Are We Asking Too Much of Families? by Marilyn Lash, MSW

Book review of Learning by Accident by Rosemary Rawlins

Rosemary Rawlins

Rosemary Rawlins

I admit it – I got hooked on Rosemary Rawlins’ book Learning by Accident and read it in 3 days. I even snuck downstairs at 3 a.m. one morning to pick it back up. Her very personal account of her husband Hugh’s brain injury is unlike any other book I have read. What is so very special is how she brings the reader into her home as a wife and mother who is thrust into the world of caregiving. Unfortunately, her experience is not unique. What is unique is how she chronicles her husband’s journey from the brink of death through the long grind of surgeries, therapies, and complications into an uncertain future for their marriage, their children, his employment, and their future.

Caregiving is the less often told story.

The real value of this book is the insights you will gain of the less often told story about brain injury – that of the caregiver. Rosemary reveals her emotional trauma that was the inevitable partner to her husband’s neurological injury. She unflinchingly shares her fears, doubts and anxieties as she travels the rocky road from grief to gratitude for his survival. But living is more than surviving.

Several themes resounded for me. First, regardless of the many medical advances that have been made, we still can not predict what the course or timetable for recovery will be after the brain has been injured. We can not even define or predict what “recovery” will be or mean. This uncertainty that hangs over the Rawlins family – and so many other families – is like the brooding storm cloud that never clears. Sure there are promising gains, but there are also recurrent setbacks – the horizon is never clear of storms that may roll in any moment. The optimistic well wishes for recovery that swamp the Rawlins family starkly contrast with their painful struggle as they grapple with the unknown quality of what Hugh’s life will now become.

We ask so much of families after brain injury

The second theme that resounds throughout this book is the enormity of what we ask of families as they transform from spouse, son, daughter, parent, or sibling to becoming a caregiver. It made me ask the question, “How much is too much?” When I worked as a social worker in a rehabilitation hospital long ago in the late 70s, patients with severe traumatic brain injuries routinely received 3 to 6 months of intensive inpatient treatment. This gave families considerable time to benefit from the support, guidance and training by a team of brain injury specialists. In today’s era of managed care and cost containment, rehabilitation is delivered at warp speed – lengths of stay are now counted in days or weeks, not months.

As Rosemary’s story attests, families are still reeling in shock from the initial trauma when suddenly discharge dates are being set. Families suddenly find themselves being instructed in managing not only physical care, medications and therapies, but a complex set of social, cognitive and behavioral changes. The person coming home is truly not the same person. This book will give health care professionals new appreciation of how much we ask of families and hopefully lead them to question how we can better prepare families with the knowledge, skills, and support to navigate this long journey of brain injury.

Finally, this book takes a holistic look at the many dimensions of brain injury. While much attention is given to the interdisciplinary nature of Hugh’s medical treatment and rehabilitation, it also delves into the legal issues, the financial impact and most importantly, the challenges of returning to work. This gives the reader an appreciation of how long and complex this journey is and how pivotal the caregiver is during every step along the way. But Rosemary is no saint. She does what so many family caregivers do as she neglects her own needs and health until the mounting signs of stress finally force her to recognize that she needs help as well.

Caregiving after TBI

Caregiving after TBI

Learning by Accident is a very personal book of the Rawlins family but it has a universal message for caregivers, professionals, families and survivors that I highly recommend. It is available from Lash and Associates at

www.lapublishing.com/family-support-Rawlins/

Rosemary also author the Family Matters column for the magazine Brain Injury Journey – Hope, Help, Healing.

 

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