After my husband’s brain injury, I craved information on how caregivers dealt with the isolation and exasperation of brain injury without wallowing in self-pity. I wanted to read stories about why someone stays with a disabled spouse and why they would put up with the demands of caregiving. I wanted to know about the struggles those families face. I scoured the Internet to find information on where to go and what to do. I found a few chat rooms and forums where families shared their stories about hospitals and rehabilitation facilities. But over time, I found very little information about what to do and where to go after two years or five years or ten years after the brain injury. And I found even less information about the plight of families and spouses who had to care for their loved ones. Here are some books that I found enlightening.
Where is the Mango Princess? A Journey Back from Brain Injury
by Cathy Crimmins, Knopf, September 2000. Crimmins’ husband was brain-injured in a boating accident and her book details their journey through medical hospitals and rehabilitation centers. Her husband had a remarkably good recovery and was able to return to work but the brain injury made him a very different person. Crimmins’ story offers rich information on the anatomy of brain functioning and how injuries to the brain affect personality and behavior. It is usually the first book that brain injury caregivers read – and for good reason.
by Abigail Thomas, Harcourt, Inc., September 2006. When her husband is brain-injured after being hit by a car, Thomas grapples with feelings of guilt and remorse when she has to place him in an institution. She moves to the country to be near his institution and faces a new life alone, with the company of her three dogs.
In an Instant: A Family’s Journey of Love and Healing
by Lee and Bob Woodruff, Random House, February 2007. This dual memoir describes Bob’s traumatic brain injury while on assignment in Iraq and weaves in the history of his relationship with Lee. Lee describes how she coped with Bob’s recovery while continuing their active lives in the spotlight.
An Uncertain Inheritance
by Nell Casey, William Morrow, November 2007. This collection of 19 essays by well-known writers illustrate the pitfalls and tribulations of caring for loved ones, including siblings, spouses, children or parents overcome by cancer, depression or brain injury. The essays touch on universal themes of feeling overwhelmed by responsibility, loneliness, alienation and ultimately resiliency.
by Alix Kates Shulman, Farrar, Straus and Giroux, September 2008. Shulman’s husband suffers a brain injury at age 75 when he falls from a sleeping loft. Her story describes her anxieties and worries as she advocates for the best treatment, therapy and care. She tends to her husband and tries to resume her autonomous life and self.
One Hundred Names for Love: A Memoir
by Diane Ackerman, W.W. Norton and Company, April 2011. Ackerman describes a world without words when her husband suffers a stroke and has to relearn language. Her story chronicles his journey in rehabilitation and how Ackerman worked hard with him daily to regain cognitive functioning. She provides rich detail on speech functioning and parts of the brain that control speech.
Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer’s
by Meryl Comer, HarperCollins Publishers, September 2014. Comer recounts her husband’s decline with Alzheimer’s and the sacrifices she has made to care for him at home. She details, with brutal honesty, the obstacles they faced with care facilities and the hardships she has endured in her personal life.