NAMI Family-to-Family Education Original Text by Erin McLear

F amily-To-Family

Education Program Open Your Mind

Compiled and Written by Joyce Burland, Ph.D., National Director NAMI Family-to-Family Education Program

Second Edition ÂŠNAMI,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.

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TABLE OF CONTENTS, ===============================.~======~===================== L

" NJ.J1$ MiD BOLTS: Basic elements of organizing a fiutlily~on class; the pre-oourse family visit; ooursedescription; group proceSs Sldlls foroorniodelof.,eer family education; ~c leader attributes that help in teaChing fiunily OOUcation;principles of helping families throUgh trauma.

n. '

','OUTimACH S11Va'BOmS: ,:Planning fOt' ~:l~ noti~ Sample outreach letters; sample newspaper ads and'press coverage; deadJine schedule; StJ:ategies for outreach in nn:al areas (which are useful ill any area).

IlL

TECHNICAL TIMETABLES AND TASKS: Worlc' schedules for Contact Teachers; preparation of local and state course handOuts; sample handout pages; record keeping tasks; , specific路tasks for Program Directors and Teachers.

IV.

CURRICULUM IN FAMILY EDUCATION: CLASS 1:

Introduction: Special featu1'e$~.of the cOurse; leaming about the nonnative stages of our emotional reactions to the trauma. of inentalillness; out belief system and principles; your goals, for :your family ~ember Witb: mental . illness; ~ding illness symptoms as' a "double-ed8ed sWord" .

CLASS'2:

Schizophrenia. M!jor Depression.. Mania. Scbizoaffective Disorder. Diagnostic criteria; characteristic features o'f 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 ofDepJ:ession and Bipolar Disorder, diagnostic criteria for Borderline Personality Disorde~ Pani~ Disorder and Obsessive--Compulsive Disorder; Co-occuning brain and addictive disorders; telling our stories.

CLASS 4:

,Basics About the Brain: Functions of key 'brain areas; researcn on functional and structural brain abnormalities in the major mental illnesses; chemical imbalances in the brain; pathophysiology of brain cells ~d neurogenesis; genetic research; infectious and developmental "seCond hits" which may cause mental illness; the biology of recovery: NAMI Science and Treatment video.

NAMI fAMILY路TO-FAMILY EDUCATION PROGRAM 11102

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. CLASS 5:

Problem SOIyui'g,-&iUs WOdcshO,p:' How to define a problem; shariD.g our problem statemen1s; solving Cb.e ~lem; setting limits.

CLASS 6:

Medication Review; How medications worlc; basic psychopharmacology of the moOd disonler;J; anxiety. ~ and scbizophreni$; medication si& . effects;·key treatment. issue$; Stages of adherenCe to·mediCations; early warning sip ofrehipse. .

CLA§S7:

Inside Mental Plness: Understanding the subjective experience of coping with a brain disorder; problems in maintaining self.m.eem and positive identity; gaining anpadJ.y for the psychQlogical struggle to. protect ones

intej¢ty. in mCn1al iUMM.

CLASS 8:

Commugication Skills WorhhW: How illness interferes with the capacity to cOmmunicate; learning to be clear, how to respond when the topic 1$ loaded; talking to the perSon behind the symptoms of mental illness.

'bAsS9:·

Self-care: I.earning abOlit" familY buitlen;. sharing, in.relative groUPS; handling negative feelings of anger, entrapment, guilt and -grief; how to balance our lives. The Vision· and Potential of RecoYery: Learning about key principles of rehabilitation and model programs of community support; a fust-person

CLASS 10:

account·of recovery from·a consum~ gw,::st ~.

CLASS 11: AdVocacy;· aianeoging the power of stigma in our lives; learning how to .cbaDge the system; meetand·hear·ftom people advocating for change.

CLASS 12:

COURSE FORMS: For teachers' use only

sn .~ . .' QLOSSARY', :

vn.

Review. Sharing and Evaluation: Certification ceremony; Party!

...

PQ chiatri.'•c tenns .and definitions .

BmUOGRAPHY:

Using your loca1library; Reference Lists

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NAMl PAMILy,TO-fAMILY

EDUCATION PROOlI.AM 11m

================================+================================ CLASS 1: INTRODUCTION TO FAMILY EDUCATION

=================================+================================= TEACIllNG NOTES

"1.

2.路

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 say in your "self-introduction" on page 1.1. We are also modeling how to limit the "Saga": Do not let yourselves go over the 2 minute time restriction here. 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 gatheiing in your home, where consideration and concern for "the guest" . would be the order of the day. 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 anyone 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 infonn them about the Support Group meetings. At the end of the Wann-up Activity introductions, you will introduce himlher, which will also t3ke a bit more time.

On page 1.16, we urge peopleto join NAMI. Be sure to bring your state or affiliate membership forms to Class 1, and keep iliem out on the resource table for the duration of the coUrse. Anytime, in any class, when you feel it 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.

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NAMI FAWLY路TO路FAMILY EDUCATION PROGRAM 2J03e

In this new version of the course, class participants will sometimes have the actual lectme text in their Class Haitdouts, so they can easily "follow" what you are saying. Your Leader Notes will tell you to cue your class when this occurs. In Class I, the lecture text is included in Class Handouts 4, 6 and 7.

Don't be concerned if you see the class reading a handout while you are lecturing. Letting the class follow the .lecture this way gives participants relief from 'lust listening" to lecture material. 6.

Regarding the contract: We want everyone to hang in for the whole course. The contract is clear that except for emergencies, or essential prior commitments, we want class members to stay together, and attend every class.

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 Support Group.

TECHNICAL NOTES 1.

Call your local Support Group facilitator early so slhe can plan to attend Class I. (Also, set the date for the Facilitator to atten~the Class 12 party).

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, Acknowledgements, Library Access Page, Bibliography and Glossary.

Be sure to prepare: Class Handout #5: Sypport Group Information (Pcme 1.21); fill in the correct dates and names on your ~urse Schedule (Class Handout #9, Page 126); xerox the number of copies of these Handouts you will need. (Samples of these 2 pages are included at the back of this section after the Support Person Job Description, page Ij.).

Get material together for your Resource Table. In Class 1 you should have NAMI brochures, your affiliate brochure, back issues of NAMl Advocate, back issues of your state newsletters, etc.

TIME: Get set up early in your class location. Startprompdy, 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 "see" the 4 points. Keep ili.e.m on track by referring them back to the chart points. ASk for their help and cooperation, if you need to, so you can finish on time. We want families attending the course to be our "partners" in making the course work.

Note that most Agenda titles are now "announced" in the Transitions in the lecture.

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NAMI FAMILY-TO-FAMILY EDUCATION PROGRAM 2/03e

At the end of class, pass around the "Class Sign-Up Sheet," so you will have the name and telephone numbers of class participants. (Be sure to list your RJS person as a class member). ADD ANY "NEWCOMERS" lHROUGH CLASS 3 TO lHIS LIST. This will be your reference "calling list."

It will also be your class "starting list" to compare with your Final Class Census 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 notebook.) 8.

Each week be sure to post the Out Belief System and Principles chart you make in Class 1.

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NAMI FAMILY-TO-FAMILY EDUCATIONPROGRAM5~&

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================================+================================ CLASS 1: INTRODUCTION TO THE NAMI FAMILY-TO-FAMILY EDUCATION PROGRAM: AGENDA

================================+================================ I.

WELCOME

II.

"A WORD FROM OUR SPONSORS": NAMI AND OUR NAMI STATE ORGANIZATION

III.

SPECIAL FEATURES OF THE NAMI FAWLY-TO-FAWLY EDUCATION COURSE CURRICULUM 3 Essential Dimensions of Serious Brain Disorders

Giving You "A Feast of Facts" Developing Emotional Understanding and Insight

IV.

LEARNING ABOUT FEELINGS: NORMATIVE STAGES OF EMOtIONAL REACTIONS TO THE TRAUMA OF MENTAL ILLNESS

WARM-UP ACTIVITY: CLASS INIRODUCTIONS INFORMATION ABOUT OUR LOCAL SUPPORT GROUP

OUR

(BREAK: 10 MINUTES)

VI.

OUR BELIEF SYSTEM AND PRINCIPLES

VII.

MAKING A CONTRACT

VITI.

WHAT ARE YOUR GOALS OF INDEPENDENCE, OR HEALTHY DEPENDENCE, FOR YOUR ILL RELATIVE?

IX. UNDERSTANDING SWORD"

ILLNESS

SYMPTOMS

"DOUBLE-EDGED

HOMEWORK HANDOUTS AND HOUSEKEEPING

lHANKS & GOODNIGHT!

l.d

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NAMI FAMILY-TO-FAMILY EDUCAnON PROGRAM Il99c

================================+================================= CLASS 1: INTRODUCTION TO FAMILY EDUCATION

================================+================================= Instructions to Leaders

TO PREPARE AHEAD AND HAVE READY FOR CLASS 1 1. Have name tags labeled and ready; have pens and 3 x 5 cards at hand for wannup exercise; have all 3 charts ready. 2. Decide which Co-leader will pair with a student if you have an uneven number of course participants. Be ready to introduce yourself if you ha~e an odd COWlt.

3. Have course notebooks labeled with each person's name. Have extra notebooks for walk-ins. Have Class Sign-Up Sheet ready. 4. Have all Class Handouts you have prepared (#2. #5, #9) copied.

II.

ARRIVE EARLY TO PREPARE MEETING PLACE (chairs in a circle, or grouped aroWld table), MAKE COFFEE, TEA, SET OUT COOKIES, ETC.

Have all Charts ready. Put out materials on your Resource Table (State Newsletter, Local Newsletter, NAMI Advocate).

ill.

DISTRIBUfE CLASS NOTEBOOKS, NAMETAGS AND CLASS HANDOUTS AS PARTICPANTS COME IN

INTRODUCE LOCAL SUPPORT GROUP FACILITATOR

AT END OF CLASS DISTRIBUTE:

Homework Handouts for reading after Class 1

ClasS-Handout # 9:

Get names and numbers on the Class Si211-Up Sheet-

CQUfse Schedule

I.e

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NAMI FAMILY-TO-FAMILY EDUCATION PROGRAM l/9ge

===============================+=============================== CLASS 1: INTRODUCTION TO FAMILY EDUCATION

=================================+================================= MATERIALS NEEDED CHECKLIST

3" x 5" cards and pens

Name tags

Easel with pad; big markillg pen

Clock

1 112" Course notebooks for participants Class Sign-Up Sheet

Materials for your Resource Table

Coffee Maker Coffee cups, napkins, plastic spoons Coffee (De-caf) Crea.rn, sugar, sugar substitute Cookies, cakes

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NAMI F AMILY-TO-FAMILY

EDUCAnON PROGRAM 5198.

==================================+================================== CLASS 1: INTRODUCTION TO FAMILY EDUCATION

===================================+==================================== (CO-LEADERS STAND AT DOOR TO GREET PARTICIPANTS AS THEY ENTER. GIVE OUT CLASS HANDOUTS, NOTEBOOKS AND NAMETAGS. START CLASS 5 MINUTES AFTER THE APPOINTED HOUR.)

WELCOME

ICO:t I

We want to welcome you to the opening class of The NAMI Familyto-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 Yz hours with a IO-minute break for refreshments), and the need for a prompt anival, so we can get started on time. Introduction of both leaders: (Take no more than 2 minutes per Co-Leader.) !.(.\""" (.1, (\..L-~ tl---l' \--e) <;,

COl goes

first and covers both points. C02 follows immediately.

II.

(\-R-

Introduce yourself by name. Tell them briefly why you chose to train and become a family educator. 1_' i

Pll()llA.~ Le-w)l...;路~I""",:;t;

Talk about yourself and your feelings, not your ill relative .

NO SAGAS! Establish your "emotional" credentials: Self- \ disclose about the most difficult thing you've had to 'I come to tenus with, the hardest thing you've had to cl.-. ' _ deal with regarding mental illness in your family. ~ iIM'Q LA.-1" ~O~(M tt'-'\r.a

WHO WE ARE AND WHAT WE DO

ICO:2 I

We call this part of tonight's program "But First, A Word From Our Sponsors." This course is taking place because of the help of two key organizations: The National Alliance on Mental Illness (NAMI) and our state organization, NAMI ~ Let's take a moment to tell you about eac one.

fJ\{)

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NAMI Family-to-Family Education Program 12/05

NAMI was founded in 1979. Since that time, NAMI has grown into the foremost national advocacy organization for persons with brain disorders that Over the years this cause mental illness, and their families. 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.) On your handout NAMI is described 'as "the nation's voice on mental illness." 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 Campaign 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路, .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.

61 '-

Now, a word about our second sponsor: NAMI Nliqt is our affiliates across the state. state Alliance, which consists of (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 15 our NAMI Mission Statement. Bringing you this course is a prime example of our commitment to family education.

IF YOU HA VE SPECIAL FUNDING SOURCES IN YOUR (LEADER NOTE: 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.

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NAMI Family-to-Family Education Program 12105

III.

SPECIAL FEATURES OF THE NAMI FAMILY-TO-FAMILY COURSE CURRICULUM

Because mental illnesses are disorderS of the brain, we need to be grounded in some key concepts, which are fundamental to all illness processes. We call these basic illness g>ncepts. 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 serious illness--how symptoms are treated, what medicati~ns work best, etc. It's easy to forget that there are other dimensions just as cruci;li: 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. 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 th~ emotional and social consequences of this experience. 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 th~ <;urriculum for you along these 3 essential dimensio~a ''bio-psycho-social'' view of illness..

(LEADER NOTE:

PROCESS NOTE:

DIRECT CLASS TO CLASS HANDOUT #3.)

ORIENT GROup TO TIlE 3 COLIJMNS, • • OF TITLES ACROSS THE PAGE.

THEN. 4.,,,,@ AT BOITOM AND RETURN TO LECfURE BEWW.

Covering all these topics means that this course will offer a tremendous wealth of factual information. Don't worty about 2ettin~ 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 fromit the "food for thought" you need most. We trust absolutely that you will know best what is important for YQlL.

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NAMI FAMILY·TG-FAMIL'i EDUCATIONPROG~5~

Notice one other thing: The majority of classes in the course relate to topics in the middle colwnn--to the subjective feelings of family members and to the lived experience of those who suffer from mental illness. 1bis 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 CLASS ABOUT 1HE CURRICULUM.) ..

(fRA,NSITlON:)

THE

Let's turn now to the psychological/emotional dimension

CO:2 . (which we call ''Learning About Feelings"), and talk about the nOImative stages of

IV.

our emotional reactions to the trnuma of mental illness.

LEARNING ABOUT FEELINGS: NORMATIVE STAGES OF OUR EMOTIONAL REACI'lONS TO TRAUMA

Having a brain disorder strike someone. we love in our.' family. is totallytrawnatic. 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. The 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 someone we love. We rarely get a chance to talk: about these feelings with people "in the system." But with other family members we gm 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 JHEY

HAVE EXPERIENCED.) 1.4

NAMI FAMILY-TO-FAMILY

EDUCATION PROGRAM 5198.

YKV\",Jl..,.,,, l"1V 1 Jl..,;

WKlTK IfKKLIN(iL) "UWN UN ..AU AL) "KU"LI!,; SUlj(iI!,;ST

THEM.

USE LIST BELOW FOR "COACHING." Sleeplessness Shame; Anger; Rage Isolation Confusion Frustration Depression Apprehension about the future ""

Denial; Fear; Guilt Sorrow; Grief Disruption of family relationships Exhaustion of spirit and resources Difficulty accepting the illness

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 tJying 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 s.pend some time leamine about the predictable stages of our emotional reactions to mental illness. "'

(LEADER NOTE;

PosmON

CHART

#1:

"STAGES

EMOTIONAL

RESPONSE" SO EVERYONE CAN SEE IT.)

You all recognize that mental illness has had an enormous impact on your lives. What you may DQt know is that you tend to respond to this trauma in characteristic and predictable ways. Many family members familymember professionals have written about this "emoti~nal 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.

and

(LEADER NQTE:

DIRECT CLASS TO CLASS HANDOUT #4: PREDICTABLE SIAGES SO GROUP CAN FOLLOW LECfURE.)

m2.:. Read bold print to indicate that Handout #4 foUows the 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 referring to throughout the course. Let's go through the 9 emotional responses first, and then return to the "needs" in each stage.

1.5

NAMI FAMILY-TO-FAMIlY EDUCATIONPROG~I~

(LEADER NOTE:

READ THE TITLES AND DESCRIPTIONS OF THE 9 STAGES OF EMOTIONAL RESPONSE FROM THE HANDOUT; RETURN TO THE LECTIJRE BELOW TO READ "POINTS.")

There are some important points to emphasize here: L

None of these stages are "wrong" or "bad." They are nonnal reactions everyone experiences when struggling to cope with serious illness and trying 10 deal with critical disruptions in their lives.

This process is ongoing-for most of us it. has taken~. The process is also cyclical; we will start it allover again every time our relative has a relapse, or suffers a serious setback.

Different family members are often at different places in the cycle, which is why we sometimes have difficulty communicating with ~h other and agreeing on what to do.

This developmental account is not about expectations. lbis is a human process that you do your way~ Ifyou]mow where you are in it you can be more gentle with yourself. We think it offers hope to see that we dQ progress through pain and grief to acceptance.

As you get to know each other. better inthis.dass, you.wilLbegin to r:ecognize 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 REACDON STAGES" CONCEPT.

THE "PREDICTABLE

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). 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).

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NAMI f AMILY路TO-FAMIl.. Y EDUCATIONPROG~5~

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.

CO-I •

(TRANSITION TO WARM-UP ACTIVITY:) WeU, 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:

.,1,

PUT UP CHART #2: "TOPIC LIST"; THEN READ THE FOLLOWING INSTRUCTIONS.)

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

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 partner to the whole group. You'll have 3 minutes apiece for interviewing each other.

We have only one rule we will ask you to follow: You're "not allowed" to talk about your relative who is ill.

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!

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 introduction, your partner can "prompt" you. So, let's have fun.

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NAMI FAMILY·TO·FAMILY EDUCAnON PROGRAM 5/98<

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---------~

If you know your neighbor, move toa chair where you can interview someone you don't know. I'll tell you when the first 3-minute interview is !ill.

PROCESS NOTE:

Class Introductions take place here

WHEN 3 MINUTES IS UP, LEADER TELLS THE PAIRS TO START THE SECOND INTERVIEW. AFfER THE NEXT 3 l\fiNUTES, THE LEADER ANNOUNCES TIME IS UP. ASK PEOPLE TO TAKE A MINUTE APIECE TO INTRODUCE THEIR PARTNERS. A WORD OF WELCOME FROM THE LEADER, AND APPLAUSE, . SHOULD COl\1E AT THE END OF EACH INTRODUCTION.

~EF~'fO M#(4( ~SL£1T6t<(LEADER NOTE: Introduce Support Group Leader here

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:l

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.)

1.8

COl: Read bold print to indicate that Handout #6 follows the lecture.

NA1v1l FAMILY-TO-FAMILY EDUCATION PROGRAM 5/980

TOPIC LIST FOR INTRODUCTIONS

Occupation Where you live Something you are especially ~. '. interested in ' Something you are proud of Some favorite hobbies and pastimes

CLASS I: CHART2

NAMI FAMIL짜-TO-FAMIlY

EDUCATIONPROGRAM5N&

~---------

we Will stay on top 01 tne resources ,YOU mlgm neeo: 1nrougnoUl me course, infonnation 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. -tweylEl like yeN te meet RimthtM flew. (RffRODUCE RESOURCEt-路 surroRT PERSON).

. In addition, we consider each of you a valuable resource because of your QW 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 dile~as. 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 gm try to learn as much as possible about brain disorders, and that's why we're here.

We use empathy as the doorway to understanding; When we actually can grasp the lived experience ,.of om 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 to encourage improved functioning. As your insight increases, you will know what you can realistically expect from your family member.

We empbasize the "universal aspects" of mental illness; All brain disorders involve a profmmd 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 problems our relative may be dealing with. So, no matter what diagnosis our own relative has, we can all learn from each other's experience.

We are vigilant "Guilt-Busters": The blaming of family members is the single, most devastating event in the lives of families of individuals with mental illness. As Ken Terkelson, a leading psychiatrist, has said, "The thought of having brought hann 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.

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NAMI FAMILY-TO-FAMILY EDUCAnON PROORAM 519&

You can't !mow 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 stuffuntil someone let us in on it!

YOU are the expert~ We honor the fact that you are the best judge of what will work or will not work for your rdative. Arul 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.

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.teUus: that family.' . members<.ofien!:Jm:oW;!moredhan'the professionals do about coping with mental illness. As family members, ~ 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. and loo1,c .them It's ;oot 路necessary,:,todmow,.everything: What's important is to know HOW and WHERE to find the information you need. In this course we want to build a compassionate learning community, where we strengthen one another by being in charge of the lemllng process.

)w...

(LEADER NOTE:

STOP AND ASK FOR GROUP QUESTIONS AND COMMENTS ABOUr OUR BELIEF S楼SlEM AND PRINCIPLES.)

VIL

MAKING A CONTRACT

CO:2

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

We would like you to agree tonight to come to every class for the next 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.

1.10

NAMI FAMILY-TO-FAMD..Y EDUCATIONPROGRNMl~

.,econu;

11 you nave an emergency ana can-t oe nere, please call ana 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)

vm.

WHAT ARE YOUR GOALS OF INDEPENDENCEIHEALTHY DEPENDENCE FOR YOUR ILL RELATIVE?

. (LEAPER: NOTE:

PUT UP CHART 3: "GOALS"; TIffiN READ BELQ)Y)

-We would like you to share your goal of independence for your ill family to the degree possible for that person.

m~inber,

'--

-<l.f,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) THEm

RELATIVE'S NAME AND THEIR RELATIONSHIP, 3) THE DIAGNOSIS, AND 4) THE NUMBER OF YEARS ILL. THAT WAY WE CAN GET AROUND THE CIRCLE BY CLOSING

TIME. KEEPTIDS PROCESS MOVING!

KEEP PEOPLE FOCUSED ON THE CHART TOPICS, SO THEY WON'T GET INTO THE "SAGA OF THE ILL

RELATIVE."

you MAY NEED TO BE DIRECfIVE; TELL THEM, "JUST KEEP TO THE INFORMATION WE ARE ASKING FOR ON THE CHART: WE WILL TELL OUR STORIES IN CLASS ~

1.11

---

NAMI FAMILY -TO-FAMILY EDUCAnoNPROGRAMI~

---------~----------

ITRANSIllON:) 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:

IX.

DIRECT CLASS TO HANDOUT #7 SO GROUP CAN FOLLOW LECfURE.)

Read

bold print to indicate that Handout #7 follows the lecture.

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 lll1dennine 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, lll1wanted symptoms (fever, headache,congestion) well up and engulf the healthy self. At the same time, we are drain~ 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 ~e 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 about. Que of the most important insiehts for family members to gain is to know which added behaviors and diminished responses occur in their relative's illness. which may look to be under hislher control. but are not. This will help us learn how to separate the person from the illness.

care

1.12

NAMI FAMILY.T(}.FAMILY EDUCATION PROGRAM 1199.

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 illness. 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. EOClJS THEM ON WHAT IS "ADDE~" TO THE PERSON IN TIlE LEFf COLUMN AND WHAT IS "TAKEN AWAY" ON THE RIGHT. READ THE HEADING OF THE LEFI 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 TIDS.

x. HOMEWORK HANDOUTS AND HQUSEKEEPING

ICO:. I

Every wee~ 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 encourage you to set aside time each week to go over them at home.

We also bope 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 tenus which may be , unfamiliar.

1.13

NAMI fAMILY-TO-FAMIlY EDUCAnONPROGRAMI~

We are also passing around a路Class Si~-(Jp 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 nwnber, too, if you have one.

(LEADER NOTE:

ASK FOR ANY QUESTIONS.)

"TIIANKS & GOODNIGHT!"

1.14

NAMI FAMlLY-TO-FAMILY EDUCATION PROGRAM 5191.

------

CLASS 1: CLASS HANDOUTS

................. .01: . . ...,.....,.

••

-""....~.01:

.. .."N ..........

JU. ...

...,XV ... ""'- ....... V

..... ' •.

><"-:"c x><>'_.&

....... " ......... ::,c-:"c.a. · X

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-v

MENTAL ILLNESS COVERED IN THE NAMI FAMILY TO FAMILY CURRICULUM Oncludes Schizophrenia, Major Depression, Bipolar Disorder, Panic Disorder, Obsessive Compulsive Disorder)

BIOLOGICAUPHYSICAL

psYCHOLQGICALlEMOTIONAL

SOCLUJOCCUPATlONAL

(Medical Dimension) Science--based knowledge

(personal Dimension) Psychology-based knowledge

(Rehabilitation Dimension) Recovery-based knowledge

Course Focus: Medical a$Jlects ofRlness

Course Focus: Subjective emotions and feelings

Course Focus: SelflRenewal Re-entry into Community

Symptoms; Diagnosis

The inner experience of brain disorders

Definition and testimonials of recovery

Future cou~e of illness (prognosis).

Normative family responses to tbe trauma of mental illness

Principles of rehabilitation

Acute care in critical periods

Telling our stories; validating family strengths

Sources of system/community support

Medications and medication side--effects

Coping strategies used to protect selfesteem in mental illness

Restoration of social ties Long-term care

Empathetic listening and responding skills

Increased self-determination

Scientific advances in medications

Burdens of different relative roles in tbe family

Maximum personal fulrlllment and quality of life

Early warning signs of relapse

Handling anger, frustration, and feelings of entrapment

Problem Solving Skills (Workshop)

r--.1berence to medication

Communication Skills (Workshop) Insight into clinical realities of brain disorders

Coming to terms with "shattered dreams"

Challenging negative stereotypes

Best medical strategies to maximize recovery

Self-care skills; keeping our lives going

Advocacy for better services and fair policies

Current researcb on brain disorders

Value of peer understanding and support

Celebrating our progress

CLASSES; 2.3.4.6

CLASSES; 1. 3. 4. 7. 8. 9, 10, 12

CLASSES: 4, 5, 8, 10, 11, 12

interd.peDd~nt

These 3 hio-psycho-socia' dimensions are 1) No one dimension can ignore the knowledge base of the other two. 2) Focusing on one dimension alone is not sufficient for recovery. 1.18

NAMI FAMILY-TO-FAMILY

EDUCATION PROGRAM 6N&

CLASS 1: RANDOm # 5: LOCAL SUPPORT GROUP INFORMATION

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 follows:

For information call: Support Group Facilitator

State or local NAMI office

1.21

NAMl FAMlLY路TO-FAMlLY

EDUCAnON PROGRAM 5/980

CLASS 1: CLASS HANDOUT #8: UNDERSTANDING SYMPTOMS OF BRAIN DISORDEi AS A "DOUBLE-EDGED SWORD" BERAVIORS YOU NEVER SAW BEFORE, WHICH MAY BE ADDED TO THE PERSON WHO IS ILL

BERAVIORS YOU ALWAYS COUNTED ON, WHICH MAY BE TAKEN AWAY FROM THE PERSON WHO IS ILL

Constant tension and nervousness

Ability to focus and concentrate

Irritability, criticalness, even abusiveness

Insight about what is happening

Unpredictable over-reaction to things

Pride in appearance and personal hygiene

Indifference; inflexible obstinacy

Capacity for intimacy

Irrational statements and responses

Ability to cope with minor problems

Obsession with own activities and pursuits; inflated self-concept

Enjoyment,ofJamily"friends~ .work Ability to exercise self-control ,,

Forgetfulness and losing things

Optimism, faith, belief in the future

Uncontrollable sadness or crying Warmth and thoughtfulness in relationships Rudeness and hostility Fearfulness and hyper-vigilance

Ability to appreciate people and accept their help

Devastated by peer disapproval

Pride in taking responsibility

Disinterest in sex, or hypersexuality

Ability to express joy

Indecisiveness

Capacity to see another pOint of view

Inappropriate and bizarre behaviors

Emotional resiliency

Wish to be with drawn and isolated

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 DUETOS~TOMSOFBRAIN

DISORDERS (MENTAL ILLNESSES)

1.25

NAMI FAMILY-TO-FAMILY EDUCATIONPROGRAMS~~

---

CLASS 1: CLASS HANDOUT #9

NAMI FAl\flLY-TO-FAl\flLY EDUCATION: CLASS SCHEDULE

DATE

CLASS 1:

lntroduction to family education

CIASS2:

Symptoms of Schizophrenia, Major Depression, Mania, Schizoaffective Disorder; Getting through Critical Periods of Crisis

CLASS 3:

Subtypes of Depression and Bipolar Disorder, Borderline Personality Disorder; Panic Disorder, OCD; Co-occuritig brain and addictive disorders; Telling our stories

CLASS 4:

Basics about brain biology and the causes of brain disorders

CLASS 5:

Problem Solving Workshop

CLASS 6:

Medication Review

CLASS 7:

Empathy: Inside mental illness

CLASS 8:

Communication Skills Workshop

CLASS 9:

Self-care

CLASS 10:

Rehabilitation; Making choices for recovery

CLASS 11:

Fighting Stigma; Advocacy

CLASS 12:

Evaluation, Certification and Celebration

To contact co-leaders, call: (name)

(phone)

(name)

(phone)

(name)

(phone)

Resource/Support Person

1.26

. NAMIFAMILY-TO-FAMILY

EDUCATJON PROGRAM 2103e