by Beverly Bigtree Murphy
publisher: Gibbs Associates, Boulder CO, 1995
Available at Amazon
There are a number of books out there (at long last) designed to help families and friends deal with the frustrating and discouraging task of taking care of folks with Altzheimer's and dementia, but this book is, I believe, a significant departure from the approach most books on the subject take. It may be because it predates many of them.
"He Used to Be Somebody" is not about understanding what happens in the body, or knowing the stages of Altzheimer's (although both are certainly part of the book). Instead, it takes the reader into one specific journey, the life of one Tom Murphy, who finds himself recently married, at the peak of his highly successful career, finding that he's slowly losing the considerable talent and strength of character on which he's built his life.
Told from the perspective of his wife, we really get to know and appreciate the man Tom is, as we follow his journey (which began after an undiagnosed closed head injury) through the hell that is Altzheimer's.
No matter how thoroughly one studies the pathology of the disease, or the medication options, or the home care and nursing home possibilities, or even the public health implications, one is unprepared for the anguish, both from the perspective of the person suffering, and from that of the caregiver.
Doctors who can't settle on a clear diagnosis, combined with insurance companies looking for any excuse to deny coverage, make for pressures above and beyond those of compensating for a loved one's mental lapses, dealing with his inability to remember appointments, and with the inevitable bouts of frustration and self recrimination, as every effort to stop the progression of the disease fails.
This book was published in 1995, and there have certainly been some improvements in how dementia is diagnosed and treated, as well as in the number of resources available to families and caregivers, but in the many books I've seen (I have a family member with dementia) none take you on the same kind of personal journey.
The patient is not "the patient"; he is Tom Murphy, still blessed with the same gift of gab, ability to charm the ladies, and tough-minded business acumen that wants the truth, warts and all, struggling to hang onto his wits against a foe every bit as determined as he is. The caregiver is not "the caregiver," she is Beverly, deeply in love with a man who, day by day, is slipping away from her, and she's not letting it happen without a fight.
Assumptions about how families will behave in the absence of a living will and medical durable power of attorney, set well in advance, play out as grown children, fearing loss of an expected inheritance, hire lawyers to wrest control of Tom's care from his wife, letting the reader fully understand why these issues are critical, and how, when they aren't addressed, the caregiver's job becomes so much more disheartening and wearing.
It all sounds depressing, but oddly enough, it's not. At it's core, it is a celebration of a soul, determined to love life as long as possible, and a caregiver willing to fight to let him do as much as he can do for as long as he can. It is a love story, complete with romantic lyrics from the big band and musical shows of the 40's, and the impact of the story is such that I seriously doubt I will ever hear those songs again without thinking of Tom and Beverly.
This book speaks to the art and creativity of caring for dementia-related illness in a unique way and deserves a much wider audience. Beverly Bigtree Murphy is a rehabilitation counselor in her own right, and has used her skills to help other caregivers by putting together a website for those who wish to (or who, due to financial pressures, need to), care for Altzheimer patients at home. The issues that are hard to find help for: ethical considerations, practical tips for daily life, and even assistance on how to deal with incontinence and adult diapers, are all found at: bigtreemurphy.com
The publisher (who's uncle contracted Altzheimer's shortly after the book was published) assures me that the tips and help from this website were invaluable as she herself took on the task of being a caregiver.
If Altzheimer's runs in your family or you know someone who's had a closed head injury, or whose medications are strong enough to cause dementia (late stage Parkinson's is just one example), this book will give you a perspective on how life feels from the viewpoint of the person struggling to keep their life from slipping away, give you tips on what not to do, and help you find the strength of spirit to deal with the unthinkable, while still managing to smile from time to time.
The publisher has reserved a limited number of copies of this book (seconds) which are available for free to those struggling financially who are home caretakers for Altzheimer and dementia sufferers. Please send email to me (Gabriella Wheeler) at firstname.lastname@example.org, and I'll make arrangements to get a copy sent to you.