FAMILY ISSUES THAT MAY INTERFERE
WITH THE TREATMENT AND REHABILITATION
Alexander P. Hyde, M.D.
Charles R. Goldman, M.D.
Presented at the 41st Institute on Hospital
and Community Psychiatry
October 19, 1989
Drawing on a variety of clinical experiences, the authors summarize some of their observations about common family reactions to Schizophrenia that can present barriers to the smooth progression of rehabilitation efforts. In this paper the authors list some of the most common problems/issues families encounter and suggest strategies for their amelioration.
FAMILY ISSUES THAT MAY INTERFERE WITH THE TREATMENT AND
REHABILITATION OF SCHIZOPHRENIA
Over the past 10 years, there has been a significant increase in knowledge of effective ways to treat and rehabilitate persons with schizophrenia (1). Concomitantly, approaches to working with families of schizophrenic patients have evolved from earlier emphasis on hypothesized family pathology to a recent focus on family strength and normality (2). During this time frame, we have been working with schizophrenic patients and their families in a multiple family rehabilitation (MFR) group format in which we focus on treatment and rehabilitation as separate, but closely related, activities. We avoid implications that families are disturbed and in need of therapy. Rather, we assert that the brain disease "schizophrenia" is the enemy and we engage both patient and family members in a collaborative "psychoeducational" process. We have reported elsewhere on the specifics of these groups (3) and intend, in this paper, to summarize some of our observations about common family reactions to Schizophrenia that can present barriers to the smooth progression of rehabilitation efforts. Although these issues are commonly seen in the context of the MFR groups, we have also observed them in many other families we have met in the course of our clinical work and through our involvement in Alliance for the Mentally Ill (AMI) meetings.
Engaging the Patient and Family in a Treatment-Rehabilitation Program -- When contacting family members of a schizophrenic patient we frequently find that they are too busy in their often frenetic daily lives to summon the energy, time and hope to take on yet another commitment, especially one with an uncertain outcome. We therefore often have to "sell" families a treatment and rehabilitation program. We do this by telling them that through rehabilitation we usually can get the member with schizophrenia (who we will refer to as "patient") to work around the house which will result in less work for the parents. We promise them that they will spend less time, less hassle and have less emotional exhaustion because, after a while, their family member will be out of the house every day and will be increasingly useful and cooperative around the home. As his schizophrenia improves and he gains self-confidence, the patient will act more normally, be less of an embarrassment to the family and not require rehospitalizations. We encourage new families to contact other families who have been through a rehabilitation program to see what it is like and we also frequently invite them to observe one of our MFR groups. This assertive outreach effort is necessary to overcome the hesitation many families have. We do not have data to show how often this approach works, but we know many families have expressed gratitude that we encouraged them to try the program.
Problems Resulting from the Deleterious Effects of Prior Experiences with the Mental Health System -- Most families we see have had a long, dismal experience with the mental health system -- both private and public, usually in that order. Such families may be bitter due to the lack of understanding of their problems by mental health professionals and because they were not taught how to manage the patient and his/her illness (6). We hear families complain that "no one told us" about the Alliance for the Mentally Ill, local family education programs, and the many helpful rehabilitation books, articles and pamphlets which are available from local AMI and Mental Health Association chapters.
Families frequently feel blamed, rather than helped, by mental health professionals for the unhappy, chaotic condition they are in. They may have depleted finances with a sense of nothing to show for it. The doctor is often not available, or seems hurried or apparently avoids them. They feel excluded from the treatment of their own family member under the guise of "confidentiality," despite the fact that most of the management and treatment of the patient is delegated to the family, often by default, by the mental health system.
Families report their dialogue with social workers and case managers is often unsatisfactory because "everything is up to the doctor," they say, rather than, more realistically, a reasonable joint patient-family-mental health professional planning arrangement. "How can a doctor who does not know the home situation prescribe treatment without the knowledge and support of the family?" they ask.
Some families complain that mental health personnel are vague and evasive about diagnosis, and that they are conceptually unclear exactly how treatment and rehabilitation work.
Families also complain of such diverse problems as:
1) Unrecognized and untreated side effects.
2) Abrupt "dumping," barely improved, of the hospitalized patient back home without reasonable notification.
3) Huge bills mailed by the state mental health system to the family which does not consider itself financially
responsible for the adult patient.
4) Having to repeat whole histories with each new facility contact -- wondering why they are not obtainable from
5) Difficult in communicating with doctors with poor language skills.
6) Having the patient's medications changed for no apparent reason.
We handle these complaints by actively searching them out in order to quickly form a working alliance. We not only sympathize with their legitimate complaints but we also cite other complaints we have heard from other families and we generally try to distance ourselves from prior mental health system experiences.
We tell them as accurately as we can what to expect from us, when and how we are available, what we will do differently than what they have previously experienced, and that we will offer education and demonstrate how to persuade their mentally ill family members to implement their rehabilitation program.
Through these tactics we try to translate their bitter, angry, defensive energies into vigorous, positive rehabilitative efforts.
Overprotection: "Walking-on-Eggshells" -- Many interested, loving and responsible families are handicapped by their inability to implement necessary rehabilitative measures because of their fears of stressing their schizophrenic member. These fears have apparently been learned from a variety of sources -- mental health professionals, cultural and family attitudes, as well as through their own observation of the negative effects of "stress" on their schizophrenic family member.
To counteract these fears, we provide a meticulous education on stress management to both patients (who share these fears) and their families. We vigorously oppose the notion of avoiding all stress. Instead, we cite the importance of stressing oneself through hard (but not overwhelming) work, working up gradually to vigorous, aerobic exercise, proper diet (overweight is depressing!) and plenty of (initially stressful) social life.
We teach that normal living is often stressful and our goal is to encourage each schizophrenic person to become as normal as possible in learning to handle life stresses rather than avoiding them. We teach that, generally speaking, most stresses are good, not bad, for schizophrenia.
On the other hand, we clearly delineate those stresses which make schizophrenia worse: e.g., alcohol and drugs, lack of sleep, chronic exhaustion, hidden akathisia, incorrect use of medication. We point out how stressful just lying around the house ("toxically horizontal"), lonely and bored, is. We talk about how deleterious to recovery a "toxic" (i.e., frenzied, pressured, hostile, dishonest) family or work atmosphere is.
To get good treatment adherence, our list of do's and don'ts is endlessly repeated through the family sessions (see Appendix) (7). To further lessen the fears of stress, we point out the visible benefits of "positive stress" and vigorous hard work gained by other patients who have followed their rehabilitation programs. We present a modified version of the concept of "Tough Love" with fearful families to whom the idea of requiring positive activity from a "sick" person may be viewed as inhumane or even morally wrong. In this effort, we have found it helpful to discuss appropriate use of the "sick role" and "recovery role" (8).
This approach requires a careful titration of what the patient is capable of handling. Sometimes we must tell patients and family members to increase their activities and, other times, to slow down. One "rule of thumb" we use is to encourage the patient to make only one change at a time and to let that new behavior become comfortable before taking on a new challenge.
Threats, Intimidation and Violence (TIV) -- When any family is frightened of the patient, it cannot take active treatment and rehabilitation measures for fear of retaliation. With the mentally ill person "running the family", so to speak, improvement is not possible, so there is invariably a tense, potentially explosive stalemate in these families -- the family on one side, the schizophrenic member on the other. There are two types of TIV: The first is a real potential of violence. The patient has shown real violence in the past and there is clearly a threat of it in the future (especially when the 5 patient is using drug and alcohol). The other is a much less serious manipulative bullying in which, when confronted, the patient backs down after perhaps trying to treat the event as a joke. The patient often shows a telltale mirthless grin (the "schizophrenic smile") following a confrontation of his intimidating behavior.
We insist that neither state should be tolerated in the home. We teach families that they have rights to live comfortably and that a mental health counselor, lawyer, physician, and so on should be consulted to arrange active treatment for the schizophrenic family member, elsewhere if necessary, to protect both the patient and family. We caution against confrontations when the patient is drinking or drugging, or is clearly actively psychotic. Subrosa, unexpressed threats and intimidation can be as damaging as overt TIV's and need elucidation and clarification because healing of the schizophrenia itself cannot take place in families who are disrupted by fear.
To diagnose overt or covert TIV we have found that the family's intuition is usually sufficient to clarify whether the patient is truly potentially violent orl not. That is, we ask, "Is Johnny really violent, yes or no?"
On the other hand, the manipulative patient needs confrontation involving negotiation of clear, simple rules of behvior in the home which will insure a pleasant ("nontoxic") atmosphere.
We also tell families never to take any patient back from the hospital if they are afraid of him/her. We suggest, instead, a contract prior to the patient leaving the hospital with the patient agreeing to being re-hospitalized or living elsewhere if he exhibits TIV behavior at home.
We regularly repeat that "No family should ever have to live with any family member, including the mentally ill, of whom they are afraid!"
Drugs and Alcohol -- Lack of fundamental knowledge in the families about the effects of drugs and alcohol on schizophrenia is often a basic problem in itself. For instance, families often do not know that many drugs and alcohol make schizophrenia worse (9). Our observations indicate that both stimulants (in some cases, including caffeine) and depressants may be deleterious in even small amounts, and that, in moderate amounts, they appear to increase the amount of antipsychotic medication required to "cover" their effects (10). Increased side effects, in turn, reinforce a vicious, cycle.
We define problem drinking or drug use as repeated us of substances which predictably cause trouble (financial, relationship, physical, mental, etc.). When we encounter a "dual diagnosis" substance abusing group member who is not able to quit drugs and alcohol on his own (most of them will), we try to get him/her to go to NA or AA and their families to Al-Anon, and we educate them on how to use these self-help groups.
On the other hand, "social" drinking-and-drugging patients will usually stop drugs and alcohol simply through our persuasion, reinforced by their continuing improvement.
As they improve, our schizophrenic patients may return to experiment with drugs and alcohol with a kind of adolescent neet to be "like everybody else." In our experience, although often stormy, this is often a benign and transient process not associated with a major relapse. Even serious relapses, however, can be dealt with positively as valuable (and often expensive) learning opportunities.
Family Polarization -- Family polarization over a chronic illness such as childhood asthma, mental retardation and schizophrenia is common (11, 12). Parents often fight an internecine cold war -- the father (usually) focusing on the patient's manipulative style, or other "bad" conduct, attempts disciplinary measures while the mother (but also the father sometimes) is more sensitive to the patient's illness and is predominantly permissive, kind and nurturing. The more each pursues his point of view, the worse the battle gets -- the schizophrenic member usually attaching to the permissive family member. This polarization tends to extrude the perceived "punishing and cruel" member from the relationship.
With time, this family member then becomes characterized by mother and patient as "He doesn't care about us," and "now" says mother, resentfully, "I'm stuck with the full-time care of a schizophrenic patient." The father may then in fact become distant and uninvolved.
Most often siblings see the permissive parent as a "sucker" to the patient's manipulations and, not wanting to get caught in the middle, try to duck out of the picture, leaving mother feeling quite alone with no one to support her.
To manage this problem, we elucidate it carefully and then persuade all members of the family to back one another up because "they are both right, so to speak." That is, the patient is both sick and behaving badly. Then we turn their energies into focusing only on the treatment and rehabilitation process itself. Much of this problem is worked out ahead of time by our insisting on both parents (or key family members) coming to the sessions. As the schizophrenia improves, even early on, this polarization usually wanes rapidly. In fact, the disappearance of apparent family "pathology," without any attempt to do "family therapy," can be dramatic and extremely gratifying to all concerned.
"Lazy, Sick, or Afraid?" -- One problem many patients have is a general lack of interest, energy, motivation and initiative, especially in the area of new activities, that is, towards finding work, social relationships, schooling, and being helpful around the house. Families are puzzled by whether this is simply a result of the schizophrenia itself or whether it represents something more such as a personality defect.
We teach patients and families that, because it is a neurological disorder, schizophrenia most often does affect the brain in such a way as to lessen initiative and liveliness ("negative" symptoms). This, in turn, tends to inhibit the already anxious schizophrenic person into not attempting unfamiliar activities or problematic old ones. The vicious cycle continues as the patient loses his confidence and, as a result, tends to act passively and fearfully and tries to be socially "cool" to disguise these fears. Any characterological laziness he may have only adds to his problems.
As soon as the patient is relatively free of psychotic symptoms, we teach families not to try to figure out which is which (lazy, sick, or afraid), but rather to encourage positive action against the general syndrome because only assertive, active behavior will help solve all these three in any combination (much as exposure is the best treatment for phobic behavior). We also educate families about these and other so-called negative psychiatric symptoms which are best treated by:
1) Aerobic exercise;
2) Volunteer or paid work;
3) Close friendships;
4) Steady, comfortable, useful activity all day long.
Problem Behavior -- Due to Mental Illness or Personality Problem? -- In the same vein as the preceding "lazy--sick--or--afraid" issue, practically every family encounters from its schizophrenic member some type of recurrent, manipulative behavior which they may have assumed was due to the mental illness but which they may have assumed was due to the mental illness but which does not, in fact, disappear as the mental illness improves. The patient may act "spoiled" if he isn't provided with cigarettes or coffee, or he may be angry if "stressed" with a household chore. Pushed even more, he may say his "voices" are coming back.
To help differentiate personality traits from the illness itself, we suggest that schizophrenic symptoms which herald a relapse almost always show a typical sequence and have a serious and more or less ominous "feel" to them. On the other- hand, manipulative symptoms occur in conjunction with things the patient does not want to do (e.g., mot the kitchen floor). Or, maybe he is afraid to do such things as call a friend up or go to the movies.
"Personality" versus "illness" behavior can usually be easily distinguished by correctly identifying the underlying motive of the patient, without rancor. That is, "Are you afraid to call Susie up, John," or "Are you trying to get out of mowing the lawn?" This kind of confrontation usually elicits an irritated or defensive reaction, but also is accompanied by the usual, mischievous "schizophrenic smile." An actively psychotic patient, on the other hand, will be serious and respond in his usual psychotic manner.
Obviously, the relapsing schizophrenic person needs to stop his alcohol or drug abuse and increase or resume his medications but the manipulative schizophrenic member needs to be "tough-loved" by the family into responsible productive behavior.
Emotional Age vs. Chronological Age -- Generally, people who are ill, including schizophrenic people, tend to regress to a less mature state. Because the onset of Schizophrenia usually interrupts accomplishment of the usual developmental tasks of adolescence, many adults with schizophrenia appear developmentally "stuck." During the treatment and rehabilitation of schizophrenia, most families are confronted by the problem of relating to the adult patient as if he were much younger than his chronological age. "Did you take your pills tonight, dear?," sing songs the patient's wife, or, "Remember, only decaffeinated coffee at the social center," says the twenty-five year old patient's mother.
As a result, patients view themselves as being infantilized and, like young teenagers, respond resentfully, "Why don't you treat me like an adult? You're always babying me. Why don't you just leave me along?' In some families, this process alone can lead to conflict and tension which may escalate to the point of relapse, or to a stalemate with TIV behavior from the patient and/or the "walking on eggshells" syndrome. After working out reasonably realistic expectations in each of these situations, we teach family members to respond firmly and clearly to such protestations by saying such things as, "As soon as you act like a responsible adult about your recovery program, you'll be treated that way." We also demonstrate the use of specific compliments and praise as positive reinforcers for improved behavior on the part of the patient.
Martyring: "Virtue Through Suffering" -- Whether out of love, loyalty or a deep sense of doing what is right as a parent, many families endure bad behavior from their schizophrenic member for months or years in the same way a battered wife takes abuse from her husband. Families may bury or suppress their anger and resentment or live with their schizophrenic member in a "durable-but-unsatisfactory" state, usually punctuated with occasional rehospitalizations.
We teach these families not only not to take patients back from the hospital unless basic changes will be made, as in the TIV process, but also we attempt to focus on the benign motives and good intentions families usually have in putting up with this behavior. With exploration we often uncover underlying issues, such as fears of appearing selfish (guilty, in their wish to get rid of the schizophrenic member) or disloyal; reinforcement by the extended family and friends of their "courage and stamina" in the face of their adversity; and so on.
We try to persuade families that the schizophrenic member won't improve until their "martyring" disappears. We try to refocus their attention on the greater goal of improvement of the schizophrenia rather than to recite the benefits to the family, because the very basis of the martyring syndrome is usually an idealistic but self-negating process.
While our emphasis in treatment and rehabilitation is getting the schizophrenia itself better, it is necessary to ameliorate impeding family processes so that the rehabilitation process can proceed. In this paper we have attempted to list some of the most common problems/issues families encounter and to suggest some solutions to them.
1. Lamb HR: Community psychiatry and prevention (Ch. 37, pp. 1141-1160), in Textbook of Psychiatry. Edited by Talbott JA, Hales RE, Ydofsky SC. Washington, kD.C., American Psychiatric Press, 1988.
2. Lefley HP: Training professionals to work with families of chronic patients. Community Mental Health Journal 24(4;winter):338-357, 1988.
3. Hyde AP, Goldman CR: Use of a multi-family group in the treatment and rehabilitation of schizophrenic patients. Presented at the Annual Meeting of the American Orthopsychiatric Association, San Francisco, CA, March 29, 1988 (revised 4/25/88).
4. Lazare A, ed.: Outpatient Psychiatry: Diagnosis and Treatment (2 ed.). BAltimore, MD, Wilkins & Wilkins, 1989 (Ch. 9Lazare A, Eisenthal S: Clinician/patient relations; Ch. 10-Lazare A, Eisenthal S, Frank A: clinician/patient relations).
5. Kanter JS: Coping Strategies for Relatives of the Mentally Ill. Washington, D.C., National Alliance for the Mentally Ill, 1984.
6. Hatfield AB: Systems resistance to effective family coping. New Dir Ment Health Serv 33:51-62, 1987.
7. Hyde A: Living with Schizophrenia: A question and answer guide for patients and their families. Chicago, Contemporary Books, 1985.
8. Bisbee C. Mullaly R: Schizophrenia: Family Class Instructor's Manual. Radford, Virginia, Intuition Press, Inc., 1983.
9. Osher FC, Kofeod LL: Treatment of patients with psychiatric and psychoactive substance abuse disorders. Hosp Community Psychiatry 40(10):1025-30, 1989.
10. Hyde AP: Schizophrenia Bulletin, in press (1990).
11. Terkelsen KG: The meaning of mental illness to the family, in Families of the Mentally Ill. kEdited by Hatfield AB and Lefley HP. New York, the Gilford Press, 1987.
12. Roland JS: Chronic illness and the family life cycle, REF(Carter B, McGoldrick M (eds): The Changing Family Life Cycle. New York, Gardner Press, 1988.
Return to Homepage