Schizophrenia: A Handbook For Families

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What Do I Do About ...?

Many families said that when their relative was discharged from the hospital, they hoped the major problems were all behind them and that their relative was well on the road to recovery. They believed that with proper medication and therapy, their relative would just keep getting better and better until "cured." It came as a surprise to many that there were now new problems to face. Families who have struggled through these problem areas believe that it is best to be prepared.

Refusal to Take Medication

This is one of the most frustrating problems. It may be hard to understand why someone with schizophrenia would refuse to take medication when the necessity of doing so is so obvious to everyone else. Families have found that there are five main reasons why someone might refuse medication.

1. Your relative may lack insight about the illness. Not believing that he or she is ill, he or she sees no reason to take medication. Or, some think that it is the medication that causes the illness. If the illness involves paranoia, your relative may view the medication as part of a plot to prevent him or her from functioning.
2. Your relative may be suffering from unpleasant side effects as a result of the medication and believe that it causes more problems than it solves.
3. Your relative may be on a complicated medication scheme that involves taking several pills a day. He or she may find the regimen too confusing, and may resent the constant reminders of illness.
4. Your relative may feel so well that he or she either forgets to take the medication, or thinks that it is not necessary any more.
5. Your relative may welcome the return of certain symptoms such as voices that say nice things and make him or her feel special.

People with schizophrenia need to take prescribed medication, and the following is a list of ideas and guidelines to help you with this difficult problem

1. Know that the initial medication dose must be continuously monitored. Therefore, you should always listen to your relative's complaints about side effects. Do your best to empathize with any distress about medications.
2. Know that "bad" symptoms (usually the positive, see pp. 8-9) will not reappear immediately upon discontinuation of medication. Anti-psychotic drugs stay in the system for six weeks to three months. This "grace" period gives you some time to deal with the problem. After three months, however, getting back to a maintenance dosage may mean "starting over" at a higher than maintenance level.
3. Explain to your relative that he or she may end up back in the hospital if medication is not taken (this should not be a threat). Some will not accept warnings, and still others may not mind returning to the hospital.
4. If other people in your family are on medication, turn pill taking into a ritual. Everyone takes his or her medication at the same time (even if it is a vitamin pill).
5. It is easier to take one pill a day than six. Talk to the doctor about the form in which your relative is receiving medication.
6. For people who keep forgetting to take oral medication, the use of a weekly pill box can be an effective tool.
7. Never sneak pills into food. If paranoia exists, this will increase it. Trust will never be built up.
8. More people go off oral medication than injectable medication. With injectable, you are sure the person is getting it. He or she can't spit it out, hide it under the tongue, etc. Discuss the pros and cons of switching medications with the doctor. (Health care professionals note that there is a "down" side to injections: possible feelings of humiliation, loss of control, and the potential for build-up of medication over time.)
9. Injectable medication is given once a week or once every few weeks, depending on the type of neuroleptic. Consider arranging a "treat" built around going for the medication - seeing a movie, going for lunch, etc. Let your relative know that you are proud of the way in which he or she is handling the need for medication.
10. Do your best to be calm and reasonable about getting your relative to take medication. If you press too hard, you may make it more difficult for your relative to move to greater independence. A period of learning through experience may be necessary.

Signs of Relapse

With schizophrenia, relapse refers to a return of acute symptoms. As Jeffries, Plummer, Seeman and Thornton state, "Schizophrenia, for the most part, is a 'relapsing' condition, and so it makes sense to expect a return of symptoms and not to be caught off guard." (Living and Working with Schizophrenia, p. 72).

Families have noted that the behaviours that indicate a relapse are usually the same as those that occurred prior to the first episode. Some of the more common behaviours are - sleeplessness, increased social withdrawal, deterioration of personal hygiene, thought and speech disorder and signs of visual and auditory hallucinations (e.g. listening excessively to loud music, usually with headphones, perhaps in an attempt to drown out the voices): Should you become aware of any of these behaviours, call your relative's doctor immediately.

Relapse can occur for a number of reasons, as well as for no apparent reason. Sometimes the ill person has stopped taking medication for a long enough period of time for acute symptoms to reappear. Sometimes the dosage of medication is not high enough to prevent the return of acute symptoms. Perhaps the person afflicted is not receiving enough support, either at home or from community services. Perhaps the individual has recently experienced some severe mental stress - the death of a loved one, the loss of a job, the move to a new place to live. Sometimes the individual is simply physically exhausted, or is using alcohol or street drugs in an effort to feel "better" briefly. Sometimes the cause may be something that can be dealt with quite easily. For example, medication can be increased, a brief hospital stay can be arranged, more support can be found.

Health care professionals warn that relapse can occur during a period called "self-cure." (This also occurs in other illnesses, such as diabetes and arthritis.) Usually, such an attempt occurs three to five years after a diagnosis of schizophrenia has been made. It is a time when the ill individual, tired of the disease, decides to take matters into his or her own hands. He or she may-stop taking prescribed medication, may join a cult, may try to "exorcise" the illness out of the body, may do strenuous exercise to get rid of it, may consume vast quantities of vitamins or herbal medicines, and so on.

A relapse is very disappointing, but as one mother said, "People with schizophrenia are not much different from people suffering any other disease, especially if you are dealing with young people. They won't follow proper health care or eat nutritiously; they forget medication; they skip medical appointments; they may have a 'who are you to tell me' attitude."

Many families have found that they can come to an agreement with their relative, when well, about what to do when facing the possibility of relapse. This is discussed with the individual and his or her doctor. For example, one family made it clear to their son, who had behaved extremely aggressively in the beginning, that if he ever threatened violence or damaged property again he would have to leave home. He could go to the hospital in a taxi, with the police, or with his parents, but he would not be permitted to remain at home any more. They told him that because he was of age, they would even charge him with trespassing and call the police should he break his agreement.

Other families, dealing with someone with less aggressive tendencies, found that it was sufficient to tell the individual that he or she could continue to live at home as long as he or she agreed to get help, should relapse occur.

Once again, families stressed that they have found that knowing the course of the illness in their relative is most important in taking steps to avoid a relapse. Many of the people who have schizophrenia and who have come to terms with it have learned to watch for signs of relapse and to call their doctors. Some have even learned to phone the police when they feel themselves losing control. You may find it helpful to discuss the advantages of developing a "signs of relapse" list and a "strategies" list with your relative, as some do to help themselves get through the bad times.

Embarrassing Behaviour

Families suggest that embarrassing behaviour can be dealt with in two ways: clearly outline and reach an agreement with your relative about what behaviour will and will not be tolerated, and examine your own attitude about why you are allowing yourself to be embarrassed.

Families have found that coming to an agreement about behaviour is sometimes a lot easier than people think. One woman related the following story: "In monitoring my daughter's behaviour, I often tried to find just the 'right' way of dealing with it. I wanted to correct in a positive way so that her feelings wouldn't be hurt. As a result, sometimes I did nothing, because I couldn't figure out what to do. For example, one day my son told me that whenever he had friends over, his sister would join them and do embarrassing things. Could I please do something about it? I spent days trying to decide how to handle this situation wisely. Then my son told me he had handled it himself. He simply told his sister, 'When I have friends over, I want to be alone with them.' My son was direct and honest and no feelings were hurt."

Many families agree that the direct approach can sometimes work well. Saying something like "Stop that," or "Knock it off," or "That's inappropriate behaviour," changed the behaviour. This may have to be repeated. Families say that you have to realize that sometimes your relative is not aware of acting in an inappropriate manner, and therefore a simple statement from you will serve the purpose. For example: "Please don 't smoke in here, Mrs. Jones suffers from asthma."

Families may find themselves "bargaining" for suitable behaviour, but they should weigh the risks carefully before doing so: "If you do this, or don't do that, then we'll go out for dinner, buy that new record, go for a drive," and so on. As always, your ability to achieve results will depend upon a realistic assessment and acceptance of the problem. Remember that some behaviours will take longer than others to correct. Much patience is needed.

Sometimes no amount of intervention works, and embarrassing behaviour will take place on the spur of the moment. This is when families stress that you need to examine your own attitude. Why are you allowing yourself to be embarrassed by someone you know is ill with a disease that interferes with brain functioning? The answer, of course, as with all embarrassing behaviour, is that we assume that everyone is looking at us, and thinking that there is something wrong with us, not with the person who is behaving inappropriately. This is true whether or not the person is a spouse who has had too much to drink at a party, a two-year-old throwing a tantrum, or a teenager with schizophrenia dancing naked on the lawn. The problem is that when we allow our self-esteem to suffer because of someone else's behaviour, we can no longer deal effectively with that behaviour. Mixed with this may be genuine concern that the person is losing the esteem of others - "There goes John's chance of making some friends."

Families who have worked through this problem of attitude feel that if necessary, they are now able to take a responsible role in assisting their relative - without taking blame for embarrassing behaviour that might occur. They have undergone a shift in outlook and realize that it is the "onlooker" who may have an attitude problem. Often, they now feel saddened, rather than embarrassed, as they watch their relative struggling to adapt to the world of "normal" behaviour. They suggest one keep in mind that if the family member who is suffering the most is not the person who is ill, something is wrong and you should seek professional help.

Here are some suggestions for dealing with your relative's sudden or impulsive actions.

1. Take immediate steps to stop or change the behaviour.
2. Be firm, sometimes angry, but never abusive with your relative.
3. Be polite to bystanders. Assume that they are understanding and tolerant.
4. If necessary, apologize and explain the situation to anyone involved in the incident.
5. If warranted, offer to pay for damages, clean up the mess, explain to whomever, and so on.
6. Keep your sense of humour.
7. Share the story with someone you know will see its "funny" side.

Disappearance

This can be a difficult problem for families. Frequently, persons with schizophrenia decide that somehow a new location will provide an answer to the problems that the illness has imposed on them -- or they may be directed by "voices" to leave. They simply take off. If their relative is a minor, the family should contact the Missing Persons Bureau of their local police department. Remember that if your relative is legally of age the police may have no authority to return your relative or inform you of his or her actions or whereabouts.

It may happen that your relative leaves the hospital before treatment has been completed. If he or she is an involuntary patient, the hospital is responsible for notifying the police to look for and return the patient to the hospital. In some jurisdictions, if the police have been unable to find a missing involuntary patient within a certain period, the hospital then has the right to discharge the person.

A voluntary patient of majority age has the right to discharge him or herself at any time. The attending physician (or physicians if two signatures are required) may decide to change the person's status from voluntary to involuntary, if the person is sufficiently ill to meet the requirements for doing so. The patient will not then be allowed voluntary discharge. This option is also open to the attending physician(s) if the person has simply walked away. The police can then be asked to look for the individual.

Often, relatives may simply have to wait until the patient surfaces. This may happen when the person has been picked up as a vagrant, has gone to a hostel, or has been taken to a hospital for help. Then, (unless the police have been involved) you may make arrangements for the person to return home or consider other options. For example, if the person is under treatment when located and this appears to be working well, consider leaving him or her until treatment has been completed.

What are the things one can do?

1. If your relative says anything about places he or she is interested in or would like to see or visit sometime, jot it down. It could be a useful clue as to where to look should your relative disappear.
2. If your relative decides to travel, try to think of some effective way of staying in touch. For example, one father arranged with his son that he would keep his son's money for him. Then, whenever the son let him know he needed some funds, he would send him some-not too much. He found this to be an effective way of maintaining contact.
3. If you have lost touch with your relative for a period of time, it is wise not to wait too long before you begin checking. Although the police may have no basis for active involvement, it is worth speaking to Missing Persons and telling them your story. They may be able to help by doing some checking, or with some practical advice.
4. If you have some idea where your relative may have gone, get in touch with your local SSOC chapter or the national office in Toronto. They may be able to help you through a provincial association or chapter in the area where you think your relative may be. If travel to the United States is a possibility, contact the National Alliance for the Mentally Ill (NAMI) directly or through SSOC.
5. Check with local voluntary agencies such as the Salvation Army. Sometimes a missing relative will show up in one of their hostels. Also your church may be able to help, particularly if your relative took a keen interest in religion.
6. If you decide to use the services of a firm of private investigators, determine if the firm you select has strong connections with the police. (They may be able to get help from this source which you wouldn't.) Discuss with the firm a reasonable limit on its expenses, including the fee, to undertake a realistic search on your behalf.

Risk of Suicide

With schizophrenia the possibility of suicide is an ever-present fear. The illness involves depression, delusions and sometimes command hallucinations that may tell the person to attempt suicide. There is a tendency to act impulsively. Torrey noted that an estimated 10 percent of all patients with schizophrenia kill themselves (Surviving Schizophrenia, revised edition, p. 123). As in the general population, men are more likely to complete suicide, while women attempt it more often. Suicide, when it happens, occurs most commonly during the first five years of illness. After this, the risk drops considerably. Torrey suggests that "Those at highest risk have a remitting and lapsing course, good insight (i.e., they know they are sick), have a poor response to medication, are socially isolated, hopeless about the future, and have a gross discrepancy between their earlier achievements and their current level of function." (Surviving Schizophrenia, revised edition, p. 124).

Sometimes a suicide is methodically planned and deliberately committed. At other times, a suicide may be accidental - that is, the victim is acting out a hallucination or delusion when in a psychotic state. Families caution that in either of the above situations, there are some preventive measures you can take, although you can never guard completely against the possibility of suicide.

Here is a list of behaviours that may indicate suicide is being contemplated.

• Your relative talks about suicide: what it would be like to die, how to go about it, comments such as "When I'm gone...," and so on.
• Your relative is concerned about having a will and about the distribution of possessions. He or she begins giving away treasured possessions.
• Your relative expresses feelings of worthlessness: "I'm no good to anybody."
• Your relative shows signs of hopelessness about the future: "What's the use?"
• Your relative is showing signs of hearing voices or seeing visions that may be instructing him or her to do something dangerous.

All talk of suicide or self-harm must be taken seriously. It is not true that someone who talks about suicide rarely does it. If your relative begins to talk about suicide, or inflict wounds - no matter how superficial - upon him or herself, it is vital that you reach your relative's therapist immediately. If this isn't possible, take your relative to the hospital where he or she was previously admitted, or to the nearest emergency department. In many communities, there is a suicide phone "hotline" available.

If suicide is attempted, and you are the one who discovers your relative:

1. Phone 911 immediately. (If this service is not available in your area, call the emergency number of the nearest hospital.)
2. If appropriate, and if you are familiar with it, perform CPR (cardiopulmonary resuscitation).
3. Phone someone to come and be with you, whether it is at the hospital as you wait for news, or at home to take care of you. Although it is perhaps not likely, be prepared for the possibility that the hospital may not admit your relative, even after a suicide attempt.
4. Get in contact with your local support group, if there is one, and let them know what has happened.
5. Do not try to handle the crisis alone.
6. Do not hesitate to contact other support groups that deal specifically with grief and bereavement

Often, when someone commits suicide, the family members, if they belong, stop coming to support group meetings. The relatives of suicide victims may believe that their presence is too depressing for other members of the group. Families in support groups urge these people to keep attending meetings. As one father stated, "When a relative develops schizophrenia, the support group becomes your family, because so often you lose family and friends. Now, when you've lost your relative, you need your new family more than ever."

Trouble with the Law

Unfortunately, a significant number of people with schizophrenia find themselves in trouble with the law. Offences may range from shoplifting, mischief, assault or ordering a meal at a restaurant and refusing to pay for it to much more serious charges such as aggravated assault, arson or murder.

Should your relative be charged, try to secure the services of a lawyer who is familiar with the problems of schizophrenia. You should be able to determine this by questioning the lawyer about his or her knowledge of schizophrenia and its impact on the individual. In the course of their law practices, most criminal lawyers have defended clients with psychiatric disabilities and therefore have some knowledge of schizophrenia. As well, most criminal lawyers do accept clients supported by legal aid.

Families often think that the legal defence for someone with schizophrenia charged with an indictable offence should be based on a plea of "not guilty by reason of insanity." This requires that the person be assessed under subsection 16 (2) of the Criminal Code as having "disease of the mind to the extent that renders the person incapable of appreciating the nature and quality of an act or omission or of knowing if an act or omission is wrong." This test is a legal one designed to determine the degree to which the individual is to blame. This is not an assessment of the degree to which the person may be mentally ill.

If the plea is upheld, the result will take the form of a Lieutenant Governor's Warrant under which the person will be held indefinitely in the forensic unit of a psychiatric centre or discharged "either absolutely or subject to such conditions as he (the Lieutenant Governor) prescribes" in accordance with the provisions of section 614 of the Criminal Code.

The Criminal Code provides for the establishment of an Advisory Review Board in each province. These Boards are required to make annual reviews of all those held under Lieutenant Governors' Warrants in their respective provinces.

A criminal lawyer will always counsel against such a plea in cases where the charge is minor, because a finding of "not guilty by reason of insanity" is a potential life sentence.

The defence lawyer and the lawyer for the prosecution may sometimes agree on a joint submission as to disposition of the case and explain the circumstances of the person on charge and the illness to the judge. The judge may then choose to give a suspended sentence, with probation, and require that the person receive treatment and take any prescribed medication.

A major concern with Lieutenant Governors' Warrants is the potential for a lifetime of confinement. Those held in custody may be released only by the Advisory Review Board, either absolutely or under such terms and conditions as the Board may establish. These provisions in the Criminal Code were designed to recognize the need to protect the public in situations where the past behaviour of the individual was extremely serious and future behaviour is unpredictable.

One father reported that the Lieutenant Governor's Warrant imposed on his son has at least had a positive effect in restraining his son's behaviour. The young man understands that if he does not conduct himself in a law-abiding manner, he runs the risk of being sent away again to the forensic unit of a psychiatric centre for an indefinite period. Make no mistake, however--it is still indefinite confinement. It should only be viewed as a last resort, where the individual's behaviors a serious and ongoing danger to others. It is by no means the answer to disruptive behaviour short of that level of seriousness.

Money Problems

Many people with schizophrenia have trouble in handling money matters. This can present families with some awkward situations. Some of these may be beyond an immediate or a ready solution.

Normally, where a patient is entitled, he or she will receive help at the hospital to complete arrangements for welfare benefits. In this situation, your relative will then receive a monthly income that is under his or her complete control. Most will need a good deal of help in learning how to budget properly to meet such basic items as rent or board, food and transportation. They need to know that their spending over and above regular monthly needs should not exceed what is left.

For many this is difficult, at least at the start. When a substantial sum is available (for example, on receipt of a welfare cheque), many tend to "blow" all or a large part on impulse spending, often foolishly, or to give their money away to friends -- even to strangers. Families find that they are then called upon to make up the amount needed to cover neglected basic living expenses. Behaviour of this sort, although not surprising for someone with few chances to enjoy life, is disconcerting for families and requires that they exercise a good deal of patience.

For the individual, managing money well is an important step toward the achievement of greater independence. In situations where families are providing money regularly to a relative with schizophrenia, Torrey suggests that one approach is "...to link autonomy in money management to other behaviour indicating independence ... the successful performance of chores is another way that schizophrenic patients can demonstrate that they are ready for greater financial responsibility." (Surviving Schizophrenia, revised edition, p. 291). This strategy provides an incentive to the person to learn how to deal better with money matters, and is also a way for families to avoid getting into the habit of only doling out money in small amounts, when this is no longer necessary.

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