| Understanding
Denial
When mental illness first strikes,
family members may deny the person has a continuing
illness. During the acute episode family members
will be alarmed by what is happening to their loved
one. When the episode is over and the family member
returns home, everyone will feel a tremendous sense
of relief. All involved want to put this painful
time in the past and focus on the future. Many times,
particularly when the illness is a new phenomenon
in the family, everyone may believe that since the
person is now doing very well that symptomatic behavior
will never return. They may also look for other
answers, hoping that the symptoms were caused by
some other physical problem or external stressors
that can be removed. For example, some families
move thinking that a "fresh start" in
a new environment will alleviate the problem.
Sometimes, even after some family
members do understand the reality of the illness,
others do not. Those who do accept the truth find
that they must protect the ill person from those
who do not and who blame and denigrate the ill person
for unacceptable behavior and lack of achievement.
Obviously, this leads to tension within the family,
and isolation and loss of meaningful relationships
with those who are not supportive of the ill person.
Families may also have little
knowledge about mental illness. They may believe
that it is a condition that is totally disabling.
This is not so. However, it is difficult to know
where to turn to get information. Without information
to help families learn to cope with mental illness,
families can become very pessimistic about the future.
The illness seems to control their destiny rather
than the family, including the ill member, gaining
control by learning how to manage the illness and
to plan for the future. It is imperative that the
family find sources of information that help them
to understand how the illness affects the person.
They need to know that with medication, psychotherapy
or a combination of both, the majority of people
do return to a normal life style. It is also imperative
that the family finds sources of support for themselves.
In both cases, clergy can play a critical role in
identifying resources in the community that can
help the family build the knowledge base that will
give them the tools to assist their loved one and
themselves.
Understanding Stigma
Even when all members of the family
have the knowledge to deal with mental illness,
the family is often reluctant to discuss their family
member with others because they do not know how
people will react. After all, myths and misconception
surround mental illness. For many, even their closest
friends may not understand. For example, the sister
of a young man with schizophrenia pointed out that
when a friend's brother had cancer, all his friends
were supportive and understanding. But, when she
told a few, close friends that her brother has paranoid
schizophrenia, they said little and implied that
something must be very wrong in her family to cause
this illness. Family members may become reluctant
to invite anyone to the home because the ill person
can be unpredictable or is unable to handle the
disruption and heightened stimulation of a number
of people in the house. Furthermore, family members
may be anxious about leaving the ill person at home
alone. They are concerned about what can happen.
The result is they go out separately or not at all.
The result of the stigma in so
many areas of daily life is that the family becomes
more and more withdrawn. When others do not accept
the reality of mental illness, families have little
choice but to withdraw from previous relationships
both to protect themselves and their loved one.
They are unwilling to take any more risks of being
hurt and rejected. Not surprisingly, all of this
can lead to withdrawal from actively participating
in the life of the congregation and to a crisis
in faith. In this situation a pastor can be tremendously
helpful by reaching out to the family and by working
to create an atmosphere of acceptance and hospitality
within the congregation for the family and the person
who is ill. A consumer describes how his priest
has helped this to happen in his congregation.
St. Peter's has established
a health ministry. One of the charges of the health
ministry was to establish a mental health subcommittee.
One of its responsibilities is to continually bring
to the congregation, through the Sunday bulletins,
items about mental illness. We also put books in
the library and a poster about support groups on
the bulletin board. We let people know that others
are up front about this. So, maybe they will come
out of the closet and ask for the help they need
from those of us who deal with this every day.
Understanding Frustration,
Helplessness and Anxiety
It is difficult for anyone to
deal with strange thinking and bizarre and unpredictable
behavior. Imagine what it must be for families of
people with mental illness. It is bewildering, frightening
and exhausting. Even when the person is stabilized
on medication, the apathy and lack of motivation
can be frustrating. A mother mentions how her daughter,
when asked to put her clothes in the closet, looked
at the freshly pressed blouses for over an hour
before making a move to hang them up. What was a
matter of routine for this young woman in the past,
now seemed to take an inordinate amount of time.
Even though the parent knew it was not so, she had
to fight the feeling that her daughter was deliberately
not doing this one, small task.
Another parent described how her
son would no longer come out of his trailer home
to get food to make a meal. So, she became a delivery
service. She brought food to the trailer, left it
outside and hoped her son would open the door and
take the food. He only did so after she left, because
he did not want to speak with her, as he believed
that if he spoke to her, aliens would "zap"
her and she would become one of "them"
This went on for eighteen months, until his situation
deteriorated to a point where he was deemed a "danger
to himself and others," and was hospitalized.
The ongoing pressure and dismay for this mother
was a burden that took a terrible toll on her as
she coped the best she could with a very disturbed
son and a mental health system that did not view
her son as so ill that he could access treatment.
This parent went from agency to agency and from
advocacy group to advocacy group seeking help for
her son. In time, that help came. But, during those
eighteen months of anguish, she lost weight, slept
fitfully and had crying bouts at work.
Family members may have trouble
understanding any difficulties the person is having,
or they may tell themselves that the person will
"snap out of it" if given time, support
and encouragement. Families may become angry and
frustrated as they struggle to get back to a routine
that previously they have taken for granted. How
much easier to believe everything will go on as
before, rather than to focus on the changes and
adjustments the person and the family must make.
This behavior often results in the family going
from crisis to crisis, without any plan to deal
with the situation. They become more and more frustrated
and bewildered because both the ill person and the
family have no control and no understanding of what
is happening.
Obviously such constant stress
and concern can create serious family problems.
Family life can be unsettled and unpredictable.
It becomes very difficult, often impossible, to
plan for family outings or vacations or to have
even the simplest gathering at home. The needs of
the ill member become paramount. At the same time
there remain the needs of other family members and
the usual problems of everyday life. For siblings
this can be very painful. It appears that their
needs, their time to have the focus on them, are
put off or ignored. In some cases the parents disagree
on what should be done or find that caring for the
ill person leaves them too exhausted to give much
attention to their partner. This very draining experience
can create an atmosphere of confusion and resentment,
which can result in irreparable damage to the family.
A pastor can be very helpful in
working with the family to deal with frustration,
helplessness and anxiety by giving each family member
a place to share his/her distress without feeling
guilty or disloyal. The pastor can also be most
supportive by remembering the person who is ill
in the prayer life of the congregation, in keeping
in contact with the person and the family, and by
encouraging others to do the same. The pastor, by
learning about mental illness and community resources
and by making a referral, can be a catalyst for
the family to learn ways to work with the person
who is ill and to identify resources for their loved
one and themselves
Understanding Exhaustion
and Burnout
Often families become worn out
and discouraged dealing with a loved one who has
a mental illness. Having gone down many dead-end
streets in an attempt to find assistance, they may
be hesitant to try another approach for fear of
another failure. They may begin to feel unable to
cope with living with an ill person who must be
constantly cared for. Hopefully they can develop
a plan to allow each family member to take responsibility
for different tasks and/or to trade off times of
primary responsibility. But often, they feel trapped
and exhausted by the stress of the daily struggle,
especially if there is only one family member. Members
of the congregation can alleviate the situation
by offering to assist the family with some of the
care responsibilities. This may mean taking the
person out for a drive, getting the person to an
appointment, bringing in a meal, offering to spend
time with the person to relieve the family, etc.
Families may feel completely out
of control. They may be at their wit's end, believing
that it is impossible to predict what will happen
from day to day. This may happen because the ill
person has had no limits set on his/her behavior.
The person may rule the family as a tyrant who is
demanding, threatening, and refusing all efforts
to help him/her alter unacceptable behavior. This
is especially likely to happen when the ill person
is unable, because of the illness, to understand
the effect of his/her destructive behavior. Families
may say they can no longer stand the abusive behavior,
the threats, the living in constant fear, and the
constant talk of suicide. It is imperative that
the family is referred to a mental health professional,
such as a social worker, and a support group, such
as the Alliance for the Mentally Ill or the Depressive
and Manic Depression Association. These resources
can assist the family in making a plan to manage
a volatile situation and in setting limits. Families
need to be reminded that in the light of all the
pain they see around them, they are bound to feel
helpless at times. They should be able to admit
this without shame. They should know that in caring
and in being there, they are doing something that
is vital for their ill loved one.
Understanding Grief
One of the greatest difficulties
for families in accepting any life altering illness
of a loved one is dealing with a changed future
and expectations. The grief is particularly acute
for families where a loved one has a mental illness.
This illness impairs the person's ability to function
and participate in the normal activities of daily
life, and that impairment can be ongoing. Families
struggle with accepting the realities of an illness
that is treatable, but not curable.
Imagine how it must feel watching
others finish their education, get jobs, and have
families while your child is struggling to obtain
a G.E.D., barely holding on in a supported living
arrangement, and having lost his friends, one by
one, as their lives have less and less in common.
Families grieve for what might have been and find
it difficult to focus on the possibilities that
remain for their loved one. Very often they see
the person as having substantially diminished potential
rather than as having a changed potential. Without
a caring place, without someone to be with them
through this grief process, they may never come
to accept the illness. Of course the pain may never
go away. But, working through their grief allows
them to accept what has happened and to move on.
In these situations a pastor can be a supportive
listener who understands the need for this process
and the presence of someone to help.
Families may ask why mental illness
has struck this family. They need to know that,
just as with any serious illness, there may be no
good answer. It is no one's fault, it is simply
an illness that has struck just as cancer, diabetes,
or heart disease can strike. In this situation,
the pastor can assist the family to turn their questioning
toward learning about the illness and how to handle
it. The added assistance of a support group, such
as the Alliance for the Mentally Ill or the Depressive
and Manic Depressive Association can be most helpful
to the family. They will find others in these groups
who have experienced some of the same problems and
concerns. They will be able to find that they are
not alone, that others have found answers and that
with sufficient resources things can improve for
them just as they have for others.
Family members may find that mental
illness is so devastating that it is hard to bear.
However, just as with multiple sclerosis, diabetes
or a disabling accident that strikes young adults,
the family must guard against pity or placing the
ill person in the role of victim. The entire family,
including the person who is ill, should be encouraged
to look to the future with a plan for dealing with
the illness. Certainly this can be difficult and
time consuming, but it will lead to building on
and strengthening the person's and the family's
assets rather than concentrating on deficits. Again,
a mental health professional and a support group
can be very helpful in assisting with this process.
Understanding the Need
for Personal Time and to Develop Personal Resources
Clergy working with families should
remember that often the family is the first line
of defense for their ill loved one. If family members
deteriorate due to stress and overwork, it can result
in the ill family member having no ongoing support
system. Therefore, families must be reminded that
they should keep themselves physically, mentally
and spiritually healthy. Granted this can be very
difficult when coping with their ill family member.
However, it can be a tremendous relief for families
to realize that their needs should not be ignored.
There may be no one else except the pastor who will
help them to focus on their needs and their concerns.
The pastor should continually remind them that it
is necessary to take time for themselves, despite
the demands of assisting their family member. For
anyone living and/or working with a person who has
a mental illness, one should:
Develop Spiritual Resources:
Understand that feelings of spiritual distress are
a normal reaction to having a family member or friend
struck by a life altering illness. Realize that
other people of faith have feelings of abandonment,
frustration, anger, anxiety, helplessness, isolation
and hopelessness. Develop your spiritual identity
and resources. Seek help from your pastor, a pastoral
counselor, or a therapist who affirms the importance
of spiritual resources. Continue your connectedness
with your faith community.
Avoid placing blame and
guilt: Recognize that you are a loving
family member and/or friend and not a magician.
None of us can change anyone else, we can only be
supportive of ourselves and our loved one as each
of us attempts to find ways to manage mental illness.
Focus on the good things that happened during each
day. Realize that we all have physical and emotional
limits. Do not blame yourself or others if that
limit is reached.
Look for support:
Learn to give support, praise and encouragement
and learn to accept it in return. Use a support
network regularly for empathy, reassurance, affirmation
and refocusing. Attend a support group (see listings
in the "Community Resources" section).
Accept practical, appropriate assistance from educated
family members and friends.
Seek relief from stress:
Find a pleasurable place to go each day. Find a
place where you can be alone. Use it whenever you
need it. Be gentle with yourself. Spend some time
away from the person with mental illness. Avoid
activities that increase your levels of tension.
Inject some humor in your life.
Learn to gain control
of your life: Learn to set limits and to
make choices. Learn to say "no" and mean
it. If you can't say "no," what is your
"yes" worth? Use the expression "I
choose to" rather than "I have to,"
or "I should." Learn to say "I won't"
rather than "can't." Take care of your
own nutritional and sleep needs. Establish short
term and long term goals for yourself. You may find
it helpful to keep a journal.
Continue outside interests: Realize that you should
continue your leisure activities, your church activities,
your relationships with others, your hobbies, etc.
Remember to find times every day, however brief,
to enjoy life. Get plenty of physical exercise.
Learn about the illness:
Learn about resources. Learn what to do if a crisis
occurs.
Understanding the Effect
of Inappropriate Professional Assistance
Many family members have had hurtful
experiences with those in the helping professions.
For example, a pastor who has a son with schizophrenia
had a painful experience when he led an in service
training session at a mental health center. One
staff member stated categorically to the group,
"Families are usually sicker than the patients,"
(Cannon, 1990, 216). This statement was inappropriate
and not based on any accepted theory of causation.
When clergy, from lack of knowledge, also articulate
such myths, the family quite naturally recoils.
This is not atypical because for many years psychotherapy
was based on the mistaken theory that family patterns
caused mental illness. One learned about poor parenting,
pathological families, identified patients in the
family, etc. One particularly destructive theory
was that of the "schizophrenigenic" mother,
and the "ineffectual" father, who both
used parenting skills that caused schizophrenia
in their children. None of these theories are any
longer creditable. However, some are still believed
by people who have not kept abreast of advances
in the field over the last twenty-five years. The
dynamics of what happens in the family when a member
is struck with any life altering illness, including
mental illness, are important. Mental health professionals
and support and advocacy groups have a variety of
tools to use to assist the family in dealing with
what has happened. Referring a family to a mental
health professional and a support and advocacy group
can be very beneficial to them in learning about
mental illness and how to assist the person who
is ill and themselves in managing it.
Facilitating a Referral
Getting the family to a helping
professional or organization is of little value
if they arrive too angry, confused or defensive
to be able to listen or be helped. Family members
who accept the referral out of compliance, or simply
to please the pastor, other family members or friends,
may still be closed to any assistance.
The minister must first foster
an open and trusting relationship. Family members
should be encouraged to share their feelings about
the proposed referral. Objections and any feelings
of rejections can then be identified. The pastor
should make clear why the referral is being made.
And the pastor should emphasize that he/she will
continue to give spiritual support and guidance.
The goal of the referral is not
to force an unwilling person(s) to spend a few minutes
with someone who has expertise. The goal is to help
the person(s) visit an additional source of information
and resources with openness and hopefulness.
Dealing with Objections
The family may be unwilling to
accept the referral because of receiving inappropriate
advice in the past. Listening to the family's prior
experiences, if there are any, with the mental health
system can help clarify objections and make it possible
to work around them. Acknowledge the pain and frustration
this may have caused. But also acknowledge that
a pastor does not have all the technical answers
the family may require or the skills to assist them
in working out some of the problems the family may
be experiencing and that is why they are being referred
to other resources.
Reassurance of Continuity
Reassure the family that
this referral is not a rejection. The pastor will
continue to be there to assist the family with theological
and spiritual issues and to hear of any problems
that they have encountered with other resources.
Affirm that the church is a place that will always
be there to be with the family as they work through
their individual spiritual journeys. Encourage family
members to give feedback about the receptivity and
usefulness of the person, agency or support group.
In this way everyone concerned will be able to evaluate
if the referral has been helpful. If it is not,
assist the family to find more appropriate resources.
How Mental Health Resources Can Assist a Family
Mental health professionals and
support and advocacy groups help a family as they
work through their feelings of loss, confusion,
and concerns about caring for the ill family member.
They can provide information about:
a. the illness, symptoms, prospects for recovery
and suggestions on helping to manage symptomatic
behavior
b. how the brain is affected
c. medications, side effects and how the medication
interacts with other medications
d. written materials, references, sharing, expertise
in problem solving, communication and resources
e. educational opportunities, such as workshops
or lectures
f. planning for the future in terms of finances,
housing, rehabilitation, etc.
Mental health professionals use a number
of approaches in working with families. One is Family
Systems Theory. Murray Bowen, M.D. did the
seminal work in this area. Systems theory can help
people understand what is happening to them both
historically and environmentally. Family systems
look at patterns of behavior in the context of the
family, assessing both its strengths and weaknesses.
Family system theory enables all members of the
family to understand and develop ways of assisting
and supporting each other. Family systems have been
applied to a wide range of issues. For example,
Edwin H. Friedman in his book, Generation to
Generation: Family Process in Church and Synagogue,
applied family systems theory in understanding the
dynamics of congregational life. Necessity to Assess
Treatment Choices and Family Resources
This section is based on information
from Coping with Mental Illness in
the Family: a Family Guide by Agnes B. Hatfield,
Ph.D., which is a National Alliance
for the Mentally Ill (NAMI) Publication. It is an
excellent resource for families who should contact
their local NAMI affiliate to check it out of their
library or purchase it from the national office.
About a fourth of the people who
have a mental illness will have a single episode.
About three fourths will continue to have various
degrees of symptoms over time. This seems to be
true no matter where or how they are treated. Since
treatment and care is costly, it is necessary to
plan for the future. Families who have lived with
mental illness for a long time often describe how,
at the time of the first episode, they sometimes
commit themselves to very expensive treatment in
expectation of a cure that never materialized. Eventually
they found themselves providing for long term care
with severely drained resources.
Before making commitments to any treatment, families
should consider:
a. How much insurance coverage
does the ill person have, should the illness be
long-term? What is the best plan to assure benefits
are available for the required time?
b. If other financial resources
are available to the family, how much should,
in all fairness, be reserved for the needs of
all the members of the family for education, health
care, and retirement options? These are hard choices,
but they must be made or there are regrets later.
c. If a family is considering
a particular type of treatment, they should fully
explore to what extent research can demonstrate
a positive outcome. They should not be swayed
by the enthusiasm of those who provide the treatment.
d. Families should know that
the costliest care is not always the best. Money
will not cure mental illness. Private care is
not necessarily better than public. There are
real limits to the effectiveness of any treatment.
Many people will continue to need medication.
Others may need medication and ongoing assistance
with social and vocational skills. Beyond that
there is no magic that can erase all the effects
of mental illness.
References
Bernheim K. F. and Lehman, A.
F. (1983) Working with Families of the Mentally
Ill, Harper & Row, New York, NY
Cannon, J. (1990) "Pastoral
Care for Families of the Mentally Ill," The
Journal of Pastoral Care, 44 (3), 213-221
Friedman, E. H. (1986) Generation
to Generation: Family Process in Church and Synagogue,
Guilford Press, New York, NY
Germain, C.B. (1991) Human
Behavior in the Social Environment, Columbia
University Press, New York, NY
Hatfield, Agnes B. (1991) Coping
With Mental Illness in the Family: A Family
Guide NAMI Book No. 6, National Alliance for
the Mentally Ill, Arlington, VA.
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