Family-to-FamilyEducation Program

Open Your Mind

NAMI

Compiled and Written by Joyce Burland, Ph.D., National Director

NAMI Family-to-Family Education Program Second Edition ©NAMI, 2001

The Family-to-Family Education Program is sponsored by a charitable contribution from Bristol-Myers Squibb and Otsuka American Pharmaceutical, Inc. Coming together in partnership with NAMI to enhance human life.

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03ei

Table of Contents Nuts and Bolts: Basic elements of organizing a

family education class; the pre-course family visit;

course description; group process Skills for our

model of peer family education; specific leader attributes

that help in teaching family education; principles of help-

ing families through trauma.

Outreach Strategies: Planning for success; local

notice/poster; sample outreach letters; sample

newspaper ads and press coverage; deadline

schedule; strategies for outreach in rural areas (which are

useful in any area).

Technical Timetables and Tasks: Work sched-

ules for Contact Teachers; preparation of local and

state course handouts; sample handout pages;

record keeping tasks; specific tasks for Program Directors

and Teachers.

CLASS 1

Introduction: Special features of the course; learn-

ing about the normative stages of our emotional

reactions to the trauma of mental illness; out

belief system and principles; your goals, for your

family member with: mental illness; understanding

illness symptoms as a “double-edged sword”.

CLASS 2

Schizophrenia. Major Depression, Mania, Schizoaf-

fective Disorder: Diagnostic criteria; characteristic

features of psychotic illnesses; questions and

answers about getting through the critical periods

in mental illness; keeping a Crisis File.

CLASS 3

Mood Disorders, Borderline Personality Disorder,

Anxiety Disorders, Dual Diagnosis: Types and

sub-types of Depression and Bipolar Disorder,

diagnostic criteria for Borderline Personality

Disorder, Panic, Disorder and Obsessive-Compul-

sive Disorder; Co-occurring brain and addictive

disorders; telling our stories.

1

2

3

4Curriculum in Family Education

TABLE OF CONTENTS ii

CLASS 4

Basics about the Brain: Functions of key ‘brain

areas”; research on functional and structural

brain abnormalities in the major mental illnesses;

chemical imbalances in the brain; pathophysiology

of brain cells and neurogenesis; genetic research;

infectious and developmental “second hits” which

may cause mental illness; the biology of recovery:

NAMI Science and Treatment video.

CLASS 5

Problem Solving Skills Workshop: How to define a

problem; sharing our problem statements; solving

the problem; setting limits.

CLASS 6

Medication Review: How medications work; basic

psychopharmacology of the mood disorders;

anxiety disorders and schizophrenia; medication

side effects; key treatment issues; stages of

adherence to medications; early warning signs of

relapse.

CLASS 7

Inside Mental Illness: Understanding the

subjective experience of coping with a brain

disorder; problems in maintaining self-esteem

and positive identity; gaining empathy for the

psychological struggle to protect one’s integrity in

mental illness.

CLASS 8

Communication Skills Workshop: How illness

interferes with the capacity to communicate;

learning to be clear, how to respond when the

topic is loaded; talking to the person behind the

symptoms of mental illness.

CLASS 9

Self-Care: Learning about Family Burden: sharing

in relative groups; handling negative feelings of

anger, entrapment, guilt and -grief; how to balance

our lives.

CLASS 10

The Vision and Potential Recovery: Learning about

key principles of rehabilitation and model

programs of community support; a first-person

account of recovery from a consumer.

CLASS 11

Advocacy: Challenging the Power of Stigma in our

lives; learning how to change the system; meet

and hear from people advocating for change

CLASS 12

Review: Certification ceremony; Party!

567

Course Forms: For teacher’s use only

Glossary: Psychiatric definitions and terms

Bibliography: Using your local library; Reference Lists

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.A

1. One of the important things we are modeling in

Class 1 is “being comfortable” with self-disclosure. Be

sure to take time to think through what you want to

stay in your “self-introduction” on page 1.1. We are

also modeling how to limit the “Saga”: Do not let your-

self go over 2 minute time restriction here.

2. The second main job to do in Class 1 is to draw your

class into the course. This we accomplish through

our hospitality and warmth from the minute people

arrive until the “Thanks and Goodnight!” at the end.

You might want to imagine that you are having this

gatherining in your home, where consideration and

concern for “the guest” would be the order of the day.

3. Be sure in the Warm-up Activity that you don’t lose

time. You need to move through each section of the

class without bogging down in any one place. Keep

the lecture sections going and rev up the energy up

after the break.

Your local Support Group Facilitator will attend the

first half of Class 1 to meet participants and inform

thema bout the Support Group meetings. At the end

of the Warm-Up Activity introductions, you will intro-

duce him/her, which will also take a bit more time.

4. On page 1.16, we urge people to join NAMI. Be sure

to bring your state or affiliate membership forms to

Class 1, and keep them out on the resource table for

the duration of the course.

Anytime, in any class, when you feel is appropriate,

tell your group how valuable NAMI membership is, or

disclose how much it has meant to you, personally,

to be a NAMI member. Don’t wait until Class 11 to

promote membership: Help your class understand

how important this is as you go along.

5. In this new version of the course, class participants

will sometimes have the actual lecture text in their

Class Handouts, so they can easily “follow’ what you

are saying. Your Leader Notes will tell you to cue your

class when this cocurs. In Class 1, the lecture text is

included in Class Handouts 4, 6, and 7.

6. Don’t be concerned if you see the class reading a

handout while you are lecturing. Letting the class fol-

low the lecture this way gives participants relief from

“Just listening” to lecture material.

Regarding the contract: we want everyone to hang

in for the whole course. The contract is clear that

except for emergencies, or essential prior commit-

ments, we want class members to stay together, and

attend every class.

7. If you don’t have a support group in your area, tell

the group you might want to stay together after the

course and start a Supporting Group.

Teaching Notes

CLASS 1: INTRODUCTION TO FAMILY EDUCATION

CLASS 1 1.B

1. Call your local Support Group facilitator early so he

can plan to attend CLass 1. (Also set the date for the

Facilitator to attend the Class 12 Party).

2. You will need to set aside time to put the Class

Notebooks together prior to CLass 1. Each notebook

will contain the Title page, Table of contents, Acknowl-

edgements, Library Access Page, Bibliography and

Glossary.

3. Be sure to prepare: Class handout #5: Support

group information (page 1.21); fill in the correct dates

and names on your Course Schedule (Class handout

#9, page 1.26(; xerox the number o copies of these

Handouts you will need. (Samples of these 2 pages

are included at the back of this section after the Sup-

port Person Job Description, page 1.j.).

4. Get material together for your Resource Table. In

Class 1, you should have NAMI brouchures, yoru af-

filiate brochure, back issues of NAMI Advocate, back

issues of your state newsletters, etc.

5. Time: Get set up early in your class location. Start

promptly no later than 5 minutes after the hour.

Be sure to limit the length of time group members

take during the “Goals” exercise, page 1.11. We

have added a chart here so the class can “seee’ the

4 points. Keep them on track by referring them back

to your chart points. Ask for their help and coopera-

tion, if you need to, so you can finish on time. We want

families attending the courese to be our “partners” in

making the course work.

6. Note that most Agenda titles are now “announced”

in the “Transitions” in the lecture.

Technical Notes

At the end of class, pass around the “Class Sign-Up

Sheet,” so you will haev the name and telephone

numbers of class participants. (Be sure to list your

R/S person as a class member). Add any newcomers

through class 3 to this list. This will be your refer-

ence “calling list.”

It will also be your class “starting list” to compare

with your FInal Class Consensus at Class 12. This will

help us keep track of drop-outs. (The Sign-Up Sheet is

located in the “Course Forms” section of your note-

book.)

8. Each week be sure to post the Our Belief System

and Principles chart you make in Class 1.

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.C

CLASS 1: INTRODUCTION TO FAMILY EDUCATION

Welcome!

Word From Our Sponsors!”: NAMI and our

NAMI state organization

Special Features of the NAMI Family-to-Family

Education Course Curriculum

Our Belief System and Principles

Making a Contract

What are your Goals of Independence,

or Healthy Dependence, For Your

Ill Relative?

Understanding Illness Symptoms as a

“Double-Edged” Sword

Homework Handouts and Housekeeping!

Learning about Feelings: Normative Stages

of Our Emotional Reactions to the Trauma of

Mental Illness

Warm-Up Activity: Class Introductions

1 6

2

3

4

5

3 Essential Dimensions of Serious Brain Disorders

Giving you a Feast of Facts

Developing Emotional Understanding and Insight

Information about Our Local Support Group

Break: 10 Minutes

AGENDA

7

8

9

10

Thanks and Goodnight!

CLASS 1 1.D

3’’ x 5’’ cards and pens

Name tags

Easel with pad; big marking pen

Clock

1.5” course notebooks for participants

Class sign-up sheet

Materials for your resource table

Coffee maker

Coffe cups, napkins, plastic spoons

Decafeinnated coffee

Cream, sugar, sugar substitute

Cookies cakes

MATERIALS NEEDED CHECKLISTINSTRUCTIONS TO LEADERS

1. To prepare ahead and have ready for class 1

Have name tabes labeled and ready; have pens

and 3x5 cards at hand for warm up exercise;

have all 3 charts ready.

Decide which co-leader will pair with a student if

you have an uneven number of course partici-

pants. Be ready to introduce youreslf i you have

an odd count.

Have course notebook slabeled with each per-

son’s name. Have extra notebooks for walk-ins.

Have Class Sign-Up Sheet ready.

2. Arrive early to prepare for meeting place (chairs in a circle or grouped around table), make coffee,

tea, set out cookies, etc.

Have all charts ready.

Put out materials on your Resource Table (State

Newsletter, NAMI Advocate.)

3. Distribute class notebooks, nametags, and class

handouts as participants come.

4. Introduce local support group facilitator

5. At end of class distribute

Homework handouts for reading after Class 1.

Class Handout #9: Course Schedule

Get names/numbers on the Class Sign-Up Sheet

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e

CLASS 1: INTRODUCTION TO FAMILY EDUCATION

Talk about your-

self and your

feelings, not

your ill relatives.

No sagas!

CO1

CO2

I. WelcomeCo-leaders stand at door to greet participants as they enter. Give out class handouts, note-

books and nametags. Start class 5 minutes after the appointed hour.

We want to welcome you to the opening class of The NAMI Family-to-Family

Education Course. We are very excited that this day has finally come and

we can be together, family to family, for this new learning adventure.

Orientation to the meeting space: Directions to phones, rest rooms,

etc. Discuss the duration of each meeting (2 1⁄2 hours with a IO-

minute break for refreshments), and the need for a prompt arrival, so

we can get started on time.

Introduction of both leaders: (Take no more than 2 minutes per)

1. Introduce yourself by name. Tell them briefly why you chose to

train and become a family educator.

2. Establish your “emotional” credentials: Self-disclose about the

most difficult thing you’ve had to deal with regarding mental ill-

ness in your family.

II. Who We Are and What We Do

We want to welcome you to the opening class of The NAMI Family-to-Family

Education Course. We are very excited that this day has finally come and

we can be together, family to family, for this new learning adventure.

NAMI was founded in 1979. Since that time, NAMI has grown into the fore-

most national advocacy organization for persons with brain disorders that

cause mental illness, and their families. Over the years this revolutionary

family and consumer movement has significantly influenced research and

treatment policies made at the highest levels of national government, and

its local affiliates have provided a haven of support and understanding for

thousands of family members seeking to help their loved ones.

Leader Note: direct class to handout #1: NAMI mission.

CO1+2

1.1

CLASS 1 1.2

On your handout NAMI is described ‘as “the nation’s voice on mental ill-

ness.” That’s absolutely right: today it is hard to imagine a world without

NAMI’s vigorous and effective public advocacy. Later hi the course we will

tell you about one of NAMI’s current and most visionary goals, The Cam-

paign for the Mind of America.

The program you are starting today (tonight) is now offered in 46 states,

the District of Columbia, Canada and Mexico to relatives, partners, and

friends of people struggling with mental illness. Over 100,000 people have

graduated from Family-to-Family; it is the

flagship peer education program sponsored by NAMl’s Education, Training

and Peer Support Center. But that’s not all! In addition to this program,

trained consumers are now teaching other consumers in the NAMI

Peer-to-Peer Recovery Course, and are joining with family members to

teach the NAMI Provider Education Program to line staff at public mental

health agencies.

Now, a word about our second sponsor: NAMI ____________________________

is our state alliance, which consists of __________ affiliates across the

state. (Introduce your affiliate here). Our work is closely linked to NAMI’s

advocacy goals, and to the support and empowerment of families. Class

Handout #2 is our NAMI ____________________________________ Mission

Statement. Bringing you this course is a prime example of our commitment

to family education.

Leader Note: If you have special funding sources in your state, be

sure to acknowledge them here.

(Transition:) Now to the next item on our Agenda. We want to tell you about

the special features of the curriculum we will be presenting to you in the 12

weeks of this course.

III. Special Features Of The NAMI Family-To-Family Course Curriculum

Because mental illnesses are disorders of the brain, we need to be ground-

ed in some key concepts, which are fundamental to all illness processes.

We call these basic illness concepts and we will be discussing two of them

in class tonight.

The first concept concerns how to “view” the illness experience. So much

of what we read and hear about dwells only on the medical aspects of seri-

ous illness--how symptoms are treated, what medications work best, etc.

It’s easy to forget that there are other dimensions just as crucial: serious

and persistent illness affects people’s hopes and dreams, and it occurs in a

social environment, which responds well or badly to their disability.

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NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e

CO/2

We believe there is no way for us to understand the complexities of coping

with serious brain disorders without integrating the medical aspects of our

relatives’ illness with the emotional and social consequences of this expe-

rience. Therefore the course will cast a wide lens, exploring the biological,

psychological and environmental dimensions of brain disorders. To make

this clear, we have organized the topics in the curriculum for you along

these 3 essential dimensions ‘’bio-psycho-social’’ view of illness.

Leader Note: Direct class to Class Handout #3.

Process Note:

Orient the group to the 3 columns, reading only the top line of titles

down the page.

Then read each column down starting with the “Course Focus” and

ending with “Classes.”

Then read “Note” at the bottom and return to the lecture below.

Covering all these topics means that this course will offer a tremendous

wealth of factual information. Don’t worry about getting overwhelmed:

each of you is looking for specific things to fit the circumstances that you

are

personally dealing with. We will provide a “feast of facts,” and you will take

from it the “food for thought” you need most. We trust absolutely that you

will know best what is important for you.

Notice one other thing: The majority of classes in the course relate to

topics in the middle column--to the subjective feelings of family members

and to the lived experience of those who suffer from mental illness. This

emphasis on emotional understanding and insight of our relatives and

of ourselves, is a theme we will return to again and again. And, for our

last class, we will have a Class Party to celebrate the experience we have

shared together.

Leader Note: stop and ask for questions/comments from the class

about the curriculum.

Transition: Let’s turn now to the psychological/emotional dimension (which

we call ‘’Learning About Feelings”), and talk about the normative stages of

our emotional reactions to the trauma of mental illness.

IV. Learning About Feelings: Normative Stages Of Our Emotional Reactions To Trauma

Having a brain disorder strike someone we love in our family is totally

traumatic. It imposes an overwhelming burden of stress and anxiety upon

our lives. Because we are dealing with trauma, we need to learn about the

impact these devastating mental disorders have on our emotions. T

1.3

CLASS 1 1.4

he principle of recognizing and caring about our feelings comes from a

model of family education called Supportive Family Training, developed by

family member professional Sheila LeGacy.

We know we have many reactions to mental illness when it strikes some-

one we love. We rarely get a chance to talk: about these feelings with

people “in the system.” But with other family members we can talk about

our reactions. We can disclose how we feel, how the stress of care and

chronic worry

affects our lives.

From literally thousands of conversations between family members in

support groups, we know we experience intensely painful feelings and

reactions to mental illness, like:

Leader Note: ask participants to suggest some feelings they have

experienced. CO1+2

Process Note:

Write feelings down on pad as people suggest them. Use list below

for “coaching.”

What separates us from a lot of traditional thinking in the mental health

field is this: We believe these reactions “are perfectly normal responses,

given the catastrophes we are trying to adjust to: (Just look at all the

traumatic emotions up on the board)! We believe that we have a right to our

feelings, and that we need to understand and express them. So let’s spend

some time learning about the predictable stages of our emotional reac-

tions to mental illness.

Leader Note: Position Chart #1: “Stages of Emotional Response” so

everyone can see it.

You all recognize that mental illness has had an enormous impact on your

lives. What you may don’t know is that you tend to respond to this trauma

in characteristic and predictable ways. Many family members and family

member professionals have written about this “emotional response cycle”

we all go through. It is such an important aspect of our course that we will

go over it now in some detail.

Denial; Fear; Guilt

Sorrow; Grief

Disruption of family relationships

Exhaustion of spirit and resources

Difficulty accepting the illness

Sleeplessness Shame; Anger; Rage

Isolation

Confusion

Frustration

Depression

Apprehension about the future

Suggest some

of these words

to keep the

process going!

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e

Leader Note: Direct class to handout #4: “Predictable Stages” so

group can follow lecture.

If you will look at your handout, you’ll see there are 9 separate stages of

emotional reactions involved in coming to terms with mental illness in a

family member. We’ve made a chart of this process, which we will be refer-

ring to throughout the course. Let’s go through the 9 emotional responses

first, and then return to the “needs” in each stage.

Leader Note: read the titles and descriptions of the 9 stages of

emotional response from the handout. Return to the lecture below

to read “points.”

There are some important points to emphasize here:

1. None of these stages are “wrong” or “bad.” They are normal

reactions everyone experiences when struggling to cope with

serious illness and trying to deal with critical disruptions in their

lives.

2. This process is ongoing--for most of us it has taken years. The

process is also cyclical; we will start it all over again every time

our relative has a relapse, or suffers a serious setback.

3. Different family members are often at different places in the

cycle, which is why we sometimes have difficulty communicating

with each other and agreeing on what to do.

4. This developmental account is not about expectations. This is

a human process that you do your way. If you know where you are

in it you can be gentler with yourself. We think it offers hope to

see that we do progress through pain and grief to acceptance.

5. As you get to know each other better in this class, you will

begin to recognize these stages and emotional reactions. In this

way, “old timers” help “newcomers”; we inform each other, we

validate our feelings.

Process Note: Ask class, “Do these stages look familiar to you?”

Get class reaction to the “predictable stages” concept.

Final Point: It is vitally important for family members to learn about these

emotional responses because where we are directs us to what we need in

any given stage of the cycle. For example, look at what we need when going

through the hard times of dealing with catastrophe.

Read needs, pointing at chart, Stage 1.

1.5

CLASS 1 1.6

CO1

By stage 2, we are full of emotion and have a different set of needs. We

need to “sound off,” learn to cope, learn all about the illness. Read stage 2

needs, ditto.

And by stage 3, we are getting it together. We need to restore the balance

in our lives; we find purpose in advocacy and action; we help others. As you

go through the NAMI Family-to-Family Education Course you will find the

course material specifically relates to these various levels of family needs.

That is why feelings are at the center of all that we do, and why “learning

about feelings” is a cornerstone of the course.

Transition To Warm-Up Activity: Well, you’ve been sitting for a while and

we want to move you around a bit. It’s time for class introductions, and we

have a special way for you to do this. .

V. Warm-Up Activity

Leader Note: put up chart #2: “topic list”; then read the following

instructions.

1. We will ask you to team up with a person in the class you don’t

know.

2. We want you to do a short interview with each other, talking about

what you’re interested in, what you do, what you like, etc. At the end

of your visit together, we will ask each of you to introduce your part-

ner to the whole group. You’ll have 3 minutes apiece for interviewing

each other.

3. We have only one rule we will ask you to follow: You’re “not allowed”

to talk about your relative who is ill.

4. We’ve posted a Topic List for you to follow. (Leader read topic list

chart.) We want you to say good things about yourself and “crow” a

little; after all, you don’t have to be modest when somebody else is

introducing you!

5. This exercise is not a memory test. If you want to, take notes about

your partner on your card. Also, if you forget anything in your introduc-

tion, your partner can “prompt” you. So, let’s have fun.

6. If you know your neighbor, move to a chair where you can interview

someone you don’t know. I’ll tell you when the first 3-minute interview

is up.

Process Note: when 3 minutes is up, leader tells the pairs to start

the second interview. After the next 3 minutes, the leader announces

time is up.

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.7

CO1

CO1+2

Write bolded

headings on

easel pad as

leader reads

them.

Read bold

print to

indicate that

Handout #6

follows the

lecture.

Ask people to take a minute apiece to introduce their partners.

A word of welcome from the leader, and applause, should come at the

end of each introduction.

Leader Note: At the end of introductions, introduce the support

group facilitator and refer to class handout #5.

Facilitator: take 2-3 minutes to tell about local meetings.

Announce a class break of 10 minutes and refreshments.

Class break: 10 minutes

VI. Our Belief System and Principles CO:1

Now we want you to know about our belief system and principles, about

how we approach this curriculum as a group of family members.

Leader Note: direct class to class handout #6 so group can follow

lecture.

1. We will stay on top of the resources you might need: Throughout

the course, information will be made available to you about the

community services that you are entitled to. We have asked one of

our members to serve as a “Resource/Support Person” for this class

for the duration of the course to help with your questions and offer

support if you are in any kind of quandary or crisis with your mentally

ill relative during this time. I would like you to meet him/her now.

(Introduce resource support person.)

In addition, we consider each of you a valuable resource because of

your own experience dealing with mental health providers. We hope

that you will share these experiences with the group.

2. We have no magic formulas: When times get bad, and we know

there is no cure for serious mental illness, it is natural to look for

“magic answers” to our dilemmas. But there aren’t any. You have

certainly done your very best to deal with the intense and frustrating

problems you are presented with. We can try to learn as much as

possible about brain disorders, and that’s why we’re here.

3. We use empathy as the doorway to understanding; when we actu-

ally can grasp the lived experience of our relative with mental illness,

every aspect of communication and problem solving gets easier for

us. The classes will give you an understanding of what your relative

needs in order to function better in the world-and what can be done

CLASS 1

to encourage improved functioning. As your insight increases, you will

know what you can realistically expect from your family member.

4. We emphasize the “universal aspects” of mental illness; all brain

disorders involve a profound disturbance of the central nervous

system. Many of these illnesses are functionally related, and many

symptoms overlap. It’s important for us to be exposed to the

“universe” of brain disorders to understand better the range of prob-

lems our relative may be dealing with. So, no matter what diagnosis

our own relative has, we can all learn from each other’s experience.

5. We are vigilant “Guilt-Busters”: The blaming of family members is

the single, most devastating event in the lives of families of individu-

als with mental illness. As Ken Terkelson, a leading psychiatrist, has

said, “The thought of having brought harm to a loved family member,

intentionally or unintentionally, consciously or unconsciously, causes

intolerable guilt --and, we might add, pain, shame and stigma. In this

course, we will focus on mental illnesses as biological brain disorders.

We hope you will adopt, and insist upon, this “no-fault” approach.

6. You can’t know what no one has told you: Because of the

widespread convention of confidentiality in the mental health field,

many families remain in the dark for years about the true nature of

their relative’ s illness. As you learn new facts in this course, you may

feel that it is information you “should have known,” or “should have

gotten on your own.” We implore you to remember that you cannot

possibly know what no one has told you. None of us knew any of this

stuff until someone let us in on it!

7. You are the expert: We honor the fact that you are the best judge

of what will work or will not work for your relative. And no one expects

you to become perfect mothers, fathers, siblings, children or spouses

as a result of taking this course. There will be no pressure to follow

suggestions offered in these classes, or for you to share anything

against your will. We want you to learn to trust your own instincts and

take from this course what you find helpful.

8. Be our partners in learning: The NAMI Family-to-Family Education

Course is the first national peer program in America. Thousands of

family member graduates tell us that family members often know

more than the professionals do about coping with mental illness. As

family members we get on-the-job training; all of us have Ph.D.s from

the School of Hard Knocks!

Sometimes we won’t know the answers to your questions, but we’ll

work together to look them up It’s not necessary to know everything:

What’s important is to know how and where to find the information

you need.

1.8

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e

VIII. What Are Your Goals Of Independence/Healthy Dependence For Your Ill Relative?

Leader Note: put up chart 3: “goals”; then read below

We would like you to share your goal of independence for your ill fam-

ily member, to the degree possible for that person.

If someone is not comfortable with “independent” goals, tell us your

goal of “healthy dependence.”

Process Note:

Ask participants to start by:

1. Repeating their name. Ask them to limit introductory

information by telling us only

2. their relative’s name and their relationship

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CO2

In this course we want to build a compassionate learning community,

where we strengthen one another by being in charge of the learning

process.

Leader Note: stop and ask for group questions and comments

about our belief system and principles.

VII. Making a Contract

We would like to make a contract with you. It has three parts:

First: We would like you to agree tonight to come to every class for

the next 12 weeks. These classes build on each other; being together

each time increases trust and continuity. Breaks in attendance affect

our learning and our solidarity as a group.

Second: If you have an emergency and can’t be here, please call and

let us know. (Our phone numbers are on the class schedule we will

be handing out). There is a lot of bonding that goes on as the course

progresses. If you can’t be here, we all want to know that you are O.K.,

or if you have a crisis, how we can help.

Third: We also ask you to agree to keep the personal disclosures

shared in these classes confidential. This is a basic rule of all NAMI

groups, and it makes us feel safe and protected.

How does that sound? Do you feel you can make the contract?

Ask for a show of hands, raising your own.

1.9

CLASS 1 1.10

3. the diagnosis, and

4. the number of years ill. That way we can get around the circle by

closing time.

Keep people focused on the chart topics, so they won’t get into the

“saga of the ill relative.”

You may need to be directive; tell them, just keep to the information we

are asking for on the chart: we will tell our stories in class 3.

Transition: Thank you for sharing your thoughts on your goals for your

family member. Now, onto our final Agenda topic for tonight---understanding

illness symptoms as a “double-edged sword.”

Leader Note: Direct class to handout #7 so group can follow lecture.

IX. Understanding Illness Symptoms As A “Double-Edged Sword”

We want to introduce the second “basic illness concept” which will be

important to us in the course. This one has to do with the way illness

symptoms overtake us and undermine us at the same time, striking us

from two sides like a “double-edged sword.”

For example, let’s take a physical illness we’ve all had. When we come down

with the flu, a host of new, unwanted symptoms (fever, headache, conges-

tion) well up and engulf the healthy self. At the same time, we are drained

by symptoms, which take away personal resources we’ve always depended

upon (energy, will, drive to keep going, etc.).

The more severe the illness, the more our healthy self is overwhelmed and

the more our dependable, resourceful self is diminished Also, we have no

control over the severity of symptoms that attack us, and during the period

we are ill, it’s almost impossible to summon up our dependable responses.

Mental illnesses are no different except that, because they are disorders

of the brain, many symptoms of mental illness are expressed as complex

behaviors. When our loved ones have a brain disorder, a host of unfamiliar,

unwanted behaviors appear that were never part of their personality; at the

same time, many of the resourceful qualities we have always counted on

are taken away.

We want to introduce this concept tonight because, next week, we will

look at the symptoms of 3 major mental illnesses, which can deeply alter

the people we care about. One of the most important insights for family

members to gain is to know which addedbehaviors and diminished

responses occur in their relative’s illness, which may look to be under his/

her control, but are not. This will help us learn how to separate the person

from the illness.

CO2

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.11

CO1X. Homework Handouts and Housekeeping

Every week we will be giving you “Homework Handouts” to read, which will

go in your notebook. Some will address material we have covered in class;

some will introduce material we will cover in the next class. We really en-

courage you to set aside time each week to go over them at home.

We also hope you will read on your own. There is a splendid bibliography

at the back of the course notebook you have. There are also instructions

about how to get these books and articles through your local library. You

will also find a Glossary at the back of your notebook to help with terms,

which may be unfamiliar.

We are also passing around a Class Sign-up Sheet so we will know how to

reach you by phone in case we ever have to reschedule class. It would be

very helpful to know your work number, too, if you have one.

Leader Note: ask for any questions.

“Thanks & goodnight!”

By the end of the course, you will be able to define very clearly how the

“double-edged sword” of illness symptoms pertains to your relative’s ill-

ness. Let’s see if we can picture this basic illness concept, looking at some

symptoms which are common “early warning” signals of brain disorders.

Leader Note: direct class to class handout #8.

Process Note: ask class to look at the two columns.

Focus them on what is “added” to the person in the left column and

what is “taken away” on the right.

Read the heading of the left column. Then read down the text in that

column. Next, read the heading of the right column, and read down

the text in that column.

Ask if they grasp the basic illness concept of the double-edged

sword. Let class discuss this.

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.ECLASS 1

Class Handout #3: Bio-Psycho-Social Dimensions of Serious Mental Illness Covered In the NAMI Family-to-Family Curriculum(Includes Schizophrenia, Major Depression, Bipolar Disorder, Panic Disorder, Obsessive Compulsive Disorder)

Biological/Physical

(Medical Dimension)Science--based knowledge Course Focus: Medical aspects of Illness

Symptoms; Diagnosis

Future course of illness (prognosis )

Acute care in critical periods

Medications and medication side–effects

Adherence to medication

Scientific advances in medications

Early warning signs of relapse

Insight into clinical realities of brain disorders

Best medical strategies to maximize recovery

Current research on brain disorders

(Classes 2, 3, 4, 6)

Psychological/Emotional

(Personal Dimension)Psychology-based knowledge Course Focus: Subjective emotions and feelings The inner experience of brain disorders

Normative family responses to the trauma of mental illness

Social/Occupational

(Rehabilitation Dimension)Recovery-based knowledgeCourse Focus: Self/Renewal Re-entry into Community

Definition and testimonials of recovery

Principles of rehabilitation

Increased self-determina-tion

Problem Solving Skills (Workshop)

Communication Skills (Workshop)

Challenging negative ste-reotypes

Advocacy for better ser-vices and fair policies

(Classes 4, 5, 7, 10, 11, 12)

Telling our stories; validat-ing family strengths

Coping strategies used to protect self esteem in mental illness

Empathetic listening and responding skills

Burdens of different rela-tive roles in the family

Handling anger, frustration, and feelings of entrapment

Coming to terms with "shattered dreams"

Self-care skills; keeping our lives going

Value of peer understanding and support

Maximum personal fulfill-ment and quality of life

Sources of system/commu-nity support Restoration of social ties

Long-term care

NOTE:

These 3 bio-psycho-social dimensions are interdepen-dent:

1) No one dimension can ignore the knowledge base of the other two

2) Focusing on one dimen-sion alone is not sufficient for recover.

(Classes 1, 3, 4, 7, 8, 9, 10, 12)

1.G

Class Handout #5:Local Support Group Info

Our local support group meets on ______________________________________________.

Our meeting is located at ______________________________________________________.

We meet from _________ P.M. to _________ P.M. During this time we will focus entirely on sharing and caring.

The directions to our meetings are as follow.

1) ___________________________________________________________________________

2) ___________________________________________________________________________

3) ___________________________________________________________________________

4) ___________________________________________________________________________

5) ___________________________________________________________________________

6) ___________________________________________________________________________

7) ___________________________________________________________________________

8) ___________________________________________________________________________

For information, call _____________________________________

_____________________________________

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03eCLASS 1

NAMI FAMILY TO FAMILY EDUCATION PROGRAM 2/03e1.J

Class Handout #8: Understanding Symmptoms of Brain Disorder as a Double Edged Sword

Behaviors You Never Saw Before, Which May Be Added to the Person Who is Ill

Behaviors You Always Counted On, Which May Be Taken Away From the Person Who is Ill

Irritability, criticalness, even abusiveness

Unpredictable over-reaction to things

Indifference; inflexible obstinacy

Irrational statements and responses

Obsession with own activities and pursuits; inflated self-concept

Forgetfulness and losing things

Uncontrollable sadness or crying

Rudeness and hostility

Fearfulness and hyper-vigilance

Devastated by peer disapproval

Disinterest in sex, or hyper sexuality

Indecisiveness

Inappropriate and bizarre behaviors

Wish to be withdrawn and isolated

Traumatic changes in a person due to symptoms of brain disorders (mental illnesses)

Ability to focus and concentrate

Insight about what is happening

Pride in appearance and personal hygiene

Capacity for intimacy

Ability to cope with minor problems

Enjoyment of Family, friends, work

Ability to exercise self-control

Optimism, faith, belief in the future

Warmth and thoughtfulness in relationships

Ability to appreciate people and accept their help

Pride in taking responsibility

Ability to express joy

Capacity to see another point of view

Emotional resiliency

Willingness to follow a treatment plan when ill

Traumatic changes in a person due to symptoms of brain disorders (mental illnesses)

Traumatic Losses In A Person Due To Symptoms Of Brain Disorders (Mental Illnesses)

CLASS 1