the changing Role of Mother of the Mentally Ill - PsychOdyssey.net

Psychiatry 72(3) Fall 2009

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Changing Role of Mother Seeman

The Changing Role of Mother of the Mentally Ill: From Schizophrenogenic Mother to Multigenerational Caregiver Mary V. Seeman

Psychiatry’s understanding of the contribution of mothers to mental illness has markedly changed over the last 60 years, evolving from a view that mothers were to blame for everything, passing through a subsequent period when mothers were seen less as instigators of illness and more as provocateurs, inducing relapse through the expression of criticism and hostility. Currently, mothers are mainly viewed as “burdened caregivers.” Because psychiatric patients no longer live in asylums and no longer are prescribed first generation antipsychotics that used to render them effectively sterile, more and more women with schizophrenia are bearing children--children that their mothers, more often than not, raise. This paper is about caregiving by grandmothers, especially as this pertains to daughters with schizophrenia and especially as it impacts on the grandmother’s health and well-being. The role of the grandmother is characterized by divided loyalties, by the toll of caregiving, but also, unquestionably, by the rewards that come with raising children. The experience of grandmothers makes them potent allies in the battle against mental illness in their children and the children of their children. Expanding on their existing role as caregivers, mothers of the mentally ill are evolving into auxiliary therapists. In the last 60 years, professional attitudes towards mothers of schizophrenia patients have dramatically changed. Frieda Fromm-Reichman is generally credited with coining the term “schizophrenogenic mother.” Although Hornstein, in her biography of the gifted analyst (2000), considers the concept to have been a relatively unimportant one in FrommReichmann’s mind, it nevertheless launched a 30-year era during which the development of schizophrenia was ascribed to the personality, behavior, language, and emotions of the mother. This attribution, and the variety of its subsequent manifestations, as exemplified in the work of well-known scholars (Bateson et al., 1956; Lidz, Fleck, & Cornelison, 1965; Wynne et al., 1958), has been attributed to more general attitudes towards women during the period in question (Hartwell, 1996). A widely held belief and a widespread fear are said to have contributed. The belief was that early mother-child interactions exerted a primary and determining effect on psychopathology. The fear was that women were taking over the Mary V. Seeman, MD, is Professor Emerita, Department of Psychiatry and Graduate Coordinator, Institute of Medical Science, University of Toronto. Address correspondence to Mary V. Seeman, MD, Institute of Medical Science, 7213 Medical Sciences Building, One King’s College Circle, Toronto, Ontario, Canada M5S 1A8. E-mail: mary. [email protected].

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world, assuming an increasingly prominent role in postwar society (Neill, 1990). By the time a substantive review of the work on family causation of schizophrenia was published (Doane, 1978), the concept of the schizophrenogenic mother had faded. Both parents were now implicated, no longer in causation of illness, but in recurrence of illness (Brown, Birley, & Wing, 1972; Vaughn and Leff, 1976). The new attribution--expressed emotion as demonstrated by hostility, critical comments, and overinvolvement being responsible for psychotic relapse--appears to be an outgrowth of the rejecting and overprotective characteristics earlier imputed to the schizophrenogenic mother (Parker, 1982). Expressed emotion in families continues to be viewed as damaging, even though there is now some acknowledgement that expressivity of relatives need not be avoided and can be constructive (López et al., 2004). Increasingly prevalent today are more benign judgments on parents of schizophrenic offspring; they are now most often viewed as co-victims, suffering along with their children because of the burden of caring. When surveyed, mental health professionals endorse the opinion that families are good managers who cope as well as they can in the face of loss and grief (Riebschleger, 2002). Because legal, social and economic factors have changed many aspects of the delivery of care to people who suffer from schizophrenia, because patients are now treated in the community and live with (or in close proximity to) their families, the perspective of families is more and more appreciated, and they are generally acknowledged as shouldering a heavy burden (Awad and Voruganti, 2008; Huang et al., 2008; Wynaden et al., 2006). The erstwhile schizophrenogenic mother has become today’s burdened caregiver who copes under difficult circumstances. The burden on the mother has further increased since the newer antipsychotics no longer diminish fertility and more women with schizophrenia are having babies (Nimgaonkar et al., 1997) and since she--now the grandmother--is needed to look after

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not only her ill daughter but also her at-risk grandchildren. Primary Caregiving by Grandmothers

The rate of primary caregiving by grandparents has been climbing in North America in the last two decades (Kolomer, 2008). In 2008, 5.7 million U.S. children lived with a grandparent, 8 percent of all children in the United States (U.S. Census Bureau, 2008). Mental illness in the parent is one of 11 reasons cited for the provision of care by grandmothers. The other reasons are, according to an online survey, substance abuse, abandonment/neglect, working parents, immature parents, domestic violence, divorce, incarceration, financial problems, death, and military service (McGowen, Ladd, & Strom, 2006). This online survey compared custodial grandmothers (those with whom the child lives away from parents), co-resident grandmothers (those with whom the child lives in the presence of parent or parents), and nonresident grandmothers (those who provide day care for the child but live separately from the child and the child’s parents). Parental substance abuse turned out to be the major reason for grandmothers taking over the custody of children, according to this study. Substance abuse in the parents accounted for 31% of custodial grandmother households (McGowen et al., 2006). Because there was no separate grouping for mothers diagnosed with schizophrenia, it is not possible to say what percentage of custodial grandmothering is attributable to this underlying cause. For many years, I was in charge of a clinic for women with psychosis at the Centre for Addiction and Mental Health (formerly the Clarke Institute of Psychiatry), Toronto, Canada (Seeman & Cohen, 1998). All the women in the clinic have a diagnosis of schizophrenia. In this clinic, 12 sets of grandparents assume the role of primary

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caregivers to the children of clinic patients who are mothers. The population of Toronto is culturally diverse so that these families come from many different backgrounds. The mothers of the children who live with grandparents are usually unpartnered, sometimes living in the grandparents’ home and sometimes not, but in all cases the grandmother is the person most responsible for the care of the child or children. The duration of custodial grandmothering varies. Some grandmothers bring up the children from birth to maturity, mostly on their own, occasionally with the help of their spouses. It has been previously pointed out that the role of grandfathers in kin caregiving has been undeservedly neglected (Kolomer & McCallion, 2005). Nevertheless, it is usually the grandmother who takes on most of the caregiving role. In some cases, the child’s mother lives in the home and co-parents, whenever she is well enough to do so. Most often, the mother lives elsewhere but visits frequently, for shorter or longer periods, depending again on her state of health and stability. The relationship between mother and grandmother can be a problematic one, especially when the two cannot agree on the child’s everyday routines, activities, discipline, or education (Goodman, 2003; Musil & Standing, 2005). The stress is made worse when the children themselves suffer emotional problems (Emmick & Hayslip, 1996), and this is not uncommon in children when a parent is diagnosed with schizophrenia (Hans et al., 2004; Keshavan et al., 2008) Sometimes grandparents serve in the custodial role only temporarily until fathers, or other relatives, take the child to live with them. Sometimes, mother attempts to look after the children on her own; in our clinic, these attempts have usually not proven successful, and the children are subsequently either returned to the grandparental home or are placed in foster care (Oyserman et al., 2000). Childcare agencies have, in the last two decades, turned more and more to kinship care when a child requires placement, with grandmother usually ending up as

Changing Role of Mother

the preferred person and the most willing to take on that responsibility. Of one hundred women permanently identified with the clinic, half have been mothers. Fourteen mothers had partners and brought up their children at home, usually with the help of extended family. Of the unpartnered women, eight were able to maintain care of their child although, in all cases, Children’s Aid was involved and the children were repeatedly, though temporarily, removed from the home. In four cases, a child was adopted by non-kin at birth. Four children grew up in the home of their father and step-mother. Mother’s siblings looked after the children of eight mothers, either informally or through legal adoption. Fourteen children of twelve mothers were raised by their maternal grandmothers. The grandmother frequently needed to simultaneously care for her ill daughter and her daughter’s offspring--amid family conflict and jealousy, inadequate resources, personal health problems, and concomitant work and family responsibilities. None of the grandmothers suffered from schizophrenia themselves, but strain was ever present, especially in the context of the daughter’s frequent relapses, disruptive symptoms, and impulsive behavior. Particularly stressful is the presence of chronic conflict between the generations (Ehrle & Day, 1994). The strain is understandably increased when the family is isolated, receives little outside support, and when there is only one responsible caregiver (Grandón, Jenaro, & Lemos, 2008; Ochoa et al., 2008). Financial Pressure Because many elderly people live on a subsistence income, taking on the care of a grandchild results in significant added financial pressure. Some grandparents sacrifice their jobs and quickly deplete their retirement funds (Minkler & Roe, 1996). The financial burden is compounded in families who also provide care for additional minor children, aged parents, or disabled family members.

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More than half (56%) of the participants in one study (Kelly, 1993) reported financial difficulties in rearing their grandchildren. To compound the problem, it is difficult for grandparents to obtain financial relief from sources available to parents and foster parents. Almost half the participants in research exploring this issue (Dowdell, 1995) did not receive U.S. Department of Health and Human Services caretaker/foster care payments. Six percent of custodial grandmothers in the online survey cited earlier stated that their feelings of satisfaction were impacted by a lack of resources from local, state, and federal agencies (McGowen et al., 2006). Problems of Children in Grandmother’s Care The children of schizophrenic mothers tend to suffer from behavioral, cognitive, and emotional problems, whatever the circumstances of their parenting (Hans et al., 2004; Keshavan et al., 2008; Schubert & McNeil, 2003); exposure to mother’s illness and separation from her, especially when it is abrupt, probably makes these problems more severe and more difficult for the grandmother to ease. Social stereotyping and teasing does not help--with peers often making fun of children whose “parents” are grey haired (Minkler & Fuller-Thomson, 2001). The 2003 U.S. National Survey of Children’s Health indicates, not surprisingly, that children in step, singlemother, or grandparent-only families have poorer health than children living with two biological parents (Bramlett & Blumberg, 2007). Health Problems of Caregiving Grandmothers Because of their age and the extra physical, emotional, and financial stresses of caretaking, grandparents undertaking this task are at risk for multiple health problems.

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The toll on a grandmother’s health may be considerable (Grinstead et al., 2003). The results of a recent study indicate that high levels of care provision to grandchildren may increase the risk of coronary heart disease among these women (Lee et al., 2003). Grandmothers with high levels of childcare demands have little opportunity to engage in their own self-care or preventive health behaviors, such as diet, exercise, and routine health examinations (Roe et al., 1996). Researchers have found that while grandmothers on interview tend to downplay their health problems (Minkler et al., 1994), the physical consequences of their childcare roles result in increased insomnia, hypertension, alcohol consumption, and smoking (Waldrop & Weber, 2001). Minkler and Fuller-Thomson (1999) found that, in comparison with grandparents who do not provide care, those who do are limited in at least one activity of daily living and rate their health as poor. Caring for grandchildren involves both physical exertion and commitment of time. The children looked after by approximately three-quarters of grandparent caregivers are infants or preschoolers who require considerable physical strength to lift, hold, bathe, and pick up after. The constant attention to safety is also stressful. In considering their findings of increased functional limitations, Minkler and Fuller-Thomson (1999) realize that care-providing grandparents are frequently reminded of their restrictions as a consequence of their child care roles, thus making them more aware of what they cannot do. A non-caregiving grandparent who has trouble climbing stairs, for example, faces the issue far less often than a similarly limited custodial grandparent who has no choice but to take the stairs many times each day, often with a child in their arms. This may lead to questions about the validity of the self-report findings, although they do conform with Lee and colleagues’ results regarding increased vulnerability to coronary heart disease in caretaking grandmothers.

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The day-to-day care of young children taxes the energy of an older person and also involves loss of sleep and exposure to repeated childhood infections (Jendrek, 1993). Time pressures and the added emotional and physical workload add to feelings of stress that impact marital relationships, social networks, and lifestyles (Jendrek, 1993). Moreover, caring for a grandchild may strain relationships with a spouse or other family members (Bowers & Myers, 1999; Weber and Waldrop, 2000). It furthermore reduces the time available for buffering stress through relaxation, hobbies, and socializing (Pruchno, 1999). Benefits of Caregiving

Hughes and colleagues (2007) studied a sample of 12,872 grandparents aged 50 through 80 from the Health and Retirement Study and, in contrast to other researchers, found no negative effects on health from caring for grandchildren except for single, sole charge grandmothers who rated their health as relatively poor. The variability among grandparents found by Hughes and colleagues (2007) is consistent with the idea that the health effects of providing care to grandchildren are contingent on context and circumstance. For most grandparents, the demands of grandchild care are balanced by the benefits inherent in caregiving. Caring for a grandchild may lead, for instance, to a more active lifestyle, healthier meals, and a reduction in tobacco and alcohol use. Many grandparents feel that caring for their grandchildren makes them feel younger, healthier, and more active (Pruchno & McKenney, 2002; Waldrop & Weber, 2001). In the online study referred to earlier, grandmothers at each level of care (custodial: 49%; co-resident: 29%; nonresident: 62%) felt that caring for a grandchild had enriched their life and made them happier. Being needed in their grandchild’s life contributed to their feelings

of achievement. They reported a renewed sense of purpose, more joy in their lives, and the conviction that child care kept them more active and feeling younger. At the same time, they reported less private time, less freedom, and less couple-time with their spouse. Many had been looking forward to an empty nest and retirement, dreams that had to be put aside. Grandmothers also admitted being isolated from peers because others in their age group were not interested in children’s activities. Nevertheless, custodial (32%), co-resident (23%), and nonresident (45%) grandmothers feel that the rewards and blessings of caring for their grandchildren far outweigh any sacrifices they are called upon to make (McGowen et al., 2006). Like parents, caretaking grandparents delight in their grandchildren’s developmental phases, but as Theresa Benedek wrote with respect to parenthood (Benedek, 1959), at each successive stage, comparisons from past experience cannot help but surface. For the grandmothers in our clinic, the comparison is with the children’s mothers, whose childhood development culminated in profound illness. These grandmothers worry if the grandchild is too much like the mother but are, on the other hand, grateful for a second chance to make things right. The stakes are particularly high when the grandchild approaches the age at which the mother began developing prodromal psychotic symptoms. This phase presents challenge, but also opportunity. Factors Affecting Perception of Burden

The difference between felt burden and felt joy appears to depend, to a large degree, on available resources, both social (Grinstead et al., 2003) and financial (Hughes & Waite, 2002). Of the three online groups referred to earlier, the co-resident group--in which the child’s parents are living with the grandpar-

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ents--reports being least content (McGowen et al., 2006). Caregiver burden is increased in the context of poverty, poor health, and low family support (Dowdell, 2004). Role conflicts, such as grandmother versus mother, increase the stress. Depression scores for grandmother appear to rise only when the child’s parents live in the household (Szinovacz, Deviney, & Atkinson, 1999; Blustein, Chan, & Guanais, 2004). The strain is especially felt when it is not normative in one’s culture to look after one’s grandchildren (Goodman & Silverstein, 2002). In this sense, cultures where it is traditional for grandmothers to take on the role of raising grandchildren fare better. In such cultures, grandmothers are more likely to benefit from the role and less likely to suffer ill consequences. Although the caregiving grandmothers in our clinic come from varied backgrounds, there are too few to confirm this finding. It would be important to be able to compare custodial grandparental stress when a parent suffers from schizophrenia versus grandparental stress under other circumstances, but findings sorted by diagnosis of the parent are not available. In a rare diagnosis-specific study, Daphne (2000) explored the physical and emotional health of grandparents raising HIV-affected grandchildren. The findings generally underscored the emotional resiliency of grandparents despite substantial emotional distress. Divided Loyalties The best phrase to describe the grandmothers in our clinic population is “torn between two poles” (Erbert & Alemáin, 2008). They worry about the future and what will happen to the children once they, the grandparents, are gone. They want to feel close to their grandchildren but, at the same time, want their daughter to get well and be able to take over the role of principal caregiver. As much as they want their daughter to be well

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enough to have a say in the children’s upbringing, however, they cannot help resenting her periodic intrusions into what has become “their” domain. Negotiating parental boundaries is difficult. They see the mother’s fitful interventions into child-rearing as confirmations that she is not thinking logically, not taking the children’s best interests into account. They feel the pull between commitment to the welfare of their grandchildren and responsibility for their ill daughter. They are never sure how much they can depend on her to be answerable to the needs of her children. They regret the loss of the traditional grandparent role they might have had. They miss being able to indulge the children, have fun with them as ordinary grandparents do, and are instead obligated to educate, discipline, and do things “right.” Eleven percent of McGowen (2006) custodial grandmothers regretted the loss of the traditional grandmother role and resented having to be the primary disciplinarian, caregiver, and provider. While recognizing that, in many ways, they are fortunate to have the opportunity to parent again--and to perhaps do it better this time around--these grandmothers also appreciate how much they are sacrificing--free time, time to pursue interests and vocational goals, vacations, self-indulgence, and selffulfillment. One of the clinic’s grandmothers illustrates this well. She was a musician of considerable renown who now has no time to practice, no time to train for concerts. She readily gave up her former ambitions in order to take in her daughter’s two sons, but resentment is readily seen not far below the surface. The grandmothers’ attempts to create a safe haven for their grandchildren often translates into establishing a distance from the mother and her schizophrenia, the often unsettling behavior, the stresses, and the interpersonal entanglements. Grandmothers resent the mother visiting the children when it proves disruptive; and they resent it when

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she petitions the court to return the children to her. The grandmothers’ overwhelming fear is that the children will be returned to the mother before she is well enough to provide the care they need. They see the daughter’s influence on the children as upsetting and feel a constant temptation to keep them away from each other as much as possible. They are determined not to let the children follow the mother’s lead into mental illness, homelessness, poverty, victimization, substance abuse, and, sometimes, crime. At the same time, clinic grandparents usually do try to maintain the link between the children and their mother, and to strengthen it whenever possible. Caretaking grandparents may be put into situations where they have to engage in an adversarial process with the mother or even to sue her for custody. Through it all, they very much want to preserve the good will between mother and children. Conclusion

This image of the troubled, burdened victim of circumstance, brave in the face of adversity, competent and capable, has replaced that of the domineering, overprotective, rejecting schizophrenogenic mother. And yet the protagonist is the same--the mother of a child with schizophrenia. What has changed over the last 60 years? As early as 1978, Lamb and Oliphant (1978) realized that families were primary care agents for long-term patients released from mental hospitals. These authors clearly stated that mental health professionals could help families by providing practical, realistic advice on how to deal with the illness by offering empathy and support rather than blame. Since that time, the family consumer movement has become a dynamic force in mental health policymaking (Sommer, 1990). As a result, psychiatry has shifted from attributing fault to parents when mental illness occurs in the family. Nature is being blamed more than

nurture, although that balance constantly swings and is likely to alter again. There already exists, for instance, a recent but accumulating literature linking early psychological trauma to psychosis (Morgan & Fisher, 2007). The profession has become more scientific, so that attribution needs to be scientifically proven in order to be convincing, and on the whole, it is easier to prove burden than to prove cause, especially when cause is multidetermined. Perhaps burden is more evident because the care of the person with schizophrenia has moved to the community, and mothers have been co-opted as auxiliary treatment staff. They are needed and they have stepped up to the plate, to the approbation and admiration of health care professionals. They are needed to care for their children, and, more recently, for their grandchildren and, as maligned as they have been in the past, they are now seen as successfully accomplishing a difficult task. Most frequently these days, they are viewed as bereaved (Atkinson, 1994; Miller, 1996; Osborne & Coyle, 2002), in need of comfort and support. It is widely acknowledged that they deserve psychoeducation and training for their new roles (Drapalski et al., 2008). Although parents have assumed the responsibility and the right to care for the patient and, if necessary, for that patient’s children, neither the legal system, mental health practitioners, nor the ill family member necessarily recognize that right. This lack of recognition and lack of adequate resources negatively affect the caregiving experience; they aggravate the stress and the experience of grief; they undermine health and well-being (Milliken, 2001; Milliken & Northcott, 2003; Milliken & Rodney, 2003). Services directed toward supporting the family caregivers of persons with mental illnesses are few, despite the fact that such interventions may have the potential to improve outcomes for both the caregivers and their family members. The written narrative responses of 76 family caregivers

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from National Alliance for the Mentally Ill (NAMI) chapters across the United States indicate that their concerns are relationship issues, service issues, and broader social system issues (Doornbos, 2002), themes that have, thus far, had limited impact on mental health policy (Sharfstein & Dickerson, 2006). But times are changing and are mov-

ing rapidly toward shared decision-making among professionals, patients, and families (Schauer et al., 2007). The woman who was a schizophrenogenic mother and is now a multigenerational caregiver is en route to becoming an auxiliary therapist and a valued colleague.

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