Schizophrenia: A Handbook For Families

Next | Previous | Table of Contents

Returning Home: The Goal Of Independent Living

Family members have a number of concerns about what will happen when a relative with schizophrenia returns home after discharge from the hospital. They need to know how to behave toward their relative, what to say, or what expectations are realistic. Families who contributed to this handbook recommend that you should aim at helping your relative to become as independent as possible, consistent with the extent of the disability. Your relative's ability to do so will depend a great deal upon what he or she was like before becoming ill. The age of onset of the illness may also be a factor in how your relative copes now. Normally, the more skills and social development acquired before the illness, the greater the person's ability to function.

The process of helping your relative move toward greater independence really starts upon discharge from the hospital. Recognize that it will involve much trial and error. Families who have been through this experience urge you to keep the process in perspective in schizophrenia as with any other major illness - heart disease, cancer, diabetes - where the ill individual and the family must learn to cope with new and demanding circumstances. For the discharged person, diet, exercise, work and social obligations will represent a considerable challenge. Taking medication regularly and attending therapy sessions may need to become part of the person's lifestyle for the first time. Other family members will need to learn the most effective ways of speaking to and behaving toward your relatives.

One of the first things you should do before your relative comes home is to think about safety precautions. Although you may be hopeful of a permanent or long-term remission, this is not the experience of the majority of patients. If your relative is disoriented, depressed, or begins to talk of suicide, you need to be aware of the potential dangers of matches, drugs, poisons, sharp objects and so on. Many patients are heavy smokers. You should also decide ahead of time what sort of "house" rules you will need with regard to smoking. If a relative has shown signs of aggression or violence, it may be wise to consider putting locks on some doors. You may want to leave your car locked with the keys in a safe place. Explain the risks involved of driving when tired or sleepy from medication.

At an early stage of your relative's return home, it is advisable to discuss frankly the risks of drugs and alcohol and the question of sex. The approach you take should be consistent with the degree of your relative's maturity. You may wish to consult your relative's therapist about the best way to do this.

People with schizophrenia may be highly vulnerable to the temptations of the street. They need to be made fully aware that the use of drugs or alcohol can impair the effectiveness of their neuroleptic medication. Taken in excess, they may create difficult treatment problems for the attending physician. Heavy consumption of street drugs or alcohol may create symptoms of psychosis difficult to distinguish from those of a psychotic episode caused by schizophrenia. Street drugs taken by injection add an extra danger due to the possibility of infection by the virus that causes AIDS (Acquired Immunodeficiency Syndrome).

Sexual activity may also develop into a problem area for your relative. Although the medication tends to lower the sex drive, this can usually be dealt with by reducing dosages. The vulnerability of young people, because of loneliness, their need for social acceptance, their willingness to trust strangers too easily, and pressure from peers, makes them easy targets for sexual victimization. They are often not aware of the risks they are running. This is doubly so for the young person with schizophrenia. Starved for friendship, they may be driven by desperation into relationships and situations in which they are exposed to infection by AIDS or other sexually transmitted diseases. For women, there is the added risk of an unwanted pregnancy.

Patients of both sexes should be instructed in the use of condoms and birth control methods should they decide to participate in sexual intercourse. Condoms can be obtained without prescription. For women who are on the pill and who think this is enough protection, the risks of such possible infection as gonorrhea or AIDS should be clearly explained.

If possible, families suggest that an ill member should be encouraged to bring friends home. If your daughter is beginning to become friendly with a man, you might tell her that you would like to meet him and would she ask him to come for a meal. You could also advise her to meet her new friend only in public places until she gets to know him well. Explain the problems that could arise from going to a man's house alone.

Persons with schizophrenia are often more at ease with children than with adults. Although this does not indicate a sexual interest, it can, especially with men and children, lead to potential concerns. It is behaviour that should be carefully monitored. Young girls with schizophrenia are vulnerable to sexual advances from adults. For men in the younger age groups, homosexual approaches may occur and may be experienced as frightening. In large cities, such approaches are not uncommon, and reassurance is needed that nothing in your relative's behaviour or appearance has triggered the approach.

Negligence in dress may be a problem. Open trousers may look like exposure, but it is not necessarily intended. It may simply be the result of unconscious carelessness. Some persons with schizophrenia may masturbate in public (see Embarrassing Behaviour, p. 39).

It is important to discuss sexual matters with your relative in a way that takes account of today's standards and the concerns of the younger generation. Although sexual morality may loom large for some families, safety issues need to be a first priority. Those with schizophrenia need protection from violence, assault, unwanted pregnancy, unwanted attention, unlawful behaviour, transmission of disease, undue naivete and heartbreak.

Suggestions for Coping

The following suggestions may help you cope during this early stage.

1. Speak with a slow-paced and low-toned voice. Use short, simple sentences to avoid confusion. If necessary, repeat statements and questions using the same words.
2. Explain clearly what you are doing, and why you are doing it. For example, "I am putting your clean clothes in your closet. You can choose which clothes you want to wear today."
3. Establish a structured and regular daily routine. Be predictable. Be consistent. Do not say you will do something and then change your mind.
4. Offer praise continually. If your relative combs his or her hair after three days of not doing so, comment on how attractive he or she looks.
5. Avoid over-stimulation. Reduce stress and tension. For example, eating meals with the family may be too overwhelming at first.
6. Persuade, but never force, your relative to take his or her medication and to keep all medical appointments.

With time, your relative may show signs of being able to handle more responsibility. Although you should always keep in mind the above ideas for reducing stress, families have compiled other suggestions for the time after the initial period of adjustment.

1. Discuss with your relative how he or she feels about doing more things.
2. Begin with mastery of self-care tasks - personal hygiene, getting dressed, eating scheduled meals.
3. Assign household responsibilities that are within your relative's abilities. Watch to see if your relative prefers to work alone or with others. For example, he or she may like to wash dishes, but may not be able to handle the "help" of someone else drying.
4. Encourage, but never push, your relative to be part of social gatherings if appropriate. One or two relatives or friends over for dinner may be manageable, whereas an all-day gathering of the clan - for example, a wedding - may cause frustration.
5. Discuss plans with your relative for an outing once a week. A drive and a walk in the country may be fun, whereas a trip to the city may be too noisy and tension filled. If your relative enjoys coffee and doughnuts, plan a break around going to the donut shop, rather than a restaurant where there may be a more formal atmosphere.
6. Do not be too inquisitive. Do not always ask your relative, "What are you thinking about? Why are you doing that?" Talk simply about outside events: "Did you hear about the new movie starring...."
7. Understand that although it may be very difficult for your relative to have a conversation with you, he or she may be able to enjoy your company in other ways. Consider watching television, listening to music, or playing cards. Talk about childhood events. Your relative may appreciate being read to.
8. Avoid constant, petty criticism. Identify the major behaviours and learn to deal with them in an honest, direct manner. For example, in many families, the lack of personal hygiene is a source of great irritation. But saying things like, "Why can't you wash?" or "You smell awful," does not seem to have much effect in solving the problem. It is better to present the problem as your own. "I do not like the way you smell. I have a problem with the fact that you do not shower regularly. How can we work out an agreement that you will shower daily?"
9. Be forgetful. Say something like, "I forgot the milk. Can you get it please'?"
10. Encourage your relative to take responsibility. For example, leave instructions about starting dinner in case you are late getting home that night. And then be late.
11. Teach your relative how to deal with stress in a socially acceptable manner. For example, if he or she is in a public place and begins to feel panicky, he or she can go to a washroom until the feeling has passed.
12. Remember that family members are often the only friends your relative has. So try to be a friend; talk as a friend would. "I'd really like to see this movie. Would you come with me tonight?"
13. If you are a member of a church, encourage someone from the congregation to befriend your relative. (Look for someone your relative's age.)
14. Always try to put yourself in your relative's place. Respect his or her feelings. Saying "Don't be silly. There's nothing to be afraid of," will get you nowhere. Allow your relative to feel frightened by saying something like, "It's all right if you feel afraid. Just sit here by me for awhile."
15. Respect your relative's concerns about the illness. Often, those who have schizophrenia ask their families not to "go public" - that is, not to become a public speaker or to give interviews on behalf of their support group. Although some families feel that they have a lot to offer in terms of helping others, they have decided for now to abide by their relatives' wishes. Others, although fully sympathetic with their relative, have decided otherwise.

With time, your relative will begin to feel more confident and secure about the ability to do things. Some health care professionals have noted that it is around this period that new problems can emerge, particularly if the family isn't prepared to grow with their relative. In other words, the family may have developed a routine of treating the relative like a sick person or like a child, and it is the family that begins to fall behind in the recovery process. Your relative may begin to have reasonable expectations about what he or she can do, things like socializing, returning to school or becoming employed. This can cause friction in families if they do not constantly monitor the progress of the person's schizophrenia and re-evaluate goals. If a social work service is available, do all that you can to ensure that your relative is visited by a social worker. Work with this person, your doctor and your support group, so that you can help your relative make informed and realistic choices about the future.

In many cases, the most important goal for a person with schizophrenia, particularly a son or a daughter, is to become sufficiently independent to move out of the family home, although the importance of this goal may vary because of ethnic backgrounds and family traditions. Those families who believe that it is a critical issue give four reasons for their point of view. First, the person with schizophrenia may be able to fulfill his or her potential better by leaving home. Second, as the supportive member or members age, become ill, or die, the relative may be left alone with few survival skills. Third, living with someone with schizophrenia can be very demanding. and other family members may have put their own lives "on hold" to support their relative. Fourth, both you and your relative may have too much "emotional baggage," such as childhood dreams and expectations, transferred blame and resented authority, for the person to be anything but tense and frustrated living at home.

If you and your son or daughter have agreed that moving away is desirable, this may be done best around the age that he or she normally would have left, that is, the early to mid-20s. Too many parents avoid the issue until they have to say, "I can't stand this anymore. You have to leave." The result is guilt and resentment at the changes the illness has brought upon the family.

The process of becoming independent is gradual. As well as the ideas listed above, families suggest that at an appropriate time, you begin to say something like, "If you decide to live on your own..." as often as possible. Gradually, change this to, "When you decide to live on your own...." For example: "If you decide to live on your own, you'll need to know how to do your own laundry." And then, "When you decide to live on your own, you'll be glad you learned how to use the laundromat."

Families suggest that at some point you and your relative make a commitment about when the move will occur. Work together (with the social worker, if there is one) to set a date that will give you both plenty of time to seek and approve accommodation. For example, you may come to an agreement that in six months, on May 1, John will be ready to live on his own, in whatever form of housing he and you have decided will be best.

Once the move has been completed, there may be some resentment on the part of your relative. It is very important to help him or her not to feel abandoned by the family. You will have to work hard over the first few weeks to reinforce the idea of the move as a positive step.

• Be a friend. Call your relative and make dates to go places and do things.
• Encourage self-esteem by offering praise and support.
• Respect your relative's wishes and concerns as much as possible.

As well as emotional support, you may have to be involved in such things as housework, shopping. cooking and management of finances. The amount of daily assistance your relative needs will, of course, depend on the condition of his or her illness. Families stress the importance of working with your relative as you do these tasks.

Allowing for your family's background and traditions, the relationship should become less intense over time. At first your relative may wish to come back every weekend. Contributing families agree that this is fine for the first few weeks or months. Then, however, you should begin to pick the occasional weekend when he or she may not return home. You should have a valid reason, such as "We'll be away that weekend." Gradually decrease visits to one or two weekends a month. You may also find that at first, your relative will phone home constantly, often three or four times a day. If this persists, the use of an answering machine may be advisable. You can then return calls as you deem appropriate. As time passes, your relative should become more confident of his or her capabilities and the number of phone calls will settle into a normal pattern.

Social And Vocational Rehabilitation

Opportunities to participate in rehabilitation programs vary a great deal across Canada. Ideally, in-patient and out-patient treatment should be linked together in one continuous process. In some situations, a caseworker is assigned who has the prime responsibility of following the patient's progress in the community and providing advice and assistance when needed.

Most provinces and territories now have their mental health services under review with the aim of achieving more effective treatment and greater control over rising costs. The underlying premise in such approaches is that many services can be provided more efficiently and effectively in the community than in the hospital.

Hopefully, prior to discharge from the hospital, your relative will already have taken part in a number of programs designed to ease the return to life in the community. These may have included social and vocational counselling and, dependent on individual needs, plans for some academic skills training or for social-recreational activity.

Patients returning to the community should be assessed to determine what stage they are at with respect to independent living and what supports they may need.

If this is done by a health care professional, families should seek to provide some input. Should professional help not be available, however, families should help their relative make this kind of assessment. Many elements may be involved, such as: what skills did the person have before hospitalization? Have these been strengthened by in-patient programs? Has he or she had previous employment experience? What opportunities are available? Are there sheltered workshop programs that would offer a useful intermediate step? Should he or she consider a volunteer job as a start? If the person is receiving welfare benefits, how will these be affected?

The most basic question is whether your relative is really ready for a job, even the simplest kind. Much will depend on his or her level of social skills and confidence. Parents should not push. Let the initiative come from the person, but be there to help and provide encouragement.

An excellent brochure, Vocational Rehabilitation, put out by the Clarke Institute of Psychiatry, looks at this issue and others for patients involved in looking for work. Authors Hana Scholz and Terry Krupa have written it specifically for "people recovering from psychiatric illness." Employment and Immigration Canada offers training programs and other employment-related programs that may be helpful to your relative. Your provincial or territorial government also provides vocational rehabilitation services.

Some communities have non-profit organizations modelled on the Fountain House Project in New York. This type of operation is called a "club-house program. " It has been designed specifically for people with psychiatric disorders who may join "the club" for a modest fee. The club-house is the focus of services provided, such as meals at reasonable prices, social and recreational activities, and some sheltered employment. Most such organizations develop good working relations with local employers to arrange jobs for those able to function at this level. They may also provide some housing accommodation at different levels of support. Many families have found this approach excellent for a relative who is well enough to be able to participate.

Those who have gone through their relative's move out of the family home know that you will have many worries at this time. Keep in mind that a family support group can supply you with all sorts of ideas and advice about handling the practical concerns of day-to-day living that you and your relative will face.

Next | Previous | Table of Contents