1. Healing the Heart: Aftercare for Donor Families and Caregivers Michelle A. Post, MA, LMFT Clinical Aftercare Specialist, OneLegacy Los Angeles, CA mpost@onelegacy.org October 15, 2013

2. 1)Describe 3 services that can support a grieving family after donation (Aftercare provided to OneLegacy Donor Families). 2)List 3 warning signs of stress/compassion fatigue 3)Identify and utilize at least three self-care techniques 4)– and LAUGH! Objectives

3. “Companioning” a bereaved family (A. Wolfelt)  Not the experts on grief; take cues & offer support  Do not lead; Walk WITH on the journey Donor Family Services Philosophy

4. After a family or donor authorizes donation, even if we must medically close the case and not transplant… …Surviving loved ones ARE a donor family! Authorization during the donation process = a donor family. Who is a Donor Family?

5. Who Supports the Family? Aftercare Staff Kari Kozuki, Flora Leos, Anna Binder, Luz Diaz, Deborah Tanner, Eriq Christiansen, Michelle Post

6. Special Services Death notification Hospital-based child, teen, family grief support

7. Aftercare = Consistency WHAT IS “AFTERCARE”?

8. Cards & letters of support Grief literature Timed intervals from the death Aftercare Program ~ 2 Years

9. “Fields of Gold” Donor Remembrance Ceremonies Annual event in March. Hundreds of donor family members at six locations. Terry Harrington, heart recipient & ‘voice’ of Lisa’s sax on “The Simpsons” Video tribute Pins and pendants

10. Donor Family/Recipient Contact & Medical Updates A lung recipient holds a picture of his donor during a meeting with his donor’s mother.

11. Donate Life Rose Parade Float Donor Family Decorating Shifts Volunteer decorates in memory of her sister A donor family presents their loved one’s completed floragraph

12. Donate Life Dedication Garden Donor parents place a rose in the Donate Life float’s Dedication Garden

13. Donor Family Teams at the Donate Life Run/Walk Donor family teams walk to remember T-shirts are personalized with each donor’s picture

14. Circle of Life Garden at Donate Life Run/Walk Donor families enjoy a place of reflection

15. Coordinate Grief Support Programs

16. Phone Calls of Support

17. DTLA In-Person Grief Counseling Short-term (6-9 free sessions) Grief Support Services in DTLA office

18. Online Resources Private Facebook Group for Donor Families “OneLegacy Donor Families” closed private group Donor families post about: 1) ??s of the day 2) How they are coping or what they need help with. 3) Positive things about life and the struggles. 4) Challenges with grief reactions and anniversaries

19. Monthly Grief Groups Saturday Mornings Downtown LA  Children, Teens, Adults  Staff, Pepperdine GSEP, CZC volunteers  English, Spanish Redlands  Children, Teens, Adults  Staff, Pepperdine GSEP, community volunteers  English, Spanish Orange County  Adults only  Pepperdine GSEP  English

20. Grief Support Program Results Meet Alex Parajon: Son of donor Maria Santana Grief Group Attendee Short-term counseling Facebook Group Donate Life Ambassador

21. Grief Support Program Results Self-report scale of 0 -5

22. WHAT ABOUT YOU??? What have you done for YOU lately?

23. Are you facing “Challenges” like this?

24. Has “Apathy” has set in?

25. mpost@onelegacy.org

26. “Everything has a purpose, clocks tell you the time, trains take you to places. I'd imagine the whole world was one big machine. Machines never come with any extra parts, you know. They always come with the exact amount they need. So I figured if the entire world was one big machine...... I couldn't be an extra part. I had to be here for some reason. And that means you have to be here for some reason, too.””

29. mpost@onelegacy.org Quick Survey: How many of you feel on-the-job stress, or stress in your life, as a side effect of your job?

30. Quick Surveys: How many of you deal with chronic pains or illness of some sort? Headaches Back or neck pain Digestive problems (IBS, diarrhea, stomach aches or Constipation) High blood pressure Knee pain, arthritis, joint pain Circulatory or neurological symptoms Shortness of breath Or others

31. Quick Surveys: How many of you believe that the mind is connected to the body?

32. Quick Surveys: Stress affects mind/body health: 59% reported feeling nervous or sad. 51% reported symptoms of fatigue. 56% reported inability to sleep/sleeping too much. 55% reported lack of interest, motivation or energy. Study: Americans Engage in Unhealthy Behaviors to Manage Stress (APA, 2006)

33. aka Practitioner Decay, Secondary Traumatic Stress or Vicarious Trauma What is Compassion Fatigue?

34. Compassion Fatigue can affect anyone!

35. What are the warning signs?

36. Symptoms? Fatigue Sadness Sleep Disturbance Irritability Frustration Weight Change See: www.compassionfatigue.org Complaining w/o solutions

37. How Does This Affect Me? Take the Are You Burning Out Survey* Also see Compassion Fatigue ProQOL * Adapted by Michelle Post, MA, LMFT mpost@onelegacy.org (from Public Welfare, Vol. 39, No. 1, 1981, American Public Welfare Association).mpost@onelegacy.org

38. Burnout Survey Results mpost@onelegacy.org 28-38mellow, almost no job stress 38-50low amount of stress, can improve 51-70moderate stress, fair chance of burn-out 71-90high stress, begun to burn out, take action now and get a medical check up. 91 & updangerous amount of stress and burn out, high chance to succumb to stress-related illness. Seek professional help now.

39. Burnout Survey Results 279 Participants – Average Score 68 Overall68.0 Social Services73.4 RNs71.6 RTs58.6 CLS62.0 HD only54.0 Approach (only) Staff48.5 Mixed Role RN, Approach, Referral66.6

40. Burnout Survey Results Leadership (N=36) (Supervisor, Manager, Director, VP, CEO) 71.7 Executive Directors/CEOs76 Hospital Leadership (no CEOs/EDs)70.5

41. We have it! What Do We DO? …SELF CARE!

43. Write down what you do to take care of yourself: Daily?Weekly?Monthly?Yearly? What do you do to care for yourself?

44. Do these address your needs on various levels of self care? PHYSICALNUTRITIONALSPIRITUALSOCIALEMOTIONAL What do you do to care for yourself?

45. Ideas to BEEF IT UP! Do you have at least 3 things for each category? What do you do to care for yourself?

47. Feed minds with positive feedback, not just negative feedback (Sandwich Technique) 6 POSITIVEs for each NEGATIVE (Daniel Siegel 2011 lecture, Los Angeles Children’s Grief Conference) Take a break from watching the news (especially before bed) If you are what you eat, then you DEFINITELY are what you think!

48. mpost@onelegacy.org YOUR VOCABULARY If you never say “NO”, what is your “YES” worth? Say “I CHOOSE” instead of “I should, I ought to or I have to.” Say “I won't” rather than “I can't.”

49. Improve Teamwork Download free audio copy of Tribal Leadership and hold debriefing groups w/Staff: http://www.zappos.com/tribal.zhtml Cost: CDS & Staff time only

50. Pennebaker, J. W. (1997). Writing about emotional experiences as a therapeutic process. Psychological Science, 8, 162-166. ; Pennebaker, J. W. (2004). Writing to Heal: A guided journal for recovering from trauma & emotional upheaval. Lepore S.J. (Ed.), Smyth, J.M. (Ed.) (2002). The Writing Cure: How Expressive Writing Promotes Health and Emotional Well-Being. Research supports journaling as a way of improving health: Pennebaker’s research showed that brief, intense bursts of emotional release writing 15-20 min/day for 4 consecutive days – is directly related to increased immune system functioning which can last for several weeks.

51. See Exploring Your Own Grief -Take time to answer the questions on your own See Good Parent Messages -Start a journal, create a mantra, set positive intentions for the day Gratitude List -Before bed, focus on one good thing that occurred during the day. Where to Start? Symposium online

52. mpost@onelegacy.org Relaxation Training & Biofeedback ( Staff Retreats) What do you do to care for yourself?

53. Space on your desk & car: Mementos: Grover Funny Pens My Worry Doll Evaluate your environment

54. Treat yourself to one nice meal a week Treat yourself to one nice meal a week Write online reviews (Yelp, Urbanspoon, etc.) Write online reviews (Yelp, Urbanspoon, etc.) NOT Comfort Food. Self-hate vs. self-love. NOT Comfort Food. Self-hate vs. self-love. Eat well

55. Garden Garden Walk on the sand or in mud Walk on the sand or in mud Walk barefoot on grass Walk barefoot on grass 15min of sunlight before 9am (helps with sleep) 15min of sunlight before 9am (helps with sleep) Nature

56. Exercise

57. Hike Hike Walk Walk Bike Bike Dance Dance Yoga Yoga Run Run Exercise

58. Laugh…

59. Laughing Yoga (Demonstration) 1) Handshake, Cross Hands 2) Bow and Arrow 3) Machine Gun Laughter 4) Cell Phone Laughter 5) Spicy Soup Laughter 6) Laugh & Dance Clap Laugh Put Laughter and Joy in the fabric of your life.

60. Research about Pet Scans, Healing, and Creativity

61. Photography 365 Photography 365 Art/Doodles Art/Doodles Easy CREATIVE Ideas

62. Draw/Scrapbook changes or losses in life and positive experiences* Easy CREATIVE Ideas *Ariel Gore (Body & Soul, March 2010)- Helps Positive Emotions last longer

63. Take an Art Class

64. Take a Cooking Class

65. How do you say goodbye to your work day? How do you say goodbye to deceased patients? Rituals to say goodbye in crisis work or grief work:

66. Steve Gross ~ Project Play. Google it. Teaches professionals how to play. Act Like a Child: Play – Parachute

67. Act like a child. Plank!!

68. Act like a child. Swing at a park!

69. Act like a child. Bubbles*** (release your stress and pop the bubbles)

70. Take an Art or Cooking Class Take an Art or Cooking Class Bubbles*** (release your stress and pop the bubbles) Bubbles*** (release your stress and pop the bubbles) Play – Parachute Play – Parachute Swing on the swings at a park Swing on the swings at a park Spa day Spa day More ideas for weekly, monthly or yearly:

72. Little treats ~Retail Therapy (all things in moderation)

73. Yearly Self Care Ideas? Vacation or a Va-Cobligation

74. In times of extreme stress or distress… What do you need? Create a Care Tag Share it with your loved ones

75. Release your anger/fear

77. DailyWeeklyMonthlyYearly Add at least one item to your:

78. Ensure these address your needs on various levels of self care: PHYSICALNUTRITIONALSPIRITUALSOCIALEMOTIONAL Find an accountability partner and make a commitment to do something new for self-care

79. “He who fails to plan is planning to fail” – Winston Churchill, WWII “One who fails to plan self-care is planning to burn-out!!!!!!” – Michelle Post, MA, LMFT

80. Questions?

81. References Figley, C. R. (1983). Catastrophes: An overview of family reaction. In C. R. Figley & H. I. McCubbin (Eds.), Stress and the family: Coping with catastrophe (Vol. 2) (pp. 3-20). New York: Brunner/Mazel. Figley, C. R. (1995). Compassion fatigue as secondary traumatic stress disorder. In C. R. Figley (Ed.), Compassion fatigue: Coping with secondary traumatic stress disorder in those who treat the traumatized (pp. 1-20). New York: Brunner/Mazel. Figley, C. R. (Ed.). (1998). Burnout in families: The systemic costs of caring. Boca Raton, FL: CRC Press. Figley, C. R. (Ed.) (2002). Treating compassion fatigue. New York: Brunner- Routledge.

82. Figley, C. R. (2001). Renewing Spirits: Lessons From Thirty Years of TraumaWork, Invited keynote address to the William Wendt Center for Loss and Health Conference on Illness, Grief & Trauma, Washington, DC, October 6. Figure "The Compassion Fatigue Process“ Lepore S.J. (Ed.), Smyth, J.M. (Ed.) (2002). The Writing Cure: How Expressive Writing Promotes Health and Emotional Well-Being. Pennebaker, J. W. (1997). Writing about emotional experiences as a therapeutic process. Psychological Science, 8, 162-166. References