Sustainable Caregiving Resources Page

Sustainable Caregiving Resources

Sustainable Caregiving Video Page

Attentional Balance and Grounding

Articles

Farb, N. A., Anderson, A. K., & Segal, Z. V. (2012). The mindful brain and emotion regulation in mood disorders. Canadian journal of psychiatry. Revue canadienne de psychiatrie57(2), 70–77. doi: 10.1177/070674371205700203

McGonigal, K. (2021, September 13) The Big Brain Benefits of Meditation. Yoga Journal

Parker, C. (2015, April 22Compassion meditation reduces ‘mind-wandering,’ Stanford research shows. Stanford News

Porges S. W. (2022). Polyvagal Theory: A Science of Safety. Frontiers in integrative neuroscience16, 871227. https://doi.org/10.3389/fnint.2022.871227

Books

Pocket Guide to the Polyvagal Theory: the transformative power of feeling safe
Stephen Porges, 2017, Norton Professional Books

The science of our natural response to danger and how to use it to build safety.

In an Unspoken Voice: How the body releases trauma and restores goodness
Peter Levine, 2010, North Atlantic Books

In an Unspoken Voice is based on the idea that trauma is neither a disease nor a disorder, but rather an injury caused by fright, helplessness and loss that can be healed by engaging our innate capacity to self-regulate high states of arousal and intense emotions.

Teal blue cover for Finding Meaning Workbook

Finding Meaning: the 6th Stage of Grief Working Book
David Kessler, 2024, Bridge City Books

In this companion workbook to David’s bestselling book Finding Meaning: The Sixth Stage of Grief, you will come to understand your unique and personal experience with grief and begin to work through the loss, releasing the hurt and learning to grieve with more love than pain . . . because love never dies.

Handouts

The STOP Practice: Pause and breathe in the middle of life

Directed Attention, Selected Practices: Summary of a few grounding practices

Practice: Positive Memory Intensification adapted from Peter Levine, PhD (Serious Illness)

Practice: Orienting Adapted from Peter Levine on trauma therapy, this is a grounding practice that demonstrates to your brain you are not in physical danger.

Video Clips

Just Breathe Mindful Schools. (2015, January 26) YouTube
In this powerful short film, watch and hear from elementary school students learning to use mindfulness (noticing how they’re feeling) to navigate complex feelings. By Julie Bayer Salzman and Josh Salzman (Wavecrest Films)

 

Stress Responses & Meeting Difficult Emotions

Articles

Cohn, M. A., & Fredrickson, B. L. (2010) In search of durable positive psychology interventions: Predictors and consequences of long-term positive behavior change. The journal of positive psychology5(5), 355–366. doi: 10.1080/17439760.2010.508883

Fredrickson, B. L., Cohn, M. A., Coffey, K. A., Pek, J., & Finkel, S. M. (2008). Open hearts build lives: positive emotions, induced through loving-kindness meditation, build consequential personal resources.  Journal of personality and social psychology95(5), 1045–1062. doi: 10.1037/a0013262

Books

The Mindfulness-Based Emotional Balance Workbook: An eight-week program of improved emotion regulation and resilience
Margaret Cullen and Gonzalo Brito Pons, 2016, New Harbinger Publications

This workbook offers an eight-week program using emotion theory and mindfulness-based techniques to help you manage the overwhelming thoughts and feelings and cultivate emotional balance.

The Upside of Stress: Why stress is good for you, and how to get good at it
Kelly McGonical, 2016, Penguin Books

McGonigal shows readers how to cultivate a mindset that embraces stress, and activate the brain's natural ability to learn from challenging experiences. 

Handouts

Selected Poems & Quotes: Viktor Frankl Quote & “The Guest House” by Jalal ad-Din Muhammad Rumi

Soften-Soothe-Allow for Emotions: Adapted from Mindful Self-Compassion program by Kristin Neff & Christopher Germer

Links

Atlas of Emotions
The Atlas of Emotions, by Paul and Eve Ekman, is an interactive graphic tool that builds awareness of the many flavors of basic emotions.

Video Clips

How to Make Stress Your Friend TED. (2013, September 13) YouTube
Psychologist Kelly McGonigal urges us to see stress as a positive, and introduces us to an unsung mechanism for stress reduction: reaching out to others.

Positive Intentions

Articles

Brown, S. L., Smith, D. M., Schulz, R., Kabeto, M. U., Ubel, P. A., Poulin, M., Yi, J., Kim, C., & Langa, K. M. (2009). Caregiving behavior is associated with decreased mortality riskPsychological science20(4), 488–494. doi: 10.1111/j.1467-9280.2009.02323.x

Brown, R.M. and Brown, S.L. (2014), Informal Caregiving: A Reappraisal of Effects on Caregivers. Social Issues and Policy Review, 8: 74-102. doi: 10.1111/sipr.12002

Fredrickson, B. L., Grewen, K. M., Algoe, S. B., Firestine, A. M., Arevalo, J. M., Ma, J., & Cole, S. W. (2015). Psychological well-being and the human conserved transcriptional response to adversity. PloS one10(3), e0121839. doi:10.1371/journal.pone.0121839

Poulin, M. J., Brown, S. L., Ubel, P. A., Smith, D. M., Jankovic, A., & Langa, K. M. (2010). Does a helping hand mean a heavy heart? Helping behavior and well-being among spouse caregivers. Psychology and aging25(1), 108–117. doi:10.1037/a0018064.

Books

Man’s Search for Meaning
Viktor E. Frankl, c 1959 [2006], Beacon Press

The author account of his time in Nazi concentration camps and explores human capacity to choose how we relate to adversity.

A Fearless Heart
Thupten Jinpa (2015) Hudson Street Press

Thupten Jinpa, Ph.D., introduces the evidence-based practice of compassion  as taught in the course Compassion Cultivation Training at Stanford that Jinpa helped to create, showing that compassion can be a path through suffering, a key to robust health, and even an effective way to reach our goals.  A Fearless Heart includes the practice of living from our highest values and intentions.

Handouts

Poem: Shoulders by Naomi Shihab Nye

Practice: Repeating Question adapted from Dignity Therapy (Chochinov) and GRACE (Halifax) (Serious Illness)

Practice: Purpose and Values (Setting Daily Intention) Adapted from Kelly McGonigal

Video Clips

The Science of Compassion: Origins, Measures, and Interventions - Steve Cole, Ph.D. from lecture at Science of Compassion conference in Teluride, CO (2012, August 27). YouTube (~14 minutes) In this video clip, Steve Cole describes the biological benefits of intention for the greater good.

 

Self-Compassion

Articles

Neff, K. (2015, September 30) The Five Myths of Self-Compassion. Greater Good Magazine

Tuttle, S. (2018, July 13) Seven Lessons from Mister Rogers That Can Help Americans Be Neighbors Again. Greater Good Magazine

Handouts

Fears of Compassion Scale From the Compassionate Mind Foundation

Practice: Self-Compassion Break Adapted from Mindful Self-Compassion Program developed by Kristin Neff, PhD and Christopher Germer, PhD)

Exercise: Self-Compassion Letter-Writing Exercise Adapted from research by Kristin Neff, PhD, University of Texas.

Practice: Supportive/Soothing Touch Adapted from the Mindful Self-Compassion Program by Kristin Neff and Christopher Germer

Practice: Positive Memory Intensification adapted from Peter Levine, PhD (Serious Illness)

Links

Compassion-Focused Therapy (Paul Gilbert)

Center of Mindful Self-Compassion: Free Meditation and Practices
These meditations and exercises from the Mindful Self-Compassion (MSC) program are recorded by MSC founders Kristin Neff and Chris Germer. These recordings can be downloaded by right-clicking on the name of the practice.

Self-Compassion Break -- Practice Recordings

Self-Compassion Break (Kristin Neff)

Self-Compassion Break (Chris Germer)

Self-Compassion Break (short) (Chris Germer)

Self-Compassion Test (Kristin Neff)

Video Clips

Peter Mayer Japanese Bowl John Vandermey. (2012, June 16) YouTube

 

Challenging Relationships

Articles

Bernhardt, B. C., & Singer, T. (2012). The neural basis of empathy. Annual review of neuroscience35, 1–23.

Klimecki, O. M., Leiberg, S., Ricard, M., & Singer, T. (2014). Differential pattern of functional brain plasticity after compassion and empathy training. Social cognitive and affective neuroscience9(6), 873–879. doi: 10.1093/scan/nst060

Woodruff, L (2019, September 17) Caregiving’s impact on intimacy AARP Family Caregiving

Zaki, J. (2015, October 20) Choosing Empathy. Edge  (Transcript)​

Books

The Art of Forgiveness, Lovingkindness, and Peace
Jack Kornfield, 2008, Bantam

Practices for bringing healing, peace, and compassion into our daily lives. These practices offer simple ways to meet life’s challenges with acceptance and hope.

Forgive for Good: A Proven Prescription for Health and Happiness
Fred Luskin, 2003, HarperOne

A nine-step forgiveness method that makes it possible to move beyond being a victim to a life of improved health and contentment.

Nonviolent Communication: A Language of Life: Life-Changing Tools for Healthy Relationships (3rd edition)
Marshall Rosenberg, 2015, PuddleDancer Presss

Nonviolent Communication provides a method to communicate needs efectively without accusation or blame. 

Love in the Time of Chronic Illness: How to fight the illness, Not each other
Barbara Kivowitz and Roanne Weisman, 2018, Rare Bird Books

Offers practical and thoughtful guidance from medical, spiritual, and legal experts to help get through crises and grow stronger as a couple.  

Loneliness: Human nuture and the need for social connection 
John T. Cacioppo and William Patrick, 2009, WW Norton & Co

Describes loneliness as a sense of social isolation or social rejection and describes how it disrupts our immune system and how to overcome this state to achieve better health and happiness.

Handouts

Aspiration about listening and compassion by Thich Nhat Hanh

NURSE Statements for articulating empathy (VitalTalk)

Poem: If Prayer Would Do It by Stephen Levine

Metta (Wishes for Well-Being) for Caregivers From Roshi Joan Halifax and Sharon Salzburg

Poem: Have Compassion For Everyone You Meet by Miller Williams

Links

Pain Reprocessing Therapy: Pain Reprocessing Therapy (PRT) is an evidence-based approach for treating chronic pain.  PRT aims to rewire neural pathways in the brain in order to deactivate pain.

Video Clips

#Empathy explained by Matthieu Ricard Shining Hope Foundation. (2013, May 11) YouTube: Matthieu Ricard shares his thoughts on empathy. Video creation/edition by varialstudio

Empathy: The Human Connection to Patient Care. Cleveland Clinic. (2013, February 27) YouTube: Filmed at the Cleveland Clinic; about how we truly don't know what's going on inside everyone we see.

Brene´ Brown on Empathy (animated) RSA. (2013, December 10) YouTube: Difference between empathy and sympathy

The Practice and Power of Forgiving, Manny’s (2022, Mar 24) YouTube: Fred Luskin’s informal talk about the power of forgiveness

 

The Difficult Emotion of Grief and Chronic Sorrow

Articles

Ahlström G. (2007). Experiences of loss and chronic sorrow in persons with severe chronic illness. Journal of clinical nursing, 16(3A), 76–83. doi: 10.1111/j.1365-2702.2006.01580.x

Books

Healing Through the Dark Emotions
Miriam Greenspan, 2004, Shambhala Publications

Drawing on inspiring stories from her practice and personal life, and including a complete set of emotional exercises, Greenspan teaches the art of emotional transformation by which grief turns to gratitude, fear opens the door to joy, and despair becomes the ground of a more resilient faith in life.

Chronic Sorrow: A living loss (2nd Edition)
Susan Roos, 2017, Routledge

Chronic Sorrow explores natural grief reactions to losses that are not final and continue to be present in the life of the griever. Chapters also provide guidance for those who struggle with living with irremovable loss, helping them plan for the future.

Teal blue cover for Finding Meaning Workbook

Finding Meaning: The 6th Stage of Grief Workbook
David Kessler, 2024, Bridge City Books

In this companion workbook to David’s bestselling book Finding Meaning: The Sixth Stage of Grief, you will come to understand your unique and personal experience with grief and begin to work through the loss, releasing the hurt and learning to grieve with more love than pain . . . because love never dies..

Handouts

Stages of Grief Cartoon by Yvonne Heath (loveyourlifetodeath.com)

Selected Poems “In the Blackwater Woods” by Mary Oliver and “Talking to Grief” by Denise Levertov

Post-Traumatic Growth Inventory Developed by RG Tedeschi & LG Calhoun

Finding Balance in the Presence of Suffering

Articles

Back, A. L., Rushton, C. H., Kaszniak, A. W., & Halifax, J. S. (2015). "Why are we doing this?": clinician helplessness in the face of suffering. Journal of palliative medicine18(1), 26–30. DOI:10.1089/jpm.2014.0115

Crum, A. J., Leibowitz, K. A., & Verghese, A. (2017). Making mindset matter. BMJ (Clinical research ed.)356, j674. doi:10.1136/bmj.j674

Halifax, J. (2012, September 17) Practicing G.R.A.C.E: How to Bring Compassion Into Your Interactions with Others. Upaya Zen Center

Books

Standing at the Edge: Finding freedom where fear and courage meet
Joan Halifax, 2018, Flatiron Books

Halifax has identified five psychological territories she calls Edge States—altruism, empathy, integrity, respect, and engagement—that epitomize strength of character, yet can also be the cause of personal and social suffering.
Experiences of caregivers, activists, humanitarians, politicians, parents, and teachers, are recounted to illustrate these states and their impact.

Handouts

Practice: G.R.A.C.E. Setting the stage for compassion in our encounter with others, developed by Roshi Joan Halifax

Meditation: Tonglen or Giving and Receiving: A Practice of Great Mercy by Joan Halifax

Links

Upaya Center G.R.A.C.E page

2026 Grace Training (online), Upaya Center

2026 Grace Training (In Person), Upaya Center

Video Clips

Change your mindset, change the game TEDx Talks. (2014, October 15) YouTube

Dr. Alia Crum explores scientific results that show the influence of the mindset on the body, and how changing the subjective mindset produced different outcomes.

Gratitude Practice & Wellness Practice Journal

Books

Thanks! How Practicing Gratitude Can Make You Happier
Robert A. Emmons, PhD, 2008, HarperOne

Robert Emmons—professor at UCDavis and editor-in-chief of the Journal of Positive Psychology—examines what it means to think and feel gratefully in Thanks! and invites readers to learn how to put this powerful emotion into practice.

Handouts

Gratitude Practice

Gratitude Poster: How Gratitude Supports Health Greater Good Science Center

Poems: Selected Poems “Three Gratitudes” by Carrie Newcomer & “As If to Demonstrate an Eclipse” by Billy Collins

Practice: Wellness Practice Journal Use practice journal, developed by Rev. Judy Long, BCC, to establish gratitude practice, set daily positive intentions, and choose personal enjoyable weekly goals.  Note: Print only the first 12 pages to get started.

Palliative Care

Get Palliative Care: Learn about Palliative Care.  How can it help?

UCSF MERI Center Palliative Care Resource Page

End of Life Doulas Learn about end of life doulas who accompany the dying and their loved ones. Helpful to explore early if this is of interest. 

Bay Area End of Life Doula Alliance

Books

With the End in Mind: Dying, Death, and Wisdom in an Age of Denial
Kathryn Mannix, 2018, Little Brown Spark

Excellent account of how dying often occurs as well as an excellent narrative of palliative care.  Additionally discusses CBT as a road map patients might wish to use to work with difficult emotions.

Life After the Diagnosis
Steven Z. Pantilat, MD, 2017, Da Capo Lifelong Books

In Life After the Diagnosis, Dr. Steven Z. Pantilat makes sense of what doctors say, what they actually mean, and how to get the best information to help make the best medical decisions. Dr. Pantilat covers everything from the first steps after the diagnosis and finding the right caregiving and support, to planning your future so your loved ones don’t have to. He offers advice on how to tackle the most difficult treatment decisions and discussions and shows readers how to choose treatments that help more than they hurt, stay consistent with their values and personal goals, and live as well as possible for as long as possible.

Ombre light blue with drawing of leaves on the over of Bedside Manners edited by Cynthia Perlis

Beside Manners
Cynthia Perlis, 2014, lulu.com

This book was created after asking patients living with serious illness what they may or may not want people to say to them.   This booklet is designed to support both the patient and you.

Advance Care Planning
Dementia Care

Zinnia TV Engaging, soothing videos for dementia care—reduce stress and create moments of joy. Support dementia care with calming, research-based videos that ease agitation & connect.

Other Resources

Communicating with Friends & Family

Free websites to let people receive updates about you person's condition at the same time. You can choose who will receive it.

Caring Bridge

Lotsa Helping Hands Also provides allows people to sign up to provide assistance such as giving rides or bringing meals. 

Additional Miscellaneous Resources

UCSF Patient and Family Cancer Support Center Link to various resources, workshops and events for patients and caregivers.

What Works For Me?  List of practices from Sustainable Caregiving Workshop

Greater Good Science Center (GGSC) an online magazine of brief user-friendly articles about science based insights for a meaningful life developed at UC Berkeley 

International Neuropalliative Care Society (INPCS) Website provides information about neurologic conditions if relevant for your and your person; open to caregivers and patients as well as medical professionals.

Books

The Explain Pain Handbook: Protectometer
G. Lorimer Mosely and David Butler, 2015, NOI Group

This book describes how pain is associated with catastrophizing about pain and that understanding how pain functions can diminish catastrophizing and significantly reduce pain.

The Way Out 
Alan Gordon, LCSW and Alon Ziv, 2022, Penguin Random House

This book combines accessible science with a concrete, step-by-step plan to teach sufferers how to heal their own chronic pain using Pain Reprocessing Therapy.