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 exacerbations of parental illness or hospitalizations, the
possibility that siblings may be symptomatic, and the effects of societal
stigmatization of people with mental illness and, by extension, their
families.
Earlier findings about the stigmatization of mental illness were supported
in this study; several participants noted that stigmatization by family
members and the public can interfere with the availability of family and
community support. Clinicians must take into account the possibility that
clients might be wary of identifying themselves as the offspring of parents
with schizophrenia. One person pointed out that dealing with a parent
who has schizophrenia has not yet reached the level of public acceptance
and support that in recent years have aided adult offspring of parents
with Alzheimer's. Clinicians are unlikely to be exempt from unexamined
stigmatizing beliefs about people who have schizophrenia and their close
relatives, for example preconceived notions of APS's early experiences
and present-day psychological stability. This researcher once heard a
therapist agonize, "How can I prevent my client from finding out
that she was born in the state hospital?!" The client was aware that
her mother was diagnosed with schizophrenia and had been frequently admitted
to the state hospital. The stigma attached to being born in the state
hospital was not the client's issue: it was the clinician's.
Development of a working alliance with other concerned family members
may be of particular importance, and inquiry about the experiences of
individual and familial social isolation is advised. Potential family
issues include disputes over the accuracy of the parent's diagnosis, conflict
over the APS's care of the patient, and quarrels over the fair distribution
of caregiving tasks and time among family members.
Development
It is also important for clinicians to apply their knowledge of lifespan
development to psychotherapy with APS. Current findings are consistent
with the risk-and-resilience literature (e.g., Werner & Smith, 1982,
1992). It is thus suggested that clinicians working with APS examine the
age of onset and course of the parent's illness, the offspring's developmental
stage at these points, and resources that have been/are available to parent
and family for the duration of the illness. As noted in the Results chapter,
these resources comprise not only contextual variables such as extended
family, but also availability and quality of community services and medication.
In addition, present-day caregiving and vocational responsibilities must
be carefully considered. APS who felt responsible for the parent's care
while growing up might be at risk to experience more than the usual conflicts
about individuating and leaving the parent's home.
Several other issues worthy of psychotherapeutic exploration arose in
both the literature and the current study. One was the ongoing effects
of positive (nurturance) versus negative (abuse) early experiences with
the parent; another was the age and developmental stage of the client
when the parent has been symptomatic. As noted earlier, some APS described
feeling "sandwiched" by competing personal and vocational responsibilities.
And, as noted earlier, during the statistically dangerous developmental
period of adolescence, one participant became psychotic herself.
Owing at least in part to the stigma surrounding mental illness, the culturally
normative experience of adults needing to provide care for their frail,
physically ill, or dementing aging parents does not yet encompass the
notion of the parent having schizophrenia. As several participants mentioned,
and consistent with the literature, supportive community networks for
APS are meager compared to those for parents of developmentally delayed
children or for adolescent and adult offspring of alcoholics. Young and
middle-aged adults experiencing the nonnormative responsibility of a parent's
psychotic exacerbation currently have few models of how to handle such
a crisis. Even if their psychiatrically ill parent resides in a nursing
home, APS are unlikely to be included in the parent's treatment team in
the ways taken for granted by adults whose ill parents have Alzheimer's
disease or a stroke (e.g., Fisher, Benson, & Tessler, 1990).
Adults whose parents develop dementia may feel waves of shock and sorrow
as they watch their parent change (Biegel, Sales, & Schultz, 1991).
Their own family role meanwhile evolves into parent-of-the-parent. APS,
too, may feel sorrow about the difficulty of communicating with their
ill parents, or resentful, or empathic, or any of a host of possible emotions
also experienced by the adult offspring of dementia patients. However,
APS have by definition been in the caregiving role for an ill parent most
of their lives. Thus they will not, in adulthood, feel the shock of having
a previously well parent suddenly diagnosed with a serious illness.
Both adult offspring whose parents have dementia and APS may worry that
they, themselves, will develop the parent's illness. However, an adult
whose parent has Alzheimer's is usually decades away from age 85, the
age at which 15-25% of adults with Alzheimer's developed the disease (Kaplan
& Sadock, 1994, p. 1159); the adolescent whose parent has schizophrenia
is close to or within the age 15-25 range in which schizophrenia typically
manifests itself (Kaplan & Sadock, 1994, p. 461. In addition, while
it is true that grandchildren of Alzheimer's patients may be at slightly
increased risk of developing Alzheimer's themselves in old age, that day
is far in the future. Finally, because Alzheimer's dementia does not strike
adolescents, while schizophrenia does, the latter (but not the former)
may grow up with one or more symptomatic young siblings.
Recommendations for Future Research
The current study was exploratory. APS territory remains to be more fully
explored and charted, so APS's perceptions and concerns discussed herein
may guide both clinicians and public policy advocates. In keeping with
Bernstein's three-axis matrix for assessment and understanding, it is
recommended that research on APS utilize a perspective that takes into
account the interactions of genetics and intelligence, family and societal
context, and developmental issues referred to throughout this report.
New research could be designed to explore within and beyond the limits
of the present project, which have been discussed. These include, for
example, the small number of participants, lack of a comparison group,
unverifiability of data, any specialized characteristics of participants
(e.g., proportions of male to female subjects, history of positive or
negative relationship with the parent, ethnic characteristics, and familiarity
with computers), and the use of a qualitative approach.
For example, a study that involved a larger sample could compare and contrast
experiences and perceptions and strategies across cultures. Both quantitative
(statistical) and qualitative (narrative) aspects of APS's experiences
and relationships could be addressed. It would also be of interest to
explore the experiences and perceptions of APS who have no experience,
or else only limited experience, sharing their stories on web bulletin
boards and list-serves. It would be worthwhile to explore responses of
a comparison group (e.g., offspring of parents without psychiatric illness,
offspring whose parents have a "medical" illness or dementia,
and so on) with responses by APS, on any caregiving topic. And, clearly,
the credibility of future studies would profit from objective verification
that the parent does indeed have a schizophrenia-spectrum diagnosis.
Research employing a theoretically based sample rather than a sample of
convenience should also prove enlightening. For example, some participants
in this study reported concern that the ill parent might one day be homeless;
one ill parent benefitted from a trust fund, while others did not. Theoretically
based research could stratify a sample of APS to include socioeconomic
status as a variable.
Concluding Remarks : The Longest Bereavement
This study has addressed the effects on APS of their accumulated years
in relationship with an ill parent. In particular, it has addressed the
influence on participants of brain-related factors (e.g., possible genetic
susceptibility to psychiatric illness), context (e.g., availability of
supportive relatives and some effects of public policies), and development
(e.g., how old the APS were/are when exposed to symptomatic parental behavior).
It has suggested that a form of shorthand for the risk and protective
factors identified in the literature and among participants in this study
might be "the three Ms"-money, mind, and mentor.
The "invisible children" (e.g., Fraiberg, 1978; VanHaren, LaRoche,
Heyman, Massabki, & Colle, 1993) whose parents have schizophrenia
are becoming visible in childhood, thanks to news stories when they are
harmed or killed. They are becoming more visible to researchers working
with their parents, such as Joanna Nicholson and her colleagues (e.g.,
Nicholson, Geller, & Fisher, 1996). Now the invisible adult children
of psychiatrically ill parents are starting to make themselves known.
I as the researcher and instrument of the study, in qualitative fashion,
was changed by the study. Although I have done much research concerning
APS, and have worked briefly with several APS in psychotherapy, the participants
interviewed for this study taught me a great deal about the APS experience.
I was impressed by their generosity in making time to be interviewed,
and subsequently by their expertise, their thoughtfulness about the interview
questions, and the personal information that they provided. I hope this
study will be a starting point for subsequent investigators, who will
provide additional information for clinicians working with APS.
In every era, some individuals with schizophrenia become parents. "Offspring"
of all ages thus exist. Their needs and concerns have been only tangentially
addressed by prior research, the balance of which focuses on parents and
other relatives of young adults who have schizophrenia-spectrum illnesses.
Current findings highlight the essential role that concern for children,
teenagers, and adults whose parents have schizophrenia must play in psychotherapy,
public policy, and research. At present, these offspring are simply not
targeted (e.g., Anderson, Reiss, & Hogarty, 1986; Doll, 1976; Lefley,
1992, 1994, 1997; Hatfield, 1997). Their needs are addressed (or not)
in near-miss interventions aimed at populations such as their parents,
or abused children in general, or adults caring for an aging parent. Adults
whose parents have dementia make an interesting parallel with APS. As
one pointed out, it is "hard almost to separate one [condition] from
the other since a lot of the behavior is so similar." This study
is the first to consider the contrast between confidentiality and involuntary
commitment laws as they apply to ill parent/offspring pairs when the parent
has a dementing vs. a psychotic illness.
As mentioned earlier, providing care for one's aging parents is a normative
life experience. Some need help with heavy chores; some become too frail
to live alone. If the aging parent has a medical disorder, family participation
in his or her care is often invited, even expected, by the treatment team.
This is particularly true when a parent has dementia, but it has not always
been the case. Far less information about Alzheimer's and other types
of dementia existed thirty years ago than exists today. Adult children
who were bewildered, shocked, hurt, or frightened by a dementing parent's
behavior often had no good source of information about the condition,
and very little practical or emotional support. Slowly, grassroots organizations
of adult children began to grow. Professional interest awoke. Research
studies proliferated. Today, though no cure has yet emerged, many resources
and much information exist to help adult children cope with a parent who
may have great difficulty with the most basic activities of daily living.
Grassroots advocates and professionals also strive on behalf of individuals
who have schizophrenia. Because dementia and schizophrenia both involve
disordered cognition and behavior, one might reasonably hope concerned
families would receive equivalent emotional and practical support; however,
they do not.
APS belong to a kind of "psychiatric sandwich generation." They
experience great concern about a parent who has (or had) a schizophrenia-spectrum
disorder; on top of a sense of responsibility for the parent, APS often
have more developmentally typical responsibilities such as career, school,
or children of their own. Participants' voices tell us that, when a parent
falls ill with schizophrenia, the child or teen feels an enormous sense
of having lost the parent he or she once had, or should have had. This
is accompanied by various forms of mourning that can include rage, guilt,
sorrow, and persistently reconsidering what should have or could have
been done. It also can include a determination to provide some level of
care for the parent, even though the parent cannot reciprocate and there
is little or no hope of ever regaining the barely remembered pre-illness
mother or father.
APS's bereavement may linger from earliest childhood to the end of the
lifetime of a parent who is present, yet not present. Adults whose parents
develop Alzheimer's dementia have been said to experience "the long
bereavement" (Forsythe, 1999). By this token APS-whose loss of a
parent begins far earlier-may be said to experience the longest bereavement.
Back to Part 1 - The Longest Bereavement,
Note: other researchers working on children of schizophrenia who want
to contact the author of this paper, may do so at: Sharon Smith, PsyD
mainelyneuropsych (at) prexar.com
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