Brain Injury Family Caregiver Resources and Readings

I learned so much while caring for my husband Alan during his ferocious fight against the limitations of brain injury, dementia, heart disease, and Parkinson’s disease. I found the deep well of my love, resourcefulness, resilience, and creativity. I also faced the limitations of my own exhaustion, patience, and selflessness. In my book I detail the highs and lows of this process. In these pages I offer you some resources to give you strength, support, knowledge, and power…the attributes we all need replenished often!

I’m always looking for good resources, so please contact me to pass along your favorites. Thanks!

Web Resources for Family Caregivers

Books for Family Caregiver

Family Caregiver Issues and Perspectives

Sheehy, Gail. Passages in Caregiving: Turning Chaos into Confidence.  HarperCollins, 2010. Gail combines her personal experience with a bounty of resources and strategies for each “turning” of the caregiver’s journey. A comforting companion and no-nonsense coach for caregivers regardless of the illness involved.

Mintz, Suzanne Geffen. A Family Caregiver Speaks Up: “It Doesn’t Have to Be This Hard. Capitol Books, Inc., 2007. Suzanne founded the National Family Caregivers Association. She addresses critical issues from the home front to Capitol Hill.

Strong, Maggie. Mainstay: For the Well Spouse of the Chronically Ill. Bradford Books, 1997. The first book specifically for spousal/partner caregivers, by the founder of the Well Spouse Association.

McGonigle, Chris. Surviving Your Spouse’s Chronic Illness. Owl Books, 2004. One of the most honest, and therefore, helpful books to keep the caregiver whole.

Colter, Marilyn. Missing Pieces: Mending the Head Injured Family, Brain Technologies, Inc., 2004. Marilyn has a terrific website.

Barg, Gary. The Fearless Caregiver: How to Get the Best Care for Your Loved One, and Still Have a Life of Your Own. Capitol Books, Inc., 2004. Practical information from the editor of Today’s Caregiver Magazine.

McCue, Kathleen & Bonn, Ron. How to Help Children through A Parent’s Serious Illness.  St. Martin’s Griffin, 1994. Offers practical advice about recognizing and responding to childrens responses to any injury or illness.

Casey, Nell. An Uncertain Inheritance: Writers on Caring for Family. William Morrow, 2007. Several famous writers reflect on their experiences of caregiving or needing care. Thought provoking.

McLeod, Beth Witrogen. Caregiving: The Spiritual Journey of Love, Loss, and Renewal. John Wiley & Sons, Inc., 1999. Spiritual and practical wisdom offers caregivers hope and healing.

Capossela, C. and Warnock, S. Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. Fireside, 2005. Very handy book to start and maintain a circle of care short or long-term.

Caring for a Family Member with a Brain Injury

Cassidy, John. W. Mindstorms: The Complete Guide for Families Living with Traumatic Brain Injury.  DaCapo Press, 2009. An excellent introduction to every aspect of brain injury.

Dell Orto, Arthur E. & Power, Paul W. Head Injury and the Family: A Life and Living Perspective.  GR/St. Lucie Press, 1997. Good suggestions for helping children and teens.

Doidge, Norman. The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science, Penguin, 2007. Amazing stories illustrate research on brain plasticity.

Prowe, Garry. Successfully Surviving a Brain Injury: A Family Guidebook from the Emergency Room to Selecting a Rehabilitation Facility. Brain Injury Success Books, 2010. Every family (and rehab staff) needs this comprehensive guide written by a family caregiver and his wife. Garry covers the gamut based on input from a 300 member panel.

Personal Memoirs about Coping with Brain Injury

Woodruff, Lee & Bob. In an Instant: A Family’s Journey of Love and Healing. Random House, 2007. Follows Bob Woodruff’s painstaking recovery following a severe TBI in Iraq through the eyes of his wife Lee and four children. Lee chronicles their road to healing with honesty, heart, and humor.

Meili, Trisha. I Am the Central Park Jogger: A Story of Hope and Possibility. Scribner, 2003. Trisha conveys a tremendous message of hope and empowerment.

Osborn, Claudia. Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out. Andrews McMeel Publishing, 1998. A physician details her cognitive rehab journey with candor, compassion and wit.

Thomas, Abigail. A Three Dog Life: A Memoir.  Harcourt Press. 2006. A sad and beautiful little book about Abigail’s process of rebuilding her life after her husband suffers a severe TBI and must live in a skilled nursing facility.

Bolte Taylor, Jill. My Stroke of Insight: A Brain Scientist’s Personal Journey. Viking, 2008. An amazing book about recovery and restoration with a spiritual focus. Jill’s mother also emerges as a true hero.

Fox Garrison, Julia. Don’t Leave Me This Way. Harper Paperbacks, 2007. Wonderfully spirited book by a young mother fighting back after an stroke.

Johansen, Ruthann Knoochel. Listening in the Silence, Seeing in the Dark: Reconstructing Life after Brain Injury. University of California Press, 2002. A mother, with a special interest in language, writes about her son’s (and family’s) recovery after TBI.

Crimmons, Cathy. Where Is the Mango Princess: A Journey Back from Brain Injury? Alfred A. Knopf, 2002. Cathy chronicles her husband’s rehab after TBI, and the effect on their adolescent daughter.

Shulman, Alix Kates. To Love What Is: A Marriage Transformed. Farrar, Straus, and Giroux, 2008. Beautifully written book about what changes and what stays the same after Alix’s elderly husband injures his head in a fall.

Mason, Michael Paul. Head Cases: Stories of Brain Injury and Its Aftermath.  Farrar, Straus, and Giroux, 2008. “True, strange, and moving” stories about severe brain injury and its aftermath by an extremely knowledgeable and caring case manger. Not for the faint of heart or those new to brain injury.

Ambiguous Loss

Boss, P. Ambiguous Loss: Learning to Live with Unresolved Grief. Harvard University Press, 1999. My favorite book on the ongoing loss that accompanies chronic illness and how to make it bearable.

Boss, P. Loss, Trauma, and Resilience: Therapeutic Work with Ambiguous Loss. Norton, 2006. Beneficial for support group leaders and therapists, offers techniques for moving on while living with loss.

Bruce. E.J. and Schultz, C. Nonfinite Loss and Grief: A Psychoeducational Approach.Jessica Kingsley Publishers, 2001.Good resource for support groups or professionals.

Stress Management

Witkin, Georgia. Stress Relief for Disasters Great and Small. Newmarket Press, 2002. A tiny book written after 9/11, this is valuable in any crisis.

Benson, Herbert & Stuart, Eileen. The Wellness Book: The Comprehensive Guide to Maintaining Health and Treating Stress-Related Diseases. Birch lane Press, 1993. The classic mind-body health book with many relevant practices for caregivers and those who are ill. Includes the Relaxation Response, a core self-care technique.

Louden, Jennifer. The Woman’s Comfort Book. Harper Collins, 2005. Everything you need for self-nurturing (except respite coverage) is between these covers.

Chodron, Pema. Comfortable with Uncertainty: 108 Teachings. Shambala, 2002. A Buddhist approach to coping with upheaval.

Kabat-Zinn, John. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress. Pain, and Illness. Delacorte, 1990. A mindfulness-based approach to healing through the challenges life sends us.

Still Alice.  Pocket Books, 2009. This novel about a professor with early onset dementia is as gripping as a memoir.Hoffman, S.B., and Platt, C.A. Comforting the Confused: Strategies for Managing Dementia.  Springer Publishing, 2000. Written for nursing home staff, helps all caregivers understand and better care for the physical and emotional needs of people with dementia.

Strauss, C.J. Talking to Alzheimer’s: Simple Ways to Connect When You Visit with a Family Member or Friend. New Harbinger Publications, Inc., 2001. The best advice to help visitors understand the patient’s perceptions and connect in a mutually satisfying way.

Hoblitzelle, Olivia Ames. The Majesty of Your Loving: A Couple’s Journey through Alzheimer’s. Green Mountain Books, 2008. The shared journey of two renowned Buddhist teachers is recounted with compassion and love. Olivia includes reflections and suggestions for caregivers with each chapter.

Parkinson’s Disease

Hutton, J. Thomas & Dippel, Raye Lynne. Caring for the Parkinson Patient: A Practical Guide. Prometheus Books, 2009. Covers several common symptoms of PD and offers ways to maximize safety, communication, and mobility.

Graboys, Thomas & Zheutlin, Peter. Life in the Balance: A Physician’s Memoir of Life, Love, and Loss with Parkinson’s Disease and Dementia.Union Square Press, 2008. An honest recounting of a famous doctor’s process of coming to terms with Parkinson’s and dementia in his 50’s.

Personal Rituals

Imber-Black, E. and Roberts, J. Rituals for Our Times. Harper Collins, 1992. New life events call for new rituals of celebration, letting go, making meaning. Many wonderful ideas for new or revised rituals.

Wall, K. and Ferguson, G. Lights of Passage: Rituals and Rites of Passage for the Problems and Pleasures of Modern Life. Harper Collins, 1994. Addresses how to use life’s changes and their rituals as opportunities for growth.

Creative Arts and Healing

Stahura, Barbara and Schuster, Susan B. After Brain Injury-Telling Your Story: A Journaling Workbook. Lash & Associates Press, 2009. For survivors to explore and understand their experiences and work towards personal goals.

DeSalvo, Louise. Writing as a Way of Healing. Beacon Press, 2000. Describes how writing can help heal pain and loss and contribute to resilience and wholeness.

Fox, John. Poetic Medicine: The Healing Art of Poem Making. Jeremy P. Tarcher/Putnam, 1997. Many wonderful poems to read as well as guided instructions for composing your own poems-even as a novice.

Gamin, Barbara. Art and Healing: Using Art to Heal Your Body, Mind, and Spirit. Three Rivers Press, 1999. Ways to use collage, painting, sculpture to explore, express, and heal.