There are plenty of books about aging and eldercare, and more new titles crowd the bookshelves daily as authors discover the caregiver market. Unfortunately, not all writers are knowledgeable about these topics, other than superficially. 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.
When you choose books not on my recommended list, I suggest that you look up the author's background and check for education and experience in the field of eldercare, gerontology, aging, or caregiving. One person's experience with their parents does not an expert make!
If you discover a book that is helpful to you, please send me the name and a brief description. I'll post it here so other caregivers do not have to spend as much time researching. Thanks!
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. http://www.cloudtownsendstore.com/boundariesbook1.html
Coping in New Territory: a Guide for Children of Aging Parents, S. Roberts. This is a quick read with some solid information about Eldercare, and how to take care of ourself in the process. http://www.suzanneroberts.net
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
How to Care for Aging Parents, Virginia Morris. I used this book as a text when I taught a course in Caregiving at Southwestern Medical School. It is a Complete Guide to many aspects of Eldercare. The book has a forward by Robert Butler http://www.careforagingparents.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. A manual for dealing with uncooperative, manipulative, difficult older parents. http://www.elderrage.com
***Love you Forever, Munsch. My daughter brought this book home from kindergarten and read it to me. She was dumbfounded when I burst into tears. This is possibly the most beautiful story about caring I've ever read. I read it to my my caregiving classes. http://www.rogerknapp.com/inspire/loveforever.htm
Silverstone & Hyman. This is a classic book. Frist published in 1976, it was the first to examine the complex relationship between older adults and their adult children, now caregivers. The book is now in its 4th edition, the most recent in 2008. The issues remain the same as they were 30 years ago.
http://webmedbooks.com/rush/content/productdetail.aspx/upc=280dbd37-415f-48cd-9d81-a452fe652cc4/sid=795c96eb-98c4-4c60-9dd6-4f68c098ce6f/
Heirlooms and Legacies
These books are mostly blank with illustrated pages. They are meant to be an heirloom, memories of one generation passed on to the next. Each page prompts a particular memory, such as early childhood toys and friends, elementary school, first loves, early marriage, and others.
One of my favorite clients completed a book for her first grandchild. Later she developed dementia and lost many of her memories, in the late stages, she lost even her early memories. Her family and caregivers made copies of the book and read pages to her. It was remarkable to see her face light up as her forgotten childhood memories were brought back to her.
I gave a similar book to my mother for Mother's Day. After she died, I found it, still blank, in a drawer. I have been given several of these books, and all of mine remain empty, too. I suggest that YOU, the caregiver and adult child, buy a book for yourself. Keep it with you, and take it with you when you visit. Ask about a topic on one of the pages, and write the replies. In this way, you will not risk having an empty book of memories.
Look for these and other similar books on Amazon, or in the children's sections of book stores.
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.
Grandmother Remembers Songbook, J. Levy and J. Pelikan
Terminal Illness and Dying
***A Death Prolonged, Jeff Gordon, M.D. A story that attacks end-of-life myths which cause needless suffering and financial waste. The small book attempts to anwers real life issues that code status (DNR), living wills, and the excessive costs of terminal illnesses that lead to more fruitless suffering by dying patients. http://www.adeathprolonged.com
Hard Choices for Loving People, Hank Dunn. Whether the decision is about CPR, artificial feeding tubes, hospice, living wills, nursing home placement, ventilators or dialysis, these decisions can be difficult. This book gives families hard information and some guidance about related topics like bioethics, death and dying, and the emotional and spiritual issues surrounding the end of life.http://www.hardchoices.com/about_hc.html
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. A beautiful little book to read to children about death, and also a comforting book for caregivers for frail and elderly. The story normalizes the experience of death as one that should not be frightening but one that is expected and honorable.
Time Remembered: a journal for survivors, Grollman. As the title implies, this is a book for journaling feelings and memories as the survivor processes the loss of a loved one.
Dementia and Alzheimer's Disease
Dementia has at least 100 different causes. Alzheimer's is only one of the dementias. Most are very similiar in the way they progress. Reading about Alzheimer's is a good way to prepare yourself to be a better caregiver for care receivers with other forms of dementia.
**The 36 Hour Day, N. Mace & P. Rabins, now in the 4th edition. Thank goodness for this book that helps thousands of bewildered caregivers find their way through the mysterious disease that is Alzheimer's. This book is REQUIRED reading for every dementia caregiver. My father was diangosed with "old Timer's disease" in 1983. I'd never heard of it, and neither had anyone I spoke with about it. This book was already there and waiting for me, to let me know that what my dad and I experienced was not unique, and offer insights in how to cope.
**Coping with Alzheimers, Rose Oliver & F. Bock, a guide to coping with dementia behaviors. When someone you loved has been diagnosed with dementia, one of the facts is that at some point this wonderful person will make poor decisions and probably display some negative behaviors. If dad pees on the potted plants and you are horrified, who is being irrational? When you know that dad is going to do something awkward and you are the one who is upset, then you are the one who needs to sit back and re-consider your reactions. This book helps you anticipate and change your reactions to normal dementia behaviors.
Aging with Grace: what the Nun Study is teaching us about leading longer, healthier, and more meaningful lives, by David Snowdon. This book is about the famous ongoing study of nuns. It makes fascinating reading.
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. http://alzstore.com/Alzheimers/the-complete-guide-to-alzheimers-proofing-your-home.htm
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 and Read Aloud
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.http://books.simonandschuster.com/I%27m-Too-Young-To-Be-Seventy/Judith-Viorst/9780743267748
**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’.