The Longest Bereavement:
Adult Offspring of Parents with a Schizophrenia-spectrum Disorder

Copyright 2004 by Sharon Smith, PsyD
mainelyneuropsych@prexar.com

Summary of Review of Literature
Deinstitutionalization changed the locus of care for most individuals with serious mental illness from state institutions to the community, where families often shoulder the caregiving responsibilities. Among the categories of family members who attempt to help the ill individual, one that has heretofore received little attention is adult children. Some adult children who are currently in a caregiving role for a parent who has a schizophrenia-spectrum disorder were raised by that parent. Possible effects of childhood experiences of parental illness on a current caregiving relationship between the adult offspring and the ill parent have been to date only tangentially explored.
The focus of this project was the exploration of the perceptions of adults raised by a parent with schizophrenia (APS) about the effects of childhood experiences on a current caregiving relationship with the ill parent. In this investigation, APS who currently considered themselves to be in a caregiving role with the parent were asked to discuss that role, any perceived origins of that role in childhood, and current conflicts between fulfilling their perceived responsibilities to the ill parent and to other family members. They were also asked for their views of the effects of their parents’ illness on current caregiving efforts. Themes identified in prior work are explored, including ongoing resentment of the ill parent (and other family members) for lack of appropriate nurturance in childhood and adolescence; grief for loss of a “normal” parent-child relationship; and strong desire to parent their own children better than they themselves were parented.
These and several other issues mentioned in prior literature arose in participants' narratives. They discussed, for example, the parent’s resistance to receiving appropriate care, frustration with both public policy and clinicians (e.g., a valuing of psychotic patients’ civil rights over their right to receive appropriate treatment; the role of confidentiality in preventing vital communication with professionals treating the parent; and clinicians’ lack of information and insight into APS's existence and needs, in both childhood and adulthood).
A philosophical assumption of qualitative research is that “knowledge is within the meanings people make of it” (Creswell, 1998, p. 19). The results of this study may help APS who have suffered from an unpleasant or painful sense of the stigmatizing uniqueness of their situation to find, in this discussion of concerns similar to their own, the comforting sense of universality that Yalom (1995) has referred to as a “welcome to the human race” experience (p. 6). In addition, exploration of APS's experiences and beliefs is expected to be generally helpful to clinicians who work with them (Caton, Cournos, Felix, & Wyatt, 1998; Dunn, 1993; Klein, 1990; Marsh & Dickens, 1996b, 1997; Marsh & Johnson, 1997; Williams, 1998).
This study also has potential to inform psychologists’ efforts to address problem areas already noted in the literature. It aimed, for example, to increase therapists’ awareness of family burden and the importance of reducing potential conflicts between client and family (Hatfield, 1997; Nicholson, Geller, & Fisher, 1996); to ensure that the parenting status of patients with serious mental illness is noted in their charts and attended to in treatment planning (DeChillo, Matorin, & Hallahan, 1987; Mowbray, Oyserman, Zemencuk, & Ross, 1995; Nicholson, Geller, & Fisher, 1996; Rutter, 1994; VanHaren, LaRoche, Massabki, & Colle, 1993); to view APS as individuals with needs of their own who happen to provide care for an ill parent (D. L. Johnson, 1994); to be aware of themes that might be expected to arise within APS's own psychotherapy, such as combinations of loyalty to the ill parent with guilt for growing up and moving out (Dunn, 1993) and possible difficulties parenting their own children (Williams, 1998), and to encourage clinicians to increase their awareness of the rapid advances in treatment that have occurred in recent decades(Shea, 2002).
Research into the caregiving experiences and perceptions of APS has potential to inform policy and program development for individuals with serious mental illness and their families (Caton, Cournos, Felix, & Wyatt, 1998). Specifically, it may shed light on areas already depicted in the literature as problematic. Examples include caregivers’ interactions with the service delivery system in general(Marsh & Johnson, 1997; Torrey, 1995b); pre-discharge planning for hospitalized patients and case management for patients in the community (Wegner, 1990); managed care companies’ decisions regarding payment for family psychoeducation (Lefley, 1994); public funding for provision of a support system for parents who have schizophrenia (Mowbray, 1998; Nicholson, Geller, Fisher, & Dion, 1993, Nicholson, Geller, Fisher, & Dion, 1993b; Sands, 1995); and ways in which psychologists may work to reduce social stigmatization of families in which a member has schizophrenia (Lefley & Wasow,
1994).

Overview
This section provides an account of factors and themes that emerged from the analysis of the narratives of adults raised by a parent with schizophrenia (APS). APS's voices are often heard here, depicting their experiences and perceptions in their own words. While interpretation and speculation were inevitable in the process of selecting and ordering exemplars, the main thrust of the section is description. Description provides a sense of the relationship among variables I have tentatively identified within each axis, and also permits the reader to trace my steps from the transcripts to some hypotheses that will be offered in the general summary.
The project's goal was to reveal APS's experiences and perceptions by presenting exemplars in each relevant area. This chapter describes both the process of collecting and analyzing information and the patterns or themes which emerged in participants' narratives. The guiding research question was “How do APS perceive any effects of their childhood and/or adolescent experiences with the ill parent on their current efforts to provide some level of care for that parent?” To answer that question, I collected data in three broad areas: participants' childhood and adolescent interactions with the ill parent and other family members; their current involvement with the ill parent and other family members; and their perceptions of the effects of the former on the latter. The information in this section came from APS's responses to the Background Questions and Probes. Each participant chose a code name to which his or her responses to my e-mails would be attributed.
Numerous themes and concepts arose in the course of e-mail dialogues with participants. I used qualitative research software to organize them in ways that encouraged systematic and comprehensive analysis through the course of a flexible data collection process, and permitted differences of opinion to emerge and be noted. When all participants' data had been collected and analyzed, a peer audit was used to determine the fairness of the research process and the accuracy of my findings in terms of internal coherence. After the data were analyzed, the research questions, though valid and useful as starting points, came to appear limited in scope. Analysis of data revealed a cornucopia of APS's experiences and perceptions.


Data Analysis
Initial Steps:
I maintained a process and progress log throughout this study. The following information comes from that log. Nine of the 11 participants joined this study within the first five days following its advertisement, and the last two joined the following week. Thus, for the most part, e-mail dialogues evolved simultaneously. Each time a message arrived, I read and reread that individual's transcript (a collection of e-mails arranged in chronological order, along with my own responses), in order to situate the incoming information and my reply within the participant's personal narrative. I summarized each person's newly arrived information in my own words and started my reply with the summary, inviting the participant to let me know what I was correctly understanding or misperceiving of their experiences and insights. In addition, I asked at least one new question. Participants readily grasped this process, and sent back copies of my message with their own comments interwoven (e.g., “Actually, I think it was my elder sister who told me the diagnosis. She was 12 at the time”). When they responded to my new question(s), the process repeated.
I roughly presorted data in three ways, using the QSR software program for analysis of qualitative data: by topic (e.g., all participants' responses to the background question “please BRIEFLY describe your parent’s symptoms. . .”); by participant (e.g., a checkoff indicating which “probe” topics remained to be asked of or clarified by a given individual); and by demographic information (background data entered into a spreadsheet program). Once the majority of participants' pre-sorted files were about 75% complete, I read all interview transcripts through at once, to gain an overall sense of APS's experience, and to note phrases or sentences suggestive of emerging topics and themes. As expected, the data did not fall into neat categories. Many potential links between different parts of discussions or observations came to mind, and were entered in a file of their own.
I then reread the files and copy/pasted excerpts into new files organized by theme (e.g., “feelings toward ill parent”), to identify key topics and issues in each text. Theme files were then perused individually and as a whole, so that excerpts could be reassigned and themes regrouped as new data continued to arrive. I validated thematic clusters daily by following their codes back to the interview transcript to determine if the clusters omitted any information or conveyed anything not present or implied in an individual's transcript. I used my “themes” list as a set of points with which to ask questions of the narratives, and summarized each of them.
A dozen or so themes were emerging in some participants' narratives but not in others, so I developed a new set of files in which to pre-sort them by topic and by participant as above, and began inquiring about these topics in each ongoing dialogue. As before, I provided my own “take” on new information, and participants responded with assent and/or clarification. The quest to identify relationships among the various themes and concepts in APS's narratives begins in the sections that follow.

Responses to the Core Question
As noted earlier, in response to direct questions every participant reported that his or her parent exhibited behavior consistent with a diagnosis of a schizophrenia-spectrum disorder while the APS was growing up. In addition, there were spontaneous reports of other parental behavior, including positive interactions, various types of abuse, and neglect. I tentatively abridged and combined sentences and phrases from our ongoing dialogue with what each person had initially written in response to the core question; then I e-mailed this to each participant for review and made the changes they suggested (Appendix U)
First, I analyzed participants' responses to the core question (“How do you perceive any effects of your childhood and/or adolescent experiences with your ill parent on your current efforts to provide some level of care for him or her?”) in terms of the APS's current feelings toward the parent and the type of care he or she provides for the parent. As I reread all participants' full narratives in the context of these categories, a set of labels emerged that were roughly descriptive of the APS's current feelings (yearning for parent's love, love for parent, hope for closeness) and caregiving efforts (frequent contact, support, duty). Each label had an obverse, e.g., lack of yearning, hatred, hopelessness; lack of contact, nonsupport, motivation other than duty). I did not further refine these labels (e.g., develop criteria for small, moderate, and great frequency of contact), because their statistical significance was not an issue due to the small number of participants in this study.
Next, I studied the APS's examples of the ill parent's caregiving behavior toward them in childhood and adolescence, and the APS's recollection of their own feelings during those years. Tentative patterns emerged, but also important exceptions to the patterns. These will be addressed in the Discussion section. To gain greater understanding, I also encouraged participants to explore a number of topics and themes that my reading of the literature suggested might have influenced their then-vs.-now relationships with the ill parent. Following a brief introduction, the results of this process will be explored through the lens of Bernstein's (2000) three-axis heuristic: Brain, Context, and Developmental stage.

Analysis of Narratives
Overview
Participants' narratives strongly suggest that these APS were at substantial risk as children and adolescents–and that they have experienced widely varying types and amounts of support across the years. This study employs a developmental perspective in order to place each individual's behavior in relation to both internal and external contexts (Sameroff, 2001). Specifically, Bernstein's (2000) theoretical framework of pediatric risk assessment--brain, context, and development--is utilized to organize the data for closer examination. Within this framework, the effects on children of being raised by a parent with a schizophrenia-spectrum disorder can be examined in terms of the child’s genetic loading for psychopathology, the child’s social context, and his or her development from infancy into adulthood.
Brain
Genetics
Bernstein (2000) describes the construct of “brain” as simultaneously a dependent and independent variable. Applied to APS, this construct would comprise two concepts familiar from the risk-and-resilience literature: the possibility that a child’s brain has a structural and/or neurochemical predisposition to mental illness, and the child's intelligence. Brooks (1994) specifies “higher intelligence, and more advanced problem-solving skills, cognitive-integrative abilities, social skills, and coping strategies” (p. 545).
It is undisputed that genetic factors are involved in the transmission of schizophrenia-spectrum illness. While the precise mechanism of transmission remains a matter for genetics researchers to untangle, the diathesis-stress model suggests that the behavioral expression of any biological vulnerability for schizophrenia must be triggered by exposure to stress. However, considering the variety and possible combinations of criterion-meeting symptoms, most questions about etiology are unlikely to be answered soon.
The prevalence rate of schizophrenia in children who have one parent with schizophrenia is 12% (Kaplan, Sadock, and Grebb, 1994). All that can be safely stated of participants in this study is that since all had at least one close relative with schizophrenia, they, their own children, and their siblings may be assumed to be at higher risk of serious mental illness than the general population. One man, for example, has two sisters and a brother who have schizophrenia. One woman's son has schizophrenia. One participant reported that she herself has been formally diagnosed with schizophrenia. Estimation of the balance of participants' risk with constructs such as resilience was outside the scope of this study.
The one participant who has been diagnosed with schizophrenia reports that her initial assumption was that her own symptoms of schizophrenia were caused by living with her very ill mother. This notion appeared to be borne out when she moved farther away from her mother, and her own symptoms subsided: “. . . they were pretty mild most of the time. Mostly, I had visual hallucinations, but I heard voices sometimes too.” Several years later, when she moved closer to her mother, “Right off the bat, I started having really bad symptoms. They would increase in their intensity whenever I was around my mom. I was hospitalized the first time when I was about 34.” Since then, she has been stable on medication and sees a therapist regularly. She notes, “It took a while to discover that sz can be a heritable condition. I still had abuse issues to deal with, but could no longer blame my sz on my mother.” No participant spoke of blaming or being angry with the ill parent in the context of genetics, though all participants--and their children–are at higher risk than the general population. Rather, several hold the parent culpable for his or her often-abusive behavior toward them and other family members.
Intelligence.
The second concept under the rubric of “Brain”--familiar from the risk-and-resilience literature--is intelligence (cf. Werner, 1989); this of course overlaps with “Genetics.” Although compilation of hard data on participants' level of performance in the realms Brooks (1994) lists was beyond the scope of this study, it was possible to surmise intellectual level in individuals who mentioned their academic or professional achievement. One had a year of college. Two were full time college students: One was taking premed courses. Two had graduate degrees and worked in professional fields. One woman was vice president of a corporation. Nevertheless, there was no way to estimate or compare participants' intelligence, or to correlate it with any other factors. For example, APS's ability to obtain a college degree or professional career may have been affected by nonintrinsic factors such as lack of money for tuition, lack of family support, or the presence of cultural mandates which discouraged or proscribed higher education or careers for individuals of their gender or race (e.g., Bachrach & Nadelson, 1988).
One woman emphasized the importance of support from her teachers: “. . . at this time [adolescence] I was doing quite well in my school and got the support of a lot of my teachers, . . . none of whom knew abt mom . . . and I used to get a lot of appreciation for my activities . . . I am [now] a psychiatrist by profession.” As we learn more about her journey from rage and alienation to loving acceptance of her mother, her intelligence will continue to be in evidence, along with the self-esteem she gained by doing well in school.
Context
Overview
I have discussed certain APS in relation to the internal construct of “Brain.” Now, still working within a developmental perspective, I will examine APS through the lens of the construct called “Context.” Mowbray (1998) notes that a parent's diagnosis “does not appear to consistently predict the level or the nature of the behavior or performance problems that children have” (p. 12). She emphasizes the likely role of the child's and family's context as a set of intervening experiences.
Context is a topic on which participants provided detailed information, as the stress and concern associated with chronic psychiatric illness can give rise to serious family problems. A family may live from crisis to crisis, becoming ever more baffled and bewildered by the parent's illness. In such circumstances, children's needs may be postponed or neglected altogether. A child or adult's context can include not only home and school environment, but also psychosocial factors such as culture/ethnicity, socioeconomic status (SES), parental behavior, and the presence or absence of a supportive extended family and/or community.
Culture/Ethnicity
Most participants did not discuss the role of culture or ethnicity. The exception was a Hindu woman in India. In her culture, she notes, family members are intimately involved in one another's lives. “"Parentification' isn't technically known to exist or taken note of [in India]... it just is... it is the done thing... the accepted thing for young children to take over "parent" roles within an extended family.” For example, “during [a psychiatric inpatient] admission, [a relative] would live in with the patient and would participate in day care and in giving meds etc.” Although her mother does not require hospitalization, much in-home family support has been necessary over the years. Only in the past three years has her brother “felt secure enough to pursue his career in another country with his family.” This daughter notes, “bit by bit I have started etching out an independent life and have managed to make a lot of room for myself within our family and society.” For instance, although she continues to live at home, her profession as a psychiatrist requires her to work some nights and 24-hour shifts every week. For convenience, she rents a small room near the hospital where she practices. She reported that, after years of struggle with her mother's symptoms, “As a family we are much closer and better adjusted than ever before.”
Socioeconomic Status (SES)
As the risk-and-resilience literature attests, socioeconomic status has potential to affect families in which a parent has a psychiatric illness. A downward spiral of reciprocal effects may occur, in which impairment across functional and occupational areas of life leads to ever lower socioeconomic status and residence in marginal neighborhoods (e.g., Aro, Aro, & Keskimaki, 1995). These factors, in turn, provide additional stress for the parents and children alike. In the current project, several APS reported that the well parent, or other family members, managed to provide a good living for the family, often against great odds. Some ill parents had spouses who managed to provide a good living. When participant was a child, the family was “rather poor . . . . there wasn't much money to go around, much less money for psychiatric care.” Yet as time went by her father managed to pursue a career in real estate, while providing what amounted to full time caregiving to his wife, though at tremendous personal cost. One well father was a physician, another was a career military officer. While both describe emotional disarray in the family while they were growing up, this was apparently not compounded by indigence.
Symptoms and Course of Parent's Illness
Also found under the rubric of “context” is the transactional process of severe mental illness on parent, and child, as they engage with each other in the context of waxing, waning, or chronic symptoms of psychiatric or comorbid illnesses. Contextual factors are sometimes neutral or benign. Yet it is well known that they can also be lethal: every year, children are harmed or even killed by a parent in the toils of a florid psychotic episode. Mowbray (1998) emphasized that parental diagnosis, per se, fails consistently to predict the outcome for children. Based on the narrative reports of APS in this study, it appeared that day-to-day parental behavior, rather than a list of symptoms that meet criteria for diagnosis, would be a more useful concept in this regard. For this reason, the concept of “symptoms,” as used here, also takes in the parent's non-illness-related behaviors, such as abuse or neglect, and positive interactions between parent and child.
Earlier, I noted that all participants described their ill parents as suffering from an aggregation of symptoms consistent with a schizophrenia-spectrum disorder. Their narratives provided a finer-grained delineation of the child's “context” of parental behavior than do most research articles. Positive symptoms included paranoia, delusions, and hallucinations. For example, after one father crashed his truck, he was: Very paranoid, said people were chasing him, and that he got away . . . . All the way home, he told my bro to watch what he says and does due to the fact 'people' will come after them and try and kill them. . . . He even thought one time that I was going to cut his throat . . . . He also thought the food was poisoned, he went without eating for 14 days one time.One ill father may have had a delusion that his wife was unfaithful, as his daughter reports he would “accuse [Mom] of being somewhere where she wasn't, and accuse her of dating other men. Which all was not true. She had to watch every move she made, he was very controlling.”
Another describes her mother's “. . . strange ideas. She once threw all our books away because the house got too heavy.” Another mother “sees the world as a sinful, hostile place.” When seriously ill, another developed a delusional process in which her daughter had a role as persecutor. One mother “had the television turned so the screen faced the wall. She was telling [my sisters] she didn't want us to watch television any more because the devil was coming out of the TV.” Another “told us crazy stories such as being a member of the British royal family who was abducted as a child.”
Most parents were described as having hallucinations. One “claimed that messages were being sent to her through 'voice boxes' by the government.” Another “Heard voices, talked to herself [and] looked at herself in the mirror while talking to the voices.” The latter mother also had visual hallucinations, and “told us [children] our faces were mutilated by bad people during infancy.” Although one APS's mother “never told me that she heard voices until I was older,” she often “laughed without any motive. She called that being 'secretly amused.'”
One participant's mother had olfactory hallucinations, and “would swear she smelled ammonia coming from the garage [below their apartment] and that the people downstairs were trying to poison her. She would yell and scream through the walls at them.” Another's father “thought people were pumping gas into the house, in the middle of winter he had the doors and windows all open.”
Several parents were reported to have negative symptoms of schizophrenia, as well.
Negative symptoms can include anhedonia, poverty of speech production or content, lack of emotional expressiveness, catatonia, and avolition. Sometimes included in this category are emotional withdrawal, asociality, motor retardation, inappropriate affect, and impaired attention.
One woman's mother suffered from catatonia in addition to paranoia and delusions. Another woman spoke of her mother's “lethargy, inability to find pleasurable things to do,” as well as her “paranoia, delusions, [and] agitation.” A man whose mother has been institutionalized for decades with a diagnosis of paranoid schizophrenia depicted his childhood home with her as “a total pigsty”. Another APS explained that, for a few years after her mother's psychotic break her major symptom was “the loss of affect.” Though she went through the motions, “she simply had no notice of her children's cognitive, emotional, bonding needs.” This daughter noted that “As the years went by the neglect and inattention increased.”
The course of parental illness was variable: some afflicted individuals' illness followed a static course, while others experienced a series of relapses and remissions. The ill parent's spouse and children were likely to experience feelings of sorrow and bereavement, both at the onset of illness and as it progressed. A steady downward course had potential to be discouraging. Yet a relapsing/remitting course could make it difficult for family members to deal with their feelings: they might come to terms with one puzzling or dangerous set of symptoms, only to discover new ones unexpectedly arising.
Several participants stated that the parent's symptoms followed a steady or downhill course. After one man's mother became ill, when he was seven years old, she regressed to the developmental level of a “six-year-old” and remains at that level to this day. Another person's mother has never had a remission. Most APS, however, described a relapsing/remitting course. Another mother has gradually improved in the past five years; her daughter attributed this to medication compliance and “an increased awareness and openness within our family about her illness and how to handle her outbursts . . . with less emotional reaction and more calmness. . .” Another participant also attributed her mother's pattern of stability and relapse to taking medication “about 27 years, with every once in a while a stop. With all the consequences.” To her great frustration, her mother recently stopped taking her medications.
One mother had severe depression with psychotic features and “although [she] had a few weird periods when I was little . . . managed to stay out of MH facilities .. . .” One participant noted that “a combination of late onset [of his mother's illness], supportive family, and the ability to escape helped save me.” His mother experienced “periods of relative wellness interrupted by relapses [for many years]. . . .” For the past five years, though, she has been in a “permanent mild psychosis.” One mother enjoyed a long remission during which she worked as a teacher. But when her child was about fourteen, the mother lost her job and had a relapse. This APS's own psychotic break occurred at about this time--a coincidence which, as noted above, she took as proof that her illness was not biochemical in origin but the result of enduring the stress of her mother's illness.
One woman was uncertain how old her father was when his schizophrenia began, or of its course. He abused alcohol from his adolescence through adulthood; when hospitalized for a stroke in his early 50s, he was formally diagnosed with schizophrenia, the onset of which was said to have predated his alcoholism. This diagnosis made sense to the family in light of his paranoid statements and behavior over many years. His symptoms “grew worse after [his] stroke, but [he] is much better now . . . no episodes in two yrs” on his present medications.
Comorbidities
In addition to their symptoms of schizophrenia-spectrum illness, several parents reportedly developed one or more medical conditions. Alcoholism and abuse of other drugs can have a relatively early age of onset; physical injury and cancer can strike at any time. Among these participants' parents, illnesses such as anorexia, stroke, dementia, and sequelae of brain surgery occurred some decades subsequent to the schizophrenia symptoms described above. For example, about four years ago, one mother, who was in her 70s at the time of this study, sustained a soft tissue injury to her back that added difficulty in walking to her (and by extension, to her son's) life challenges.
One man reported that his father–in his seventies– was “in far better physical condition than most forty-year-olds.” Other parents of APS in this study were not so fortunate. One’s father was “a very bad alcoholic,” though recently her “bro figured out [their father's paranoia] was probably the illness working on him and not just the alcohol.” Another's mother, in her 50s, had cancer. At age 52, one father had a stroke. His physicians “kept saying it was blood clots in his brain that was doing that, but I didn't believe them. . . . Of course eventually the drs finally diagnosed him [with schizophrenia].” She now provides total home care for him. One parent, presently in her sixties, was diagnosed with a malignant brain tumor six or seven years ago, and became aphasic following surgery and chemotherapy.
While their parents' substance abuse and new-onset medical conditions contributed to the challenges APS face–such as caregiving burnout--to some degree they may also have served to normalize the parent's behavior in the eyes of a society that has adjusted to relative openness about a parent's drinking or dementia. One APS's mother, for instance, was in her eighties. A few years ago, she had a mild stroke, her second one, adding dementia to her list of cognitive symptoms. The daughter reflected on differences between a “normal” dementing parent and a dementing parent with premorbid schizophrenia: when it starts to come to dementia, it is 1) hard almost to separate one from the other since a lot of the behavior is so similar and 2) hard to be sympathetic about the dementia since we're all so darned fed up with the whole sz thing. However, I believe that for a "normal" parent, those kids would be truly worried and feel bad, etc. because they know it's "only dementia" and have had an otherwise normal life . . . the offspring aren't buying the sympathy part and the regular families are. . . . If you tell people your mom has Alzheimer's, it's ok. If you tell people your mom has sz, their eyes glaze over.

Tangentially Illness-related Parental Behaviors
Of course, not all of an ill parent's behavior is directly related to psychiatric or medical illness. For the purposes of this study, it was not necessary to untangle possible roots of any given behavior. Some parental behavior consisted simply of garden variety parenting–positive interactions and nurturance. In the face of serious and chronic psychiatric illness, a number of parents did provide their children with sufficient nurturance to create a permanent and positive emotional bond. One APS recalled that, prior to her illness, “My mother read to me. She taught me to read. She played card games with me. She was my beloved friend.” One mother's brief interludes of remission and insight, which made her agonizingly aware of all they both had lost, did grant her mother opportunities to apologize for her conduct. Initially, “that was extremely confusing for me . . . and then extremely painful and emotional.” Over time, though, this woman decided that her mother's erratic behavior during her “bad times” was not her “inherent self.” Such an ability to accept that a parent's behavior is a function of illness rather than any deficiency in themselves or parental malevolence can be an important factor in healing.
In order to avoid priming APS with the notion that parents who have schizophrenia are abusive, none of the background questions or probes asked for examples of abuse. However, a number of participants spontaneously reported that they were abused and/or neglected while growing up. Although the literature on child offspring of parents with schizophrenia is rife with stories of abuse, one woman complained. My mother's current shrink repeatedly says that violence is no more prevalent among schizophrenics than in the general population. I believe he is referring to those that end up as news headlines, like Andrea Yates. I believe he is clueless as to how much abuse is committed by sz's toward their children.
Four major types of child abuse are generally recognized: physical, sexual, and emotional abuse, and neglect (Administration for Children and Families, 2002). Child abuse is by no means limited to individuals who have a psychiatric illness. However, a parent who has a thought disorder may be even less likely than a “well” parent to understand the effect of his/her destructive behavior.
Some child abuse is physical. One mother once threw a hot iron and scissors at her child. During another mother's exacerbations of illness, she “hit me and my brother and dad several times . . . bit my brother . . . etc. etc.” Another individual reported that when she was “very young,” her mother “would get agitated very easily. Then we were beaten . . . . The abuse stopped for me when I was 18 and went to college. . . . The emotional abuse continued, however - she just wasn't hitting us anymore.” In second grade, when one child was given detention, “My mom came to school and in front of everyone, beat me to within an inch of my life.” One APS's mother “gave me and my brother, who [now] has schizophrenia as well, every day soap and yeast to eat. We had to keep clean inside.” Some APS specifically stated that they were never physically abused. One offspring noted that “fortunately, Mom never physically abused any of us kids. So, the kinds of things we had to deal with were her mood swings, her sometimes bizarre behavior, her argumentativeness.” One ill father “was a very mean man, beat my mother and one of my brothers, so I was very afraid of him.”
No participant in this study spontaneously referred to sexual abuse. Since the purpose of this research was to explore APS's own perceptions of their childhood and adolescent experiences–and not the author's preconceptions about types of abuse they might have encountered–I did not query them about any experiences of sexual abuse. Considering that sexual abuse is sadly prevalent within families of all descriptions, and that plentiful research indicates that children who live with a psychiatrically ill parent are at risk for a broad spectrum of perils, it is plausible that one or more APS in this study were sexually abused but chose not to discuss this in our conversation.
A third type of abuse, in addition to physical and sexual, is emotional abuse. (e.g., Garbarino, Guttmann, & Seeley, 1986). One example of emotional abuse would occur if the parent abused other children or adults in the child's presence. Several participants in this study reported that the ill parent who abused them abused their siblings, as well. Another example of emotional abuse could occur around a parent's severe mood swings. This study did not attempt to explore specific sequelae of such experiences among participants. Garbarino and colleagues indicate that a child in such a situation might lose (or fail to develop) a clear sense of how his or her actions affect the parent. Unsure how the parent might respond, he or she might become hypervigilant, and dread both the parent's potential actions and his or her ordinary conversation.
One woman described being terrorized, a form of emotional abuse that overlaps with physical abuse. When she was eight years old, and her brother 12, their ill mother threatened them with a knife. It is also emotional abuse, however unwitting, for a parent to encourage a child to share in his or her delusion(Rutter & Quinton, 1984). When one child was six, she told two classmates, "'My mama is really the queen of England. She was kidnapped when she was little and brought to America. Nobody knows about it but her and me. That makes me a princess.' My two little friends' silence was deafening and I felt foolish.” This outcome, though humiliating, did serve to protect the child from the folie-à-deux into which her mother had been inviting her. As she grew up, she first extended her index of suspicion to include everything her mother said. By her twenties she “realized that there were many things she told me that were factual, but I had blown them off as more of her delusions.”
Another APS experienced emotional abuse of another sort each time his mother became suicidal, usually “through wrist slashing and drug overdoses,” although his father and grandparents attempted to shield him. One night she drove her car off a cliff. She survived but with a broken back. He noted, “I'm grateful that she did not choose to awaken us and bring us with her.”
Neglect, another form of child abuse, springs from an ill parent's passive indifference to children's well-being, such as failing to feed them, or leaving them to fend for themselves for an extended time (Garbarino, Guttmann, & Seeley, 1996). Neglect can include failure to teach the child basic hygiene; omitting or delaying necessary health care; abandonment; inadequate supervision, and parentification. Neglect can also include ignoring the child's needs for nurturance and affection and failing to provide needed psychological care. A mother suffering negative symptoms, for instance, might be physically present while emotionally absent. When a neglectful parent is emotionally unavailable, the child may feel rejected and become sad, withdrawn, or resignedly self-reliant. Lost in florid psychosis, one participant's mother comforted her ineffectually:

Any time my mom would notice me crying, she would associate it with someone else making me cry (i. e. her voices) and tell me not to cry, that everything would be ok and that she would protect me. But, it never made me stop because she wasn't identifying what was making me cry, just what she thought was in her delusional mind.

Another form of child neglect is parentification (e.g., Sexton, 1994). Parentification occurs when children or adolescents are made to fulfill the parental role in the family system before they are emotionally or developmentally ready. A neglected or abused child, whose parent is out of control, tends to make every effort to restore the caregiver's psychological equilibrium, since in some basic way children comprehend that their own survival depends on the parent's competence. Such a child may become overfunctioning and parentified; this stress will be aggravated if the well parent is unavailable thanks to guilt, anger, depression, or substance abuse. However, taking a caregiving role per se is not universally damaging to a child. It is essential to notice that "parentification" is not universally a term of opprobrium. One individual explained that children providing care for their parents was “the done thing” in India. “I encourage the child, usually a teenager, to participate in management . . . and have some younger kids coming with the sick parent as the well parent is out earning . . .”
Some parentified children might learn a valuable skill--how to nurture another person--by practicing on their mother or father. However, in instances of abusive, inadequate, or nonexistent discipline by one or both parents, such a child would absorb the primitive disciplinary tactics modeled by the parent(s). One mused—
I was a wonderful parent from 0 to 3. I was a horrible parent from 3 to 8 . . . I was nurturing but had no skills at disciplining. I responded to misbehaviors by yelling, threatening and ranting . . . . That is what led me to eventually seek therapy. My kids were too special, too wonderful to be victimized like that.

Family Support: The Well Parent
As we have seen, a parent's psychiatric illness can impair his or her ability to function and participate in the normal activities of daily life–including child-rearing--and the impairment can last a lifetime. The family–both nuclear and extended--is the first line of defense against the effects of illness, for both the ill parent and his or her children. Minimal or passive family involvement can result in a very fragile support system for parent and child (Werner, 1993). Yet the very behavior that demands family participation-- the strange thinking and bizarre and unpredictable actions that characterize schizophrenia-spectrum illnesses–militate against it. Families who contend with psychotic symptoms every day can speedily become frightened, bewildered, and depleted. In addition to coming to grips with symptomatic behavior, family members must grapple with the loss of their hopes and expectations for the family member and perhaps for themselves as well. When the effects of mental illness are devastating, those who have the option to withdraw sometimes do so (e.g., Lanquetot, 1984; Torrey, 1995b).
It is of particular importance that a child or teenager's well parent assume appropriate responsibility in the family (e.g., Werner, 1986), and indeed several participants describe concerned and helpful well parents. One daughter portrayed her father–a physician--as collaborating in her mother's care. One son recalled that after his mother drove her car off a cliff in a suicide attempt, “I remember [Dad] telling me softly that Mom had been in an accident during the night, and that she was in the hospital.” Another daughter depicted the toll her mother's illness took on her father:
He would leave for work after making sure my mother got her morning pills. Then an hour later, he would call her to make sure she was alright. After another hour passed, he came home to check on her and make sure she hadn't set the house on fire. One hour later, he called her again. He had contact with her every hour of the day. They couldn't afford home health care. . . . A few weeks before he died, he told me . . . he was ready to die . . . to be relieved of his watch over her.
Some offspring described the well parent as passive. He or she had trouble understanding the spouse's illness, or may have thought the spouse should "snap out of it," and did little to support the child. One man noted, “All I was given as a teenager . . . was food, clothing and a roof over my head. There was no emotional support by either father or stepmother.” Some well parents who were initially engaged grew worn out and discouraged. , Having searched fruitlessly for help, they appeared hesitant to try again, and lapsed into escape or inertia. A woman whose father became an alcoholic reflects, “it is impossible to guess if life with [a] sz spouse drove him to it.” A man referred to his mother, a battered wife, as a “silent bystander” who told her children that “if she ever intervened while my dad was beating us, the violence became extreme.” One individual portrayed her father as entirely passive vis-à-vis her mother's illness, or the physical and emotional abuse his daughter suffered. He “has never even said the word schizophrenia to me. . . . It truly is amazing how taboo things remain to this day . . . . I have never ever spoken to my dad in terms of 'mom has sz, what should we do?'”
Well parents could also be portrayed in shades of gray. One father, though an alcoholic with “a mean streak,” was also depicted as a “paradox,” who . . stayed married through 40 years of hell. He always said it was because 1. He loved his wife. 2. He had promised to stay with her in sickness and in health. 3. If he left her, there was nobody to take care of her and she was too sick to take care of herself. 4. He loved her. 5. He loved her.
One father, who “did nothing to stop our mom from beating us,” was nonetheless often kindly and sympathetic. “He was the one who made our breakfasts before school . . . . When I had to have my tonsils taken out, he bought me an album for collecting stamps and spent some time with me placing the stamps in the album. “ Such nurturing moments could be thought of as intervening events affecting her general appraisal of her father in adulthood: She concluded that he “did the best he could in dealing with my mom. Of course, there is little to be gained when arguing with a psychotic person, so he tended to keep his head in the sand.”
Family Support: Siblings
It stands to reason that some APS might have more than one family member afflicted with a schizophrenia-spectrum illness. Inspection of family members' psychiatric records (if any) was not within the purview of this study. However, several participants mentioned close family members' illnesses. Grandmothers and siblings, for instance, are vulnerable (Kaplan & Sadock, 1994). In addition, what is unromantically termed assortative mating (the tendency to marry someone similar to oneself, cf. Caspi & Herbener, 1990), may result in an APS also having partners, in-laws and/or stepchildren with schizophrenia-spectrum illnesses. Three participants reported that one or more of their siblings were afflicted. The presence of psychiatrically ill family members in addition to the parent obviously has implications within the APS's social context and his or her development from infancy into adulthood.
Depending on when symptoms began to emerge, both the prodromal period and subsequent episodes of illness have implications for the level of support these siblings could provide to participants during their childhood and teens, and also at present. Several participants whose siblings did not develop schizophrenia report receiving much emotional and practical help from them. One woman's physically abusive mother stopped hitting her as well as her brother, when one day he “slugged her back.” One of another woman's brothers accompanied her when she “tried to go down and take care of [father]. He didn't want our help. We left ( we lived about 10 hrs from him).” It was one participant's sister who told him their mother's diagnosis when both were children. As an adult, she “is better at navigating . . . mental health bureaucracies” than he, so he often relies on her for that aspect of their mother's care.
Participants' siblings could be a direct or indirect source of stress. One woman's love for her brothers forced an excruciatingly difficult choice at the end of her wonderful year with an aunt and uncle. When her father “showed up to collect his family and move us all to Michigan, to live as a nuclear family again, my aunt and uncle urged him to allow me to remain with them.” When he refused, this woman had to make her own choice. “I knew that the best thing in the world for me was to stay with them. . . . I was safe from danger. . . . [But] I had to be with my brothers. I had to protect them from my mother.”
Family Support: Extended Family
Extended family members can fill much of the gap left by one or both parents (Werner & Smith, 1992). Yet, like ill parents, well parents, and step parents, extended family inhabited a realm that comprises “helpful,” “absent,” “damaging,” and the territory between. This range was present both across families and within individual relatives. One APS recollected that among her relatives, “There was never anyone to appeal to.” One APS's maternal grandmother was afflicted with schizophrenia herself, but her aunts “were great help for us. . . . I have lived 1,5 year at my aunt's home.” Distrust was spawned within one extended family by the mother's paranoia, which was not immediately recognized as a psychotic symptom: “My brother still mistrusts some of my relatives . . . because he feels they must have hurt mom in some way, as there cannot be smoke without fire.” Another woman, who conceptualized her mother's behavior as the result of “a brain disease,” became “her biggest defender . . . the one who wouldn't let anyone else put her down”
 “Fortunately,” one man recalled, “I had an aunt and uncle who took me in for awhile, and a grandmother who took us all in while my mother was in the hospital and my father was reestablishing his life.” One participant's cousins arranged for her father to be hospitalized several times, but “[the hospital] said he was fine, [and sent him] home, crazier than ever.” Another's aunt “tried to help by taking my mother out of the state mental hospital and taking mom and us kids into her home,” but “could not tolerate life with sz” and quickly gave up. Following a stressful weeklong visit, another aunt packed mother and children back to an overwhelmed father. This woman's grandmother “only visited us once in twenty years. She was afraid of mother.” On a more positive note, relatives invited the child along on vacations now and then, providing desperately needed respite. Initially, another APS's grandmother tried to provide care for her ill father. Then, she noted simply, “His mother passed and I took over with him.”
Community Support
As Werner (1989; 1995) and others suggest, resilient children growing up in difficult circumstances often manage to enlist extended familial or nonfamilial mentors. There are many potential sources of support (or nonsupport) in the community. These may include friends, employers, and more formal sources of support such as teachers, mental health and social workers, and other professionals. The availability of such help often hinges on the community's financial support for schools, agencies, and hospitals, as well as insurance and state/federal reimbursement for individual professionals. This in turn depends on public policy, which originates in a far wider community–a city, state, or nation.
As a group, the APS in this study recalled local community support in their childhood as scant to nonexistent. At least in part, some attributed this to the effects of stigma on family and community alike, plus a lack of concern for individuals with mental illness and their families.
Friends were a potential source of community support. However, several APS spoke of reluctance to invite anyone home because of the ill parent's unpredictability when exposed to the stimulation of visitors. As a result, they became more and more isolated. Even if a child had been willing to confide in a friend, friends were scarce, because, as one individual wrote “my mom would yell at all their mothers.” One participant was able to unleash her rage “within my own home and sometimes with strangers . . . . I was hateful, quick tempered, [and] sarcastic.” But with her friends and teachers–both possible sources of support for this terrorized child--“I was opposite . . . the total doormat, people pleaser.” It took one man “a while to figure out how to make friends. I often was haunted with feelings of not fitting in, or having to prove myself.” By adolescence, one daughter “started becoming aware that all moms are not like mine, I had started blaming her for all the 'bad things' that happened in my life . . . and for all the restrictions that I had to go through.”
Another potential source of support in the community cited by several APS was their school. However, the child who had witnessed her second grade teacher's inertia in the face of physical child abuse, “did not confide in any adult.” She noted, “The personnel in my school . . . may have been aware that those poor [Surname] children have an insane mother, but that was all. I tried to talk to my sister's kindergarten teacher but she was pig headed, unwilling to listen.” Unable to locate mentors in school, this child gravitated to advice columns in the daily newspaper
Mental Health Professionals Who Work with the Ill Parent
 Mental health professionals and hospitals of all descriptions were described as important sources of support to the family. One participant praised her mother's current psychiatrist: “This guy is more willing to listen to me and is interested in her well being. She has made some improvement. He will also get her 'samples' of her medication to help her with the costly expense of it.” Queries on this topic also produced several heated responses from APS whose experiences with the mental health system had been negative. One noted, “[In the 1960s] there was Freudian nonsense about it being her parent's fault which I'm sure hurt my grandparents deeply.”
Mental Health Professionals Who Work with the APS
Several APS suggested that not only the ill parent, but also any children (young or adult) in the family, might profit from support provided by a mental health professional. Informal support groups, including peer-led groups such as those often offered by the National Alliance for the Mentally Ill (NAMI), which was founded in 1979, were also described as potentially valuable resources. Participants indicated that counseling was often not readily available to them while growing up. A number of them urged clinicians to bring the entire family into problem-solving sessions, to take the lead in making sure children are evaluated. From her dual perspective as psychiatrist and daughter, one woman warned, guilt is “always present in varying amounts in all of the caregivers,” and the ill parent's treatment team should provide psychoeducation about schizophrenia to family members.
In adulthood, when APS became aware of community resources, several reported seeking help. One man reported that he was “in counselling for 9 years and I'm still healing, but I do feel I'm through most of it.” In therapy, he found affirmation of qualities he values in himself. When one woman sought group psychotherapy to address her parenting skills, memories, childhood dreams, and flashbacks “began bombarding my mind. It was a total relief.” Although, when one man was a child, “There was no counseling for us kids,” in adulthood he had a very positive experience of pastoral counselling with a minister who had training in psychology. It is notable that several APS whose parents are deceased offered to participate in the study, although they were eliminated from the sample. This may suggest that offspring puzzle over the parent's illness and the relationship for years after his or her death.
Not all interactions with clinicians were positive. After her own psychotic break, one APS was advised to take an antipsychotic medication and visit a psychiatrist regularly. But the clinic was in a dangerous part of town. “There were people either sleeping or passed out on the side of the building. It was a frightening experience for me, so I didn't return.” Fourteen years later, she sought professional help once again, with more positive results.
The Wider Community
State human services agencies and the judicial system are potentially involved with families that include a parent who has a mental illness. Although Nicholson and Blanch (1994) warn that “Mentally ill mothers in public sector psychiatric care may be particularly vulnerable to parenting dysfunction and loss of custody of their children” (p. 484), participants in this study did not complain of this. One complained that a court awarded “custody of us kids to [the ill mother] after my parent's divorce.” He added with some asperity, “At least the courts had the wisdom to give my father 'temporary' custody after my mother drove her car off a cliff.”
Myths and misconception about mental illness abound. Although it is imperative for families to locate sources of information about the parent's illness, several participants noted that they are often reluctant to discuss the illness with non-APS (even parents) for fear of a stigmatizing response. As one noted, “Stigma is a huge deal for me. . . I still keep my mother's illness in the closet. The public does NOT understand. . . I believe sz is one of those things in life that one cannot understand unless they see it first hand.”
Expectably, considering the Web-based recruitment of participants in this study, several APS considered the Internet as a possible source of community support. Sites such as the one set up by the National Alliance for Mental Illness (NAMI, www.nami.org) and one erected by a man whose brother had schizophrenia (www.schizophrenia.com) were often mentioned. One APS explained, Before www. schizophrenia. com, I had never encountered other children of a schizophrenic beyond my sisters and myself. I remember the day I found it -- I read the other posts saying, "uh-huh, I've been through that too". It was joyful to find people who share some of the feelings I've had. At the same time, it was poignant to know that others had to endure the same things I had.
One woman found it comforting that she has had “...the conversation with many people from the sz website how they feel exactly the same when their mom goes in the hospital.”
Participants by no means universally complained of stigma. One individual said there is “no presence of stigma around here . . . that I know of.” Another reports that he has “talked freely about my mother's illness to people in many parts of my social circle . . . “ and was “constantly surprised to find out how many people I know, [who] know someone else who is mentally ill.” Yet another reported that although stigma is “present in [Indian] society, with increasing awareness the trend towards an openness is encouraging.”

Public Policy
Community survival of individuals with schizophrenia can require a multitude of services. These might include psychiatry, psychotherapy, intensive case management, medical interventions, social skills training, and vocational rehabilitation. Participants reported that these are not universally available or adequate. In the mid-1960s, Congress ceased paying Medicaid benefits to state hospitals and other “Institutions for the treatment of Mental Disease” (IMDs); the plan was to create a system of community mental health centers that would replace state psychiatric hospitals and other IMDs. This resulted in the deinstitutionalization of hundreds of thousands of patients.
While some of these severely ill individuals live with family (including APS), or have found places in nursing homes, many others live on the streets or in prisons and jails (cf. Steadman, Morris, & Dennis, 1995; Strickland, 2000; Torrey, 1995a, 1995b). Treatment for ill individuals and their families is often compromised or rendered unavailable by lack of funding for health care in general and mental health care in particular. The advent of managed care has not visibly improved the situation. Causes of this fiasco–and reasons why it is not improving--are complex and beyond the scope of this study. At present, U.S. priorities appear to be elsewhere.
Participants addressed public policy areas in a number of ways. Some spoke of the persisting stigma that surrounds psychiatric illness, which may be a barrier to adequate care. One suggested that a core problem is “an attitude of shutting one's eyes to their suffering: 'Mentally ill people have a right to indulge in their psychosis, don't they? Who are we to stop them if they want to beg on street corners?'”
Some participants noted that certain laws put in place to benefit people who have psychiatric illnesses may have an opposite effect. For example, in some cases close family members (who would readily be given information about the inpatient and aftercare of a parent who was demented or delirious) were denied all information about a parent hospitalized with psychosis unless the parent signed a release-of-information form. One reports “mixed feelings about [confidentiality].... It is their right, but also a person sometimes needs to know certain things if they are to care for the ill person.”
As paranoia and anosognosia often accompany schizophrenia-spectrum illnesses (Kaplan & Sadock, 1994), such a release can be difficult to obtain. An APS whose parent has disappeared into the night might telephone local hospitals only to be told that confidentiality laws prohibit giving any information about psychiatric patients, including whether or not they are in the hospital. Mental health professionals too often do not provide information to APS or other caregivers that is necessary to successful treatment (National Alliance for the Mentally Ill [NAMI], 2002a).
One noted “[Her doctor] treated me like a stranger. Yet she was good at acting 'normal' in front of him. I think that's part of the reason she wasn't getting the meds she needed and the dr. wouldn't listen to me.”
Also, in most U. S. states, a person who is exhibiting symptoms of psychosis cannot be involuntarily committed to a hospital until his or her situation has deteriorated to a point where he or she is deemed an immediate danger to self and others (National Alliance for the Mentally Ill [NAMI], 2002a; 2002b). The level of danger is open to interpretation by local agencies. Many take a conservative stance, and require both a threat and possession of a weapon. The perhaps less immediate danger that lack of basic self-care ability, homelessness, and life on “the street” create is rarely considered in this equation (National Alliance for the Mentally Ill [NAMI], 2002c, 2002d).
Confidentiality regulations were often described as reducing the family's ability to provide care for the ill parent. Cultural values and practices clearly played a role in public policy regarding confidentiality, as in other spheres. A woman noted, “. . . we do not have such a law in India . . . . Revealing [information] verbally to relatives is [routinely done].” Regarding release of written medical records, she added, “The relative usually gets a copy of [the patient's discharge papers] for use if needed at a later date . . . never heard of a release form . . . . hope never have to hear abt it too.”
Most participants were strongly in favor of involuntary treatment. The participant who has herself experienced psychosis stated, “Involuntary hospitalization is absolutely necessary sometimes.” Another APS complained, “[We should have the] ability to force her to receive medical care such as when she had breast cancer. We had to deceive her into surgery.” Only one took the opposite stance: “I think I would resist with all that I had . . . as I would view [involuntary treatment] as 'giving up' on her esp since I am a mental health professional so I guess I would take it as a personal failure.” One individual discussed the stress and frustration involved for professionals who are trying to do their best in straitened circumstances.
Outpatient mental health care in general was often a source of frustration. One participant noted that his mother “sees a psychiatrist through county mental health. From time to time there has been a social worker at the county who has helped her obtain housing.” Overall, services are “woefully inadequate.” One father stayed in the military because it would provide some financial benefits to her ill mother. However, no mental health services were available for dependents, so the family “had to rely on state mental hospitals and county mental health departments for her doctors.” Although free medication was available, during 15 years of her illness the family lived too far from a military facility to take advantage of this benefit.
Several participants were concerned about the dangers that might await their ill parents should they “fall through the cracks” of a fragmented system . Unexpectedly, in light of the difficulties with confidentiality laws and obtaining involuntary treatment that are often mentioned in consumer and caregiver literature (e.g., the websites of NAMI and of the Treatment Advocacy Center), the issue of possible homelessness was not raised by any participant.
Law enforcement officers are often the first responders in a family's time of crisis (Abram & Teplin, 1991). Desperate for a relative to receive involuntary commitment, the well parent, children, other relatives, or even neighbors may dial 911 (in the US) or some other number for an emergency response. Police are also often called to intervene when a person suffering from psychosis behaves strangely in the community or has committed a crime. According to the American Jail Association, approximately 600,000 to 700,000 individuals with mental illness are incarcerated in jails each year (Strickland, 2000). This represents a fraction of those arrested but not convicted of any crime. Wahl (1987) reported that nearly half of all police officers in their study expected individuals with schizophrenia to be aggressive, hostile, and/or violent. This expectation too often produces a combustible situation, in which police take a proactive stance–readiness to use force (even lethal force) with the ill person.
With this in mind, I asked participants about their ill parent's experiences with law enforcement officers. Several did report having called police in hopes of having their mother or father taken to a psychiatric unit. One man described his fruitless efforts in this regard: “[Police] have always been courteous and diplomatic, but in essence they have their hands tied and would rather not deal with it.” No one reported that their ill parent had been treated violently by police or jailed during an exacerbation of illness.
Development
Overview: Childhood and Adolescence
Just as the family’s context can moderate the effects of parental psychopathology on child development, so too can the child’s developmental stage when the parent first became symptomatic. The child's developmental stage during remissions and exacerbations of the parent's illness also has potential to moderate these effects. Participants' perception of the effects of the ill parent's behavior on the ongoing parent-child relationship may be conceptualized as the outcome of the individual APS's developmental course to date. As will be seen toward the end of this section, what might be called the developmental state of the society in which the family finds itself can play an important moderating role. As Bernstein (2002) noted, “Brain, context, and development interact complexly” (p. 434).
Thanks to this complexity, individual APS tackled the challenges of adulthood–including the relationship with an ill parent–uniquely. However, some regularities and patterns were apparent in the data. In this section I will first review some effects of the participant's age at the onset of the parental illness, when he or she realized the parent was ill and the illness was called “schizophrenia.” Next, I offer some caveats to do with possible effects of the course of the parent's illness, which can include periods of exacerbation and remission. Then I will jump ahead to issues around caregiving in adulthood. Finally, I offer a quick panoramic view that could be called “APS through the ages”–their own and their parents' ages, to be precise.
APS's age at onset of parent's illness.
To some degree, participants' current expression of feelings toward the ill parent appeared to be mediated by the timing of onset of symptoms, as they revealed themselves in disordered behavior. For example, participants whose parents' illness began either before the APS were born or when they were very young, tended to describe the onset of illness matter-of-factly. One mother was “ill from the day I was born. She didn't want to take me home from the hospital because she thought they had given her someone else's baby.” One daughter was “about one year old when my mother developed her first episode of schizophrenia.” One explained, “I am pretty sure my mom was sick before I was born, but since no one talks about it, I can only tell you that from when I was 5-8 I realized something was terribly wrong.”
However, APS who were slightly older, and thus aware of the difference between the parent's old and new behavior, tended to describe the onset of illness in catastrophic terms. When one daughter was five years old, “a huge sz event occurred [later known as] The Day Mama Went Crazy.” A male APS declared, “As far as I'm concerned my mother died when I was seven.” In nearly identical language, though more calmly, another man stated, “To me, it seems my real mother died when I was 10.”
Age when APS learned the parent had schizophrenia. The age at which each APS first understood that his or her parent's illness was called schizophrenia also varies. This may relate to the amount and type of support available from their well parent and extended family, and the stigma too often attached to psychiatric illness, both of which were discussed earlier. Some were told the diagnosis by supportive family members. One noted wryly, “I am sure that my daddy provided the label schizophrenia early in the game.” By contrast, a man who described extremely little family support, said, “I don't remember being told. I just can't remember.” Another APS who had very little help while growing up reported that it was not until her mother had a “really bad sz episode” in her assisted living placement, that she herself–now an adult–was told the diagnosis. “I already knew that, but it was good to finally hear the diagnosis from a doctor.”
One individual–in her late teens when she deduced the name of her mother's chronic illness from her psychotic symptoms–attributed the conspiracy of silence to stigma, and noted “I am convinced that no one [in my family], to this day, would be able to say 'Oh yeah . . . she has schizophrenia.'" Another explained that close relatives often have mistaken ideas about the illness: “The first they say is O, he has a split personality. Or they think everyone is violent. It's difficult to explain.”
An APS who grew up under far more favorable conditions “read about the symptoms of schiz in a medical text” in her first year of med school. “Thereafter I read abt it but even at that time discussing it was taboo.” Lacking this vital information, she had long puzzled over her mother's behavior; in adolescence, she inconspicuously rebelled. It was clear from her narrative that, in her culture, adolescent rebellion is far from the norm. Looking back over those years, she decided that the resulting guilt in some way atones for, or balances, the rage she felt toward her mother, and allowed her to move forward. Clearly, some participants in this study had decades in which to observe, find a name for, and intensely puzzle over the parent's behavior. For others, the topic was close to brand-new. Regardless of their age or the length of the parent's illness, all maintained a relationship with the parent.
Age of APS across the course of parental illness. The unique and unpredictable course of any given parent's illness (e.g., Kaplan & Sadock, 1994) adds complexity to the task of predicting risk and resilience factors in offspring, as the timing not only of onset and initial understanding of the illness but also of its exacerbations and remissions, must be considered. While the inconsistency and unpredictability often associated with psychosis might adversely affect aspects of the child's development at any of the stages mentioned above, this would likely depend on factors such as remission, exacerbation, and medication compliance, since it is the parent's behavior, not his or her diagnosis, that the child experiences (e.g., Hammen, Burge, & Stansbury, 1990; Silverman, 1989).
A parent who became symptomatic before or shortly after the child's birth might–or might not–be symptomatic while the child is of preschool age (age 1-4). Children in this developmental stage are very close to their parents, and dealing with issues of trust while developing self-image and autonomy. Similarly, although school-age children (5-12) have some outside resources to draw on, they remain subject to potential abuse by the affected parent, and may or may not struggle with feelings of shame, resentment, and consequent guilt. As described earlier, several participants in the current study mentioned frightening or humiliating childhood experiences. Although adolescents (13-18) are more able to rely on sources outside the family for support and gratification, can think more abstractly, and are less likely to have their self-image affected by the parent’s response to them than are younger children, they may or may not be subject to parental behavior sufficiently distressing to provoke acting out at home or in school, or fleeing the home altogether. One APS, for instance, noted that when she was 18, her brother “slugged [our abusive mother] back, and that was the end of the abuse for him.”

Overview: Adulthood
In adulthood APS face typical adult responsibilities and choices, which are made more complex by the ongoing pull to meet the needs of the chronically ill parent. In a sense this is a normalizing experience–at last, as one grows older, having an ill parent finally becomes a common experience. To most adult offspring this is a new role. To APS it is achingly familiar.
Caregiving for the ill parent.  The term “sandwich generation” is often applied to adults who simultaneously have caregiving responsibilities for their parents and for their own children and/or career (e.g., Berg Weger, 1996; Dobson & Dobson, 1985; Dolan, 1992; Halpern, 1994; Kingsmill, 1998; Loomis & Booth, 1995; Nichols & Junk, 1997; Schlesinger, 1989; K. Smith, 1989; Ward & Spitze, 1998; Zal, 1992) . In this regard, APS might be lightly termed the “psychiatric sandwich generation.”
This study found a widely varying amount of time that APS spend with their ill parent. Some ill parents live with their adult child, yet others live alone, or in institutions of one sort or another. There appears to be little correlation of living arrangements with level of caring. Living with the ill parent can mean providing total care, as one participant reports doing for her father. Yet for another, co-residence does not involve assuming total care. A third participant reported feeling very close to her mother, who ordinarily lives some distance away, and a fourth remained emotionally intertwined with his long-institutionalized mother. As will be seen later, some participants employ geographical distance to set safe boundaries with the ill parent.
Most APS reported providing some sort of practical assistance, which could take the form of food, financial support, transportation, housing, emotional support, shopping, housekeeping, and/or management of medical treatments and expenses. One provided in-home psychiatric care for her mother. Another reported, “Mom's moving in with me (eek!) for the duration of her radiation [therapy for cancer], because it's everyday and she lives so far away (Pray for me!).” Along with responsibilities to the parent, most APS in this study had developmentally expectable responsibilities with and for spouses or partners, employers, and colleges or universities. In addition, six did volunteer work.
Caregiving for APS's own children. APS were managing the parent's illness (and/or their memories of it) on two levels: as they witnessed and lived it as children, teens, and now adults, and also in the context of parenting their own children. Barnes, 1996, notes that, in this way, a parent's schizophrenia-spectrum illness can become a three generational phenomenon. It is not merely something a child or teen endures that is left behind when they become adults. For instance, the oversimplistic notion that abused children almost inevitably abuse their own children–known as the intergenerational hypothesis–sometimes provokes worry and pessimism among APS who were abused.
One APS has responsibilities toward her four adult stepchildren, in addition to her young-adult son who has schizophrenia. She was very concerned with protecting her sons from the abuse she had experienced. Providing care for a parent who has schizophrenia can take so much time and energy that none is left for starting a family of one's own. When another's extended family refrained from helping her care for her ill mother, “the biggest excuse [they give] is "I'm busy, I have children, etc." HELLO! I'd LIKE to have a kid, but so far we've been too busy taking care of mom . . .” After a few years as a mother, a third woman realized with some surprise that she had “no role model for parenting.” One APS cared for her three-year-old child as well as for her father. One woman's son, in his twenties and diagnosed with schizophrenia, lived with her. A male participant was painfully aware of the ravages of schizophrenia-spectrum illness in his own siblings. In this fashion, the genetic bases of schizophrenia-spectrum disorders contribute to a more complex “sandwich generation” phenomenon among APS than is experienced by most adult caregivers whose parents are frail or dementing, in the absence of serious psychiatric illness.
Caregiver burden. Multiple responsibilities and activities can add up to what is termed caregiver burden–the subjective sense of burden experienced by an ill parent's family and other loved ones (e.g., Anderson, Reiss, & Hogarty, 1986; Doll, 1976; Lefley, 1992, 1994, 1997; Hatfield, 1997; Hatfield & Lefley, 1987; Torrey, 1995a, 1997; also see literature review by Baronet, 1999). APS in particular are faced with both the effects of deinstitutionalization and an underfunded and fragmented system of community (Lefley, 1997; Marsh & Johnson, 1997; Torrey, 1995b). From her dual perspective as psychiatrist and APS, one woman called caregiver burden “a neglected area,” adding, “The sheer immensity of patient population seems to relegate care giver problems into background.”
Living more than 300 miles from his mother has provided what he views as a “healthy boundary” for one individual vis-a-vis his mother's demands and attempts at manipulation. Although her mother's mostly delusional speech precludes meaningful conversation, one participant's concern for her mother combined with 12-hour work/commute days to make it “hard to separate my relationship with my mother from my relationships with the world”; she often felt frustrated and rushed in both arenas. Several people noted that, over the years, they have tried both geographical distance and closeness, as functions of their feelings toward their parents. Because one mother has aphasia, she and her daughter cannot easily converse. So the daughter writes her a letter each week. “She has dementia. She keeps each letter I write and reads them over and over again - not really remembering that she already read them. I do this because I love her. And still hate her. It is complicated.” A male APS “ring[s] Mum once a fortnight, these days, I just can't be bothered visiting her, and I have my reasons for that. It has to do with what the illness has done to her mind.” A woman who provided total care for her mother reported that she had to set boundaries when requests to care for additional family members were thrust upon her.
Cohort effects. The combinations and permutations of the interactions of “brain,” “context,” and “development” are endless. Theoretically, they could range from an APS whose parent was psychotic for a few months, and has been stable on medication ever since, to one who has coped with chronic and very serious parental symptomatology over the course of his or her development. It would be patently impossible to make a grid of what happened in the lives of which participants at what developmental level, and determine how it affected them then and now. However, it is useful to present an overview of cohort effects.
Briefly, because newer antipsychotic medications are typically more potent and less sedating than older ones, the child of a parent who was stabilized on Olanzapine in 2000 would likely have experienced different illness-related parental behaviors than the child of a parent who was stabilized on chlorpromazine in 1960 (Kaplan & Sadock, 1994). In similar fashion, parents who were first ill around 1950 might have spent months in a state hospital, while parents diagnosed later are progressively more likely to have been treated in the community. Thus, a cohort of APS who first dealt with a parent’s psychosis in 1960 is likely to have had different experiences than the cohort of APS who first dealt with a parent’s psychosis a few decades later.
The oldest parent of any participant was in her 80s. She was born only a decade or so after Kraepelin's seminal work on “dementia praecox,” a precursor of the concept of schizophrenia as a diagnostic category (Kaplan & Sadock, 1994). Bleuler would elaborate on “schizophrenia” in an era when one parent was a child and adolescent, and three were born.
Five participants' parents were born during the 1930s. Electroconvulsive therapy (ECT) gained popularity as a treatment for a host of psychiatric illnesses by the 1940s (American Psychiatric Association, 1996). The oldest parent may or may not have fallen ill then–her husband has refused to discuss any aspect of her illness with his daughter.
 In 1950, over half a million people with serious and chronic mental illnesses lived in the 322 state hospitals in the U.S. (Korn, 2002). Around 1952, when the first Diagnostic and Statistical Manual was published, the eldest participant was born. Two parents were born in this era. Two parents from an earlier parental cohort fell ill for the first time. At only five years old, the daughter of one of these realized soon after “The Day Mama Went Crazy” that her mother's illness was called schizophrenia. In her teens, this woman began an intensive study of schizophrenia, and immediately took exception to the wisdom of her day, which so often demonized the very family members whose support was badly needed:. . . they said it was caused by the sz's childhood. Parents were too unemotional. All kinds of Freudian stuff. I read that, watched my mom, and said "Freud is full of baloney . . . " Anyone who lived with and observed my Mother could plainly see a woman who was calmly keeping house for hours and then would erupt for no external reason. Duh.
Within a few years of the first widespread use of chlorpromazine, one of the first potent and effective antipsychotic medications, in the 1950s (Greenley, 1990; Torrey, 1995b), two mothers became ill. It was thus available, though I have no data on whether or not it was used for their treatment or that of the oldest mother. One mother was prescribed chlorpromazine, and later used haloperidol, fluphenazine, and other antipsychotic medications, with little improvement. Several participants were born in this era. Though still quite young, most were aware that their mother or father was ill in some way; two learned the illness's name.
By the early 1960s and into the early seventies, deinstitutionalization was well under way (University of California at Berkeley, 2001). Three APS were born around this time. One's parents' illnesses may have predated her birth. Two mothers began their chronic psychotic illness just as long-term hospitalization became a fading possibility, community care for the seriously mentally ill was more hope than reality, and more and more families (including children) found themselves standing in for the absent professionals. Two woman realized that something was terribly wrong with their mothers. One precociously, and another belatedly, learned the diagnosis was schizophrenia. One's complaint may be recalled: in the mid-1960s, “there was Freudian nonsense about it being [Mother's] fault, which I'm sure hurt my grandparents deeply.”
The National Alliance for the Mentally Ill (NAMI), a grassroots organization begun by family members (mostly parents of young adults who had a serious psychiatric illness), was founded in 1979 (National Alliance for the Mentally Ill [NAMI], 2003). The DSM-III, which made important changes in diagnostic criteria for schizophrenia, was published in 1980. In the years before and just after this, two APS were born and two others' mothers became ill. Of the latter, one knew something was wrong when he was quite young, but awareness grew slowly for the other, who would only puzzle out the diagnosis in her first year of medical school. Still in this era, another was told her parent's diagnosis.
Two participants recognized some time in the 1980s that their parents were ill, and the name of the illness fairly quickly followed; one woman, who had long known her mother was ill, was told by a relative that her mother had schizophrenia. Meanwhile, a male APS was learning firsthand the practical implications of schizophrenia in his and his mother's lives. One's mother's formal diagnosis was made at this time, when the daughter was in her 40s. The antipsychotic clozapine was coming into widespread use; apart from its sometimes deadly side effects related to agranulocytosis (Kaplan & Sadock, 1994), it was received as a miracle drug (Torrey, 1995b).
The DSM-IV was published in 1994, and a host of new atypical antipsychotic medications hit the market. By 1996, the census in the remaining 254 state hospitals in the U.S. had plummeted to just over 60,000 people (Witkin, Attay, & Manderscheld, 1996). Among participants in this study, only one mother is said to be institutionalized in any sort of psychiatric facility at this point. An APS, who is a homemaker and mother of a three-year-old, cares for her father at home. One hopes to move his increasingly frail mother into an assisted living facility. One's mother “takes her Zyprexa more willingly than she ever took [earlier medications], because it has less side effects,” but remains seriously impaired and incapable of the simplest personal hygiene; she and another participant's mother are now suffering mild dementia.
A few years ago, in India, one APS completed her degree in psychiatry, and began supervising her mother's medication regime–which now has resulted in five years of improvement and stability. In Holland, a woman whose mother lived alone feels betrayed because her mother has stopped taking medication and is drifting into psychosis once again.
The full array of participants' feelings toward the ill parent or others involved in his or her care is unknowable; samples drawn from their narratives traverse rage, horror, love, compassion, and affective deadening. Overall, APS who found it hard to summon up compassion for the ill parent in adulthood tended to have parents who rarely or never nurtured them–parents whose symptoms began before the child's birth or just a few years later. One of the youngest participants expressed an anguished fury born of early loss. The participant whose mother was in her 80s reported craving love and envying those who had a mother's love. However, she has had so little experience of her own mother's affection–perhaps none at all–that she was unable to imagine yearning for, possessing, or enjoying her mother's love.
By contrast, several APS who had at least a few early memories of nurturance–before the parent's psychosis began–seemed more able to summon up warmth and empathy for the parent. Although positive pre-illness memories can be a blessing, they may interfere with a child's mourning for the loss of the parent he or she once knew, leaving him or her confused about how to perceive the parent and hoping against hope for recovery. One man, who had ten years of normal mothering, lived in a “poignant paradox” of unrequited yearning for the connection he and his mother had so long ago.
Important exceptions challenge this tentative child's-age-at-onset “rule.” Though one mother became ill during the APS's infancy, their present relationship was described as warm and mutual. This daughter and another described the vital importance of gaining insight into both parent and illness in adolescence or early adulthood–one through her psychiatry studies, another in premed. The participant who experienced “The Day Mama Went Crazy” at age 5 cherished her handful of pre-illness memories: she played card games and read together with her mother. However, these appeared to play a smaller role in her fifty-plus years of persistent caregiving than did an event in her early teens: “At puberty, the stage when children start to notice others and others' needs, as opposed to the egocentricity of children, I began reading about schizophrenia.” A number of APS gained a sense of two separable entities: the parent and the illness. They all learned to construct their experiences with the parent by doing what NAMI (2002) terms separating the person from the disorder, and Bleuler described as “learning to distinguish what is strange or sick in their parent, and what is good and lovable in him” or her (Bleuler, 1974, quoted in Garmezy, Masten, Nordstrom, & Ferrarese, 1977, p. 30; National Alliance for the Mentally Ill [NAMI], 2002).
Although one woman reports having made this leap, she did not mention book-learning as a crucial aspect of her transition from frightened, hurt child to adult caregiver. Another woman, whose childhood memories are redolent of horror unassuaged by fatherly kindness, had not only “forgiven” him but provided total care in her home. After her father's stroke, she managed to reframe his behavior in a manner that permitted and encouraged her compassion.
Summary of Results by All Three Axes
APS's perception of the effect of childhood experiences on the current relationship with the ill parent cannot be understood in terms of only one or two of the variables in Bernstein's (2000) 3-axis matrix. Using her heuristic, I have examined the effects on children of being raised by a parent with a schizophrenia-spectrum disorder in terms of their cognitive abilities and possible genetic loading for psychopathology; social context; and developmental course. As expected, the data provided complex patterns of responses. APS's perception of the pre-illness relationships is entwined with innumerable combinations and permutations of genetics, environmental context through childhood and beyond, and developmental stage when one or another event occurred.
On a superficial level, risk and protective factors among these APS could be called “the three Ms”–money, mind, and mentor. In the absence of national health insurance in the US, the availability and quality of many parents' care was–and remains–dependent upon family financial resources. Quality of the parent's care, in turn, had serious repercussions for children. It could make the difference between living with a stable versus an unstable parent; between being trapped with an extremely abusive ill parent vs. residing elsewhere while the parent obtained inpatient treatment. “Mind” (the “brain” or intelligence of APS) also plays an important role. As described earlier, several participants gained a more objective perspective by learning all they could about schizophrenia. The concept of “Mentor” (e.g., Werner's 1992, 1993, 1995 discussion of resilient children's ability to win support from others) can be taken to include both peers and adults in the family or wider community, whom the APS accurately assessed as positive role models, and emulated. Several APS described relationships with such individuals. As noted earlier, for example, one father modeled dedication to caregiving, and another's is an ongoing source of support for her. However, a number of participants noted that social stigmatization of psychiatric illness made it impossible for them to confide in teachers, and caused extended family members to distance themselves from the afflicted nuclear family. In addition, the persistence of schizophrenia symptoms despite treatment appears to have worn out those who did attempt to intervene.
The concept of “development” carries the analysis to a deeper level. It has been shown that the developmental stage of the child, teen, and eventual adult offspring at the time of onset of the parent's illness, exacerbations, and remissions can be key to their perception of both parent and illness. A broader view of development includes cohort effects, some of which were previously outlined. In the case of APS, cohort effects comprise the relations among their own developmental stage, their parent's illness and wellness events, and the developmental stage of their society.
On the simplest level, a parent who fell ill in the 1940s had very different societal resources available (state hospitalization, few medication choices, treatments such as early forms of ECT) than a parent who fell ill in the 1990s (fragmented community support for parent or family, atypical antipsychotic drugs, newer forms of ECT). On a more complex level, one may examine the society's construction of psychiatric illness. Does a given society “separate the person from the illness,” or does it implicitly view psychotic behavior as a personality issue or lifestyle choice? Does the society value the health of all its members, and demonstrate this in practical terms, or does it spend its financial and intellectual resources in other areas, which benefit only a few? Are family members–including young children–nurtured and supported, or are they abandoned to an “every man for himself” philosophy? The next chapter considers these results in the light of earlier research.
DISCUSSION
Overview
APS's narratives provided insights and recommendations likely to aid both clinical psychologists and public policy makers in their work with psychiatrically ill parents and their family members. They also suggested new opportunities for clinician-family alliance.
This project's core question was, “How do APS perceive effects of their childhood and/or adolescent experiences with the ill parent on their current efforts to provide some level of care for that parent?” Bernstein's (2000) three-axis heuristic (brain, context, and development) provided a model for organizing the data.
Thanks to the variety and complexity of APS's experiences and perspectives, it is not possible to directly answer the research question per se. Interviews with the participants produced narratives that were rich, complex, and provided multiple perspectives on APS's relationship with the ill parent across the years. This is consistent with the literature reviewed earlier, which depicts the APS experience as a many-faceted phenomenon. That is, there may well be a connection between a close early relationship and a close adult relationship with the ill parent, but many other variables are involved.
In this section I will discuss the main themes and findings arising from the narrative data, and ways in which they may influence the current APS-parent relationship.
Brain
The literature review documented the importance of “Brain” factors such as APS's intellectual capacities. Several narratives illustrate APS's application of their cognitive strengths to the difficulties they faced. A female psychiatrist delved into the topic of schizophrenia as a young medical student, and reported that her feelings toward her mother became more positive as her professional knowledge grew. Another APS experienced a blaze of insight into her mother's delusions on one humiliating day in elementary school, when she tried to tell schoolmates that her mother was the Queen of England. Though painful, this event averted any further enmeshment in her mother's delusional system. This APS notes, “SZ was a horrible thing that happened to [my mother]. She is a victim. She is a human being.” A participant who is preparing for a health-related career said that having given great thought to and “worked out a lot of the issues I had with [mother] in childhood” was a contributing factor to her career decisions.
The literature review spoke of the increased risk for close relatives of individuals with schizophrenia, such as children and grandchildren, of developing this illness themselves (e.g., Kaplan, Sadock, & Grebb, 1994). Several participants mentioned their concern about this risk. Only one participant reported having been diagnosed with schizophrenia herself. Initially, she said, she blamed her own illness on her mother's stress-inducing behavior toward her. As she learned more about the illness, she was able to develop a more neutral and forgiving view, in which she and her mother alike are victims of schizophrenia.
Context
This axis incorporates a range of factors widely reported in the literature. These include potentially detrimental parental behavior (in some cases involving abuse and neglect), effects of the onset and course of the parent's illness, possible cohort-related treatment availability, quality of support vs. stigma from family and community, and gender issues.
Parental Behavior
A number of researchers noted that exposure to psychiatric illness-related parental behaviors while growing up has potential to negatively affect the parent-child relationship over time (e.g., Seifer, et al., 1996). Indeed, some participants who reported physical or emotional abuse by the parent preserved only minimal present-day contact with the ill parent. One APS keeps a careful distance from his violently abusive father, visiting just enough to let his children “know they have a grandfather.” Several other participants, however, maintain a caring connection. One woman, who also described violent abuse and “stayed clear of” her dangerous father as a child and teen, now provides total home care for him, and says she has forgiven him. Another, who felt frightened and frustrated as a child, can summon up “little patience” with her mother, whose lack of nurturance has now spanned four decades. Yet, although she rarely visits, she continues to monitor her mother's condition. One woman reports that, although she was physically abused by her mother while growing up, she now visits her regularly and sends letters. Another who suffered abuse and neglect (including being forced to ingest soap in order to “keep clean inside”) tries hard to maintain a caring relationship with her ill mother. However, this latter individual is frustrated by her mother's relapse into psychosis, an apparent result of medication noncompliance. A man who was abused and neglected by his mother has given up hope for any meaningful adult relationship; this may have at least as much to do with her currently high level of symptoms as with their early history together.
Several participants described early positive attachment experiences to the ill parent, before the onset of symptoms. None made any direct connection between such experiences and the current caregiving relationship; one did note that this early bonding renders his loss all the more poignant. Most participants, though emotionally connected with the ill parent and attempting to ensure his or her well-being, currently experience some degree of physical and/or emotional distance from the parent. One notes that “I... have had to accept that I may never come to understand her.” This may be inevitable in view of typical positive and negative symptoms of schizophrenia such as paranoia and emotional blunting (e.g., Torrey, 1995b).
Onset and Course of the Parent's Illness
Consistent with the literature, several participants discussed the effects of time of onset and/or course of illness on their relationship with the ill parent. A man whose mother “seemed to change completely” during her initial psychotic break when he was ten years old notes that “it seems my real mother died when I was 10.” Memories of her pre-illness ability to nurture him prompt present-day longings “to reconnect somehow.” As noted above, his mother's present-day symptoms render this connection impossible.
By contrast, a woman who had to deal with her mother's florid psychosis and severe negative symptoms of schizophrenia during her youth now feels “very fortunate” that her mother's illness has “gone into a residual state with age and treatment,” and does not appear to be worsening or “generalising to other cognitive domains.” The relative mildness and predictability of her mother's current symptoms now permit a welcome closeness.
Another participant reports that her mother's chronic symptoms “stole her positive emotions like love and interest in others,” rendering closeness impossible after the onset of illness. By her 20s, this woman felt “total anger” toward her mother, and in her 30s she “wanted to be a wife and mother, not a daughter of an sz.” She has stayed in contact with her mother, but their interactions are “brief, sterile, no bonding.” Though she officially became her mother's caregiver in her 40s, after her father's death, their relationship is “a business type.”
A different woman notes that “In the times when my mother was doing quite good, I thought I could build a real mother-daughter relation with her.” Recently, though, her mother ceased to be treatment compliant and her symptoms resumed. From this episode, the woman concluded, “She didn't care a bit how I felt about it. . . I was really angry and sad about that. It made me see that I never really had any relationship with her at all.”
Late-onset comorbid illnesses have potential to alter the course of the parent-child relationship once again. One APS's mother, already significantly impaired since her daughter's early childhood, has suffered additional cognitive setbacks over time (dementia and aphasia). These render closeness in any ordinary sense impossible to regain. Yet her daughter perseveres in writing letters, noting that her mother “keeps each letter I write and reads them over and over again - not really remembering that she already read them.” She depicts mixed feelings likely recognizable by the other participants in this study: “ I do this because I love her. And still hate her. It is complicated.”
Cohort-Related Treatment Availability
Because the treatment of schizophrenia has evolved considerably in the past several decades, one might reasonably expect to find cohort effects (cf. Kaplan, Sadock, & Grebb, 1994; and others). For example, in view of recent advances in antipsychotic medication, it might be expected that APS with older parents would report a significant improvement in the parent's symptoms and behavior, and thus possibly also in the parent-child relationship, over time. However, this was not evident in APS's narratives. Participants whose parents were in an older cohort did not report such an improvement in recent years, nor did participants whose parents have likely had ongoing access to new generation antipsychotic medications describe fewer or more minor parental symptoms of schizophrenia.
The reasons for this are unclear. One possibility is that while modern medications may suppress positive symptoms of psychosis, they generally have little effect on negative symptoms (Torrey, 1995b, and others, discuss this problem). Also, even when medication response is excellent, treatment noncompliance may occur, as with several participants' parents. This would be consistent with the observations of Nathan (1993) and others.
Quality of Support from Family and Community
Other important issues that emerged both in this study and in the literature had to do with the importance of familial and social supports to family members dealing with a loved one's psychiatric illness (e.g., Bachrach & Nadelson, 1988; Caton, Cournos, Felix, & Wyatt, 1998; Torrey, 1995b). One might reasonably expect that APS whose childhood and adolescent experiences with the parent were mediated by caring from family members, or who had significant support from others in the community, would be more likely to negotiate a positive caregiving relationship with the parent in adulthood. Participants in the present study did not generally describe significant support at any point in their lives. Rather, most depicted a solitary and often lonely struggle with minimal help from family or local community.
One woman reports that, even today, her father does not speak the word “schizophrenia,” and “There are only 2 people in my entire (huge) family who knew what was going on and I never found that out until I was an adult.” Another received some help from relatives, including her maternal grandmother: “[She] only visited our home one time in my entire life, after The Day Mama Went Crazy. But she gave me a drop of [the nurturance] I needed.” One participant mentioned a lack of adequate community services. Two described legal obstacles to involuntary hospitalization. One pointed out that, in contrast to offspring of parents with alcoholism or Alzheimer’s, offspring of parents with schizophrenia lack a comfortable public forum for their concerns or even support groups, apart from the web-based gatherings mentioned earlier. It bears noting that the APS participating in the current study may well represent a skewed sample in this regard, as they were recruited through just such Internet groups. APS who have better family and immediate community support might not frequent these websites.
Gender
Obviously, both men and women are at risk for schizophrenia; both men and women may become parents; and parents may have both male and female children. However, no relation of gender to the caregiving experiences of APS has been described in extant literature. Several authors who address families with mental illness in general (e.g., Coverdale, Schotte, Ruiz, & Pharies, 1994; Mowbray, Oyserman, Zemencuk, & Ross, 1995) have touched on the topic, but it is not clear whether or not their findings would generalize to APS and their parents.
Three male and seven female APS volunteered to participate in the present study. That there would be more female than male participants was expected, given several researchers' reports that most adults who are caregivers for relatives with a medical of psychiatric illness are female (e.g., Ascher-Svanum and Sobel, 1989; Stephens, Franks, & Atienza, 1997). Two parents were male and eight were female. The relatively larger number of female parents is consisted with studies by Gottesman, (1991) and others, which suggest that, as women tend to experience a first break psychosis at a later age than men do, they may be more likely to have already married and borne children prior to their illness. The existence of fathers with schizophrenia who are raising children has been noted by several researchers. Apfel and Handel (1993), for example, noted that men with severe mental illness may harbor “wishes for fatherhood and strong emotional responses to fatherhood and may, in fact, play a role in parenting their children,” but they did not discuss the experiences of these fathers' offspring.
The present data do not lend themselves to a detailed analysis of differential effects of the father versus the mother as the ill parent. Anecdotally it was offspring of ill fathers who tended to report the most severe physical abuse while growing up, while more emotional abuse and neglect was reported by the offspring of ill mothers. However, several ill mothers reportedly physically abused their children.
Development
Another consideration that emerged both in this study and in the literature was that the effects of childhood experiences are mediated not only by the child's intellectual capacities, genetic risk/resilience factors, and family and societal context, but also by the age and developmental stage of the child at the time the experiences occur. Erlenmeyer-Kimling and colleagues (1984), for example, emphasized that the wide range of potential illness-related behaviors encompassed by a clinical diagnosis of schizophrenia may change over time. Armsden and Lewis (1993) offered a developmental approach to children's and adolescents' ability to cope with changes in a parent's medical illness.
As numerous researchers have reported (e.g., Nicholson, Nason, Calabresi, & Yando, 1999; Nicholson, Sweeney, & Geller, 1998a), psychotic illness often interferes with a mother's ability to nurture her children. Childhood experiences reflecting symptoms of parental schizophrenia are not somehow left behind when the child grows up (e.g., Barnes, 1996; Radke-Yarrow, Sherman, Mayfield, & Stilwell, 1990). Instead, effects cascade forward through the years and across developmental stages.
Most participants did not report substantial pre-illness nurturing by the afflicted parent during any stage of childhood, and several reported chronic abuse and neglect. However, a few described a link between pre-illness experiences of nurturing by the ill parent and the present relationship. One APS, who was in early to middle childhood when his mother became ill, emphasized the influence of early positive attachment experiences on their current relationship. He directly attributed his inveterate “longing for true connection” with his mother to the nurturing she was able to provide in the first ten years of his life. This provided a store of positive memories on which to draw in the decades after her psychotic break. It was a mixed blessing, however, in that his mother's illness-related behaviors included detrimental emotional and financial manipulations. He eventually found it necessary to set firmer boundaries with her. His situation evokes Dunn's (1993) emphasis on the need for APS “to set realistic yet caring boundaries with their mentally ill parent” in adulthood (p. 188).
When one woman was raising her own children she was able to access memories of her mother's nurturance. But once her children reached the age she had been at the onset of her mother's symptoms, she found herself “ranting” at them as her mother had done with her. Her mother “. . . simply had no notice of her children's cognitive, emotional, bonding needs. Her mind/attention never reached outward, only inward to what the voices were saying.” This woman sought counseling, as “My kids were too special, too wonderful to be victimized like that.” Another, who had few positive childhood memories on which to draw, reported that childbearing was fraught with the fear of continuing what she perceived as an almost inevitable cycle of abuse. She, too, has sought counseling. Their concerns are reminiscent of what Klein (1990) called a child’s failure to internalize a “positive parental image” (p. 44).
Possible implications of a positive versus a negative early relationship are difficult to determine in this limited, self-selected sample. Two APS reported experiencing severe physical and emotional abuse in childhood at the hands of their ill parents. One maintains a significant distance from his father, while the other cares for her father in her home. In both cases, the degree of parent-child distance during the APS's adulthood may be more influenced by the parent's current medical/psychiatric status than by their earlier relationship. It seems possible that the relatively recent reduction in the latter's father's dangerousness following his stroke likely plays a role in their relationship, while the former reported that his father is fending well for himself and not in need of close monitoring.
Marsh and Johnson (1997) and others have stressed the importance of caregiver burden and the “sandwich generation” experience in relation to parents whose young adult children develop schizophrenia. This area has also been explored in relation to adults whose own parents develop dementia or some other debilitating illness (e.g., Globerman, 1994). Current findings regarding APS's caregiver burden and “sandwiched” experience are consistent with this literature. For instance, several participants reported that they have children of their own to care for in addition to their responsibilities toward the ill parent, and described feeling “sandwiched” between the needs of their parents and of their own children. One full-time caregiver for her father is also the single parent of a young child. She noted, “These days I have no one to help me with my dad. He lives with me. I refuse to put him in a home until it is absolutely necessary.” As noted earlier, several parents have developed dementia, aphasia, or other illnesses in addition to their chronic schizophrenia, and reside in assisted living apartments or nursing homes. James Greenley (1990), expressed concern that such individuals may be at risk of receiving less than optimal care, because of a lack of mental health specialists available in such facilities.
No literature was found that addressed the effects on grandchildren (or their parents) of having a grandparent with schizophrenia. This topic was discussed by several APS. One mentioned the absence of normative grandparenting activities in her own and her children's lives: “She does not ask about, care about or discuss her children or grandchildren.” Another disciplines himself to bring his children to visit their ill grandfather on a regular basis, despite his own preference to cut off contact.
It was not readily possible to locate “sandwich generation” or related literature that addresses families in which an adult caring for an ill parent feels pressed to choose not to bear children of his or her own. In the current project, one woman notes that she has indefinitely delayed having children, because her mother's psychiatric and physical health are fragile and her care requires a great deal of the daughter's time and energy. As was mentioned earlier, extended family have long been alienated by her mother's illness-related behavior, and provide this woman with little or no assistance. All participants reported working at least part-time; most also do two or more hours of volunteer work per week. No APS in the present study discussed negative effects on their own career goals related to caregiving for the ill parent; one described her father's grueling routine of hourly calls home from work during exacerbations of his wife's illness. The possibility that time spent caring for the ill parent directly or indirectly impinges on APS's careers merits investigation.
An interesting sidelight concerns several APS whose ill parents are no longer living. These individuals sought out online discussions with other adult offspring of parents with schizophrenia, and responded to my invitation to participate in this study. Like the other APS, they discussed their relationship with the parent, and how it evolved over time. Because it was necessary to interpret the participation criteria strictly, I was required to omit these APS's narratives. It was clear from their e-mails that although their ill parents are deceased, they are still sorting out how parents such as theirs can best be cared for. Their efforts to participate in the present research illustrate how the effects of growing up with their ill parent may cascade through the offsprings' developmental stages for decades, even after the parent's death.
Recommendations for Clinical Practice
While this was an exploratory study, several recommendations for clinical practice were prompted by the data. These are discussed below under the familiar Bernstein (2000) rubrics.
Brain
The APS's narratives discussed herein have demonstrated the importance of applying their cognitive strengths to the difficulties inherent in their ongoing relationship with the ill parent, and to their own concerns about their elevated genetic risk for psychiatric illness.
Although clinicians are unable to increase any given client's cognitive abilities any more than we can reduce their genetic risk factors, we can work to encourage them to capitalize on the intellectual resources they possess to meet the challenges they encounter. APS's awareness of this risk and possible misunderstanding or exaggeration of the statistics may produce substantial anxiety. Clinicians can increase their knowledge about familial risk of schizophrenia (e.g., even among identical twins, the second twin has only a 50% chance of having schizophrenia; Kaplan, Sadock, & Grebb, 1994), and employ this knowledge to reduce APS's anxiety about themselves and their children. In some cases, for example families in which multiple members are already symptomatic, clients and their families might profit from a referral to a genetic counselor. As clinicians commence these and other efforts, we become active participants in APS's “context.”
Context
Participants have provided a wealth of information on contextual aspects of their relationship with the ill parent. At the most basic level, APS have demonstrated that they exist. Thus, clinicians must ask about the existence of offspring of any age when working with an adult with schizophrenia, and they should be prepared to explore both past and present practical and relational issues with the ill parent when working with APS.
In this study, participants have described both nurturing and detrimental parental behaviors, and how these fluctuated with the course of their parent's illness; the effects of perceived support from and stigmatization by family and community; the availability of treatment options and the parent's degree of treatment compliance; and the possibility of gender issues affecting the caregiving relationship. APS have made it clear that they need practical as well as emotional support from clinicians. That is, in addition to psychotherapy they may need specific information about negotiating the local mental health system.
Clinicians working with APS should be knowledgeable about community resources for APS, the ill parent, and other family members. They should, for example, discuss whom to call in a crisis. It is also important to be aware that laws regarding confidentiality and involuntary treatment may be experienced as obstacles by APS. They face the impossibility of gathering information from professionals working with their ill parent if no release has been obtained. In addition, they are required to prove that the ill parent poses an immediate danger to him/herself or others before he or she can be involuntarily treated. Abram & Teplin (1991), Lefley (1997), Steadman, Morris, and Dennis (1995) and Torrey (1995b) expressed concern that police might not be appropriately trained for taking into custody an individual with psychotic symptoms, or that individuals who break laws while psychotic might receive incarceration rather than treatment. Although participants in the current study did not report such incidents, clinicians should be aware that they are possible.
Participants in the current study reacted positively to the interview process. One noted, “I think this discussion is proving to be cathartic for me, and as I sit and write I seem to recollect things I have not remembered in a long time now. . .“ Most relished the opportunity to air their thoughts, and wrote at some length. This bodes well for clinicians who may work with APS. A variety of psychotherapeutic intervention have been reported in the professional literature. Williams (1998), for example, described themes that arose in her small group therapy with four female APS. These included caregiving issues, past and present anger, guilt, and attempts at denial. Participants delineated these and additional areas of concern: nuclear and extended family dynamics, a sense of isolation from “normal” families, the need to work on social skills that were not learned in childhood, balancing one's own needs with others', parenting one's own children differently from how they themselves were parented, and managing a parent's psychiatric decompensation.
In addition, support is available from groups such as the National Alliance for the Mentally Ill (NAMI), although some participants noted that NAMI's focus tends to be on helping middle-aged adults whose young adult children have a psychiatric illness. It is important for clinicians to be aware that, at present, the community support available for APS is a fraction of that available for families who deal with developmental delay and Alzheimer’s disease. In the latter instances, support and advocacy groups are well established, and the caregiver is often considered part of the ill family member's treatment team.
Clinicians are already trained to consider potentially helpful or complicating situational factors, including culture (e.g., Sue, 2001), socioeconomic status, any possible abuse history, the amount and quality of family support and mentoring, community resources, and any medical or substance abuse issues that accompany the presenting problem. The present project revealed additional contextual factors that have the potential to affect APS. These include the symptoms and course of the parent's illness, ways in which the family has organized to face its practical and emotional challenges, the possibility that the client was shifted among family homes and foster homes during exacerbatio