In This Chapter
Helping your loved one fit in
Coping with troublesome behaviors
Fostering independence
Finding information, support, and advocacy
There’s no instruction manual for helping a loved one with schizophrenia live as normal and productive a life as possible. Although topics like this one are invaluable, most of the skills necessary to cope with schizophrenia are learned through on-the-job training — for both the family and the person with schizophrenia. It’s definitely not easy with a disease as baffling to understand, frightening to witness, and challenging to treat as schizophrenia.
The challenges of integrating a person with schizophrenia into both the family and into the community can be stressful, depressing, and anxiety-provoking for everyone involved. In this chapter, we focus on coping skills that will benefit both caregivers and patients in learning to live the best life possible with schizophrenia.
Helping Your Loved One Live with Others
Schizophrenia’s impact often extends far beyond the individual directly affected by the illness. As with many mental illnesses, schizophrenia leads to behaviors that make it difficult for the individual to fit into not only the family, but also the community at large. Because schizophrenia is a poorly understood, and often feared, diagnosis, educating not only yourself and your loved one, but everyone else who comes in contact with your loved one can be a big part of your job.
Keep in mind the following:
Chronic mental illnesses affect more than one person. Schizophrenia creates collateral damage and is likely to have implications for the whole family (parents, spouses, children, siblings, grandparents, uncles, aunts, cousins, and so on), as well as friends, acquaintances, co-workers, and classmates. This leads to stress for the whole family.
Brain disorders affect every aspect of life. Any brain disorder can have a profound effect on health, employment, finances, social ties, and relationships.
Schizophrenia requires a long-term mindset. Part of coming to terms with the illness (see Chapter 11) is realizing that schizophrenia isn’t a one-time illness; it requires the support of family and friends over the long haul. It also means that your job as teacher, cheerleader, and community liaison for your loved one is never done — new situations requiring new learning skills and new coping mechanisms will continue to arise.
The stresses you feel as a caregiver will change over time. The period before and soon after diagnosis is often the toughest on caregivers.
In this section, we show you ways you can help both your loved one and yourself cope with the stress of living within a community, any community — whether it’s a family unit or a city — when you’re dealing with schizophrenia.
You don’t need to reinvent the wheel. People who have been there before you (other consumers, family members, friends, and professionals) have practical advice to share. Don’t hesitate to draw upon their experiences to make your own less stressful.
Understanding the unique stress factors of mental illness
Any chronic disorder causes stress, but mental illnesses like schizophrenia come with their special stressors, which require special coping mechanisms:
The disease usually has a long-term chronic course. Schizophrenia can be managed and controlled but not cured, which means that you and your loved one are going to have to deal with schizophrenia for a lifetime — a daunting thought under the best of circumstances.
People with the disorder often lack insight into their own illness and may be their own worst enemies. They may not recognize that they’re sick and need help.
Your loved one will likely have to take medication for a long time, if not for the rest of his life. Some people resent this constant reminder of their illness and experiment with changing doses, going on self-proclaimed “drug holidays,” or going off medication altogether with grave consequences.
More than medication alone is necessary to enhance a person’s sense of self-esteem and ability to function. This means that either you or your loved one will have to find, pay for, and coordinate a range of treatment, basic services, and supports.
The ups and downs of the illness make its course and your life unpredictable. Things can be going along fine, and then they’re suddenly derailed. This leads to anxiety and worry about when the next shoe will drop and makes it hard for families to plan ahead, even something as simple as taking a vacation.
Crises will occur; although many can be avoided, some cannot. This inevitably leads to setbacks, frustration and disappointment.
The apathy that often accompanies schizophrenia can be aggravating to others. You need to remember that your loved one isn’t simply being lazy or provocative — and keeping this in mind when you’re frustrated or at your wit’s end can be tough.
Any serious illness is likely to take a toll on family life and causes disruptions. It may necessitate time off from work for doctors’ visits or hospitalizations and lost opportunities for participation in leisure and social pursuits.
Professionals may care, but they tend to come and go; family is the most constant influence on the individual with schizophrenia, filling in the gaps whenever necessary.
Improving communication skills
Communicating with people who have schizophrenia is often difficult, for a number of reasons. Here are some of the main barriers you may encounter:
Your loved one may be fearful of you (because of suspiciousness or paranoid thinking) and, therefore, may not want to communicate.
She may be too sleepy — because of medication side effects — to listen or to speak.
Your loved one may not hear what you’re saying because he’s distracted by voices or other stimuli in the environment.
She may not understand what you’re saying because of anxiety or difficulties processing information.
Your loved one may not be able to act on what you’re saying because of lack of motivation or inability to carry through.
Each of these problems may make it hard to get your message across or to have a meaningful conversation. But communication is an essential part of life, and you need to find ways both to communicate directly with your loved and to help him communicate with the larger world.
Here are some techniques that have proven helpful under these circumstances:
Remember that timing is everything. Try to approach your loved one when she’s most likely to be willing and able to communicate with you. Try to find a time when she’s relaxed, as opposed to upset, anxious, distracted, or angry — especially if you’re bringing something up that may be emotionally charged.
Speaking about tough topics may be easier in the morning (when your loved one is rested and fresh) than it is at night (when she’s sleepy). Conversely, if she’s having a hard time getting up in the morning, it may be better to talk later in the day. Unsure? Ask your loved one when she would like to talk.
Make sure you don’t talk too much. The amount of time that your loved one can comfortably tolerate is something you’ll have to gauge with experience.
Respect your loved one’s body language. If he’s pacing, tapping his foot, or otherwise appears agitated, put off your conversation for another time. Instead, take a walk, take a drive, have a snack together, or watch TV.
Pick your place. Because your loved one may have a hard time with competing stimulation, pick a quiet place with as few distractions as possible. Is he more comfortable talking at home, riding in the car, or sitting on the grass at a park? Unsure? Ask him.
Choose the right medium. Talking face to face may not always be the best way to discuss difficult topics. Talking on the phone or via e-mail may be easier and less stressful in certain instances.
Tone is difficult to convey via e-mail, so make sure that you word your messages carefully so that they aren’t misinterpreted.
Keep in mind that emotions run in two directions. If you’re the one who’s upset or emotionally charged, it may not be a good time for you to begin a conversation. For example, if you found that your loved one did something that sabotaged his job and you feel furious, wait until you calm down a bit to find out more about what happened and why before starting a heated argument about it.
If you begin talking and the person gets very upset or things don’t go smoothly, think about stopping the conversation and picking it up again when you’ve both had a chance to simmer down. Say that you’re sorry to have upset him, that you don’t think it’s a good time to talk, and that you’ll talk about it again at another time.
Keep it simple. Try to be brief, clear, and direct. This is no time to use ten-dollar words. You want to make sure you’re getting your point across. Try to keep you discussion simple by expressing or responding to one idea at a time.
Don’t automatically assume that your loved one understands you. She may not be getting what you’re saying (or may not really be aware of what you’re saying) but doesn’t want to admit it. If you aren’t sure you’re getting through, repeat what you said a different way, or ask your loved one to restate what you said in her own words.
Be respectful of your loved one. Whether the individual with schizophrenia is younger or older than you, treat him as an individual worthy of respect. Try not to sound demeaning or overly critical, or to act in a patronizing manner. For example, don’t scold your adult daughter in the tone of a voice you would use for a toddler. Don’t treat the person as if she were mentally deficient, and don’t say things that are rude, abusive, or hurtful. Never make fun of the person’s illogical thinking. When someone is upset, he isn’t likely to understand humor.
Because a person with schizophrenia may be very sensitive, if you have something critical to say, be careful not to say it in front of other people who don’t need to hear it.
Be an enabler (in a good way). When you think that your loved one wants to say something and is having a tough time expressing it, openly ask if he wants to tell you something. He may just need your help in starting the conversation. One way of doing this is to ask simple questions, modeling what the person may want to say, to see if he responds. You could say, “I think you’re disappointed about not getting that job you wanted so badly, aren’t you? But maybe it really wasn’t a good fit.” Just make sure you don’t fall into the role of an interrogator or put words in the person’s mouth.
Be honest but supportive. If your loved one has done something that you disapprove of (for example, dropping out of a job-training program or deciding to stop taking a necessary medication), you need to be candid about your disappointment but also understanding and supportive. For example, you might say, “I’m sorry that you weren’t able to continue attending the program, but I hope you’ll feel better about going next week” or “I think that the lithium really helped manage your mood swings, so I hope you’ll talk to your doctor about your decision to stop taking it.”
Keep the lines of communication open. Remember the importance of maintaining an open relationship with your friend or relative. If you react too critically to what she says, you effectively cut off communication. After a conversation about difficult things, try to keep the communication light. Talk about movies, TV, sports, or anything she’s interested in that’s free of conflict.
Reducing stress
Stress takes a toll on anyone’s physical or mental health, but it can be particularly toxic to a person diagnosed with schizophrenia: Too much stress can worsen symptoms or even precipitate relapse. Although it’s impossible to eliminate all stress, reducing stress whenever possible will make your life and your loved one’s easier in the long run. Identifying stressors and giving your loved one tools to reduce stress will pay dividends for everyone.
People with schizophrenia are likely to be sensitive, experiencing stress in situations where you might not. They also tend to react to stress in an exaggerated way. For example, even a minor change in your loved one’s schedule or environment can be a significant stressor. Anticipatory anxiety, such as having plans to go to dinner with a new friend, may make your loved one feel very nervous and anxious about what to say or what to do. Changing jobs, apartments, or therapists may throw him into a frenzy. Even sustained contact with another person for too many hours in a day may be hard for your loved one to bear. A trauma, such as the loss of a friend or the death of a parent, may be so stressful that it leads to severe depression or psychotic thinking.
Stress also takes its toll on caregivers, who are more likely to be depressed and have physical problems like diabetes and heart disease, than those who aren’t caregivers. Caregiving can be physically demanding and emotionally draining for people who are juggling multiple responsibilities — such as holding down a job, caring for children, and then also caring for a spouse with schizophrenia.
Signs of stress aren’t always obvious. Here are some indicators that your loved one (or you!) may be experiencing stress overload:
Problems sleeping (either getting too little sleep or sleeping too much)
Changed eating patterns (eating too little or too much)
Irritability
Anger
Anxiety
Sadness
Fatigue (most of the time, as opposed to just occasionally or just at bedtime)
Physical problems (like headaches, pains, or gastrointestinal problems)
Loss of interest in things that are generally enjoyed (such as sex, socializing, and so on)
When one person in a family — or one person among a group of people who live or work together — is stressed, it’s likely to have a negative spill-over effect on the people around him. Conversely, relieving stress can have an exponential payoff — for more than one person.
You can control and minimize stress. Here are some ways to lessen stress — both for your loved one as well as for yourself:
Set priorities. It’s easy for people with schizophrenia to feel overwhelmed. This is particularly true after someone who has had an acute psychotic episode is just getting back to her normal activities, which may suddenly feel as difficult as climbing Mount Everest. Transitions of any kind can be especially stressful — moving to a new apartment, taking on a new job, adding new responsibilities to an old job.
Some of the symptoms of schizophrenia make it hard to focus, making it especially important for your loved one to identify and order her priorities and stick to them.
Written lists can be extremely helpful if your loved one has trouble remembering what she needs to do next or prioritizing. Suggest that she make a list of the things that need to be done, rank the items in order of priority, and cross off each task when she completes it. There’s something very satisfying about going down a checklist and marking things off! (If your loved one is comfortable with a computer, Web sites like Remember the Milk [www.rememberthemilk.com] can be helpful list-making and memory tools.)
Help your loved one break big tasks into little ones so they don’t feel so overwhelming. For example, the first step to going back to school might be to take one class; the first step to getting back to work may be volunteering for a job; the first step to taking a shower may be picking out clothes to wear; and the first step to making a friend may be learning how to smile when you meet someone new.
Caregivers often feel stressed when they fall into the trap of thinking they can do it all. Chapter 11 provides some tips for avoiding caregiver burnout.
Get physical. Exercise and physical activity help reduce stress. Make sure that you and your loved one are both getting regular exercise. If your loved one has no motivation to exercise, find ways to be encouraging. For example, suggest taking regular walks together or give her a gift of membership in a health club or gym. Even owning a dog can encourage people to get outdoors and get moving.
Get a pet. A number of studies have shown that having a pet can reduce stress — spending time with animals is associated with decreases in heart rate as well as blood pressure. For people with serious mental illnesses, pets also provide the benefit of companionship and help ward off loneliness.
Having a pet entails responsibility so this needs to be factored into the equation. If a dog or cat is too much of a hassle to care for, similar benefits can be achieved by keeping an aquarium with fish. Or maybe your loved one can volunteer at a local animal shelter — he’ll get the dual benefits of spending time with animals and easing back into the workforce through volunteering.
Take a deep breath. Meditation, breathing exercises, and yoga can help reduce stress. These activities lower the heart rate, slow down breathing, and lower blood pressure — all of which make you feel calmer and less stressed. Because they aren’t treatment per se, they’re socially acceptable, come without a stigma, and offer opportunities for meeting new friends.
Laugh. Anything that produces a hearty laugh, like watching old sitcoms on TV (like I Love Lucy, Seinfeld, Friends, or Everyone Loves Raymond) can help reduce stress. Studies have shown that laughter can reduce certain stress hormones.
Find a hobby. Whether it’s playing a sport, following a sports team, knitting alone or in a group, or going to the movies, finding something that interests you and keeps your mind off yourself and your problems is an excellent stress reliever.
Try to plan and stick to a routine. Because people with schizophrenia often have difficulty adjusting to change, setting up a predictable routine so that things are done pretty much the same way and at approximately the same time each day is helpful. This is especially important for eating and sleeping. When changes to the routine are made, they should be done gradually.
Mix it up occasionally. As comforting as routines may be, everyone seems to benefit from an occasional change. If you find that your loved one is feeling very stressed, think about how you can help her get “unstuck.” A mini vacation — like going for a ride in the country on a spring day or spending a day at the beach in the summer — may help reduce stress and restore equilibrium.
Allow for a “bad hair day.” Things happen that can throw someone off kilter, and they have nothing to do with the person’s illness. A coffee spill on a new suit, a supervisor who came to work angry, or a bus that come late and resulted in a missed therapy appointment. Make allowances for stuff that happens.
Treat it. If other more conservative approaches to managing stress don’t seem to work, you may want to consult your loved one’s psychiatrist, therapist, or case manager. In fact, in the best of circumstances, they’ll recognize it before you do.
Stress often manifests itself as anxiety. If your loved one appears to be uncontrollably anxious, it may be a side-effect of one of the medications he’s taking.
If it isn’t a medication side effect, the doctor may want to add an anti-anxiety drug to control anxiety. Talk therapies (see Chapter 9) may also be helpful in teaching your loved one techniques to lessen anxiety.
Check in periodically. Like anyone else, people with schizophrenia may not always realize when they’re feeling overly stressed. If your loved one lives under your roof, you may periodically ask her how things are going. If she lives elsewhere, call to check in on how she’s feeling. On special days when a person may be more stressed (such as Christmas, anniversaries of deaths, birthdays), be preemptive in making sure your loved one has a good plan for how to handle the day. Just talking to another person about the sources of stress may lighten the load.
Setting realistic limits
Whenever two or more people live together, whatever their relationship, there needs to be some discussion, and probably some negotiating, to ensure that one person doesn’t overstep another’s boundaries. This is especially true when one of the people has schizophrenia, because the symptoms and behaviors associated with the illness often magnify the challenges.
It’s better to have a clear-cut set of limits and boundaries in place before problems occur than it is to try dealing with issues as they arise. The time to sit down and go over rules is when everyone is in a receptive mood, thinking clearly, and able to comprehend what’s being said.
Writing out the rules in a type of “contract” can be helpful. Putting the agreement in writing gives everyone an opportunity to go back and read it when things seem fuzzy.
Setting the rules
When it comes to setting rules, no answers are set in stone — every family’s tolerance for certain behaviors will be different. But to avoid constant conflict, and recurrence of the same circumstances over and over, you need to make sure that you, your loved one, and anyone else living in your home are on the same page when it comes to expectations.
The amount of structure needed will depend on how organized or disorganized your loved one’s mind is at the time. Also, you may need to renegotiate rules as situations change, particularly during transitions (for example, when he returns from a hospital, jail, or rehab program). If your loved one is already living in the household, you may need to set new limits if there’s been a great deal of friction; some rules may need to be relaxed, and others may need to be tightened, to decrease conflict and stress.
When you’re coming up with your list of rules, you need to differentiate which ones are tolerable and which ones aren’t. Some of the areas to consider on such a list are whether your loved one will:
See a clinician regularly
Take medication consistently
Attend a program
Apply for entitlements
Attend school or go to work
Have to maintain certain hygiene standards
Dress in a particular way
Contribute to the rent or other expenses
Adhere to certain house rules
Be allowed to smoke in the house or create a fire hazard
Have access to a car or other means of transportation
Help with certain household tasks or chores Keep certain hours
Refrain from alcohol and/or drugs on or off premises
Refrain from dangerous or assaultive behavior
Try not to concentrate exclusively on the don’ts. Phrasing things in a positive way, such as, “You will wear a shirt and pants in the house” may be more effective than saying, “No walking around in your underwear.”
Setting limits may be helpful even when you’re not living with your loved one. For example, are you willing to pay rent indefinitely for your loved one if she’s able but unwilling to work? Is your loved one allowed to come to your house and drop in unannounced?
An experienced therapist or case manager can be helpful in zeroing in on areas of difficulty that people typically encounter or on the pitfalls specific to your situation. Talk to your loved one’s therapist to avoid potential land mines.
You have rights but also responsibilities in terms of your agreement with your loved one, too. You need to give your loved one a voice in telling you some of her expectations, so the agreement isn’t a one-sided edict. Including your loved one in the discussion and listing your own responsibilities will help enhance her self-esteem, clarify areas that may be muddy, and increase the odds of sticking to her side of the bargain. Some issues that may arise in your discussions may include the following:
How much privacy will you give your loved one in terms of access to her bedroom or access to the telephone or e-mail?
Will you be open to your loved one’s friends visiting your home?
Will you be willing to drive your loved one to work? Will you provide extra financial support?
Are there other ways you can help enhance your loved one’s recovery?
As you make this list, you may realize that you need to set some boundaries in relation to your personal involvement. Realistically, what are you able and not able to do? For example, providing support and care to a loved one with schizophrenia may entail cutting back on your own hours at work. How many hours can you afford to lose without adversely affecting yourself or the rest of your family? Providing constant companionship to your relative may entail cutting back on your own friendships. How much are you willing to give up? Will devoting all your time to your loved one undermine the quality of your relationship with other relatives? When you think through these issues, you may need to find ways to offload some responsibilities to other family members, friends, or professionals.
Enforcing the rules
One of the thorniest issues arising in caregiving is the question of what to do when rules are broken. If the goal of the contract is to support your loved one’s recovery, you don’t want to throw him out on the doorstep except for the most serious offenses. It’s important to distinguish between rules that “would be nice” the rules that, when broken, are real deal-breakers with major consequences, such as removal from the house. Minor infractions call for a less-serious response (for example, reminders, reinforcements, or penalties), whereas serious infraction may demand medical and/or legal intervention.
Most families are (or should be) unwilling to tolerate the following behaviors in their homes:
Assault: Your loved one is not allowed to physically harm you, and you’re not allowed to physically harm him.
Persistent suicidal thoughts or gestures: If your loved one is talking about suicide or attempting suicide, you need to treat this as an emergency and insist that your loved one call his therapist or a suicide hot line (if the therapist is unreachable). See Chapter 14 for more information.
Aggressive or violent behavior toward you or anyone else: If your loved one is aggressive or violent, you need to report this behavior to his clinician and possibly law enforcement.
Abuse of property: For example, throwing or breaking furniture in the home is not allowed. In order to live in your home, your loved one must respect your property.
Engaging in other dangerous, risky, or self-abusive behavior (for example, refusing to eat, driving erratically, and so on).
Breaking the law: For example, if your loved one is using or selling illicit drugs, he’s not allowed to live in your home.
You can negotiate with someone who is relatively stable. But it’s probably useless to invoke punishments for breaking rules when someone is psychotic and out of touch with reality. In this case, the rules are completely different (see Chapter 14) and you probably need outside help — doctors, therapists, police — to help resolve the issue.
Consequences only work if they’re enforced. Don’t threaten consequences that are unenforceable. Thinking of rules and consequences beforehand can prevent you from making idle threats.
Recognizing the role of negative symptoms
Many of the negative symptoms of schizophrenia (see Chapter 3) can lead to behaviors that drive you wild. Understanding obviously psychotic behavior is sometimes easier than it is to understand apathy, apparent laziness, and avoidance behaviors (being afraid or unwilling to engage in life) that, even in the good times, often accompany schizophrenia.
Your loved one may appear lazy but just may not have the energy or motivation required to get dressed or leave the house. He may be having problems comprehending the same work that came so easily before the breakdown. You need to carefully balance support and limit-setting — which is often difficult to do.
Try to not mete out punishments during a time of anger or say nasty things impulsively that you can’t take back. When rules are broken, try to use the modest approach in taking action — if your loved one purposely breaks a plate, tell her that she can’t stay in the kitchen, as opposed to telling her she can’t stay in the house. If your loved one isn’t taking his medication, tell him that he must speak to his clinician about it instead of saying he needs to be hospitalized. If you aren’t sure whether you’re being too strict or playing the role of a doormat, talk about it to a friend, relative, or health practitioner to gain some perspective.
Handling unrealistic thinking
Many times, a person with schizophrenia may say things that have no bearing in reality — statements that are so illogical that they leave you dumbfounded as to what to say next. When this happens, your options are to
Challenge or disagree with something that you know is blatantly unrealistic
Totally agree and accept something that you know to be untrue
Dodge the issue in some way
Only the last approach — dodging — is acceptable. Delusional thinking is virtually impossible to challenge or change. It’s based on a fixed belief that defies logic (see Chapter 3), and you’ll never convince the person about what is real and what isn’t. For example, if your loved one thinks that people in red cars are looking for him, nothing you can say can convince him otherwise. In fact, challenging the statement is counterproductive. He’s probably frightened (hey, you would be, too, if you thought people were looking for you), and challenging him may simply make him agitated, angry, and more entrenched in his position. You also don’t want to reinforce delusional thinking by agreeing with it. In this case, your best bet is either to distract the person and talk about something else or just let it go.
It doesn’t hurt to find something to say in a reassuring manner to calm your loved one down and help him feel safe. For example, “The people in the red cars can’t see into our house, and we’re safe in here right now.” Another approach is to focus on the person’s feeling rather than the content. You can say, “I know you’re feeling very anxious, but I think the feeling will pass if I keep you company for a while.”
If a person is very fearful that harm is imminent, he may strike out at anyone who is perceived to represent a danger. Be careful, and take any threats seriously. Don’t take any chances involving your own safety, or that of your loved one or other family members. No one wants to call the police to calm down a loved one who is out of control, but sometimes it’s the more prudent course of action.
Be sure to distinguish between unrealistic thoughts and delusional thinking — the two demand different responses. How do you know the difference? As you get to know your loved one with schizophrenia, you can sense the difference between the two. Delusional thinking is more fixed, impermeable, and isn’t likely to change no matter what you say.
When a person is just thinking unrealistically (as opposed to having delusions), you can ask pertinent questions or raise alternative explanations to help her think more clearly. For example, if your loved one thinks that starting a small business is easy and anyone can do it, that’s a naive belief, not a delusion. You can provide her with information about the proportion of small businesses that go under, and she may be stubborn, but she’ll probably be open to hearing what you have to say.
Defusing conflicts
Arguments, disagreements, and conflicts are inevitable, even when things are going fairly well. When disagreements arise, you need to give your loved one ample opportunity to speak and tell his side of the story and allow him to hear yours. When people have the opportunity to talk things out calmly and feel that their side is being heard, it often diffuses anger and leads to quicker resolution without making the situation worse.
Never make the mistake of presuming that the other person’s point of view isn’t valid just because the person has schizophrenia. Listen carefully to hear what your loved one is trying to say and make sure you get it right. You can do this by repeating it back so the other person can hear how his side of the argument sounds to you. This strategy will help the other person recognize that, even if you don’t agree, his point is being heard. It can also provide an opportunity to validate his feelings. For example, you can say, “I know you’re very angry that I’m not allowing you to use my car, but I can’t afford the cost of the gas or additional insurance for another driver right now.” This example validates what the person is feeling and also provides an explanation for the basis of the disagreement.
In some instances, consistent disagreements or very intense conflicts over little things may suggest that an individual is having symptoms like anxiety, which should be discussed with a clinician.
Some situations can lead to the potential for an explosive and potentially dangerous situation. Try to recognize the early signs of a conflict and act quickly but calmly to defuse the situation. If your loved one appears to be menacing, try to deescalate the conflict until things calm down or you can get help. Here are some strategies for defusing the situation:
Don’t shout. Speak calmly and softly.
Don’t touch or threaten your loved one.
Keep a respectful distance and tone of voice.
Avoid continuous eye contact, because that can be construed as threatening.
Don’t wave your finger or point at your loved one.
Try to distract your loved one with something else. If that doesn’t work, stick to the topic at hand and don’t bring up conflicts from the past.
Never challenge or dare the person to defy you.
Minimize critical remarks.
Comply with any requests that are safe and reasonable.
If you feel like your own safety is compromised, make that known and do what you have to do to keep yourself safe.
If your loved one has a prior history of self-destructive behavior, you may want to encourage her — while she’s well (and rational) — to use an advance directive that will provide guidance about how she should be treated when she’s ill and irrational (see Chapter 7).
Handling Troublesome Behaviors
Living with someone who has schizophrenia can be extremely disruptive on a number of fronts. You may have to cope with sleepless nights, scuffles with the law, or embarrassing behaviors in front of family, friends, or neighbors, to name just a few issues.
Sleep disturbances
Many people with schizophrenia, as well as those with schizoaffective disorder (see Chapter 3), have sleep issues. Some of these problems may be related to the illness itself; others may be related to medication. Research suggests that these impaired sleep patterns are associated with impaired ability to cope, both socially and vocationally.
Your loved one may sleep too much, which may lead you or your family members to believe that she’s lazy or not meeting her responsibilities. Conversely, your loved one may have insomnia and pace the floors all night, listening to TV or loud music — interrupting the sleep of you and everyone else in the household.
If your loved one has problems getting asleep or staying asleep, and the problems are only occasional, they may be stress-related. Getting more exercise, keeping regular hours, practicing relaxation techniques, and avoiding caffeine may help.
If your loved one is up all night with manic energy or has reversed night and day, psychotic symptoms may be keeping him awake. If sleeping problems persist more than a few days, tell your loved one’s clinician. Changing medication, the dose of medication, or adding a sedative may rectify the problem fairly rapidly.
Bizarre behaviors in public
Some people with schizophrenia may look and behave differently from other people. Often, the faces of people with schizophrenia have a recognizable flat expression that makes it appear as if they aren’t experiencing any normal emotions. Over the years, either because of the illness or because of powerful medications, they may also develop peculiar gestures or odd movements.
Many people with schizophrenia also neglect personal hygiene, have poor grooming habits, or have a lack of insight into or concern about how their appearance is perceived by others. Some of these characteristics are tied to negative symptoms of schizophrenia (see Chapter 3).
Some psychosocial rehabilitation programs focus on providing practical instruction to people with schizophrenia on how to better take care of their appearance. This might include teaching a woman how to apply makeup or teaching someone how to dress for an interview or for a date.
Depending on whether the illness is stabilized, your loved one may say or do inappropriate or embarrassing things in public settings — for example, urinating on a lawn when a bathroom isn’t accessible or taking something from a store without paying. When these behaviors occur, it’s usually a symptom of the illness rather than a reflection of the person’s character or personality. Cognitive behavioral therapy can help a person with schizophrenia learn how to behave more normally in common social situations.
It’s important to help define and redefine boundaries. You need to distinguish between public behaviors that are merely embarrassing and those that may be dangerous and illegal. Talk with your loved one beforehand about which behaviors are acceptable, which aren’t, and why.
Before attending a potentially stressful social event, you and your loved one may want to role-play the situation so he has clear expectations about what to expect. Talking through the sequential steps that will occur can lessen stress and symptoms. For example, if you’re going to a wedding ceremony in a church, you can say that you’re taking a 20-minute drive to the church and that the ceremony and mass will last about 45-minutes and that you’ll be going home after that.
Give your loved one a means of escape if too much tension builds up. Plan in advance how she can manage her stress without acting up or acting out. For example, in the case of the church wedding, you might tell your loved one that if she’s feeling very anxious, she should walk outside to the garden and you’ll meet her there as soon as the ceremony is over.
Bizarre behaviors can be mortifying, but the person with schizophrenia often can’t help his behavior. In embarrassing situations, you have to remember that you love this person, you want him to be able to enjoy as normal a life as possible, and that most people are going to recognize that there’s a problem and not be too harsh in their judgment of you or your loved one. If you think others may not be aware of your loved one’s situation, letting them know about your loved one’s illness before the event can go a long way toward fostering empathy and understanding.
Fostering Independence
When an adolescent or young adult is struck with schizophrenia, the illness often interferes dramatically with the normal progression into independent adulthood. It may interrupt the person’s schooling, interfere with her ability to form social relationships with peers, or limit her opportunities to find and keep a job. Given these barriers, it’s easy for a person with schizophrenia to fall back on family and remain dependent on them.
Families, friends, and clinicians need to help people with schizophrenia be as independent as possible in making decisions and controlling the way they live their lives. Helping your loved one find activities that build his self-esteem and give him a sense that he can succeed is invaluable. Limit criticism and heap on praise for things well done — this can encourage your loved one to try new things and master them.
If you find that your loved one is consistently asking others to help do things he can do himself, you may be (unintentionally) fostering his dependence and inadvertently impairing his ability to do things on his own. Sometimes, therapists can help you see these patterns when they’re not obvious to you. Even in the best of circumstances, the natural instinct of families is to protect — and often to overprotect. Although you don’t want to do a dramatic about-face in your relationship style (which could be upsetting to your loved one), you can encourage him to participate in self-help and peer-support groups to gain self-confidence and acceptance. Increased awareness of your role in fostering your loved one’s independence, combined with taking small steps, can result in big changes over time.
Conflicts about who decides how money is spent are common. People with schizophrenia see money as a sign of their autonomy, while families often worry about whether the person will spend responsibly if she doesn’t know how to save or budget. Use of allowances, entitlements, or job earnings is a topic that can be discussed with therapists to avoid conflict and promote independence.
Politically correct terminology
People are sensitive to the words used to describe mental illnesses — and for very good reasons. Words like crazy, mental, and nutcase were and are used to dehumanize and stereotype people with mental disorders.
Plus, sensationalistic and often inaccurate newspaper headlines make it appear as if people with mental disorders are solely responsible for the most heinous of crimes. Until the last decade, the media created such a sense of shame that people were afraid to talk about mental illness. People with these disorders were shunted aside, warehoused in large mental institutions far away from their homes, families, and neighbors.
Although there is growing acceptance of mental illness, discrimination is still rife in employment, housing, and insurance (see Chapter 15). For this reason, anyone touched by mental illness needs to educate others to use the right words, as well as to do the right thing when dealing with people with schizophrenia. With persistence, doing so will lead to a change of attitudes in the next generation.
Here are some of the terms that should not be used:
The schizophrenic: Doctors and other medical personnel have long fallen into the bad habit of referring to people by their disease, such as “the cardiac in Room 4″ (to refer to a person having a heart attack). Schizophrenia is the name of a disease, and schizophrenic should always be used as an adjective rather than a noun. Referring to someone as a person with schizophrenia is less demeaning, as well as more accurate.
Crazy, mental, nuts, loony, bananas, or nutcase: These demeaning terms — and others like them — have no place in anyone’s vocabulary. If you hear people using them, let them know that this is wrong and demeaning, and that you have a loved one with schizophrenia who deserves respect.
Patient: People who are under a doctor’s care are generally called patients. But many people with schizophrenia are offended by this term because it casts them in the role of a patient rather than a person. Alternative terms like consumer, survivor, client, and recipient of care are preferred by many patients and former patients, but there’s no denying that these terms are still somewhat awkward to use and not universally understood by everyone. If you’re not sure what term will make someone feel comfortable, ask that person.
Seeking Support for You and Your Loved One with Schizophrenia
When mental illness first strikes, you experience a gamut of feelings — including fear, guilt, confusion, and loss. No family is ever adequately prepared to understand the strange symptoms of the disease that robs people of their personalities; the complex treatments that control symptoms but do not offer cures; or the fragmented and underfinanced service-delivery system that has gaping holes every place you turn.
Family-support groups, consumer-run programs, and peer support programs provide safe havens where people can talk to others who share their pain and problems. These groups have also provided a platform from which people continue to work collectively to change the face of mental-health research, treatment, and service delivery. Through participation in seminars, monthly meetings, speaker series, annual conferences, family-education courses, support groups, and a telephone help line, consumers and families no longer feel alone.
To find a support group in your area, contact the National Alliance on Mental Illness (NAMI) at 800-950-6264 or 703-524-7600. You can also go to www.nami. org, and choose State and Local NAMIs from the Find Support drop-down list.
