Journal of Clinical and Experimental Neuropsychology

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Brain damage is a family affair

Muriel D. Lezak

To cite this article: Muriel D. Lezak (1988) Brain damage is a family affair, Journal of Clinical and
Experimental Neuropsychology, 10:1, 111-123, DOI: 10.1080/01688638808405098

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1988, Vol. 10, NO. 1, pp. 111-123 @ Swets & Zeitlinger

Brain Damage is a Family Affair*

Muriel D. Lezak
Oregon Health Sciences University, Portland

ABSTRACT

Behavioral alterations due to brain damage that compromise the quality of

patients’ lives also affect the well-being of patients’ families. Family distress
following head injury has been well-documented. With other cerebral disorders,
similar emotional burdens and family disruptions are experienced by the
immediate family. Most families suffer many of the core problems arising from the
patient’s dependency and cognitive inefficiency, and from social reactions to the
patient’s disability. Moreover, emotional disturbances and executive disorders
associated with the site or nature of the lesion(s) affect patients’ interaction with
their families differentially creating distinctive patterns of family burden. Specific
family problems may be relieved through education, counselling, and emotional
support.

Changes in the personality and capacities of brain damaged patients and

associated changes in their families’ financial and social situation tend to create
significant emotional and practical burdens on these patients’ close family
members. The nature and severity of problems experienced by family members
will differ from family to family depending on premorbid cohesiveness, family
attitudes about illness and responsibility, and financial and social supports. It
will also differ among family members, with the person who assumes the role of
primary caretaker frequently carrying the greater part of the burden; while the
severity of stress on other family members most typically varies according to
their capacity for independence from the patient and the primary caretaker.
The observations presented here may not apply everywhere, nor to every
family situation. They were drawn from clinical experience (Lezak, 1978) and
research involving mostly head trauma victims (Lezak, 1987). Reports of
* This paper is based on the author’s Presidential Address presented at the International
Neuropsychological Society’s Tenth European Conference on July 3,1987 in the Faculty
of Biology, Barcelona, Spain.

Address for reprints: Muriel D. Lezak, Ph.D., Department of Neurology, L.226, Oregon
Health Sciences University, 3181 SW Sam Jackson Park Road, Portland, OR 97201,
U.S.A.

Accepted for publication: September 15, 1987

112 MURIEL D.LEZAK

similar family problems have come from other parts of the world (e.g., Oddy,
Humphrey, & Uttley, 1978, in Great Britain; Rosenbaum & Najenson, 1976 in
Israel; Thomsen, 1974 in Denmark) and regarding other kinds of cerebral
disease (dementia: Goldman & Luchins, 1984; stroke: Artes & Hoops, 1976;
Mulhall, 1981; Schulz, Tomkins, & Rau, in press). However, some cultural and
subcultural differences do exist. For example, Carlo Semenza (personal
communication, 1979) studied the adjustment of older Italian women whose
chief role had been the care of their children and who were now wives of stroke
patients. Some who did not report the stress frequently experienced by
American wives of stroke patients, seemed to find that nursing their husbands
allowed them once again to resume activities that had given them dignity and
responsibility when raising their children.

THE NATURE OF DISTURBED PATIENT BEHAVIOR

Most brain damaged patients suffer from two different kinds of behavioral
disturbances. (1) Tissue destruction and associated metabolic and neurohumo-
ral alterations effect concomitant behavioral and emotional changes. By and
large, as the severity of the organic damage increases, the capacity for self-
awareness, and particularly for accurate self-appreciation decreases. Thus, the
most profoundly impaired patients, such as those with advanced dementia or
severe traumatic injuries, are typically only dimly aware of their dysfunctions, if
at all. Their behavioral problems can be best understood as direct consequences
of their organic conditions.
At the other extreme are persons who sustained little tissue damage as, for
example, persons who have had mild concussions or a slight stroke. In most
cases their capacity for self-awareness has remained virtually intact. While
experiencing only minimal emotional and personality alterations on an organic
basis, many are acutely aware of their reduced mental efficiency, weakened
emotional control, or other residual impairments such as occasional clumsiness
or effortful speech. Many mildly impaired patients experience these changes as
fatiguing, embarassing, frustrating, and even frightening; and react appropri-
ately with anxiety, irritability, bewilderment, or social withdrawal. Depression
affects most of these patients, at least transiently; for some, depression becomes
chronic. The psychological disturbances of these mildly impaired patients best
demonstrates the behavioral alterations that may be thought of as indirect
consequences of brain damage or secondary reactions to their altered mental
status.
Psychological alterations that occur predominantly as the direct or the
indirect consequences of brain damage can be distinguished most clearly at
either end of the continuum of severity. Most brain damaged persons, however,
are situated somewhere in-between these extremes. Typically, the moderately
impaired patients’ psychological status and behavioral repertoire evolve in a
sequence of secondary reactions to perceived or misperceived deficits, in
 BRAIN DAMAGE IS A FAMILY AFFAIR 113

interaction with primary psychological deficits, compounded and exacerbated

by interpretations and misinterpretations of how the world treats them. In
practice it often becomes difficult if not impossible to sort out those behavioral
and emotional expressions that arise directly from the dysfunctional brain; and
those that reflect patients’ reactions to their plight.

PATIENT BEHAVIORS MOST LIKELY TO CREATE FAMILY

PROBLEMS

In considering the different kinds of behavioral problems that confront families

of brain damaged patients, it is important to realize that these problems can be
quite subtle, making it dif€icult for psychologically naive and typically
unprepared family members to appreciate what it is in the patients’ behavior
that is so unsettling or irritating, particularly when much of what they do
conforms to the families’ past experiences with them. Moreover, many patients
- even those who have undergone extensive personality alterations- are able to
exercise some control over their aberrant behavior, at least for short periods of
time or in well-structured surroundings. Patients who delight hospital staff with
their good humor and consideration become irascible tyrants at home - except
when visitors are present. Apathetic patients may brighten up with company;
patients prone to incontinence may keep themselves dry for the few hours that
they are with friends; and even chronically depressed patients can put on a
cheerful front when around outsiders, much to the bewilderment of family
members who see these temporary improvements as evidence that these patients
are better than they really are, or that the family’s mistakes perpetuate the
patient’s impairments.
The chameleon-like character presented by some patients creates additional
problems for family members whose complaints and distress are not understood
by casual and infrequent observers who see the patients on their tenuously
maintained best behavior. Thus caretakers may get little sympathy or support
from physicians, friends, or relatives who do not live with the patient. Rather,
caretakers may be told they don’t understand the patient, are not caring for him
or her properly, or have some kind of personality defect that warps their
perceptions and attitudes. (The surest remedy for such misunderstandings by
well-meaning relatives is to entice or cajole them into caring for the patient for
several days.)

Behavior problems that are direct consequences of brain damage

The list of dysfunctional behaviors arising from brain damage is long. The more
exotic disorders are contributed by specific lesions, such as left-sided inattention
or apraxias involving complex volitional acts. Although it is obvious that such
problems can complicate patient care, these disorders are not frequently
encountered nor, although perplexing, are they the major sources of psycholo-
114 MURIEL D.LEZAK

gical burden for family members. Rather, the most burdensome behavior
problems tend to be those that are common to many patients, regardless of the
site or nature of the brain lesion.
Impaired social perception and social awareness. Most persons who have
suffered a significant personality change as a result of brain damage display a
childlike egocentricity. Their world view takes on a Copernican perspective
with themselves in the center: around them revolve persons important to them.
These patients can view or understand others only as others relate to them. This
is similar to the social perspective of a 4- or 5-year-old who has dim awareness if
any of mother or father as distinct personalities with activitiesand needs of their
own. These patients have lost the capacity to imbue others with self-hood, to
understand other persons as subjects in their own right. This lost capacity has a
number of important ramifications for patients’ families.
Patients whose egocentricity is a product of brain damage may be compro-
mised in their capacity to be aware of social signals or to interpret them
accurately. Those who can not appreciate the social requirements of a setting,
such as “church” or “restaurant”, are likely to embarass their companions with
noisy or crude behavior. Those who no longer understand socially meaningful
gestures, facial expressions, or metaphoric verbalizations require frequent and
tediously explicit explanations, directions, or reminding. Their capacity to
empathize with others or to recognize others’ emotional reactions and needs is
typically diminished if not lost altogether. Patients unable to appreciate that
their caretaker is tired or depressed, or that their behavior frightens their minor
children or disgusts their teenagers lack the ability, on an organic basis, to
recognize when they are being inconsiderate or taking advantage of the
goodwill or dependency of those around them.
Commonly associated with egocentricity is diminished self-awareness. Many
significantly impaired brain damaged patients cease dressing or grooming
themselves in a socially appropriate manner, and seem unaware that their
appearance distresses the family or that their loudness or rudeness, vulgarity or
sillyness is out of line.
These problems have many implications for the family. Patients who lack the
capacity to be socially sensitive and considerate of others can place a constant
burden of demands on the caretaker or engage other family members in endless
struggles for the caretaker’s attention, while the caretaker feels pulled in many
different directions, frustrated, and weary. These patients’ misbehaviors make
family gatherings unpleasant. Social outings with the patient cease to be worth
the effort or embarassment. Old friends and even close relatives no longer visit,
thus isolating patient, caretaker, and dependent family members. The family
experiences emotional abandonment, for the patient cannot provide emotional
support or encouragement, the caretaker is often worn out, and others who
could give comfort no longer come around. The emotional plight of many
caretakers is poignantly revealed in the often-repeated complaint that the
patient shows no gratitude no matter how hard they try to please. A not
 BRAIN DAMAGE IS A FAMILY AFFAIR 115

untypical extreme of this insensitivity to the feelings and needs of the caretaker,
coupled with rigidity and a background of good manners, was displayed by an
elderly stroke patient who required a great deal of care. He thanked his wife for
every least attention she gave him, but insisted that she say, “You’re welcome”
each time he thanked her. Regardless of how tired or busy she was, or how slight
or oft-repeated the service, he persisted in saying, “Thank you,” in increasingly
angry tones, until she appeased him with still another, “You’re welcome.”
Impaired control. Control problems show up in different ways, each
distinctively burdensome to the family. Impulsivity is the most obvious
manifestation of impaired control, and anger outbursts the most commonly
reported form of impulsivity. Relatively few patients act out anger impulses
consistently, although many grab or kick or jab when frustrated or tired. Most
patients take their anger and frustrations out in shouting, gestures, or diatribes
which, when virulent, can be as distressing to a conscientious or sensitive
caretaker or a bewildered child as a physical blow.
Almost any activity can be affected by impulsivity. Some patients become
impulsive eaters, fattening on whatever is in sight. When the physician
prescribes dietary controls, it is the caretaker who must be vigilant about hiding
food while coping with the patient’s unreasonable demands for more. Sexually
impulsive patients are at best a nuisance; at worst a constant worry. A teenage
girl could not bring her school friends home because her brother inevitably tried
to kiss and fondle them. An elderly woman complained that her husband felt for
her breasts whenever she bent over to pour his coffee. And the mother of an
attractive young head trauma victim was unwilling to allow her irresponsible
and easily aroused daughter out of the house alone for fear she would come
home pregnant. Patients who spend money impulsively must have their charge
cards destroyed and bank accounts closed to preserve the family’s finances, an
undertaking that is not easy to accomplish when patients are sensitive to
assaults on their dignity or authority. Others run up huge telephone bills, go for
taxicab joyrides, or pick up items in the supermarket. Many brain damaged
patients, particularly young, ambulatory head trauma victims, seem unable to
resist alcohol or drugs, so that substance abuse becomes an additional
complicating problem.
Control problems also show up as restlessness and agitation.Some patients
seem to be in perpetual motion--pacing, jiggling a foot, or fiddling with
something. The pacers, in particular, are difficult for the family to handle, both
because they create a constant stir and because 24-hour surveillance is needed
for those who tend to wander out and get lost.
Impatience is another burdensome characteristic of many brain damaged
patients. The impatient patient’s agitated nagging adds to the general uproar,
while impatience feeds the patient’s frustrations and increases the likelihood of
irritability and temper outbursts.
Another control problem shows up not in acting-out, but in inability to act
spontaneously and flexibly. Many patients become confused or helpless in the
116 MURIEL D. LEZAK

face of change of any kind, thus forcing their families into unwavering schedules
and routines. They may be caught up in rigid, often repetitive behaviors which
keep them from responding appropriately to new situation or entertaining new
ideas. After a while, family members tend to respond to the patient’s repetitive
acts as if they were another form of Chinese water torture. The “thanking”
patient described above is a good example of how a small, frequently repeated
demand can become excruciatingly annoying. Perseveration, the inability to
terminate a response, represents this kind of control problem in its most
extreme form.
Dependency. Dependency too can take many forms. Most moderately to
severely impaired patients are in fact dependent on their families or caretakers
for at least some important aspects of their physical care or financial support,
and few families begrudge the help they are able to give. Physical and financial
aspects of the patient’s dependency are most likely to create emotional
problems for the family when the family must relinquish its care. When the
patient’s needs exceed the family’s capacity to provide and the patient’s care or
subsistence must be obtained outside the family, many family members - and
particularly many caretakers - feel guilty for what they perceive as their failure
to care for the patient properly, and ashamed of their felt inadequacies.
The patient’s emotional dependency is typically experienced as much more
burdensome than physical dependency. It is not surprising that many brain
damaged patients develop strong dependency ties to their caretakers. The most
severely damaged tend to relate to the caretaker much as a young child to its
mother. Less severely impaired adults may develop reactive attitudes and habits
of emotional dependency that go well beyond their realistic needs. Rather, their
dependent behavior serves emotional needs occasioned by feelings of inade-
quacy, loss of control and authority, anger and retaliation, and fears of further
dilapidation or abandonment.
Dependency relationships established with the caretaker can set up vicious
circles which tend to sustain and strengthen the patient’s dependency. For
example, many stroke patients who keenly feel their loss of independence and
dignity attempt to maintain a sense of autonomy and authority by using
dependency tactics to force their spouses to wait on them hand and foot. The
price they pay for being boss, of course, is in greater invalidism and dependency
than their condition actually warrants, a price which forces them to work every
harder at revalidating their authority by controlling their spouses through
needfulness created by their condition as it deteriorates through lack of activity.
In another common scenario, ambulatory patients troubled by feelings of
worthlessness because they no longer earn a living or contribute materially to
the household, dog their spouses’ footsteps for fear of being abandoned. In
keeping jealous watch of their spouses’comings and going, these patients allow
the spouse neither peace nor privacy, increasingly alienating them in their often
frantic efforts to keep the spouses’ attention and affection. The more the
patients cling, the more obvious becomes the spouses’ impatience and
 BRAIN DAMAGE IS A FAMILY AFFAIR 117

dissatisfaction, and the more frantic the patients’ efforts to keep their spouses
under their immediate surveillance and control.
Some other forms of dependency reflect underlying organic deficits. Certain
disorders involving both cognitive and emotional components of behavior
reduce the capacity for spontaneous recall and forethought, and thus restrict the
patient’s mental existence to thc here-and-now. Other patients can look both
forward and backward in time but have difficulty organizing, ordering, and
integrating their thoughts and experiences. Still others have a greatly dimin-
ished capacity to entertain ideas spontaneously or initiate activities. All of these
patients have difficulty planning and therefore are unable to take charge of their
lives. They can be described as structure-dependent; i.e., they need external
guidance and support in those areas which normally require planning or
organization.
The degree to which a patient is structure-dependent tends to vary with the
severity of impairment. This can be seen most clearly in head trauma victims as
many patients who have sustained only a mild to moderate amount of damage
are able to accomplish their usual and familiar routines with little or no help but
have difficulty undertaking new or complex activities independently; severely
damaged patients will usually be unable to perform all activities of daily living
without instructions or prompts. The same gradations in structure-dependency
can be seen in dementing patients as they go from being relatively independent
in personal care and even decision-making in very familiar areas such as grocery
shopping or choice of familiar activities, to increasingly greater loss of ability to
think or d o for themselves.
The demands placed on the family by a patient’s structure-dependency
differs, of course, with the extent of that dependency. Severely impaired patients
who are able to live at home may require daily reminding to brush their teeth,
change their clothes, and come to the table at dinner time. After years of
regularly repeated instructions in a family setting rigidly routinized to
accomodate to the patient’s susceptibility to confusion and frustration, many of
these patients do assimilate frequently repeated routines into their limited
behavioral repertoire; but they remain unable to cope with change or novelty on
their own. Their families must not only develop a structured setting, but are
condemned to the monotony and rigidity of the highly structured living
conditions that make it possible for the patient to function at least semiautono-
mously.
Families of patients with only mild or circumscribed structure-dependency
face a different set of problems. In the familiar home setting, these patients
generally take care of themselves and go about their usual activities without
difficulty, giving the family little cause to suspect a problem, at least at first. In
fact, this condition may create no problems for elderly retired patients whose
lives had settled into a comfortable routine before they sustained brain damage.
For younger people, and those who had once carried family responsibilities,
their newly acquired inability to initiate new activities or to carry out such
118 MURIEL D. LEZAK

complex ones as keeping a check book or replacing a washer in a faucet confuse

and upset their families: For most purposes, these patients seem to carry on as
usual; and yet, they no longer suggest an outing when the weekend comes, nor
do they keep their old job if it involved responsibilityor nonroutine work; and if
they stay home and are able to cook, they are likely to prepare the same meal
over and over again.
Families, and many professionals as well, tend to misinterpret these patients’
inability to organize, initiate, or plan for themselves as laziness, lack of
motivation (which it may be, but on an organic basis rather than a form of
wilfulness), or a neurotic reaction to having been ill. When these problems of
structure dependency occur in emotionally dulled patients--as is common
following head injury or anoxic episodes, for examplethey can be mistaken for
depression by the psychologists and psychiatrists to whom the worried family
has turned for help. Family members dealing with these subtle problems of
dependency, with no understanding of their organic nature, may experience
guilty worry for not helping the patient return to independence, anger and
frustration at having to think and plan and assume responsibilities for the
patient when superficially the patient appears capable of resuming most if not
all premorbid activities, more guilt at being angry at the patient and the whole
frustrating situation, and guilt-laden depression.
Inability to learn porn experience. What bothers many family members are
their patients’ unremitting propensities for failure. Even when inappropriate
behavior repeatedly leads to trouble, even when that trouble is unvaryingly the
same, many patients do not change course. Families, particularly parents of
teenagers and young adults, often think that the patient should be allowed to
make mistakes as an effective means of learning such socially important virtues
as promptness, thrift, and orderliness. One highly educated family whose son
had been in high school when he received a moderately severe head injury did
not interfere with the disorganized mess in his room for close to a decade,
hoping that its unpleasantness and confusion would ultimately prompt the
young man to straighten up. Of course it didn’t. The family finally realized that,
unlike their other children, he was unable to put his room in order without
assistance. Families of adult patients, too, will let them make bad decisions
thinking that they can profit from their losses; only to discover that prior failure
has little effect on future behavior. With these patients, the family must treat
each situation as though it is new, and second-guess the situation on the
patient’s behalf in order to protect the patient from potential problems. This
requires constant vigilance from the family, a responsibility that, too, typically
devolves on the caretaker.
Specific emotional alterations. Many of the emotional changes that occur on
an organic basis have already been noted in this catalogue of patient problems.
Prominent among those that families find difficult to comprehend or tolerate
are apathy, silliness, heightened reactivity, and irritability. Exacerbating family
problems provoked by marked and usually unpleasant changes in these
 BRAIN DAMAGE IS A FAMILY AFFAIR 119

patients’ emotional makeup are family members’ assumptions that the patients
could control themselves and conform if they would just put their minds to it. At
one level or another, most people feel that the patient’s misbehaviors are
deliberate, an assumption that breeds annoyance and anger when the patient
doesn’t act appropriately.

Problems that are indirect consequences of brain damage

Psychological disturbances that are indirect consequences of brain damage
represent the patient’s emotional reactions to awareness of disability and its
consequences. These reactions occur as responses to the experience of loss,
whether that loss be overtly physical as loss of the use of a limb, or subtle and
vague as loss of a degree of mental efficiency in mildly concusssed patients, or of
psychosocial importance as loss of a job, independence, dignity, or authority.
In understanding these patients’ emotional reactions to their disability and its
social consequences, it is important to realize that awareness of disability is not
the same as accurate appraisal of damage or change in oneself. Patients whose
right middle cerebral artery stroke has diminished their capacity to appreciate
deficits on the left side of the body or impaired their reasoning will be keenly
aware that their independence and dignity have been compromised without
fully understanding why. Many severely impaired head trauma victims realize
that they cannot perform as well as before the accident but are unclear about the
nature and gravity of their deficits. On the other hand, it is not uncommon for
aphasic patients to overestimate their disability, particularly if they have some
limb weakness as well. This slippage between the patient’s condition and how he
or she evaluates it colors the patient’s reactions. Any attempt to understand the
emotional behavior of these patients must always take their misperceptions into
account.
Anxiety. Brain damaged patients become anxious when their experience of
themselves has unaccountably changed, as is the case whenever the mental
functioning of an appropriately self-conscious person has been altered. Thus
anxiety frequently troubles patients with mild, relatively diffuse damage--such
as in mild concussion or early Alzheimer’s disease; and also those with localized
lesions that preserve the capacity for reasonably appropriate self-awareness
such as left-sided lesions associated with Broca’s aphasia and right hemiplegia.
Anxiety also occurs in response to feelings and fears of being out of control of
one’s situation, afflicting many patients who may have diminished appreciation
of their deficits but are acutely aware that they are not in change of their lives.
Anxiety arising from awareness of an altered mental status tends to erode
patients’ self-confidence, to make them unduly cautious, and gives rise to
feelings of inadequacy, confusion, and--not infrequently--fears of going crazy.
The anxiety is typically played out internally: the family sees the patient as
inexplicably withdrawn, fearful, easily upset, and moody, and is helpless to d o
anything about it. In the case of mildly concussed patients, both patient and
family are typically in the dark as to why the patient has suddenly become so
anxious.
120 MURIEL D. LEZAK

When anxiety is predominantly reactive to loss of control over ones’ life, it

may appear as fearfulness to attempt anything new-including performing at
home activities learned in rehabilitation, as social withdrawal, as demands for
someone-usually the caretaker--to be everpresent, as compulsive orderliness, in
panic attacks or rage outbursts when the patient’s wishes and whims are not
catered to promptly and precisely, and in any number of other witting or
unwitting psychological ploys to bring order out of chaos and revalidate one’s
dignity and authority within the only arena of action now available to the
patient--the family. The impact on the family-and again, on the caretaker in
particular--is always unpleasant as family members feel forced into anxious
compliance with the patient’s anxious and often inappropriate demands.
Paranoia. Perceptual inaccuracy coupled with lack of insight, feelings of
worthlessnessbecause of incompetencies,and fears of rejection because of those
incompetenciescreate fertile ground for the development of paranoia. Paranoia
most often shows up in concerns that impotent male patients have about the
fidelity of their spouses; although female patients too, whose capacity for sexual
activity has been compromised by paralysis or an indwelling catheter, or who
feel they are now unattractive to their spouses, may also become suspicious and
accusatory. It is particularly painful for elderly spouses who have been
steadfastly faithful over the years to find themselves the target of sexual
accusations by a once trusting husband or wife who monitors their every
movement and times the length of their absences with fanatical precision.
Paranoidal suspiciousness about what others are doing with the patient’s
money are also common among patients whose deficits prevent them from
keeping track of it themselves. In its mildest form, the patient subjects spouse or
financial guardian to nagging about expenditures and demands for financial
reports. In its most extreme manifestations, patients who have retained legal
control over their finances may block any attempts by the family to spend
money, even for the patient’s benefit and upkeep of the home; or if the control
resides elsewhere, whoever has it is accused of malfeasance and may be
threatened with lawsuits.
Depression. Whether anxious or paranoidal, most persons who have expe-
rienced loss of any kind as a result of brain damage at best go through a
transient depression, and frequently are burdened with depression chronically.
Moreover, it is suspected that depressive reactions in some brain damaged
patients occur on an organic basis as a result of neurohumoral alterations
associated with tissue damage. While presenting the family with emotional
behavior that is unsettling and difftcult to deal with, depression also tends to
feed on and exacerbate the patient’s other emotional and social maladaptations.
Perhaps more than any other patient problem confronting the family, the
patient’s depression tends to erode family members’ self-esteem and enhance
their feelings of guilt and inadequacy because it is so resistent to their efforts to
relieve it.
 BRAJN DAMAGE IS A FAMILY AFFAIR 121

PROBLEMS ASSOCIATED WITH SPECIFIC FAMILY RELATIONSHIPS

Families of brain-damaged patients typically experience at least some social

problems involving isolation, loss of emotional supports, restricted indepen-
dence, and financial strain, as well as psychological experiences of bewilder-
ment, frustration, guilt, and depression. In addition to this awesome catalogue
of psychosocial burdens are specific problems associated with particular family
relationships.

The experience of being the patient’s parent

Although parental stresses differ somewhat according to whether the patient
was a minor child or an independent adult when he or she became neurologi-
cally impaired, the core problems are the same when brain damage renders the
child socially dependent. Not least of these is dashed hopes along with the
depressing realization that responsibility for the care and well-being of that
child will terminate only with death, that they will never have freedom in their
later years to enjoy their retirement, to move about as they will, to have
uninterrupted privacy and independence. When the brain damaged child is in
the home, the caretaker--usually the mother--is likely to become the focus of
competition between the injured child on the one hand and the other parent and
other children for her attention. Frequently marital conflict results as parents
disagree over who is to care for the child and how, and the (usually) father feels
neglected by the exhausted mother who copes with the child all day. Thus it is
not unusual for marriages to dissolve within a year or two following onset of
significant brain impairment in a child.
Significant brain damage in a minor child tends to arrest the normal evolution
of the family as the parents settle in to care for a perpetually dependent family
member and thus are unable to participate fully in the gradual moves to
independence of their other children. Older parents, whose successful survival
of their children’s adolescent turmoil had been rewarded by freedom from
family responsibilities and the financial burdens of raising children, now find
themselves trapped physically and financially by the needs of their dependent
adult child who not infrequently rekindles all the old adolescent conflicts that
can no longer be resolved.

The experience of being the patient’s minor child or sibling

For most children, brain impairment in a parent or sibling typically brings a
sharp reduction in parental attention, an equally sharp increase in responsibili-
ties, and uncomprehended shame and guilt which ultimately is compounded by
frustration and anger at having a “different” family, at being ashamed or unable
to bring friends home, at not participating in school or community activities
requiring a parent because that parent is occupied with the patient’s care, and at
the absence of parties or picnics and other kinds of good times the family had
previously enjoyed. When the father is the patient, young children tend to get
122 MURIEL D. LEZAK

the brunt of his frustrations and anger and become the target of his competition
for the mother’s attention. Older children and teenagers who have more
freedom of movement are likely to avoid the father’s belittling and bullying by
running away, delinquency and truancy, dropping out of school or getting
pregnant.

The experience of being the patient’s spouse

When husbands or wives in a good marriage sustain significant brain damage,
their spouses lose their chief companion and source of emotional support and
affection at the very time that he or she is most needed. Healthy spouses’ feelings
of responsibility and gratitude for the past relationship coupled with guilt and
fears of social rejection make it very difficult for them to consider divorce
although the patient’s psychological impairments preclude the reestablishment
of anything like a normal marital relationship. Compounding the emotional
problems of these spouses is the social impermissibilityof mourning the loss of
their loved one: although the person loved by the spouse has vanished, custom
allows us to mourn only when the body is dead. When the marriage has been
unsatisfactory, brain damage in one of the partners often prolongs it because the
healthy spouse fears that divorce will bring guilt and social rejection.
Regardless of the quality of the marriage premorbidly, problems shared by
most spouses include deteriorated sexual relations between the spouses, most
frequently because the patient’s libido is diminished or absent, but also when
the arousable patient has lost the empathic sensitivity necessary to make sex
mutually satisfying.The healthy spouses are typically cut off from opportunities
to meet and enjoy the companionship of others because they have no place in
society: being neither able to participate in social activities with married couples
nor being single, they are truly in a social limbo. The spouse, who almost
inevitably becomes the caretaker, usually also becomes the bewildered target of
the patient’s anger, fears, and frustrations and as such, may take a lot of verbal
and even physical abuse. And in addition to all this is the need to take on most if
not all those household and family responsibilitiesthat had been in the patient’s
domain, the responsibility for submitting pension and benefit claims which
often require a great deal of time and busy work, and the problems of coping
with a greatly increased workload and often many additional expenses at a time
that the family income has been drastically reduced. It is little wonder that
depression is endemic.
In understanding what happens within the family, it is important to realize
that almost any enduring behavioral alteration creates problems for a family
accustomed to a person they knew and loved in this body with this face whose
behavior is unexpectedly different, although face, body, tone of voice, and much
more remain familiar. Reintegrating the different person into the family
requires that each family members’ old reaction patterns, affections, and
expectations of the patient dissolve so that new, more realistic perceptions and
understandings can take their place. Such dissolution and reintegration may
 BRAIN DAMAGE IS A FAMILY AFFAIR 123

take years or never occur at all.

Families who continue to treat significantly changed patients as they
remember them encounter frustrations, misunderstandings, and disappoint-
ments at every point of contact. Families who make the transition to more
appropriate relationships with the brain-damaged patient must go through the
painful process of relinquishing old habits of thinking about and dealing with
the person the patient was while developing new percepts and reaction patterns
that are almost inevitably less flattering, less pleasurable, and less hopeful.
Complicating this process is the likelihood that the emotional evolution for
each family member proceeds at a different pace. Moreover, as this evolutionary
process takes place, misunderstandings arise between family members as their
old network of roles and response patterns gives way to redefinitions of roles
and relationships made necessary by the patient’s reduced competencies and
altered family status. A few families become strengthened by these vicissitudes.
Some fall apart. Most hobble along, crippled and in pain, their problems
unrecognized and unending.

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