Care-Givers & Friends of Survivors

Spouses of Persons With Brain Injuries

Overlooked Victims

By Elizabeth A. Zeigler

Abstract
The cognitive and behavioral sequellae to brain injury pose significant coping problems for the victim's spouse. The resulting (and often permanent)changes in the marital relationship create difficult, painful decisions for thehealthy spouse. !ntervention from a knowledgeable, caring counseling professional can help in the resolution of this complex problem. Mutual support groups have provided unique benefits to spouses in various parts of the country.
Joan and her family (husband Rick and son Jamie) were
enjoying their life. She and Rick were in their mid 20s and
Jamie had just turned three. They enjoyed their jobs, had
recently achieved financial stability, and looked forward to
a promising future. Last May, Rick was involved in an auto
accident and sustained a severe head injury. From that mo-
ment, Joan's life was never the same. She has been living with
the unique dilemma of being married to someone with a
relatively new disability -- brain injury.
Brain injury can be caused by a number of physical pro-
blems: trauma, anoxia, ruptured aneurysm, or brain abscess.
Only in recent years, have many patients been surviving the
initial medical event which produces residual brain damage.
Therefore, the health care system is struggling with a new
disability.
Although the content of this article is pertinent to all forms
of brain injury, special attention will be given to the situa-
tion resulting from traumatic head injury. An estimated
700,000 Americans are victims of head injury each year
(Virginia Head Injury Foundation, no date).
Of all age groups, 15 to 24 year olds had the highest
rate of head injuries. Males had a rate of head injuries
more than twice that of females ... The chief cause of
head injuries was motor vehicle accidents (Anderson,
Miller, & Kalsbeek, 1983, p.475).
When an individual is brain injured, some characteristic
changes occur which seem to persist beyond the recovery
period. Mauss-Clum and Ryan (1981) indicated that these
changes include:
Decreased Memory
Dependency
Depression
Impatience
Decreased ambition/initiative
Irritability
Temper Outbursts
Decreased Ability to Learn from Experience
Decreased Self-Control
Sexual Disinterest/Preoccupation
Self-Centered Behavior
Inappropriate Public Behavior
Inflexibility (p. 167)
The likelihood that significant cognitive and behavioral change will not be accompanied by visible physical disability creates a unique problem -- the injured individual may appear completely normal. Friends, acquaintances, or family members may innocently complicate the situation by expecting too much from the brain injured individual. Because head injury usually affects young males, involved family members tend to be parents. While their numbers are smaller, spouses of brain injured individuals (usually female) represent a significant group of victims who are often overlooked.
Impact of Brain Injury on the Spouse
Typically when one member of a family system is affected by a disabling illness or injury, other members of the family system experience significant changes also. Particularly dramatic changes take place when a spouse is brain injured. Roles within the family are quickly, and often permanently, changed. The injured partner is normally unable to carry out his or her responsibilities and duties. The uninjured spouse frequently must assume singular responsibility for a variety of tasks: household management, parenting, maintenance of an income, visiting and/or caring for the injured spouse, decision making, and dealing with the health care and social service system.

The Importance of Mutual Support for Spouses of Head Injury Survivors

Elizabeth A. Zeigler

In one split second, dramatic changes occur in the life of a
brain injury survivor and his(her family. Traumatic brain injury
typically occurs when young males (ages 15-24) are involved in
motor vehicle accidents (Mderson, Miller, & Kaisbeek, 1983).
The physical, cognitive, and behavioral changes which accom-
pany brain injury present many challenges for family Systems.
When a spouse becomes injured, the changes can be particularly
burdensome.
When couples prepare to join in marriage, very few consider
the possibility of one partner becoming head injured. As they
promise to remain together "for better or for worse, in sickness
and in health" they generally mean physical illness and seldom
envision themselves to face a situation where their partner needs
to be parented or a situation where their partner becomes a
different person.
As we review the effects of head injury on a marriage
partner, it will be obvious that there is a marked difference from
the experience of parents whose child becomes brain injured

Impact of Brain Injury on the Spouse

Dramatic Role Change with
Significantly Increased Responsibility
When a partner becomes brain injured, the healthy spouse
must often assume singular responsibility for a variety of tasks:
household management, parenting, maintenance of an income,
visiting and/or caring for the injured spouse, decision making,
and dealing with the health care and social service systems. Roles
within the farnily system are quickly and often permanently
changed. This Situation is often more distressing than being the
single head of a househol.

Economic Changes
Since the head injury survivor is typically a male, there is a
likelihood that he is the primary breadwinner in the household In
a study completed in Iowa by Dr. William McMordie (1988) the
economic impact of head injury appears to be much more
devastating for spouses than for parents. Parents reported an
average loss of $6,000 annually because of head injury, while
spouses reported an average loss of $18,000 annually. Spouses
were also more likely to borrow money, lose possessions, and
declare bankruptcy (HJF Newsletter, 1988). The uniniured
spouse is often faced with the task of advocating for and/or
managing benefits (i.e., insurance, settlements, entitlement pro-
grams, etc.) which can be a very tiring and discouraging process.
At an already stressful time, the spouse may have to fight huge
bureaucracies to get limited benefits which are desperately
needed.

Arrangements for Care and/or Supervision

When brain injury is accompanied by physical limitations,
the healthy spouse may be called upon to render or arrange for

physical care of the survivor. In addition, the cognitive and
behavioral sequellac of head injury often create a need for
supervision and, at times, "parenting" of the injured individual.
This need for supervision or "parenting" is frequently resented by
the survivor who has little or no awareness of his deficits. The
survivor recalls being an equal partner in the marriage and often
does not understand why the healthy spouse has assumed a
parental-like role. Sustaining a marital relationship under these
circumstances is challenging at best. McLaughlin and Schaffer
(1985) describe the awkwardness of this situation.
"Spouses, on the other hand, find themselves in a
confused role. While they may also vigorously engage
in a caretaking role initially, a full marital relationship
cannot be sustained under these conditions. Indeed, the
spouses role confusion can be intensified if the
patient's parents are present and competing to be care-
takers, a role with which they are more familiar."

Change in the Relationship
Because of the Cognitive and behavioral problems which
commonly result from head injury, the survivor is not the same
individual that the healthy spouse married. As a member of the
Denver Spouses' Support Group described it: "it's like living
with a stranger." (Anonymous, Personal Communication, Febru-
ary, 1985). At the very time that these stressful changes take
place, the uninjured spouse experiences the loss of a partner.
There is an absence of the special warmth and affection that they
shared. There is limited capacity for emotional support from the
survivor. There is often no opportunity for shared decision
making. In research by MaussClum and Ryan (1981), "almost
half the wives identified with the statement, 'I'm married but
don't really have a husband"'.
This alteration in the relationship typically creates changes
in the sexual relationship. "..Previously intimate relationships
become superficial echoes of what they used to be" (McLaughlin
& Schaffer, 1985). Dr. Lezak (1988) attributes this to the injured
spouses' diminished or absent libido or the loss of empathic
sensitivity necessary for mutually satisfying sexual activity. Dr.
McMordie's (1988) study indicated that 70% of the spouses
reported that sexual needs had gone unsatisfied.

Dealing with Unpredictable Behavior
Because survivors can, at times, behave appropriately,
spouses are perplexed by the inconsistency of their behavior. Dr.
Lezak (1988) describes the problems:
"It is important to realize that these problems can be
quite subtle, making it difficult for psychologically
naive and typically unprepared family members to
appreciate what it is in the patient's 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.
...The chameleon-like character presented by some
patients creates additional problems for family mem-
hers 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."
In fact, survivors frequently save their worst behavior for their
spouses. Since survivors can behave appropriately part of the
time, many spouses conclude that they are part of the problem or
that they are going crazy.

Coping Issues

Dealing with the Burden of Reponsibility
The awesome demands on the healthy spouse can be very
overwhelming. He/she must prioritize tasks and handle as much
as possible without becoming totally exhausted. As Lisa Barker
(founder of CONNECt, 1988) describes it:
"Someone is now dependent on her, needs help, and is
no longer able to help her. She has to get or hold a job;
if there are kids, figure out how to make life as normal
as possible for the children; and-sometimes the most
difficult of all-deal with the in-laws. And there's no
one to help you, to hold you, to offer advice, to tell you
it's going to be OK."

Dealing with a New Role as Caretaker for Your Partner
When most couples approach marriage, they don't envision
themselves ever having to be a caretaker in the sense that brain
injury requires. Caring for a physically disabled partner who
remains the same person is qualitatively different from parenting
a survivor who is in essence a stranger. Frequently, friends,
relatives, and professionals do not understand this concept,
Some spouses who accept the role of caretaker and relin-
quish the previous role of equal partner in a marriage experience
relief and can find ways to develop a meaningful life. Muriel
Lezak (1986) describes this process:
"Emotional detachment may free caretakers from de-
bilitating anger, guilt, or concern about propriety, and
allow the family to rebuild a meaningful life. Family
members may not experience a change in what they do
as much as a reorientation that can give them some
peace and emotional liberation. However...the spouse

who almost inevitably becomes the caretaker, usually
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" (Lezak, 1988).
Thus, the task of coping with the role of caretaker is a lonely and
challenging one.

Dealing with the changes in the Sexual Relationship
A spouse who was interviewed as part of a New Medico
research project (1988) described this coping dilemma:
"Let's face it, sex is a real big issue with couples. We
have no sex life, and there's no interest on his part- ...It
has improved. ...now at least he will hug me or kiss me
or hold me, something like that but not actually sex."
Dealing with these issues is sensitive because it can be associated
with an individual's values and religious beliefs. Some spouses
are accepting of the idea of training affectionate behavior in the
survivor. Other spouses reject anything but genuine, spontane-
ous affection from their mate. Statements like "I love you and I
need you are not interpreted as loving but as validation of the
survivor's dependency. Survivors with heightened libido pose
problems for healthy spouses who have lost interest in a sexual
relationship. Often these survivors no longer have an ability to
engage in mutually satisfying sexual activity.

Cognitive Rehabilitation - May/June 1989

Living in a Social Limbo
The uninjured spouse's situation is described well by Dr.
Lezak (1988):
"The healthy spouses are typically cut off from oppor-
tunities 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."
Healthy spouses frequently avoid gatherings with couples they
socialized with before the injury. Often the healthy spouse is
reluctant to socialize with the survivor because of unpredictable
behavior which can be embarrassing. Friends tend to disappear
over time. This social dilemma creates isolation when loneliness
is already a problem.

Dealing with a Changed Marriage Partner
The tragedy of brain injury for the spouse is the essential loss
of his/her marriage partner. A spouse in Denver described it this
way: "I'm a married widow... I used to have a husband and seven
children, now I have eight children." (Anonyrnous, Personal
Communication, February, 1985). At the very time that the
healthy spouse needs a supportive and caring mate, there is no
one to provide the nurturance and reassurance which a mariage
partner would normally offer. This loss produces a lot of feelings.
"Besides loneliness, women feel anger - anger at what hap-
pened, anger at what you now have to go through - so much so
that you may hate your husband and wish that he had died, and
then you feel guilty for those feelings and for not thinking you can
handle it" (Barker, 1988).
The essential loss of a partner must be mourned by the healthy
spouse. The process is, however, not easy.
"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 ...Compounding the
emotional problems of these spouses is the social impermissibil-
ity of 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" (Lezak, 1988).
This need to grieve is often misunderstood by family and friends.
The conclusion of this mourning process may take two
forms: mobilization to leave the marriage, or to remain available
as a caretaker. Spouses frequently discover a feeling of entrap-
ment when considering the option of leaving the marriage. He/
she may be faced with the reality that there is no one to care for
the injured partner. The guilt feelings which often accompany
this consideration can be enhanced by friends and family (par-
ticularly in-laws) who expect persistence "for better or for worse,
in sickness and in health!" During this difficult time a spouse
may have problems finding friends or professionals who under-,
stand his/her dilemma In addition, some spouses who decide to
leave the marriage feel it necessary to continue in a caretaking
capacity for their ex-spouses.
When coping issues of spouses were compared to that of
parents in Dr. McMordie's study (1988) in Iowa, "spouses
experienced the greatest amount of difficulty in almost all the
areas addressed."

Developed health problems
Spouses 72%
Parents 51%

Depression
Spouses 94%
Parents 82%

Feeling trapped

Spouses 90%
Parents 74%

Increased stress
Spouses 100%
Parents 92%

In summary, when brain injury strikes a marriage partner, the
healthy spouse must deal with the ensuing loneliness, sadness,
and anger while struggling with the demanding task of caring for
the survivor.

Mutual Support as a Coping Tool

Since the effect of a brain injury on a spouse is significantly
different than the effect on parents, mutual support can be a very
helpful coping tool. Head injury family support groups fre-
quently address the issues faced by parents and survivors leaving
spouses with a desire to speak with someone dealing with their
unique collection of problems. Lisa Barker (founder of CON-
NECT) describes the need for involvement with other spouses:
"The only way you can cope with it is to talk with
someone who understands, has experienced the same
thing, and knows just what the situation is, so that all you
have to do sometimes is just say a few words and the
other person knows exactly what you're talking about
without going into all the details" (1988).
Since spouses whose partners are brain injured have consistently
had difficulty finding family members, friends, or professionals
who understand their unique dilemmas, they are usually relieved
to discover the availability of a mutual support group.
However, the timing of involvement in peer support groups
needs to be handled carefully. Spouses who still need the
protection of denial would find most spouse support groups very
negative. For the first twelve to twenty-four months after the
injury, the spouse would probably benefit more from carefuily
selected one-to-one contact with another spouse. In order to
handle a mutual support group, the spouse would need to be
comfortable hearing about the problems which still exist many
years down the road.

Emergence of Spouse Support Groups
A survey was done in August and September 1988 to
determine where spouse support groups existed. An effort was
made to reach the Head Injury Foundation in each of the fifty
states and the District of Columbia. Information was gathered
from forty-five states and Washington, D.C.. No support groups,
specifically for spouses, were reported in thirty-four states and
the District of Columbia. Spouse support groups are active in
eight states: Arizona, Colorado, Michigan, Minnesota, New
York, Texas, Virginia, and Washington. Spouse support groups
are being developed in Illinois and Massachusetts. The state of
Connecticut holds a Personal Enrichment Weekend annually
which has a special Section for spouses. There is a group Called
CONNECT which serves as a correspondence and telephone
network for wives with head injured husbands; this group, which
was founded by Lisa Barker, covers the entire country through
the National Head Injury Foundation.
The average size of the groups is six persons. Four of the
groups are composed stricfly of women. The oldest group
(Colorado) was established in 1983. CONNECT was also
established in 1983. Most groups meet monthly.
The format of the groups varies considerably. The groups in
Colorado, Texas, and Washington meet monthly using a discus-
sion format. The group in New York met weekly initially at a
library also using a discussion format. The group in Michigan
meets at members' homes with refreshments; they initially met
at a mental health center with a psychologist facilitating. The
group in Arizona avoids formal meeting rooms and prefers to
gather in members' homes or a restaurant. The group in Virginia
meets in a restaurant and uses a discussion format; the dinner was
initially funded by a donor but is now taken care of by the
participants. Minnesota's group includes a ten week educational
program entitled "How to Claim Your Life While Living with a
Spouse with Brain Damage;" the program utilizes the twelve step
approach of AA and follows up with a "Brain Damage Anon
Group." Connecticut Traumatic Brain Injury Association spon-
sors an annual Personal Enrichment Weekend which has a
special section for spouses; the program includes support groups
and recreational activities. CONNECT provides contact by mail
or telephone between spouses who may live in areas with no
spouse support services.

Summary

Spouses of head injury survivors face particular problens
which are often not addressed in head injury family support
groups. These issues can be effectively dealt with in mutual
support groups. Since the number of spouses affected by
brain injury is less than the number of parents who are affected,
the availability of spouse support groups is limited. These
groups do seem to be emerging in various parts of the country
utilizing a variety of formats. Where groups are not available
there is a correspondence and telephone nnetwork which can
be of help.