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Healing the Heart:

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. Objectives.

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Healing the Heart:

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

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

  4. Who is a Donor Family? 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.

  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. What is “Aftercare”? Aftercare = Consistency

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

  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” Pins and pendants Video tribute

  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 FloatDonor Family Decorating Shifts A donor family presents their loved one’s completed floragraph Volunteer decorates in memory of her sister

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

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

  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 GroupsSaturday Mornings Orange County • Adults only • Pepperdine GSEP • English Downtown LA • Children, Teens, Adults • Staff, Pepperdine GSEP, CZC volunteers • English, Spanish Redlands • Children, Teens, Adults • Staff, Pepperdine GSEP, community volunteers • English, Spanish

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

  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.””

  27. 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?

  28. 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

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

  30. Quick Surveys: • 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. Stress affects mind/body health: Study: Americans Engage in Unhealthy Behaviors to Manage Stress (APA, 2006)

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

  32. Compassion Fatigue can affect anyone!

  33. What are the warning signs?

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

  35. 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).

  36. Burnout Survey Results mpost@onelegacy.org

  37. Burnout Survey Results279 Participants – Average Score 68

  38. Burnout Survey Results

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

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

  41. What do you do to care for yourself? Do these address your needs on various levels of self care? PHYSICAL NUTRITIONAL SPIRITUAL SOCIAL EMOTIONAL

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

  43. If you are what you eat, then you DEFINITELY are what you think! • 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)

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

  45. 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

  46. Research supports journalingas a way of improving health: Pennebaker’sresearch 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. 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.

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