Book Review – Facing Alzheimer’s: Family Caregivers Speak
Most of my clients suffer from Alzheimer’s or other Dementia’s. I continue to be amazed by the powerful devastation and interesting mix of skills that coexist, side by side, in each patient. And I am in awestruck by the coping skills of families. To help them in their daily struggles, I welcome useful resources. Patricia Brown Coughlan’s “Facing Alzheimer’s Family Caregivers Speak” is now on my list.
Coughlan’s book grew from her work towards a Masters Degree in Interdisciplinary Studies/Gerontology at Sonoma State University, in California. Her book is based on two years of interviews with 8 caregiving female spouses from a Alzheimer’s support group in Santa Rosa, California. Coughlan chose to focus on women because “caregiving is something that falls most heavily on women.” Throughout her book, Coughlan does a beautiful job of weaving practical information and the caregivers’ personal stories. Her information is instructive, accurate and just right for families struggling with dementia.
The book’s underlying feeling can be summarized by an introductory quote: “What is the glue that holds a relationship together when one person in it has changed so drastically? I think it’s love. Love, affection, respect, and a feeling of what you have gone through together up to this time. A feeling that you have a responsibility to take it as far as you can.”
Couthlan starts with her own grandmother’s Alzheimer’s disease, explaining that after drinking a glass of wine, her grandmother “couldn’t find the way to her bathroom.” Next, Coughlin includes 9 steps of stages that families confront with dementia care. This starts with “Overcoming denial” and ends with “Adjusting to life after death of the patient.” The book’s chapter titles demonstrate its depth and range: “In the Beginning; Patients, Caregivers and Doctors; Managing Day by Day ; Decisions About Nursing Home Placement; In the Nursing Home; An Overview – The Basis of Coping; The Support Group, and Talking with Support Group Leaders.” The Appendices cover Finances, Legal Issues, and nationwide resources.
Tackling the thorny area of an Alzheimer’s diagnosis, Coughlan says “uncovering the medical causes of dementia in a given patient is not a simple task.” She explains patient histories, mental status tests, CAT scans, EKGs, lab tests, lumbar punctures, nutrition, and more. She is clear that CAT scans reveal brain tumors, head injuries, or strokes but cannot provide an Alzheimer’s diagnoses. This is important because it is not readily understood by most families.
The caregiver’s agonizing diagnostic searches may not be news to the seasoned geriatric care manager yet they are no less disheartening. What at first stands out is the patients’ youth: six in their fifties or sixties, one who was 48 and one who was 74. Mary’s spouse was given 22 electro-shock treatments before a CAT scan revealed a wartime brain injury. Irene’s doctor said, “Don’t bring him back, I can’t help.” She asked him, “Where do I go?” The doctor shrugged his shoulders. Bonnie’s doctor was a “brusque hustler” who explained, “With Alzheimer’s you have 3 Ps: Possible, Probable, or Positive. Positive is to take tissue from the brain and examine it – an autopsy.” And Helen, who said to her doctor: “I think I could tell you more about what’s wrong with him than you can tell me.”
My favorite chapter is Turning Points, best described by Mary who says “I was tough and practical. I became more tough and more practical.” But Angie’s story of personal empowerment is the best. When Angie discovered that a caregiver had stolen jewelry and a coin collection, she called law enforcement. The lackadaisical response was: (on a Thursday) “Just fire everyone; I’ll start to look on Monday.” So Angie hid in her closet with an unloaded gun, and waited. Finally she heard a caregiver tie up her husband and riffle through drawers. Unsure what to do, she “just threw that door open, and he jumped about 2 feet in the air.” Angie persisted until the thief was in jail and barred from further employment as a home care aide.
While this story is unusual, Coughlan believes it is a good example of what she calls an identifiable turning point — when “the accumulated frustrations, humiliations and losses reach a critical mass.” A lifetime of “being nice” changes to an attitude of control, guts and authority.
The only notable fault in this book is the typeface. The type is thick and the letters are slightly cramped. However, this book has so much to offer professionals and families, I highly recommend it.