The Family and Mental Illness

C. Markham Berry

   In my boyhood, households commonly included a family member who was disabled. A back room might be reserved for him; his needs were included in the family routine. Today, such a person in the home is unusual and would probably be considered an extraordinary burden for the family. This problem is rarely considered in our meetings on the family. A recent marathon conference concerned with conflicts and tensions in the family lasted some thirty hours but never mentioned this as a home challenge.

   Yet pressures are beginning to build up for the family to take into or keep in the home the chronically ill. The increasing age of the population swells the number of old people, many of whom find no happy place to go.¹ The remarkable success of medicine in caring for the acutely ill has shifted medical problems toward those which involve long or permanent disability. For these, our acute-care hospitals have little to offer, and the long-stay, chronic-care facilities are closing.

   The most dramatic of these pressures comes from the movement of the mental health care system toward sending the chronic psychotic patient home.² In my own state, for example, in the

Page 119

last ten years, over 60 percent of the insane who had been cared for in the back wards of the state mental hospitals have been returned to the community at large.

   This movement is also encouraged by a changing social philosophy. The American spirit has traditionally been pragmatic, task oriented, "get the job done." Now it is being replaced by a person-centered view which is more concerned with the needs of people than with their usefulness. It is hard to deny that from this stance, home is a good place for many sick people to be. Joining this plea for home care has been a large chorus of professionals in specialties as diverse as leprosy or maintenance on artificial kidneys.³ But taking patients into a contemporary home is not as simple as some of these professionals would like us to believe.

   The skyrocketing costs of giving considerate, sensitive care in a chronic hospital also bear on the home. To hire an untrained afternoon sitter today costs more than the patient's entire care twenty-five years ago. To provide the necessary additional space in a contemporary home could well cost more than the entire house did then.

   While costs have been going up and our philosophy has been becoming more person oriented, our actual life-styles have become activity oriented, more and more favoring the able, the active, and the young. The whole society, including the church, is exerting a centrifugal force on the family. Both children and adults find their meaning, challenges, and even their pleasures outside the home. The home which has become a pit-stop in life makes a poor hospice.

   Many families today are struggling to help their children survive the teen years. A teenager or two who have fallen into the morass of drugs, illicit sex, and hedonism can absorb the entire energy reserve and skills of the whole family. A home like this is poorly equipped to take in more trouble.

   The chronic patient himself can have a personality which will make home care unthinkable. All of us can remember a home which has been destroyed by a heroic effort to care for an abusive, violent, or uncontrolled patient. Since the home must ultimately define its mission in terms of its ministry to the immediate

Page 120

family, this would be a tragic move however good its intention.

THE DECISION

   The decision to take in the sick, then, is complicated, difficult and somewhat dangerous. Since every member of the household, the marital relationship itself, and the nurturing influence of the home on the growing family are all affected, for better or worse, by the presence of an ill person, the decision should be a family one.

   Just as the new member can be destructive, he or she can also be an incredible blessing to the family.⁴ For this reason it is an important spiritual decision as well as social and psychological. The family should first feel some assurance that this is God's specific will for them at this time. It is almost certain that later on this will be sought on many occasions, and this prayer will be bolder and more effective if there is an assurance that it is indeed his will!

   For those who have had little or no experience of this sort, it would be helpful to consider some of the issues involved.

   Stress. The family is a tightly interwoven community, and its interrelationships tend to become more difficult as they become more complex. The disabled person not only adds another personality but brings an illness which itself adds another factor to the family's interactions.

   Stress can be a minor factor, however. We cared for a mentally retarded boy in our home for a year or so. Stanley was loving, simple, and quiet. The mechanical care he required was cheerfully distributed through our large family. He created little distress and taught the growing family a good deal. Shortly before he came, a young lady who was bright but suffered from a hysterical personality disorder moved in for a short stay. She kept the entire home in turmoil. We learned from her too but were relieved when she left. It was only then the family could lick its wounds and restore its equilibrium.

   Energy. Additional persons, even when they are able to help, add to the work load of the family. Advance thought should be given as to who will do this additional work. We tend to put most of the work burden on the mother; so she is

Page 121

often already overloaded. Much of the hard drudgery has been eased by mechanical devices, but her additional roles of chauffeur, coach, worker, school, Sunday school, teacher and community volunteer have taken up any slack which might have been created. Additional work should either be distributed among other family members or to people or services hired to help.

   Sometimes help can be arranged from outside. The household taking the patient in is usually not the only one with some responsibility for his or her care; other siblings or parents may be involved. It is often wise to arrange beforehand for these others to make regular, specific contributions either in time, services, or money. If this has not been clearly arranged in advance, it often turns out to be very difficult to get these others to help later on!

   Heart. Perhaps even more necessary than the physical labor involved in caring for the new family member is the heart-energy which is needed. Mother today seems to be the one responsible for the emotional tone and ministry of the home. If the father finds a soft shoulder away from home, if a child is emotionally undernourished, if the home atmosphere is abrasive, we blame mom. Many times the added stress of one more love-starved person is more than she can handle.⁵ This load, like the mechanical work involved, can be shared but generally will not be if it is not discussed.

   Risk. In some situations, the care of the ill at home represents real risk. The family who takes in a seriously depressed or psychotic person might have to live through a suicide.⁶ An older person might fall and break a bone. The lack of skilled care in a home may shorten the life of a patient in other ways. From the patient's point of view these risks are usually happily taken to avoid being in an institution. But the family and others in the home would be wise to consider this risk and knowingly undertake it as part of the overall responsibility for the patient. Too frequently, when something like this happens to an elderly patient, the other children who showed no interest in sharing in the care will be the first to accuse the family of being irresponsible.

   Perspective. To care for the sick, one needs to maintain a delicate balance between being close enough to dispense care with loving, individual consideration and yet distant enough to

Page 122

insist that all be done which is needed for this care to be good. This often involves discipline within the framework which allows as much freedom as possible. One must insist that patients assume appropriate responsibility for themselves and their behavior. Within the home this is hard, and it is not unusual for either party to make the other a scapegoat, or for one to lay an unfair burden of guilt on the other.

   Ronald R., age thirty-two, is a current schizophrenic patient who is able to get along out of the hospital most of the time. He lives at home and manages expertly to make his mother feel responsible for his antisocial behavior. She has lost the love of her other children, divorced her husband, and now devotes her whole life to mopping up behind Ronald. The real tragedy is that her submission to his whims and her failure to confront him with reality has been just as destructive to him as to all the others.

   This happens many times when elderly, senile patients come home. They are often childish, and it is usually necessary to reverse the roles of parent and child. For both, especially for the daughter, this is difficult and sometimes impossible. The elderly though, without some structure in their life, will do poorly. When such patients are moved into a nursing home where discipline is enforced, they can dramatically improve.

   With many patients, especially children and the insane as well as the elderly, this discipline is so important that the family would be well advised to get some outside counsel to learn what will be required. Even an evaluation by a third party as to whether the family can give this supporting structure might be advisable.

   Occasionally though, a certain amount of laxness works out very well.⁷ I always think of Mary S. when this comes up. I knew her in general practice as an elderly, senile patient who stayed with an alcoholic daughter. They lived together easily and mutually supported each other without being abrasive. Once, however, it all got out of hand. The daughter was too drunk, and the mother became confused after a bout of the flu. The household became so disorganized that they both nearly starved. When we discovered what was happening, we put the mother into a nursing home and the daughter into a mental hospital. Within a week or two

Page 123

they were both crying to get back together. None of us were convinced that this would be wise until we saw what had happened to the mother in the nursing home. Sitting around with other deteriorating oldsters, she went downhill so rapidly she was almost unrecognizable. When they moved back into their apartment, they both picked up. The last I heard, a year later, they were much happier and both doing as well as could be expected.

THE CARING

   Recognizing then that the decision is somewhat involved, let's assume that the family decides to take the sick patient in or keep the ill family member at home. Some suggestions might be helpful in order to do the job well.

   Learn the job. If one felt called to be a teacher, a preacher, or a counselor, he or she would ordinarily plan to get some schooling to fulfill this call. Often some training is also needed to do a good job of nurturing the chronically ill in the home. Each disease has its own personality, its characteristic course, and its challenges. Most diseases produce unique psychological problems in the patient. If someone in the family as set aside some time to prepare for the job, it will be a great help.⁸

   Early this year, the police brought in a silent, disheveled young man whom they found standing immobile in the center of an interstate highway. When he came around enough to let us know who he was so we could call his mother, we learned that she was on a farm in Connecticut. She told us briefly and professionally a good deal about her son. She described the medicines which seemed to work well with him and made very practical suggestions as to how we could get him back home when he was able to travel. She turned out to be a widow who had two schizophrenic sons. Her other son did not roam like this one but did well in a simple, rural setting. When her husband died, she sold her home in a wealthy, sophisticated New York City suburb and bought the farm where she cared for her two "patients." No one could have had better care than these boys were getting from their devoted mother. She had come to know a good deal about the disease and more than any physician about her two cases.

   Remember the impact on the family. With the considerations

Page 124

mentioned, an ill person within the home can be a constructive influence as well as a benevolent ministry. The large majority of the times I've seen families do this, and when we have done it ourselves, this has been the case. It's necessary though to make certain that the family — especially the children — are indeed thriving and that problems are not growing unawares. Children can easily develop bizarre ideas concerning disease. It is not unusual for children to come to the conclusion that they are in some way responsible for the disability of a person within the home.

   A friend described a recent conversation with her brother concerning an illness her mother had when they were children. Both thought that the mother had a "nervous breakdown." In fact, the mother had gone to the hospital for a hysterectomy. The boy was not emotionally involved in the episode, but the girl felt personally responsible for her mother's downfall. She was certain her noisy boisterousness and argumentativeness had destroyed her mother's mind! When the mother came home from the hospital, the daughter was sent away to relatives for a few weeks, and this confirmed in her mind her personal guilt. Years later, she was still affected by this tragic misunderstanding.

   Another friend, undergoing prolonged psychotherapy, feels much of her present difficulty stems from the fact that her mother never missed her, rarely allowed her to come close, and carefully avoided caressing her. Years later, she discovered that the mother had once cared for a tubercular uncle and was dreadfully afraid she was still contaminated. Her coldness actually was an effort to avoid giving the daughter TB. But the daughter thought, until she was an adult, that there was something horribly bad about her that made her mother avoid her!

   Since this sort of thing is possible, it's a good idea to keep open lines of communication within the family concerning the impact of the person and his or her illness. School-aged children should be quizzed occasionally to assure that they understand what is going on.⁹

THE PSYCHOTIC PATIENT

   The old, large, state mental hospitals which were designed to remove the insane from sight and memory are becoming relics

Page 125

of the past. It has been proven again and again that these patients are much happier and better cared for at home or at least in the community at large.¹⁰ Families, neighbors, and nearby community mental health centers are bringing a variety of support services to the home patient. Walk-in crisis centers, day hospitals, home nursing visits, call-in consultations, and out-patient individual and group therapy are now widely available.¹¹ These reduce symptoms and cut down on the repeated psychotic breaks which could require rehospitalization. When problems occur, they are rarely dangerous, and the patient is often quickly and effectively returned home. In the state mental hospital unit where I work, the average stay is less than three weeks!

   Even with all these services available, there will still be problems. It might be helpful to outline some of the critical areas these problems involve.

   Conflicts. Most emotionally disturbed people are particularly hassle-sensitive.¹² The schizophrenic, for example, has difficulty feeling his way into an interpersonal conflict and reacting appropriately.

   Donny D. was admitted to our unit last winter following a break which started with a family argument. His mother, an ex-alcoholic, was also suffering from terminal cancer and had been pleading with Donny to bring beer home to her. His father bitterly resented her reversion to alcohol and took it out on Donny, giving him a tongue-lashing and forbidding him to buy her any more alcohol. This did not quiet the mother though, and Donny was caught between the two. He ran away from home and became so disorganized that he landed in jail. He ultimately was admitted to the state hospital. Now that the family better understands Donny's particular sensitivity, he is doing well at home after some five months.

   Communication. Many students of schizophrenia have identified patterns of communication which are common in the homes these patients are raised in.¹³ These involve distorted meanings, silences in which important things are left unsaid, dark family secrets never discussed, and double messages in which the words and the emotional tone don't jibe. Any person with a mental problem finds these confusing and wearing. They frequently

Page 126

make him or her lose confidence in his or her ability to communicate with normal people. Patients get along better in a hospital or living alone than dealing with these factors. The family which cares for the psychotic patient must be patient, consistent, and explicit in the way it communicates.¹⁴

   Respect. The mental patient, usually more or less disabled, is often more sensitive to his or her uselessness than even most professionals are aware of.¹⁵ He or she is often willing to take on a job far beneath his or her capacity just to feel useful in the working community.¹⁶ The mental patient should be treated fairly, given neither more nor less favor than peers or siblings. While he or she will have limitations and will need some support, this should be given without condescending or putting too much pressure on him or her to perform tasks that are impossible.¹⁷

   The psychotic patient has traditionally been considered foolish, awesome, and a little demonic. Most of them are none of these.¹⁸ Those willing to understand them find themselves greatly enriched and broadened by their friendships. Through the bizarre distortions one frequently finds in the schizophrenic, one gets a deep look into what being human really means. The peculiar insights and sensitivities of these people must be respected and valued before they share these treasures. It is time well spent for anyone.

   A "now" orientation. Psychotic patients are encouraged by being in an environment which emphasizes the "now." Past failures and experiences are best put behind. Aside from an optimistic atmosphere of hopefulness, the future with its grim realities should also be played down. When the patient begins to improve, this sometimes becomes a critical problem. He or she realizes for the first time that he or she will never really have a normal life. Marriage and a family, a responsible challenging place in society, may never be. At the same time the patient might be getting better organized and strong enough to carry out his or her own suicide. Diverting the patient's thoughts to his or her present, improving life can be all-important.

Page 127

   It would be grossly unfair to leave this discussion on such a pessimistic note. There are few fields of service which can be more richly rewarding than caring for the sick, the senile, or the psychotic in the home. I challenge the reader to ask the next person he or she meets who has done this and done it cheerfully and well whether this is not so. A glimpse of this would best come from two people who are quoted below. The first is from a patient.

Living with schizophrenia can be hell, because it sets one so far apart from the trend of life followed by the majority of persons today but seen from another angle it can be really living, for it seems to thrive on art and education, it seems to lead to a deeper understanding of people and liking for people, and it's an exacting life, like being an explorer in a territory where no one else has ever been. I am often glad that illness caused my mind to "awaken" eleven years ago, but there are other times when I almost wish that it would go back to sleep for it is a constant threat. A breakdown in physical health, too much pressure, too many responsibilities taken on because they sound interesting to the "well" side of me, and I could be plunged back into the valley. Am I to live in a chair on a basement ward of a mental hospital, forced to endure a meaningless existence because people don't know how important freedom is to survival or am I to move ahead to find a place in the modern world outside hospital walls? It's like being on a swing.¹⁹

   The final word comes from Dr. Otto Allen Will, Jr., a physician who has devoted the bulk of his working life to intensive therapy with schizophrenic patients.

The therapeutic process is concerned with the development of the relatedness of patient and therapist and a study of the antecedents, the course and the vicissitudes of the development. Relatedness, insight, and action increase together. Therapy is a process of growth marked by mutuality, in which one participant cannot alter without the other. The therapist learns from his patient and grows with him; it could not be otherwise.²⁰

NOTES

1. H. B. Brotman, "Every Tenth American: Adding Life to Years," Bulletin of the Institute of Gerontology, University of Iowa 15 (1968): 3-7.

2. G. H. Wolkon, "Effecting a Continuum of Care: An Exploitation of the Crisis of Psychiatric Hospital Release," Community Mental Health Journal 4 (1968): 63-73.

3. G. H. Wolkon, M. Karmen, and H.T. Tanaka, "Evaluation of

Page 128

a Social Rehabilitation Program for Recently Released Psychiatric Patients," Community Mental Health Journal 7 (1971): 312-22.

4. R. L. DuPont, R.G. Ryder, and H.U. Grunebaum, "An Unexpected Result of Psychosis in Marriage," American Journal of Psychiatry 128 (1971): 735-39.

5. M.A. Berezin, "Partial Grief in Family Members and Others Who Care for the Elderly Patient," Journal of Geriatric Psychiatry 4 (1970): 53-64.

6. J.A. Chapman, "The Early Symptoms of Schizophrenia," British Journal of Psychiatry 112 (1966): 255-61; Alvin I. Goldfarb, "Maladjustments of the Aged," in American Handbook of Psychiatry, 2nd ed., edited by Silvano Arieti (New York: Basic Books, 1974), 2:833.

7. L.H. Robinson, "Group Work with Parents of Retarded Adolescents," American Journal of Psychotherapy 28 (1974): 397-408.

8. Howard E. Freeman and O.G. Simmons, "Consensus and Coalition in the Release of Mental Patients," Human Organization 20 (Summer 1961): 89-91.

9. Ozzie G. Simmons, J.A. Davis, and H. Spencer, "Interpersonal Strain in Release from a Mental Hospital," Social Problems 4 (1956): 21-28.

10. A.H. Collins, "Natural Delivery Systems: Accessible Sources of Power for Mental Health," American Journal of Orthopsychiatry 43 (1973): 46-52; L.R. Mosher, Alma Menn, and S.A. Matthews, "Evaluation of a Home-based Treatment for Schizophrenia," American Journal of Orthopsychiatry 45 (1975): 445-67; Benjamin Pasamanick, F.R. Scapitti, and Simon Dinitz, Schizophrenics in the Community (New York: Appleton-Century-Crofts, 1967); R.E. Meyer, L.F. Schiff, and A. Becker, "The Home Treatment of Psychotic Patients: An Analysis of 154 Cases," American Journal of Psychiatry 123 (1967): 1430-38; John P. Spiegel, "The Family: The Channel of Primary Care," Hospital and Community Psychiatry 25 (1974): 785-88; R.J. Swann, "A Survey of a Boarding Home Program for Former Mental Patients," Hospital and Community Psychiatry 24 (1973): 485-86.

11. R.L. Pearlman, M. Hecht, S. Blackman, and R.M. Silberstein, "An Acute Treatment Unit in a Psychiatric Emergency Service," Hospital and Community Psychiatry 24 (1973): 489-01; E.L. Rabiner, H. Molinsky, and A. Gralnick, "Conjoint Family Therapy in the Outpatient Setting," American Journal of Psychotherapy 16 (1963): 618-31; R.S. Rybach, "Schizophrenics Anonymous, a Treatment Adjunct," Psychiatry in Medicine 2 (1971): 247-53; Robert J. Greene and Frank G. Muller, "A Crisis Telephone Service in a Non-metropolitan Area," Hospital and Community Psychiatry 24 (1973): 94-97.

Page 129

12. Geoffrey G. Wallis, "Stress As a Predictor in Schizophrenia," Annual Review of the Schizophrenic Syndrome 1973, ed. Robert Chancro (New York: Brunner/Mazel, 1974).

13. E.G. Mishler and N.E. Waxler, "Family Interaction Processes and Schizophrenia, a Review of Current Theories," Merrill-Palmer Quarterly 11 1965): 296-316.

14. J.R. Schuerman, "Marital Interaction and Posthospital Adjustment," Social Casework 53 (1972): 163-72.

15. R. Moos and J. Schwartz, "Treatment Environment and Treatment Outcome," Journal of Nervous and Mental Diseases 154 (1972): 264-75.

16. Howard Freeman and Ozzie Simmons, The Mental Patient Comes Home (New York: John Wiley and Sons, 1963).

17. George Howard, "The Ex-mental Patient As an Employee," American Journal of Orthopsychiatry 45 (1975): 479-83.

18. S. Page, "The Elusive Character of Psychiatric Stigma," Canada's Mental Health 22 (1974): 15-17.

19. Norma MacDonald, "Living with Schizophrenia," The Inner World of Mental Illness, ed. Bert Kaplan (New York: Harper and Row, 1964), p. 184.

20. Otto Allen Will, Jr., "Human Relatedness and the Schizophrenic Reaction," Psychiatry 22 (1959): 205-23.

_________

C. Markham Berry, M.D. is a resident in psychiatry at the Emory University School of Medicine, Atlanta, Georgia, and also serves as senior assistant resident at the Georgia Mental Health Institute. He is the author of numerous articles in the field of psychology and Christianity.

Chapter Eleven  ||  Table of Contents