Healing the Heart Aftercare for Donor Families and

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

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

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

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.

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

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

WHAT IS “AFTERCARE”? Aftercare = Consistency

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

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

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

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

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

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

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

Coordinate Grief Support Programs

Phone Calls of Support

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

Online Resources Private Facebook Group for Donor Families “One. Legacy 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

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

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

Grief Support Program Results 4. 5 Self-report scale of 0 -5 4 3. 5 3 Shock 2. 5 Guilt 2 Sadness 1. 5 Anger 1 Hopeless Death thoughts 0. 5 0 Self-harm thoughts Initial @ 6 wks @ 9 wks

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

Are you facing “Challenges” like this?

Has “Apathy” has set in?

mpost@onelegacy. org

“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. ””

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

How many of you deal with chronic Quick Surveys: 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

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

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

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

Compassion Fatigue can affect anyone!

What are the warning signs?

Symptoms? Fru nce Fatigue stra Sadness Sleep D isturba tion g n i a l p m o C s n o i t u l o s o / w e g n a h C t W h g i e Irritabilit y See: www. compassionfatigue. org

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

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

Burnout Survey Results 279 Participants – Average Score 68 Overall Social Services RNs RTs CLS HD only Approach (only) Staff Mixed Role RN, Approach, Referral 68. 0 73. 4 71. 6 58. 6 62. 0 54. 0 48. 5 66. 6

Burnout Survey Results Leadership (N=36) 71. 7 Executive Directors/CEOs Hospital Leadership (no CEOs/EDs) 76 70. 5 (Supervisor, Manager, Director, VP, CEO)

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

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

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

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

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)

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

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

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. 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.

Where to Start? Symposium online 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.

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

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

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

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

Exercise

Exercise Hike n Walk n Bike n Dance n Yoga n Run n

Laugh…

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

Research about Pet Scans, Healing, and Creativity

Easy CREATIVE Ideas Photography 365 n Art/Doodles n

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

Take an Art Class

Take a Cooking Class

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

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

Act like a child. Plank!!

Act like a child. Swing at a park!

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

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

Little treats ~Retail Therapy (all things in moderation)

Yearly Self Care Ideas? Vacation or a Va-Cobligation

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

Release your anger/fear

Add at least one item to your: Daily Weekly Monthly Yearly

Ensure these address your needs on various levels of self care: PHYSICAL NUTRITIONAL SPIRITUAL SOCIAL EMOTIONAL Find an accountability partner and make a commitment to do something new for self-care

“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

Questions?

References Figley, C. R. (1983). Catastrophes: An overview of family reaction. In C. R. Figley & H. I. Mc. Cubbin (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.

References Figley, C. R. (2001). Renewing Spirits: Lessons From Thirty Years of Trauma. Work, 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.