Becoming a caregiver can be daunting.
A new diagnosis can make your head whirl with questions on the mental changes and attitude shifts that occur when a person contracts a major disease, about how you’ll learn all you need to about senior care, how you’ll keep living as yourself, how your relationship will change with the person you’re caring for, and more. You won’t be alone, either. The AARP and National Caregiving Alliance report that nearly 50 million people in the U.S. are caring for older adult loved ones.
I’ve assembled this list of books because they helped me either when I was caring for my parents, or since, in my work with other families coping with the challenges of senior care. My hope is that this will be a good starting place for you—a list of reliable, valuable resources—that can ease the caregiving tasks that lie ahead.
Dementia care is much more than basic senior care. Caregiving for dementia means you will be faced with variety—your loved one’s abilities will vary day by day. Successful strategies of today may fail tomorrow. I suggest gathering tools from many sources to better meet your loved one’s evolving needs.
- “The 36-Hour Day,” by Nancy Mace and Peter Rabins, is a classic, straightforward source for basic information on dementia and dementia care. It gives you good tools for handling daily care and managing the resulting changes to a person’s thinking which often stem from cognitive decline. It also addresses life planning and how to get support for yourself and the supplemental care you may need for your loved one as their disease progresses.
- ” A Dignified Life: The Best Friends™ Approach to Alzheimer’s Care; A Guide for Care Partners,” by Virginia Bell and David Troxel. I liked the authors’ positive philosophy for dementia care, especially their gentle understanding and common sense problem solving. You’ll find practical ideas for creating frameworks for activities and daily living. The authors recognize life is about more than the mechanics of day to day things humans do (e.g., eating, bathing, walking around), and that everyone needs to find meaning. Learn how “The Best Friends™ Approach” helps both patient and caregiver proceed through dementia’s course with dignity and peace of mind.
For late stage dementia care and/or for when a person needs extensive physical assistance:
- “The Handbook of Live-in Care, A Guide for Caregivers,” by Kathy Johnson, Jim Johnson and Lily Sarafan, offers practical advice for helping a person stay in the comfort of their own surroundings and maintain maximum independence. In addition to how-to information on daily living tasks like bathing, feeding, oral care, and transfers, the authors discuss empowering your loved one to a greater sense of control and purpose. Research has shown older adults who retain a sense of purpose and dignity ultimately have a greater sense of well-being, regardless of a chronic condition, frailty, or forgetfulness. This book is about helping your loved one have the best possible quality of life. (This book is part of Home Care Assistance’s Wellness Series)
Just like planning for any phase of life, you need a strategy for the caregiving phase—for senior care.
- “Harvard’s Caregiver Handbook,” from Harvard Health Publications, provides a brief, but valuable overview of the issues caregivers must address. From organizing daily caregiving tasks to lists of needed financial, legal and medical documents to a guide for self-care, this guide’s information, resource lists, and tips show you the overall landscape of modern caregiving. It’s a printable, 50-page pdf available via health.harvard.edu.
- “How to Care for Aging Parents,” by Virginia Morris. This book lives up to its billing: “A One-stop Resource for Medical Financial, Housing and Emotional Needs.” ABC World News called it the “bible of eldercare” and The Washington Post described it as, “a compassionate guide of encyclopedic proportion.” Both are true, in my opinion. You’ll find everything from the latest technologies which can help your parents “age in place”, lists of resources, scenarios and solutions to common adult child-older adult parent wrangles, and useful fill-in charts for tracking doctors’ appointments, medical history, and medications. Whether you’re at the beginning of the caregiver role and trying to decide if you parent needs your help or you need to plan a funeral, the common sense answers are in this easy to read book.
Experiencing a tough time caring for parent because your parent is ____________?
(pick one or more: controlling, emotionally needy, blaming, hostile, unreasonably demanding)
Sometimes relationships between generations were never good because of your parent’s personality or problems with depression, for example. The challenges of the older adult years can make formerly manageable character traits grow into extreme tests of patience, love and perseverance for the adult child caregiver.
Note: Do not use this book with someone who has dementia. Since a parent’s behavior could be related to cognitive decline, review the Alzheimer’s Association’s “The 10 Early Signs and Symptoms of Alzheimer’s.” If you suspect dementia, encourage your parent to seek a medical evaluation.
- “Coping with Difficult Parents,” by Grace Lebow and Barbara Kane shows you how to handle your parent’s particular problem behavior with realistic examples and responses. From co-author Grace Lebow:
It did not take long for us to recognize that well over half the adult children who came to see us for counseling were in a state of stress over their “difficult parents.” They used the word “difficult,” not so much because of the physical burden of caring for parents in a state of decline, but because of the emotional drain of trying to help parents who were hard to help. In many instances the adult child had distanced himself from his parents either geographically or emotionally. But now that the parent was suffering from the ravages of old age, the child could no longer escape. In the intervening years we have helped thousands of such clients with their difficult parents.
Be sure to read the introduction, which explains the authors’ philosophy and how to use the book.
Humor and Caregiving:
- “Can’t We Talk About Something More Pleasant?” by Roz Chast. The author is famous for wry wit and ably applies it to the challenges of caregiving for older adult parents. Using cartoons, photos, and documents, she takes us with her on the sometimes funny, sometimes teary journey with her and her aging parents. The bottom line is, the challenges of caregiving are eased with comedy and understanding. This memoir is worthy of your precious attention. It may show you how to move through tough times to reach the tender ones.
Surviving caregiving requires many more elements than could be mentioned here. Disney said it the best: “The way to get started is to quit talking and begin doing.”