now. The doctors in the hospital helped me. My mother and my father, especially my mother, helped me. I know I have to take care of myself. I know I have to see the doctor on a regular basis. My therapy also, I have to have that. That helps a lot.
LUCINDA: To stay well, my advice would be to continue taking the medication. Stay away from people who like to upset you. Keep yourself busy so you have less time to think about your illness. Don’t think about having a mental illness, just carry on with life. Work if at all possible, even part time, because you’ll feel more like a normal person if you are working.
JACKIE: Over the past few years I’ve been experimenting with what to do to keep myself well. I stopped drinking alcohol and I’ve stayed well ever since. I try to keep a structured life with a schedule so I have things to do. That keeps me focused rather than in a dreamy world.
Helpful Medication Tips
INVEST IN A MEDICATION REMINDER BOX The see-through boxes are the best. Fill it once a week to help you keep track. When you fill it and see you will run out soon, get a refill immediately.
KEEP TRACK OF YOUR MEDICATION HISTORY. Use the medication log at the end of this chapter or get a notebook to enter each time you get a new medication. If possible, also keep track of dose changes.
If your doctor changes your medication, write down the reason. That way you may prevent unnecessarily retrying a medication that causes you problems or does not work.
Healthy Habits
VAN: Keeping busy, continuing with medication, continuing with therapy, continuing communication, family support, decreasing things that make you anxious, using breathing exercises—that’s one of the best things.
SAMANTHA: I attend my groups, I talk to my counselors, I talk to my parents, and I take my medication. I do what I need to do for myself. I always ask my mom, “How do you see my behavior? Is anything amiss?” Medication helps me stay well; seeing my doctor and therapist regularly; checking in with the apartment program as needed.
BEN: You need a routine. Medicine. You can’t be erratic about sleep and exercise. If you do a little research you learn that not sleeping is the first symptom for a lot of people. I constantly seek to improve myself, and in doing that I learn more about myself and how to be a better person. When you know yourself you have some control. This means also to know yourself physically, how you are feeling. You are more aware, and that’s really important.
Here is a list of our “top thirteen” tips to staying well: Take mediation as prescribed.
Go to your therapy sessions.
Keep your doctor appointments.
Reduce stress.
Take one step at a time.
Do enjoyable activities.
Do not use drugs or alcohol.
Get plenty of sleep with a regular sleep schedule.
Eat foods that are healthy.
Exercise ten to twenty minutes each day.
Talk with your family and friends.
Know your own warning signs.
Build a routine into your days.
TREATMENT AND REHABILITATION PROGRAMS
Medications are the foundation for recovery, but most people benefit from additional treatments, which are generally called psychosocial treatments. In fact, combining medication and psychosocial treatment is well known to get the best results. Psychosocial treatment is provided when you are in the hospital, in the day hospital, and out of the hospital as well. There are many types of psychosocial treatments, all of which are helpful in varying ways at different stages of recovery. And they are all aimed at helping you regain your health and independence.
Case management services help to coordinate treatment. You may be assigned a case manager who helps you get benefits, find a doctor or a treatment program, and tackle numerous other practical needs you may have as you recover. Since finding your way around the complex medical system can be extremely hard, your case manager may prove to be a key person in your treatment.
Cognitive behavioral treatment (CBT) can be used in many ways to address problems of thinking and behaviors related to your thoughts. CBT training helps to build new coping skills that can be used for numerous difficulties, such as keeping your mood steady, dealing with negative thoughts, improving your attention as you return to school or work, and decreasing use of substances.
Cognitive enhancement treatment (CET), Cognitive remediation (CR), and Cognitive adaptation training (CAT) are treatment approaches designed to decrease difficulties with cognition, primarily attention, learning, memory, and problem solving. There are a variety of approaches to improving cognition, most of which involve practice and finding new ways to approach each individual’s cognitive problems. There is a great deal of research now into finding the best ways to improve cognition. We know now that the brain is a lot like a muscle: the more you use it the stronger it gets.
Double-trouble groups are self-help groups for people with mental illness and substance abuse problems. These groups are run by the consumers with a goal of helping each other give up substances in order to maximize recovery from mental illness. These are special groups run in a similar way as Alcoholics Anonymous groups. Ask your treatment team for information on where to find a double-trouble group.
Family treatments come in several forms. There is psychoeducation for families, just as there is psychoeducation for you. Then there are family groups that may or may not include you. Many people like family groups where members from several families meet together. These are called multiple family groups. But sometimes you may meet with just your family and a therapist or case manager. In all cases, the goal of family treatment is to decrease the problems that you and your family may be experiencing.
Group or individual psychotherapy provides a supportive environment for working on issues of recovery. The therapist will not be exploring your past family issues but will be working with you or the group to move toward reaching your goals. This treatment may include segments on psychoeducation, skills training, CBT, and healthy lifestyles. Most important is that you feel supported and safe to discuss your concerns with your group or individual therapist.
Integrated treatment for people with schizophrenia recognizes that having a dual diagnosis of schizophrenia and substance abuse requires a very specialized approach. The therapist is fully aware that your medications are required to maintain your mental health and that you may experience significant stress as you give up substance use. The therapist will help you address both issues at the same time.
Psychoeducation helps you learn about your illness and its treatment. This is very important because if you do not understand schizophrenia, it may be difficult to make the healthiest decisions about your self-care. This book contains a great deal of psychoeducation, but it is always better to have someone to answer questions and support you as you learn about this very complicated illness called schizophrenia.
Self-help groups are very effective for some people and have been beneficial for people with substance abuse and other problems for many years. It is wonderful to be with peers who really understand your concerns. It is less costly, and best of all, you are doing it on your own. Finding self-help groups is getting easier on the Internet.
Social clubs, drop-in centers, clubhouses, and advocacy groups are wonderful places to find friends, enjoyable activities, and support. Your case manager will be able to guide you to the best social clubs and drop-in centers in your area. NAMI has information on its Web site regarding its Peer-to-Peer program. NAMI is also a powerful advocate for the rights of people with mental illnesses. See the section on clubhouses for additional information.
Social skills training targets problems interacting with people that may develop due to schizophrenia. This training will help you rebuild your ability to communicate and build relationships with those around you. If you notice that you have difficulty keeping a conversation going, being assertive, meeting new people, or interviewing for school or jobs, social skills training could be just the thing for you.
Vocational rehabilitation is important for helping you return to school or work. See chapter 17 for a full description of vocational rehabilitation.
Additional resources:
Cognitive Enhancement Therapy for Schizophrenia. Effects of a Two-Year Randomized Trial on Cognition and Behavior, by Hogarty et al. Archives of General Psychiatry, 2004.
TREATMENT MODELS
Psychosocial treatment is provided in many different ways. Several popular models of treatment—the clubhouse model, assertive community treatment, and the recovery model—are just a few ways people have organized treatment to provide help.
Clubhouse Model
The clubhouse model was developed at Fountain House, a nonprofit organization in New York City, in the 1940s. Through a training program started at Fountain House in 1976, this model has now spread to more than 350 other such facilities around the world.
The clubhouse model, based on the conviction that mental illness is not the whole person and that people with mental illness retain the same needs, capabilities, and aspirations as all other people, is made up of a network of communities. Each community is situated in a clubhouse building where people who seek services participate as members. The community is organized to promote the recovery of members from schizophrenia, bipolar disorder, major depression, and other serious and persistent forms of mental illness.
Participation by members is voluntary. All clubhouse services are provided by the members and staff, who work side by side as colleagues. At the core of the clubhouse experience is the work-ordered day, which intentionally parallels the typical business hours of the general adult community. Together, members and staff prepare daily meals, operate the switchboard, issue a newsletter, run the mailroom, operate an employment placement and support program, manage housing and housing support services, participate in advocacy efforts on behalf of people with mental illness, and accomplish other projects to benefit the life of the clubhouse.
In addition, clubhouses provide support for members who wish to have access to opportunities available in the larger society. Clubhouse-operated transitional employment programs comprise agreements between clubhouses and employers through which members can obtain supported, competitive employment. Supported education programs in clubhouses enable members to return to college or other schools according to their interests, needs, and goals. Clubhouses assist members in acquiring decent housing; many operate housing programs.
The length of clubhouse membership extends for as long as each person wishes. In this way, ongoing support and opportunity, as well as case management and planning, are provided on a consistent and continuous basis. Clubhouses also operate evening and weekend programs, which focus on social and recreational activities and also allow members who are working full-time or are in school during the day to maintain involvement. Members who withdraw or are rehospitalized are encouraged to return through outreach contacts. In all cases, clubhouses focus on members’ strengths, talents, and abilities, providing a place to explore and celebrate, as well as enabling members to rebuild careers and relationships that may have been disrupted by disabling illness.
To find a clubhouse model program in your area:
Call 1–212–582–0343
Write to International Center for Clubhouse Development at 425 W.
47 St., New York, New York 10036
Assertive Community Treatment Model (ACT)
Assertive community treatment is available in some areas of the United States, Canada, and Great Britain. What makes ACT unique is that if you are treated by an ACT team you have 24-hour service available right in your community. ACT teams offer case workers, psychiatric services, help with housing, family support, and many of the various other supports you may benefit from. Do not hesitate to take advantage of an ACT team if it is available to you.
Get more information about ACT from NAMI at
www.nami.org or contact The ACT Association at 810–227–1859 or acta@actassociation.org.
Recovery Model
The recovery model is based on the idea that all people with schizophrenia and other illnesses that affect the mind deserve the opportunity to live as well as they can. This means that even when a person’s symptoms have not fully gone away, he or she can go to work, go to school, have close relationships, and behave just about the same as before illness. In this way, the recovery model can be seen as promoting hopefulness and helping people feel confident and—overall—good about themselves as they are working to recover. It can also be thought of as a way of reducing prejudices from those who do not understand what it is like to have schizophrenia. The Recovery Model is also used for people with addictions to alcohol, marijuana, and drugs.
Important to know: All models of treatment, including the recovery model, stress a team approach between consumers and clinicians. This means that you and your psychiatrist work out a medication plan together. It is never a good idea to stop or change doses of medication without first discussing your plan with your doctor.
For more information on the recovery model, check out these Web sites and books:
Recovery and Wellness, Models of Hope and Empowerment for People with Mental Illness , Mary Donohue and Catana Brown (Haworth Press, 2001).
The Healing Journey through Addiction, Phil Rich and Stuart Copans (Wiley, 2000).
INVOLUNTARY COMMITMENT
Sometimes people are treated for psychiatric illnesses against their will. Involuntary treatment may be in the form of inpatient hospitalization or outpatient doctor visits as ordered by the court. The laws vary greatly from state to state in the United States, but in general involuntary commitment only happens when it appears someone may be a danger to her/himself or to other people. Anyone who is involuntarily committed has the right to go to court. If the court believes you need to be committed (inpatient or outpatient), you will be required to follow the court’s directions for treatment. If the court disagrees with your commitment, you will be free to make your own decisions about treatment.
Clearly no one wants to be forced to be in treatment. One way people take back some control is by use of psychiatric advance directives and by assigning a health care agent. People can make decisions about their care or have someone they trust to have their best interests in mind involved in treatment decisions during episodes of psychosis.
For additional information:
Check your state’s Web site for involuntary commitment laws.
Office of Mental Health (OMH) for each state
ADVANCE DIRECTIVES
Sometimes people do not have a lot of warning before a relapse. It is a good idea to ask your doctor about getting an advance directive, which is a written statement about what you do and don’t want to happen if you become ill and are unable to make decisions. Advance directives in psychiatry allow doctors to make important treatment decisions when you are not well enough to do so on your own. If, for example, you get sick and your thoughts are confused or you are hearing voices, you may not be well enough to make important choices about taking medication, doses, or even whether you should be admitted to the hospital. At such times, advance directives can help.
There are two types of psychiatric advance directives. The first type is the instruction directive. When you are well, you write out clear instructions about your treatment to be followed at times when you cannot think clearly. Instruction directives are similar to living wills, in which people write out in advance their instructions about future medical treatment. The second type is the proxy directive, also known as the medical power of attorney. This assigns someone you trust as a substitute decision maker for times when you are unable to make decisions for yourself. Often, people combine instruction directives and proxy directives into one document so they are assured the best possible care that they would want for themselves.
Advance psychiatric directives are accepted in some form in all fifty states, but certain states are more strongly committed to the concept than others. Also, because these directives are legally complicated, it is best to have a lawyer draw one up for you in the state where you live. You may be entitled to a free legal aid attorney in your community, or you may visit a law clinic; they are frequently found near universities that have law schools. The National Association of Protection and Advocacy Systems (NAPAS) can supply you with information about your state’s laws by referring you to your local NAPAS office. You can call them at (202) 408–9514. There is also information available on the Web at
www.napas.org. The National Alliance for the Mentally Ill (NAMI) frequently includes articles about advance directives on their legal Web site. An interesting, easy-to-read article can be found at
www.nami.org/legal/advanced. html. Additional information and examples of legal forms can be found at
www.bazelon.org/advdir.html. If you do not have access to the Internet, ask your case manager or clinician to help you access this information.
Additional resources:
The Complete Family Guide to Schizophrenia, by Kim Meuser and Susan Gingerich (Gillford, 2006), especially chapter 12 on making a relapse plan.
Me, Myself, and Them: A Firsthand Account of One Young Person’s Experience with Schizophrenia, by Kurt Snyder, Raquel E. Gur, and Linda Wasmer Andrews (Oxford University Press, 2007).
MEDICATION LOG
Enter medication changes in your log along with side-effects and reasons for changing medications. (see page #.)
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