| 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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