There are plenty of books about caregiving, but not all of them are written by someone who is knowledgeable. The books listed here are those I believe are written by authors who are experts in their fields. I have found these books helpful. Those that are starred ** are highly recommended reading for most caregivers.
Books are arranged in categories beginning with general aging information, legacies, death & dying, Alzheimer's, and others.
General
***Boundaries, Cloud & Townsend, how to set limits. This is highly recommended for those who are having difficulty saying NO to mom, and caregivers who are burning out because they are trying to do it all.
Coping in New Territory: a Guide for Children of Aging Parents, S. Roberts
*Ethical Wills, by Barry K. Baines. This book is a guide to the process of writing and sharing an ethical will, a document designed to preserve a lasting legacy of your most cherished personal values. An ethical will bequeaths values, ideas, and personal reflections to family members and other loved ones. http://www.ethicalwill.com
It Shouldn’t Be This Way: the failure of long term care by Robert Kane, M.D. & Joan West.
Dr. Kane is a nationally known geriatrician who specializes in studying the delivery of long term care services. You would think he would be able to insure the very best care for his own mother. However, when his mother suffered a stroke in 1999, Dr. Jane and his sister Joan West experienced the same frustrations common to most adult children who are providing care for frail parents. They label the long term care system in the U.S. a “national disgrace.”
Kane and West tell their story in this book, and share the lessons they learned along the way. Their hope is that reading it will help prepare other adult children for what they are likely to face as caregivers. The book includes practical suggestions on how to approach frequently encountered problems.
They conclude that there is no way to adequately prepare for the challenges of caregiving because the system is basically unworkable. Therefore the intention of this book is to promote activism is improving the way long term care is provided. There should be a better way!
**My Mother's Hip, Margolies. Review by Kay Paggi
Margolies is a professional writer, anthropologist, experienced observer and researcher; all of her professional abilities are used in this masterfully crafted book. What makes this book remarkable is Margolies’ exhaustive research into the American medical system, as it concerns patients in later life. The picture she draws is of a system that is out of control and probably unfixable.
Margolies became an active caregiver when her mother broke both hips; she also assumed care for her father, who had a severe heart condition and declining cognitive function. The book alternates between narrative chapters describing events chronologically and chapters detailing statistics describing the chaotic system of elderly patient treatment common in the United States today.
Hip fractures are labeled as the “silent killer”; 27% of older adults who fracture a hip die within one year. The mortality risk rises after the acute hospital stay. Only 25% of elders who have hip-fractures in the U.S. will return to the level of independence they had before the fracture. In contrast to this figure, in Northern Europe 76% of hip fracture patients regain their prior level of independence. The difference appears to be due to American medical emphasis on the initial acute phase with less importance given to rehabilitation. Co-coordinated services based on the individual patient’s needs, both during and after hospitalization have been proven to improve the likelihood of complete recovery.
Statistics on osteoporosis and Hormone Replacement Therapy (HRT) are disturbing. Every 10 years, we get a new set of bones, as old bone is reabsorbed and new bone built. Most women take estrogen replacement therapy for a few years following menopause to prevent post-menopausal bone loss. What is less well known is that as soon as a woman stops hormone therapy, her chances of hip fracture are the same as if she had never taken it. Estrogen withdrawal is followed by accelerated bone loss. To maintain strong bones, women must continue lifelong hormone replacement therapy. Unfortunately, estrogen is a known carcinogen, and those who take HRT also are at higher risk for heart attacks and strokes. Each additional year of use increases these risks.
Margolies’ chapter on the psychological impact of chronic conditions is insightful, and should be required reading for all caregivers. Seven of ten care-receivers have a chronic condition that is progressive and incurable. People who have a chronic disability are not sick, but they are not well, either. These permanent conditions affect every aspect of their lives, where they go, how they get there, what they do, and how they interact with others. Paradoxically, medical technology has extended life span without developing cures or treatments for chronic maladies that accompany old age.
The majority of caregivers are women who provide care an average of 3 hours every day, and have been fulfilling this task for more than 5 years. Most caregivers still view nursing home placement as a failure on their part. Daughters tend to view caregiving not as a discrete set of tasks, but as an unending responsibility that grows out of their feelings of “connectedness”. They are more likely than their brothers to go along with the fiction that ‘everything is fine’ as a way of preserving parental dignity. Daughters view the continuing decline of a parent as somehow their fault, and suffer intense guilt. Those who have been close to their mothers are particularly affected, and tend to view their parent’s aging as a foreshadow of their own. Margolis points out that a parent’s ongoing decline is not due to any failure of the caregiver but rather a failure of the medical system.
When Mom and Dad Grow Old: Step-by Step Planning for Families and Caregivers, Helen West-Rodriquez and Carolyn Dennis, $22.95, available online at www.amazon.com and at the First Unitarian Church of Dallas bookstore. This helpful book has check lists and blank pages for planning ahead.
Elder Rage – or – Take my Father…Please!, Jacqueline Marcell
*Love you Forever, Munsch
You and Your Aging Parents, Silverstone & Hyman
Heirlooms and Legacies
Something to Remember Me By: A Story About Love & Legacies by Susan Bosak and Laurie McGaw
Grandmother's Memories To Her Grandchild, T. Kinkade
Grandmother Remembers: an Heirloom for my Grandchild, Levy. This is a blank book for journaling
Grandmother Remembers Songbook, J. Levy and J. Pelikan
Death and Dying
**A Good Death: Challenges, Choices and Care Options, Charles Meyer
Talking about Death Won’t Kill You, Virginia Morris
This book is about what happens when someone is close to death. Often directives of older adults are ignored, sometimes due to a misunderstanding of what ‘extraordinary measures’ means. This is a clear eyed look at the implications of care in near death situations.
Tuesdays with Morrie, by Mitch Albom, Also available in audiobook and on video with Jack Lemmon. Highly recommended, interviews with a dying man about what is truly important
*The Fall of Freddie the Leaf, by Lee Buscaglia
Time Remembered: a journal for survivors, Grollman, A very helpful book as one processes the loss of a loved one.
Alzheimer's Disease
**The 36 Hour Day, N. Mace & P. Rabins, caring for dementia victim - This book is REQUIRED reading for every dementia caregiver
**Coping with Alzheimers, Rose Oliver & F. Bock, a guide to coping with dementia behaviors
Aging with Grace: what the Nun Study is teaching us about leading longer, healthier, and more meaningful lives, by David Snowdon
The Complete Guide to Alzheimer's-Proofing Your Home, Mark Warner
Loving care at home is difficult to accomplish. Warner's thoughtful book aims to help by showing how to make a home more navigable, comfortable, and just plain livable for the Alzheimer's patient.
Living in the Labyrinth, D. McGowin, This is the first book written by a patient with Alzheimer's. A look into the disease from the insider's view.
Humor
Forever Fifty, Suddenly 60, I'm Too Young To Be Seventy: And Other Delusions, by Judith Viorst
I love these witty poems about turning thirty, forty, fifty, and sixty. Now there is a new volume for the woman who deeply believes she is too young to be seventy, "too young in my heart and my soul, if not in my thighs." Viorst explores the state of our sex lives and teeth, how we can stay married though thermostatically incompatible, and the joys of grandparenthood and shopping. She makes a few helpful suggestions to her kids because "they may be middle aged, but they're still my children." Viorst’s poems are full of the pleasures of life right now, helping us come to terms with the passage of time, encouraging us to keep trying to fix the world, and inviting us to consider "drinking wine, making love, laughing hard, caring hard, and learning a new trick or two as part of our job description at seventy." I'm Too Young to Be Seventy is a joy to read and makes a heartwarming gift.
**My Middle-Aged Baby Book, Weisman, This is what I give all my friends when they turn 50! It is no longer in print, but you can special order it on Amazon.
OTHER RECOMMENDED READING
Berman, Phillip & C. Goldman, The Ageless Spirit: reflections on living life to the fullest in our later years, Vignettes about aging written by celebrities.
Lebow, G, Coping with Your Difficult Older Parent, G. Lebow, & B. Kane
Zuckerman, R., Eldercare for Dummies, by Rachelle Zuckerman, Ph.D, review by Care Manager Dan Smerken
This handy book is an introduction to practical geriatrics; the standard ‘dummy’ format allows the reader to jump to the topic of concern without reading the book in order as written. Topics include “How to Care for a Never Thirsty Elder” and “10 Tests to Help you Assess a Nursing Home” and “10 Ways that Elders Hide their Feelings”. The functional assessment section guides lay readers in the basics of functional assessment and makes practical suggestions on how to address these deficits. There is also a section on tips for communicating with care receivers. The section on ‘Everyday Challenges’ includes tips on ‘How to spoon feed with dignity’.
Ethical Wills, by Barry K. Baines. This book is a guide to the process of writing and sharing an ethical will, a document designed to preserve a lasting legacy of your most cherished personal values. An ethical will bequeaths values, ideas, and personal reflections to family members and other loved ones. http://www.ethicalwill.com
The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own, Gary Barg, ed.
In this practical guide, the experts at Today's Caregiver Magazine tell you how to be an effective, fearless and informed caregiver for your loved one-and still have time for yourself. Gary Barg is Founder and Editor-in-Chief of Today's Caregiver Magazine
**My Mother’s Hip by Luisa Margolis is a critique of the American medical system using an elderly woman’s hip as the focus point. Highly recommended. Review by Kay Paggi.
Bortz, Walter, Living Longer for Dummies. Bortz is a past president of the American Society on Aging and co-chair of the American Medical Assn. Task Force on Aging.
Canfield, J & Hansen, Chicken Soup for the Soul, Great for reading aloud together
Carter, Jimmy, The Virtues of Aging
Harkness, H., Don't Stop the Career Clock!: rejecting the Myths of Aging
Ilardo, J. & Rothman, Are Your Parents Driving you Crazy?
A frank discussion of some of the issues adult children struggle with as their parents age.
Kushner, H., Living a Life that Matters: Resolving the conflict between conscience and success
Kondracke, M., Saving Milly: Love, Politics, and Parkinson's Disease, with a forward by Michael J. Fox
Kushman, H., When Bad Things Happen to Good People
Lerner, H., The Dance of Connection: How to talk to Someone when you're Mad, Hurt, Scared, Frustrated, Insulted, Betrayed, or Desperate
Lerner, H., Dance of Intimacy
how-to change a relationship and make it more comfortable
Lustbader, W. & N. Callendar, Taking Care of Aging Family Members: A practical guide
Maclay, Elise, Green Winter: celebrations of later life,
A book of poetry on such topics as finding one's glasses, recovering from the flu, memories, and more.
Manning, D., When Love Gets Tough: making THE decision: nursing home placement
Meyer, C., A Good Death: Challenges, Choices and Care Options required reading if you have a living relative.
Meyer, C., Surviving Death, how to go on living after the death of someone you love
Mitchner, James, Recessional. His final novel, set in a multi-level retirement facility
Morris,Virginia, How to Care for Aging Parents: a complete guide
(Kay's note: I used this as the text for the course I taught on Caregiving at UT SW Medical school)
Peck, Scott, A Bed by the Window. A murder mystery set in a nursing home, written by a well known pyschiatrist.
Pipher, M., Another Country. Marvelous description of how our parents were socialized differently than we have been
O'Hanlon, Bill, Do One Thing Different, Uncommonly sensible solutions to life's persistent problems
Roberts, Suzanne, Coping in New Territory
Roszak, T., Longevity Revolution
A discussion on the effects of having the majority of our population older, rather than younger. Covered topics include Roles for older adults, How to get older workers to retire, Aging and the media, and Lots More! One of my favorite reads.
Rowe, John & R. Kahn, Successful Aging, The results from a long term study of how people age.
Silin, P., Nursing Homes: A family's journey
Read about finding a nursing home, making the decision, and getting along with life in a facility at www.thenursinghomebook.com
Silverstone & Hyman, You and Your Aging Parents: now in 3rd edition
Suess, You're Only Old Once
Viorst, J., Necessary Losses, loss is necessary for growth
Warshofsky, F, Stealing Time: the new science of aging. Also available in video
Wexler, Nancy, Mama Can't Remember Anymore,
Written by a geriatric care manager, these are true stories of several families as they coped with an aging relative.
Dychtwald, Ken, Age Wave
How the increasing numbers of people over 50 will affect our economy, lifestyles, businesses, and more
Dychtwald, K., et al, Age Wave: How the most important trend of our time will change our future
Lebow, G. & B. Kane, Coping with Your Difficult Older Parent,
Marcell, J., Elder Rage – or – Take my Father…Please!
Eldercare for Dummies, by Rachelle Zuckerman, Ph.D, review by Care Manager Dan Smerken
This handy book is an introduction to practical geriatrics; the standard ‘dummy’ format allows the reader to jump to the topic of concern without reading the book in order as written. Topics include “How to Care for a Never Thirsty Elder” and “10 Tests to Help you Assess a Nursing Home” and “10 Ways that Elders Hide their Feelings”. The functional assessment section guides lay readers in the basics of functional assessment and makes practical suggestions on how to address these deficits. There is also a section on tips for communicating with care receivers. The section on ‘Everyday Challenges’ includes tips on ‘How to spoon feed with dignity’.