Attendees will gain insight and understanding into the unique challenges and needs of families who have a relative with a mental illness from a family system’s perspective. With this knowledge those in attendance will learn ways to help family members to get the knowledge and supports they need to help themselves and their ill relative.

1. Behind Closed Doors: An Inside Look at Families that have a Relative with Mental Illness. Kimmie Jordan, M.S. , CPRP, CLC “Is Anyone Listening?” PSRANM 19th Annual Conference

2. Mental Illness affects the family system in many different aspects: personally, economically, socially, and systemically. “Mental illness is, by its very nature, a familial experience. A single family member may exhibit symptoms, receive a diagnosis, and undergo treatment, but because of the interdependence that exists within a family system, each and every family member is affected in some specific way. “(Kinsella, 1996)

3. The Family’s First Experience With Mental Illness “Almost always, the ill person is taken to medical experts for help and usually placed in a hospital. Examinations are carried out sometimes members of the family are interviewed, medication is prescribed and other treatments may be recommended. After a few days the patient is released. Most often the family has been told nothing.” “In short, the professional staff has ignored the family until it is time for the patient to return home, and then it is assumed that the family will know what to do.” (Johnson, 2005)

4. Possible Disruptions to the Family System Include: Prolonging of early family developments stages, such as the “care of young children stage”, due to required care needed by the family member. Adult children remaining in the home during the normative “empty nest” stage of development. Siblings, spouses or other family members assuming the role of caregiver. (Corring 2002; Stein, 2001; Mannion, 1996)

5. Objective Burden to Families(Readily Verifiable Behavior Phenomena) Financial Stress Disruption of Family Routine Impairment of the health of other family members Social isolation Employment difficulties Family Conflict Possible breakup of the family Culture specific themes (Karp, 1999; Thara 1994; Marsh 1996; Kung, 2003)

6. Subjective Burden to Families(Emotional Reactions) Emotions such as: sorrow, disappointment, resentment, anger, worry, and guilt. Sense of loss of control over their lives Concern for continuity of care Feeling “left out” by other family members Social stigma and rejection Difficulty sleeping Uncertainty for the future (Karp, 1999; Thara 1994; Marsh 1996; Kung 2003)

7. Common experiences of Caregivers Hopelessness Fear and vulnerability Guilt Loss and grief Uncertainty Stigma Dissatisfaction with professional services Piling up of demands Confusion as to whether relative’s behavior is due to illness or personality and circumstances Concerned with their own mortality and continuity of care for ill relative (Stern, 1999, Heru 2000)

8. Stages of Family Recovery Shock/denial/disbelief Recognition/acceptance Coping Personal/political advocacy (Spaniol, Zipple, Marsh, Finley, 2000)

9. Family Resilience Family ”readily recovering from a setback” Hope is a crucial part of the process Types of Resilience Family bonds and commitments Family strengths and resources Family growth and development Family contributions Family gratifications (Bland, 2002; Marsh, 1996, Schwartz, 2002) Family pride over their accomplishments and those of their relative Growth of the family as a unit and of individual family members.

10. Factors Affecting Family Resilience Other stressful events confronting the family, such as unemployment or chronic medical problems Family characteristics, including composition, social class, ethnic group, and religious affiliation; Family strengths, limitations, resources, and coping strategies The meaning of the psychiatric disability for the family The nature and quality of family relationships. (Spaniol, Zipple, Marsh, Finley, 2000)

11. Where are the Cocoa Puffs Book Trailer PresentationMovieshere Are The Cocoa Puffs.flv- Created by Jake Weinheimer

12. How to Help Families Clarify Roles Work as a team Use educational approaches Include families in planning and system monitoring groups Learn to respond to intense feelings Meet local support groups Acknowledge diverse beliefs Point out family strengths Develop your own supports Be clear about your limitations (Spaniol, Zipple, Marsh, Finley, 2000)

13. Family Needs Information Skills Support

14. Family Needs – Information Psychiatric diagnosis Etiology of psychiatric disability Treatment of psychiatric disability Prognosis of psychiatric disability Reasons for an acute decompensation Knowledge of the hospital setting Ideas on how to prevent a relapse Recovery from psychiatric disability Meaning and causes of symptoms Availability of resources and supports Sources of personal stress and burden Family recovery process Availability and utility of family/ consumer self-help/advocacy groups Legal issues, e.g., patient rights, trusts, commitment laws (Spaniol, Zipple, Marsh, Finley, 2000)

15. Family Needs - Skills Survival skills Crisis response skills Negotiating skills Personal stress management skills Symptom/problem behavior management skills Advocacy and organizational skills Educational skills (Spaniol, Zipple, Marsh, Finley, 2000)

16. Family Needs - Supports Listening by other families and professionals Continued involvement with a supportive practitioner Sharing and expression of feelings A role in mental health policy Encouragement to join NAMI A role in NAMI or other family support / advocacy organizations (Spaniol, Zipple, Marsh, Finley, 2000)

17. Practical Concerns for Family Members Bizarre or unusual behavior Violent or aggressive behavior Self-destructive or suicidal behavior Social withdrawal Hygiene and appearance Collaboration with treatment

18. COPING STRATEGIES FOR FAMILIES FORBIZARRE OR UNUSUAL BEHAVIOR Sit down and talk calmly with family member about concerns Be firm, without threats, about behavior that you do not like. Be clear about behaviors that you do like. Remind family member clearly and firmly about what is OK and what is not OK. Confront the unreality of a behavior by telling family member that what he/she is experiencing is not real but a part of the psychiatric disability. Tolerate behaviors that may appear a little different but that are not dangerous or harmful. Avoid physical contact Directly disagree with the paranoia, for example, and refuse to discuss it because it is unreal. Distract family member from his/her behavior by involving him/her in other activities such as a ride in the car. Offer humor or reassurance to allay family member’s fears. Solicit information and support from case manager. Arrange for teaching about symptom management strategies. Coordinate strategies with professional treatment person.

19. COPING STRATEGIES FOR FAMILIES FORVIOLENT OR AGGRESSIVE BEHAVIOR Talk directly with your family member about his/her behavior Keep calm and speak in a normal voice. Be clear and firm about what you do not like and what you would like your family member to do. Let your family member know the effect he/she is having on you and other people. Let them know how you and others feel when they act this way. Call on outside help, such as a crisis clinic. Call on police if behavior is dangerous. Learn to understand and cope with your own fear. Identify early signs of a problem.

20. COPING STRATEGIES FOR FAMILIES FORSELF-DESTRUCTIVE AND SUICIDALBEHAVIOR Listen sympathetically to your relative’s concerns. What is happening that is causing him/her to feel so bad that he/she wants to hurt him/herself? Gently confront your relative by telling him/her that life is a gift and not one’s own to take. Sit quietly with relative to keep him/her company. If a threat of self-destructive or suicidal behavior does not subside, talk to your relative about where to get immediate help. Call a crisis team. If a threat has already been acted on, stop or interrupt the behavior, even physically if necessary. Your relative may need immediate help, such as a stomach pumping or hospitalization. If medical attention is refused, call the police or take legal action to force the issue of medical help.

21. COPING STRATEGIES FOR FAMILIES FORHYGIENE AND APPEARANCE Remind relative to “put on a clean shirt,” “comb his/her hair,” and “wear different clothes.” Acknowledge what relative is already doing well. Be actively involved in buying new clothes. Lay out clean clothes at the beginning of each day. Share your feelings with family member about his/her appearance. Acknowledge the range of styles that are acceptable among relative’s peers. Arrange for teaching or instruction in hair care, make-up, personal styles.

22. COPING STRATEGIES FOR FAMILIES FORCOLLABORATION WITH TREATMENT Understand relative’s medication and its side effects. Help relative to understand and to manage his/her medication and its side effects. Remind relative to take the medication. Discuss with relative the importance of the medication in reducing the symptoms and staying in the community. Require relative to take the medication to remain at home or to visit the home. Rely on professional assistance for medication management. Encourage relative to assume his/her own responsibility and to live the consequences of finding his/her own balance in his/her drug regime. Physical contact and touching. Share your own feelings about the medication issue.

23. COPING STRATEGIES FOR FAMILIES FORSOCIAL WITHDRAWAL AND ISOLATIONCOPING STRATEGIES Involve relative in family social activities Acknowledge that relative needs to be alone at times. Encourage relative to become involved in a social rehabilitation program. Encourage relative’s friends to do things with him/her. Suggest activities for relative and his/her friends to do. Advocate for case manager to become more involved in planning for social activities for relative. Do not push too hard on withdrawal. Relative needs “down time” for sorting out his/her experiences.

24. STRESS MANAGEMENT COPINGSTRATEGIES FOR FAMILIES Become involved in activities that have nothing to do with psychiatric disability. Find meaningful work away from the home. Maintain a normal life style. Maintain a life of your own. Share your experiences and feelings in a family support group. Create a greater balance in your life. Achieve and maintain physical fitness through regular exercise and good nutrition. Acknowledge that you are not the only one who can make a difference. Be able to feel the pain, move through it, and move on to other feelings. Be prepared for the upset your limits may cause and get support. Advocate for the services your family member needs. Become active in changing the mental health system. Be selective in your helping. Know your limits and don’t wait until you are over the edge. Distance yourself from what is not possible and focus on what is possible. Distance yourself from behaviors that you cannot or need not be trying to change. Pay attention to the lives of other family members. Know that structure can communicate caring. Take one step at a time. Accept that whatever you are doing is the best that you can do at this time. Become involved in a group or process that supports the exploration and deepening of your beliefs and values. Identify options. Schedule time with friends. Celebrate small victories. Maintain a realistic hope. Join a local NAMI group.

25. Family Programs and Resources Support And Family Education (SAFE) Program: Mental Health Facts for Families Developed by Michelle Sherman, Ph.D. at the Oklahoma City VA Medical Center 18-session curriculum of monthly workshops Applicable to all severe mental illnesses Specific session on post-traumatic stress disorder (PTSD) Sherman, M.D. (2003). Support And Family Education (SAFE) Program: Mental Health Facts for Families. Oklahoma City VA Medical Center. 2nd edition. http://www.ouhsc.edu/bpfamily/Detail/Sherman.html

26. Family Programs and Resources NAMI’s Family to Family Education Program 12-week course for family caregivers Taught by trained family members Course and materials are free http://www.nami.org/template.cfm?section=Family-to-Family NAMI Support groups NAMI Website http://www.nami.org/Template.cfm?section=Find_Support

27. Family Programs and Resources Family Connections Program 12-week course for family members with a relative with borderline personality disorder (BPD) based on the strategies of standard Dialectical Behavior Therapy (DBT) and DBT for families Modeled after Family-to-Family Suggested donation is $50 or more if possible. http://www.borderlinepersonalitydisorder.com/family-connections.shtml

28. Family Programs and Resources Dialectical Behavior Therapy-Family Skills Training (DBT-FST) 6-month (24-week) series that meets for an hour and a half on a weekly basis with a group of from 6 to 9 families Presents the biosocial model to patients and family members in a non-blaming manner Offers support and education to family members in the form of teaching DBT skills Reinforces skillful behavior though empathy and validation in the family

29. “All family members are affected by a loved one’s mental illness. The entire family system needs to be addressed. To assure us that we are not to blame and the situation is not hopeless. To point us to people and places that can help our loved one. I was not informed by anyone what my mother actually suffered from. I endured a lot of unnecessary emotional pain. The impact still lingers on.”

30. Provider Family Education The Role of the Family in Psychiatric Rehabilitation: A Workbook (on CD) Edited by LeRoySpaniol, Anthony M. Zipple, Diane T. Marsh, & Laurene Y. Finley The Role of the Family in Psychiatric RehabilitationoleFamilyCD.pdf Table of Contents Introduction Chapter 1: The Family Experience of Psychiatric Disability Chapter 2: Changing Family Roles Chapter 3: The Recovery Process of Family Members Chapter 4: Family Needs Chapter 5: Meeting the Needs of Young Family Members Chapter 6: Practical Coping Strategies for Families Chapter 7: Helping Families to Manage Personal Stress and Burn-out Chapter 8: Confidentiality and the Family Chapter 9: The Cultural Context: Families Coping with Psychiatric Disability Chapter 10: Family-Professional Collaboration References

31. Provider Family Education What Professionals Need to Know about Families (on CD) LeRoySpaniol & the Massachusetts NAMI/DMH Curriculum, Training, and Practice Consortium Table of Contents Module 1: The Family Experience of a Family Member with a Psychiatric Disability What Professionals Need to Know when working with Families1.FamilyExperience1PM.FamilyExperience.pdf Module 2: Changing Family Role Module 3: Family and Practitioner Needs for Information, Skills, and Support Module 4: Family/Professional/Consumer Collaboration

32. Kimmie Jordan Mental Health Rehabilitation Services Website:WWW.MentalHealthRehabServcies.com E-Mail:KimmieJordan@MentalHealthRehabServices.com 575-649-8518