The need for caregiving guidance has increased given the aging population, individuals dealing with multiple chronic health conditions, and, most recently, the fear many expressed who do not want to risk care in a skilled care facility or nursing home due to COVID-19. Spouses, children, friends, and others are coming together to support loved ones.
Most of these individuals have not been faced with addressing the physical, psychological, and condition-specific needs of the loved one. Access to care and services now may be more limited, resulting in the need for additional caregiving resources.
Caregiving books have been on the market for a long time. Recognize that new resources, regulations, and care approaches have changed.
Often these advancements and adjustments in care are based on what has been learned over time, termed “best practices.” Most caregivers have little extra time for reading about caregiving yet need trusted information.
Make your reading choices carefully; ensure that the book selected addresses the particular area of guidance that is most needed. Don’t judge a book by the cover!
Time Tested Resources
1. They’re Your Parents, Too!: How Siblings Can Survive Their Parents’ Aging Without Driving Each Other Crazy
by Francine Russo (2010)
Sibling rivalries resurface during difficult times. There is nothing more challenging than navigating the care of parents. Addressing basic care needs, trying to honor and respect wishes when they are not defined, or there is disagreement with parental preferences.
Helpful family negotiation techniques are shared by a veteran journalist. Along with guidance from multiple professionals who work with the aging population. The sharing of various scenarios provides practical and relatable guidance.
2. Chicken Soup for the Soul: Family Caregivers: 101 Stories of Love, Sacrifice, and Bonding
by Joan Lunden and Amy Newmark (2012)
The stories provide encouragement and support from others who have walked a similar journey. Each of the stories provides a unique perspective, a bit of advice, and inspiration for getting through the day. Relevant for those caring for a loved one at home or in a facility.
3. The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss, 6th Edition
by Nancy L. Mace, MA Peter V. Rabins, MD MPH (2017)
A comprehensive resource written by those who treat, and care for individuals with memory loss. Additional insight is provided by individuals’ actually experiencing dementia.
The 36-hour day offers a perspective of how care needs change over time, addressing the various unique issues associated with managing a loved one losing independence, inappropriate behavior, needs to be kept safe, all coupled with other medical conditions.
The importance of self-care for the caregiver is stressed, with practical suggestions offered, well-indexed, and information is easy to find.
4. Living With Dying: A Complete Guide for Caregivers
by Jahnna Beecham and Katie Ortilip, RN, LCSW (2017)
The authors acknowledge that a terminal illness never comes at an ideal time. They walk you through the journey of caring for a loved one with a terminal illness, addressing the range of emotions and issues encountered.
Practical information is clearly presented with “key concepts” highlighted to grab your attention. The detailed index makes finding information easy.
Related: 10 Best Books on Understanding Death and Dying
5. The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
by Linda Abbit (2017)
A geriatric care veteran shares her caregiving approach for seniors. Addressing the physical and emotional aspects associated with changes in roles. Mindfulness is stressed throughout as the critical aspect of conscious caregiving; practical tips provided.
Self-care is vital to successfully manage the caregiving journey.
6. The Family Caregiver’s Manual: A Practical Planning Guide To Managing The Care Of Your Loved One
David Levy, JD (2016)
The elder attorney author notes that 85% of care needs are routine, and can be met by the unpaid family caregivers. Home is where most individuals are comfortable and want to be, and it may be a necessary care location due to financial constraints.
The reinforcement of the need for a positive attitude towards caregiving is critical. Resources to guide and support are provided along with the importance of building a realistic are plan. The importance of surrounding yourself with supporters and helpers is critical for self-preservation.
Many forms and tools are included to document (medical, social, financial, property, electronic) key pieces of information, and ensure clear communication between caregivers.
Authored by a corporate diversity and inclusion leader who cared for her mother. The unique set of barriers encountered by African American caregivers is addressed with approaches to successfully master caregiving. The quick-read, conversation-style writing is easy to follow, and is very relatable. Basic content is helpful to all caregivers.
8. Honoring Aging Parents: How to Grow Up When Mom and Dad Grow Old
by Klaus Dannenberg, Bruce Black (2017)
Real life examples are used throughout, illustrating that there are many universal situations when addressing the issue of dealing with aging parents.
A Christian perspective, combined with advice gained through their experiences, along with professionals who helped guide their caregiving journeys. Lessons learned the hard way are shared along with the emotional rollercoaster experienced by caregivers.
9. A Husband’s Guide to Hands-On Caregiving: Hard-Earned Lessons for Men—and Women—Caring for a Loved One at Home
by Patrick Palmer (2017)
Caregiving from a loving husband’s perspective helped his wife, a 10-year breast survivor, then diagnosed with an aggressive brain tumor; shares their journey and lessons learned. A clear and concise resource, chronicles actions taken to ensure that his wife was cared for appropriately.
He reveals the range of emotions experienced, actions to be taken to prepare financially for caregiving, and self-care approaches. As a tribute to his wife, he chairs the Angela and Patrick Palmer Research Fund for Brain Cancer, at Dana-Farber Cancer Institute.
10. Farewell: Vital End-of-Life Questions with Candid Answers from a Leading Palliative and Hospice Physician
by Edward Creagan, MD (2018)
A book designed by an experienced medical oncologist, and hospice and palliative care specialist at the Mayo Clinic. The text should be used at the bedside to help navigate through the end-of-life questions most frequently asked.
Intended to lift the veil of darkness, and provides practical approaches, answers, direction, and guidance to how best to spend the last few days with a loved one. Scenarios are shared to help illustrate key information.
11. Things I Wish I’d Known: Cancer Caregivers Speak Out – Third Edition 3rd Edition
by Deborah J. Cornwall (2016)
A three-time cancer survivor shares personal insights to guide others. Through inspiring, informative, practical, encouraging and supportive approach; this resource is for those dealing or caring for someone with a cancer diagnosis.
One does not know what they do not know! Dealing with a cancer diagnosis has its own set of challenges that are well addressed, and the importance of doing your own research is stressed.
12. Making Tough Decisions about End-of-Life Care in Dementia (A 36-Hour Day Book) 1st Edition
by Anne Kenny, MD (2018)
This guidebook, written by a physician specializing in the care of the elderly, routinely deals with end-of-life decision making. Inspired by personal and professional experiences, includes scenarios that help to clarify, and engage.
The diagnosis of dementia highlights the need for advance care planning, and truly looking at keeping your loved one comfortable, minimizing procedures and hospitalizations.
13. Stillpoint: A Self-Care Playbook for Caregivers to Find Ease, and Time to Breathe, and Reclaim Joy Second Edition
by Sheila K. Collins, PHD, Christine Gautreaux, MSW (2018)
A mother’s insights into providing care for her two adult children with life limiting diagnoses; shares that self-caring and self-healing are an essential part of a dance crucial to caregiver survival.
She hopes the reader will become inspired for their “own self-discovery and recovery.” The body-mind connection and body mechanics are stressed as key factors in self-care and healing for caregivers. An insightful resource for self-care while caregiving.
14. Toolkit for Caregivers: Tips, Skills and Wisdom to Maximize Your Time Together
by Deidre Edwards (2019)
A practical resource helping guide one through setting up the environment for caregiving includes photos and descriptions for how to provide care, especially valuable for those who are new to caregiving.
Guidance and support provided through the end of the caregiving journey, along with tips needed to sustain one’s self. The Registered Nurse and educator author, shares her experiences in caring for her husband.
15. The Art and Science of Caregiving: Stories of Inspiring Elders with an End-of-Life Guidebook
by Annelise Schinzinger (2019)
The professional hospice caregiver and death doula, shares stories and encounters. She provides action points as a guide, and resource to end-of-life care.
Lessons in kindness, struggles, and joy, highlight the experiences faced. The book provides guidance to honoring a loved one and is especially valuable to those struggling with end-of-life care.
Takes a lighter approach, and uses dark humor to address the difficult subject of aging. As an only child, she finds humor and heartache in caring for her elderly parents, cataloging each of the aging challenges her folks encountered.
The sentimental book recounts a daughter’s relationship with her parents over an extended time period. For those that hail from the NYC area, they will connect, and chuckle along with the read. Written by an award-winning cartoonist, and selected as one of The New York Times Book Review’s 10 Best Books of 2014.
New for 2020:
1. The Caregiver’s Encyclopedia A Compassionate Guide to Caring for Older Adults
by Muriel R. Gillick, MD (2020)
Guidance provided by an experienced geriatric physician, and author, arranged in a “travel book” format by site of care. Dr. Gillick provides professional insights on Medicare coverage, geriatric care, specialized programs, addressing family matters, and how to explore the most appropriate sites for continuing care.
The book is heavily weighted towards the medical aspects of caregiving, focusing on placement, and end-of-life decision making. This is not a geriatric textbook, rather a practical reference book.
Many resource tools are included to help you assess, and understand the impact of activities of daily living, depression, and mental status so that you have a better perspective of current and potential future care needs.
Written by an oncology certified nurse, published by the Oncology Nursing Society, provides caregiving guidance to those struggling with the “new normal.” The resource focuses on supporting caregivers from the perspective of an individual who has been a family caregiver (to her father and husband), and a nursing professional.
Practical solutions to the issues encountered in family caregiving are shared. Research and relevant quotes are infused, helping to illustrate key points, and remind the reader that they are not alone on this journey.
Well researched science and methods are the basis to bring meaning and joy into caring for loved ones with dementia. Explores “meaning-making” and creativity, shares personal and professional experiences to enriching and surviving the dementia caregiving process.
Notes for caregivers include great conversation openers, listening strategies, and ideas to help you stay connected to your loved. She helps caregivers find meaning and purpose in their role.
Written by a senior, with a unique perspective to share, providing helpful advice for those caring for golden-agers. He shares personal caregiving challenges along with highlighting recent medical advances. His advice is practical and easy to read.
Olesky also imparts insights to refining caregiving skills, addressing managing the nursing home visitation process, and home safety. Co-author Avis Carlson shares some of the challenges and freedoms of aging. The extensive Table of Contents provides a nice overview of topics covered.
5. The Caregiver’s Companion – A Christ-Centered Journal to Nourish Your Soul
by Debra Kelsey-Davis & Kelly Johnson (2020)
The authors approach caregiving as an “opportunity to grow and receive blessings.” Debra Kelsey-Davis, a nurse who seeks to improve health and spiritual wellbeing of caregivers.
This caregiver focused book is filled with beautiful illustrations, lightly shaded pages, practical self-care resources, encouraging readings, quotes from scripture, and guided journaling. The book’s co-author Kelly Johnson is the adult faith formation director who cared for her then-five-year-old son when he developed a brain tumor.
6. Caregiver Success – How to be a successful caregiver by learning tips and tools from an experienced nurse practitioner
by Ann Rhodes FNP-C (2020)
Written by a family nurse practitioner with extensive homecare experience, believes that “pictures speak louder than words” is intended to guide caregivers and health professionals about homecare. It covers common issues that individuals may encounter, along with pictures to better guide the homecare experience.
Written by the Chief Administrative Officer of Mount Zion Baptist Church, co-founder of the Welfare Reform Liaison Project, caregiver, and caregiver radio show host who has worked to connect non-profit caregiving agencies.
Reverend Cleveland writes of his family’s experience providing care for his elderly mother. He provides practical advice about working with siblings, and how to acknowledge the pain and challenges encountered during prolonged caregiving.
The traditional resource is a compilation of information from a variety of professionals including rabbis, lawyers, physicians, and caregivers on addressing the various aspects of caregiving.
Included is a guide in both English and Spanish designed for aids to acquaint them with considerations for working in a traditional Jewish home.
How to pick a book
There are many wonderful books available, before making your purchase, be sure to spend a few minutes identifying what would be most helpful to you. Ensure that the book you select will be easy to read, helpful, and not become a door stopper.
Ask yourself:
- What type of information are you looking for? What information is important to me?
- What’s my current level of knowledge?
- What’s important to me know?
- Providing care
- Addressing a concern
- Planning for the future
- Physical or Alzheimer’s/dementia/cognitive/behavioral issues?
- Managing caregiver stress?
- Navigating the healthcare system?
- Memoire
- Consider the background & credentials of the author
- Check out the Table of Contents
- Review sections of the book that may be available on-line
- Who is providing the book forward? What are they saying?
- Check out the author’s website for additional information and excerpts
- Practical and easy to read
- When was the book written? Is it current? Depending on the particular need, 5-years is a good time span, unless you are looking for legal or insurance-related information
- Faith-based or mainstream?
- E-book or hard print? Consider the ability to access “just-in-time” information quickly
- Space for notes & journaling
- Self-published – a quick way to bring content to the audience
- “Sponsored” book on an internet search