Ten Ways to Avoid Relapse in schizophrenia

In This Chapter

Recognizing the signs of relapse
Avoiding hospitalization
Staying on track with treatment
When the symptoms of schizophrenia subside, keeping them under control and seeing that your loved one lives as normal and gratifying a life as possible becomes a high priority. In this chapter, we give you tools to help you achieve that goal, in the form of ten tips that may decrease the chance of relapse.

Staying on Meds

The best way for a person with schizophrenia to avoid relapse is to continue taking her medication as prescribed. Research shows that medication adherence reduces the risk of relapse and hospitalization.
Make sure your loved one sticks to a regular schedule, taking his medication at approximately the same time each day. If possible, he should link the time he takes the medicine to some regular event (for example, when he gets up in the morning, goes to sleep at night, or at mealtimes) or to some visual cue (for example, leaving his medication on the shelf where he keeps his toothpaste so he remembers to take it each morning.)
Anyone who takes multiple pills is apt to forget whether they’ve taken them. Instead of taking each pill from the vial that the medication came in, your loved one can spend a few minutes at the beginning of each week to set up a divided pill case. She may need your help to do this (either initially or on an ongoing basis), so don’t be afraid to offer. Setting up the case at the beginning of each week will allow your loved one to see whether she’s taken a particular dose.
Complex dosing schedules can make it hard for a person with schizophrenia to adhere to his medication regimen. If a doctor has prescribed one pill four times a day and another three times a day, find out if there is a way that the schedule can be simplified so that it’s easier to remember. Sometimes when medication is first prescribed, it’s prescribed more times over the course of a day, but afterward it can be taken fewer times per day.
Unless they’re very bothersome or dangerous, mild side effects aren’t a good reason for discontinuing medication. If the side effects of medication are bothersome, you or your loved one should report them to her doctor so he can change the medication or the dosage. If you or your loved one feels like the medication is no longer working or not working as well as you hoped it would, find out whether the doctor is willing to make adjustments, change the medication, or add another.
If your loved one feels that taking medication is embarrassing or degrading, remind him that hospitalization and relapse are far worse.
Sometimes people stop taking medication because they’re feeling better, losing sight of the fact that they’re feeling better precisely because they’re taking it. This would be similar to women stopping birth control pills because they hadn’t gotten pregnant that month, or people with diabetes stopping their insulin when their blood sugar levels were restored to normal. If your loved one says she doesn’t need her medication anymore, because she’s feeling better, talk to her about why stopping can be risky.
If your loved one’s medication needs to be refilled from a mail-order pharmacy and he’s running low, or if his prescription is running out and he’s not going to see his doctor soon, call his doctor’s office and let them know your loved one is worried about running out of medication. The doctor may prescribe a small quantity to tide him over until his next appointment or until the mail order arrives.
Don’t wait until your loved one is close to running out of pills to refill her prescription. You never know whether the pharmacy will be closed on a weekend or the mail-order pharmacy will require more time to mail the prescription. Make sure your loved one stays on top of ordering her medications and saving the money she needs to pay for them.
Even co-pays can be costly. If the cost of medication is a barrier, take advantage of a patient prescription assistance program (see Chapter 8).


Considering Depot Medication

Ouch! No one likes the thought of an injection. But if your loved one has already had multiple relapse episodes while taking medication by mouth, it’s possible that by using depot medication (a medication that’s injected so the person doesn’t have to take pills daily) these episodes may be avoided in the future. Depot medication is usually administered only once or twice a month.
Generally, these medications are the same kinds that are given by mouth, but they’re given in a form that’s retained in the body and slowly released into the person’s system. This may prevent relapse for two reasons:
It eliminates the possibility that your loved one will miss his daily doses of medication and guarantees a steady dose at regular intervals.
Medication taken by mouth is absorbed and directly circulated through the liver, where it’s metabolized; medication given by injection is absorbed directly into the body and avoids initial circulation to the liver. This may lead to a more effective use of the medication.
Recently, second-generation antipsychotic medications in depot form have become available (added to the first-generation depot medications, which have been available for some time; see Chapter 8). If while receiving a depot antipsychotic medication, your loved one is showing increased symptoms, it’s possible, under medical supervision, to augment the medication by using an oral form of the medication, to raise the dose between injections.
An injection only once or twice a month may be an acceptable trade-off for having to take (and remember to take) medication at least once and sometimes multiple times a day. Not having to take medication every day may allow a person with schizophrenia to feel like she’s leading a more “normal” lifestyle without constant reminders of her illness.

Recognizing Warning Signs

If your loved one has been diagnosed with schizophrenia, you and that person need to be aware of potential warning signs that might signal a worsening or recurrence of the disorder.
Early recognition, adjustments in medications, modifications in your loved one’s environment, some extra support, or a combination of these things may help avoid relapse. The sooner this happens, the better the odds of warding off a full-blown episode.

Here some of the signs and behaviors you (and your loved one) should be on the lookout for:

Believing unusual things, like that the television or radio are talking to her, or that the smoke alarms or digital clocks in public places are taking pictures of her
Saying things over and over that don’t make sense
Hearing voices in his head
Seeing things she knows aren’t really there
Feeling as if everyone is against him or out to get him
A sudden or gradual decrease or increase in her ability to think, focus, make decisions, and understand things
Thinking he’s so great that he’s world-famous or can do supernatural things Having a hard time controlling her behavior
Having periods of time go by when he doesn’t know what has happened or how the time has passed
Having an unusually hard time keeping her mind on what she’s doing
Retreating from social relationships that were once rewarding
Becoming afraid of common things like going outdoors or indoors, or of being seen in certain places
Feeling like something bad is going to happen and being afraid of everything Being very shaky, nervous, continually upset, and irritable Being unable to sit still
Doing things over and over again — finding it very hard to stop doing things like washing his hands, counting everything, or collecting things he doesn’t need
Doing strange or risky things, like wearing winter clothes in the summer and summer clothes in the winter, or driving too fast or acting like a daredevil
Although any one of these signs taken alone isn’t necessarily a sign of relapse, they’re things worth talking about with your loved one’s clinician before they worsen.
Because everyone has off moments now and then, you need to learn how to distinguish between an occasional lapse (having a very anxious day and getting over it) and a consistent pattern or trend that might signal relapse (such as regularly being too anxious to leave the house to go to school or work).

The following are generally considered signs of a true psychiatric emergency (see Chapter 14):

Feeling like life is hopeless and worthless

Thinking about dying, having thoughts of suicide, or planning to kill herself Taking risks that are endangering his life and/or the lives of others Feeling like she wants to cut herself or hurt herself in another physical way Feeling the temptation to destroy property or commit a crime
If your loved one has any one of these symptoms, you need to contact a mental-health professional, crisis center, or suicide hot line immediately.
Note: The information in this section was adapted, in part, from Recovering Your Mental Health: A Self-Help Guide, a publication of the Center for Mental Health Services (CMHS), which is a part of the Substance Abuse and Mental Health Services Administration (SAMHSA).

Being Alert to and Avoiding Changes in Eating or Sleeping Patterns

Most times, an acute episode doesn’t come on like gangbusters out of the blue. Instead, when you look back, you realize that there were subtle signs for days, weeks, or months that something was amiss. One of the most common signs is a distinct change in eating or sleeping patterns. That doesn’t mean one night of having trouble sleeping or one day of feeling hyper-vigilant — it means a pattern that is different from normal.
Changes in sleep patterns can include
Not being able to fall asleep at night ‘ Not being able to wake up in the morning Sleeping too many hours
Getting only interrupted, fitful sleep during the night ‘ Having excess energy and little need for sleep
Changes in eating patterns can include
Loss of appetite Excessive appetite
Your loved one should try to maintain a regular sleep schedule by going to bed the same time every night. Sometimes this is hard to do, but he can try to establish a bedtime ritual, repeating the same things each evening to help him sleep (for example, reading or listening to relaxing music for an hour before sleep). Sometimes taking a warm shower or bath, or putting lavender on the pillow, can help a person sleep more easily. Someone with schizophrenia should avoid doing shift work (for example, working nights or working day and night for a day or more) or traveling across multiple time zones, which can be disruptive to the circadian rhythms (also called a person’s biological clock, they control the sleep-wake cycle).
Your loved one should try to eat balanced meals and keep track of her weight so she knows that she hasn’t lost or gained too much weight.
Sometimes, changes in sleep or eating patterns can be signs of relapse, but they also can be side effects of various medications. Suggest that your loved one let her doctor know about these changes so he can help figure out why they’re happening and whether they’re any cause for concern.

Recognizing Your Loved One’s Unique Warning Signs

Very often patients and/or families will recognize that certain behaviors or symptoms occur prior to an acute episode. Getting a feel for your loved one’s unique signs is important, so you know which behaviors shouldn’t be ignored. For example, one patient we knew started to withdraw to her room and sleep incessantly whenever she was on the verge of relapse. At first, she didn’t recognize what was happening — until her sister brought it to her attention. Now, she’s vigilant to this cue and consults with her psychiatrist who helps her avert more serious problems.
You and your loved one also need to recognize the specific triggers that may lead to relapse. For example, one young man with a diagnosis of schizophrenia had several failed relationships with female friends that led to breakups. Twice, they precipitated hospitalizations. He learned to approach relationships more cautiously and, in therapy, he found ways to lessen the stress he felt from such losses.

Decreasing Alcohol Use and Avoiding Street Drugs

Although most people don’t think of alcohol as a drug, it is one. The reaction that your loved one has to alcohol will be determined by how much she drinks, as well as what other medications she has in her body.
Alcohol is considered a depressant, and when taken in large enough doses, it can put a person to sleep or even lead to death. Before your loved one was taking antipsychotic, antidepressant, or anti-anxiety medications, he may have been able to drink, for example, two glasses of wine, with almost no effect. However, because medications interact with each other, the effect of two glasses of wine when your loved one is taking other medications may be the equivalent of drinking four glasses. Your loved one can very easily become impaired on an amount of alcohol that previously wouldn’t have affected him in that way.
The safest approach is to not drink alcohol at all, but drinking a very small amount — such as half a glass of wine or a can of beer — isn’t likely to have a severe adverse effect. However, keep in mind that it may not be possible for your loved one to drink a small amount and keep herself from going on and consuming larger amounts.
Some people with schizophrenia sometimes try to self-medicate by consuming large amounts of alcohol in an effort to control their symptoms. Talk to your loved one about this if you suspect it may be going on, and let him know that it’s dangerous. Alcohol does not have an antipsychotic effect, and it can actually make symptoms worse. Let him know that alcohol has side effects and toxic effects. For example, alcohol causes damage to the liver when taken in large amounts over a longer period of time. However, taking alcohol with other medications that may also cause liver damage, may lead to liver toxicity earlier than would be expected from using alcohol alone.
Even over-the-counter medications from a drugstore can be dangerous in certain situations. For example, medications that are used to control allergies, or to help with sleep cause drowsiness; combined with medications someone is already taking, they may lead to excessive sleepiness or even coma.
Drugs of abuse, or so-called street drugs (like marijuana, heroin, or cocaine), should be avoided entirely. There’s now clear evidence that marijuana in someone predisposed to schizophrenia can facilitate the onset of psychosis. Cocaine in itself is known to produce psychotic episodes, and in someone who already has psychotic symptoms (such as those seen in schizophrenia), this can lead to an acute and disastrous situation. Heroin, which is extremely
addicting, can lead to a situation in which the individual not only needs to be treated for schizophrenia, but also requires a detoxification and rehabilitation program to be treated for the drug addiction simultaneously.
Compounding schizophrenia with drug abuse leads to poorer outcomes. So-called co-occurring (dual diagnosis) treatment programs are often hard to find in many communities, but people with co-occurring disorders must receive integrated treatment.

Building an Open and Trusting Relationship with Your Loved One

Although many people with schizophrenia don’t like to admit it, people close to them (family members, friends, and professionals) may be able to spot the first signs of a problem long before they do. For this reason, you need to develop a trusting, supportive relationship with your loved one and encourage her to maintain a regular relationship with a therapist, psychiatrist, and/ or case manager — people who can help her stay in touch with her own feelings about how she’s doing, and who can point out any problems they see.
Be an active listener and a good observer. If your loved one expresses strange or uncomfortable feelings to you, hear her out and repeat to her what you heard (for example, “I’m hearing you say that you’re feeling . . .). Then say, “I know you feel that way, but you really are safe here” or “Let’s see if the doctor can help you think about another medication with less troublesome side effects.” Try to offer helpful options without being judgmental or dismissing her feelings. The only time you may need to be more heavy-handed in suggesting that she seek medical attention is if you observe behaviors that are harmful to herself or others.
Admittedly, watching someone decline is very difficult, and you’re often powerless to change things yourself. All you can do is be there, provide support and guidance, and help your loved one move toward making the right decisions.

Reducing and Minimizing Stress

Stress alone doesn’t cause schizophrenia, but it can exacerbate symptoms and increase the chance of relapse.
Your loved one shouldn’t be too hard on himself — and you shouldn’t be too hard on him either. If he’s just coming out of the hospital or is just entering the workplace, help him devise a way to take small steps to reach his goals. For example, doing volunteer work can help him adjust to routines before he returns to competitive employment. If he’s returning to a position he previously held, part-time work is a nice way to ease his way back into the routines of the workplace. You might suggest whether this is something he can negotiate with his supervisor or the director of human resources. If he were coming out of the hospital after a major illness or after surgery, he wouldn’t expect to return full-time right away; the same is true with schizophrenia.
Your loved one may also need to lower her own expectations or those being placed on her by others. For example, if she was recently diagnosed with schizophrenia, she might need to get her illness under control before she can return to school. In the scheme of things, missing a semester or even a year or two from college isn’t a big deal. It’s common for people to take leaves of absence for all sorts of reasons. If your loved one has already graduated from college and is thinking about graduate school, she may decide that graduate study is too stressful right now and take some time off to work. This may require your loved one to educate the people around her (including you) and directly tell them that she wants to make every effort to reduce the stress associated with certain types of activities.
You can help in this regard, too — for example, if your sibling has schizophrenia, and your parents have always wanted her to be a doctor, you may be able to sit down with your folks and let them know that, right now, your sister is going to work as a lab assistant or radiation technician, but maybe she’ll decide to go to medical school down the road. Let them know that this is a good decision for someone who needs to minimize stress.
When you’ve been ill, social situations can also be stressful. It may be hard for your loved one to face his old friends or colleagues or to feel good about himself at cocktail parties where he meets new people. Tell him to take one step at a time. Suggest that he meet with one friend for a limited period of time — perhaps coffee or lunch — before he meets with groups or spends an entire day with one individual. He may even feel like he needs to spend some time alone dealing with his feelings or talking them over with a therapist before he takes the dive into the social world.
It’ll take time before he’ll feel back to his “old self.” In the meantime, he needs to be comfortable doing less. Suggest that he take one day at a time and gauge how he’s feeling before he takes on more — or too much.
Life often throws curveballs, even when you’re already having problems. A person with schizophrenia can receive a devastating diagnosis of a life-threatening illness, be left by a spouse, lose custody of a child, be fired from a job, or lose a close family member. One family member expressed it philosophically by saying, “Life still goes on,” regardless of whether someone has schizophrenia. Needless to say, these are extraordinary stressors that, in some cases, may be more stressful for someone with a mental disorder. Added stress generally calls for extra support and help — for whomever, whatever the circumstances. So if your loved one is hit with an exceptionally stressful event, make sure you’re there to help him however you can, and pay attention for signs of relapse as well.

Planning Ahead

Sometimes, no matter what a person with schizophrenia does or doesn’t do — or no matter how supportive his friends and family have been — relapse can’t be avoided. For this reason, it’s vital to plan ahead for the possibility of relapse.
Keep a list of the medications your loved one is taking, a short history of previous episodes and how they were treated, and the names and phone numbers of key people and contacts you will need in an emergency. This may include
A crisis hot line or mobile crisis service you or your loved one can call in an emergency
Your loved one’s psychiatrist and case manager
Your loved one’s health insurer (write down her policy number or ID number as well)
The name of the hospital your loved one would like to be in, if hospitalization is required.
Before a crisis occurs, talk to your loved one about the best way to handle a crisis, and put the plan in writing. (You both hope you’ll never have to use it, but think of it like taking an umbrella with you on a cloudy day.) Reviewing past crises can give you a better idea of what works and what doesn’t.
Another aspect of planning ahead is making sure your loved one’s wishes are known and put in writing, before he’s incapacitated in any way, so that his wishes can be carried out. Having advance psychiatric directives and allowing someone your loved one trusts to have healthcare power of attorney for him will allow him to make his decisions and preferences known while he’s thinking clearly.
The Bazelon Center for Mental Health Law (www.bazelon.org/issues/ advancedirectives) and the National Resource Center on Advance Psychiatric Directives (www.nrc-pad.org) are excellent resources for information, forms, and more specific advice for creating advance psychiatric directives.

Hanging in There

It can be disappointing, aggravating, and stressful to watch your loved one adhere to her medication and still hear voices or see things that aren’t there. Don’t dismay. There are behavioral ways to cope with treatment-resistant symptoms (see Chapter 12), and new medications and behavioral techniques are always in the pipeline. For example, some research suggests that humming reduces auditory hallucinations.
Research offers the hope that new treatments will address symptoms and problems that may now seem beyond your loved one’s control and the reach of mental-health treatment. You need to convey this sense of hopefulness to your loved one!

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