Resources for the Caregiver and Health Professional

Books

Caregiving A Step-By-Step Resource for Caring for the Person with Cancer at Home by Peters S. Housts, Ph.D., and Julia A. Bucher, RN, Ph.D., c. 2000 by the American Cancer Society. This covers topics such as understanding caregiving, getting information from medical staff, emotional issues, making a plan, and when to get professional help. The pain management section is very helpful.

Caregiving: The Spiritual Journey of Love, Loss, and Renewal by Beth Witrogen Mcloud, New York, John Wiley and Sons, 1999, New York. This book talks about the caregiver's spiritual and emotional journey, the compassionate heart and the urge to care, as well as more practical matters. It has interesting stories and advice for spousal caregivers and for children of aging parents. It is a comforting book, and it helps a caregiver see the meaning and value of providing care to another human being. Chapter 8 and 9 address how to get through depression and the low points without committing suicide. Helpful action steps are provided.

Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir by Carol O'Dell, Published by Kunati, 2007. "Mothering Mother is not simply a how-to book on caregiving. Mothering Mother touches on what our relationships do to us, how they impact our souls, our beliefs about ourselves, about life and the quality of life, about faith and hope and finally, about death."

How to Say it to Seniors by David Solie. Prentice Hall Press, 2004. This book looks at communication with seniors and helps create a better understanding of the issues. As the author states, "the goal of (the book) is to help readers improve their relationships with this elder generation that deserves our best efforts in facilitating their compelling end-of-life tasks. By doing so, we have the privilege of retrieving a world that might be lost to us forever and enriching our lives in ways we can't imagine."

Caring for Your Parents: The Complete AARP Guide by Delehanty, Hugh & Ginzler, Elinor. Published by AARP, 2005. A guide to caring for aging parents that addresses issues and resources.

Staying Afloat in a Sea of Forgetfulness by Gary Joseph LeBlanc c. 2010. A book on Alzheimer's and dementia caregiving, based on the author's experience of being the primary caregiver for his father for nearly 10 years. He first addressed the need for information on "common sense caregiving" in a weekly column in the Tampa Tribune publication, Hernando Today. This book is "caregiver friendly" and includes vignettes on a variety of topics including the "triumphs and hardships" of "dealing with the disease of Alzheimer's and the world of memory-impairment."

Good Night, God Bless by Linda Burhans. Published by Breath & Shadows Productions, 2009. A book "filled with humor and heartfelt inspiration to aide anyone facing the challenge of caring for a loved one at the end of life. Her story offers us hope for human strength and understanding of weaknesses during a difficult time."

The Caregiver's Support Kit is available to caregivers at no charge from the National Caregivers Foundation by calling 1-800-930-1357. This book focuses on Alzheimer's but has good information for any caregiver. It comes with several extra goodies such as an audiotape of music and a medication minder pill box.

How to Care for Aging Parents (A Complete Guide) by Virginia Morris and Robert Butler, Workman Publishing, New York, c. 1996, is a comprehensive resource guide with special tips in boxes, information on topics from "getting" set" (preparing for caregiving) to "in the end." This book even explains what to expect when you are in the room with someone who is dying, and the section on grieving is good.

The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers by Maria M. Meyer with Paula Derr, RN, Care Trust Publications, Portland, Oregon, c.1998, won 1999 Benjamin Franklin award in health category - useful and practical, with big print and drawings of caregiving situations and assistive devices (how to arrange furniture to accommodate a wheelchair, how to transfer from bed to wheelchair with and without a transfer belt). Besides giving hands-on care instructions, this book has information such as tax strategies for caregivers.

Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive by Claire Berman, published by Henry Holt and Company, Inc., c.1996, 2001 - this book addresses emotional needs and stresses of caregivers, has a good explanation of adult/child and sibling feelings, nice long distance caregiver section, rewards of caregiving as well as reasons some people should not become hands-on caregivers.

The Complete Idiot's Guide to Caring for Aging Parents by Linda Colvin Rhodes, Ed.D., published by Alpha Books, a Pearson Education Company, Indianapolis, IN, c. 2001, is one of those complete idiot's guides to how to learn anything. If you can get past the title, this book has simple, up-to-date information and wonderful tips in little boxes called, "senior alert," "geri-fact," "sage source," and "silver lining." There is a good explanation of how to hold a family meeting to discuss sharing the caregiving responsibilities.

The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own by Gary Barg, Editor, c. 2001, published by Capital Books Inc., Herndon, Virginia. This book has information from experts, is readable, has celebrity caregiver interviews, poetry, etc. It's for all caregivers, not just for children of aging parents. It is a collection of writing by various writers, many of them caregivers, so it is not a comprehensive information book. It is enjoyable and comforting. This book, edited by the editor Today's Caregiver Magazine, is available from booksellers or visit Today's Caregiver Magazine web site, www.caregiver.com

The Complete Guide to Alzheimer's Proofing Your Home by Mark L. Warner, c. 2,000 by Ageless Design www.agelessdesign.com, Purdue University Press, West Lafayette, Indiana. This book is packed with information, diagrams, and black and white photographs. Each chapter lists resources in the wide margins, and there is a huge listing in the back with addresses, toll-free and regular numbers, and the types of products sold. All types of problems - behavioral, activities of daily living, thinking-related issues, incontinence, mobility, and more are explained and helpful ideas are given. The book shows unusual products like a platform lift where there isn't room for a ramp and simple ideas such as an brightly colored electrical tape path on the floor from bedroom to bathroom. Some of the ideas and products look useful for stroke and other conditions besides Alzheimer's.

Helping Yourself Help Others by Rosalynn Carter with Susan K. Golant, c.1994 by Times Books, a division of Random House, New York. This book is older than some, written after surveying the needs of caregivers in the area near the Rosalynn Carter Institute of Georgia Southwestern College. This was one of the first books to talk about the "crisis in caregiving in America," but it is written in a warm and personal style beginning with stories about Former First Lady Carter's mother, who was a life-long caregiver. The book includes other interesting stories, and recommendations for what America needs to do to improve the lives of caregivers still hold true today.

Making the Moment Count: Leisure Activities for Caregiving Relationships by Joanne Ardolf Decker, John Hopkins University Press, c.1997. This book offers ideas for how to use short increments of time for leisure activities to lighten the load of caregiving.

Failure-free Activities for the Alzheimer's Patient by Carmel Sheridan, Dell Books, c. 1995. This book offers simple activities which are enjoyable for both caregiver and care recipient.

Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers by Family Caregiver Alliance, c. June, 2006. Copies are available at www.caregiver.org

The Circle by Sally Smith. A personal account of the emotional and human side of dealing with dementia. The authour has donated the proceeds of sale as a gift to the Medical University of South Carolina to raise awareness and support for research into Alzheimer's disease, Parkinson's disease, dementia, vision and hearing loss and other age-related problems. See a review at http://www.musc.edu/pr/circle.htm

. To obtain a copy of "The Circle" directly, or for other information, contact the Center on Aging  or call 843-792-0712.

Videos

A Prescription for Caregivers, produced by Wendy Lustbader. Filmed in front of a live audience of caregivers, this presentation is packed with humor and stories from real life. Topics include: heeding resentment as a warning sign of doing too much, varieties of guilt, options for self-care, and figuring out how much care is enough. Available for $30.00 normally or $20.00 for readers of the National Caregiving Foundation Caregiver's Support Kit (Caregivers may call 1-800-930-1357 for free copy of Caregiver's Support Kit). Add $3.00 for shipping and handling for A Prescription for Caregivers and mail to Wendy Lustbader, 1917 25th Ave. East, Seattle, WA 98112, telephone: 425-462-5722 (not a toll-free call). We thought this presenter gave good advice, but the live workshop style may not be for everyone.

Educated Caregiver Video Series, Volumes 1, 2, and 3, created by Life View Resources, 1-800-395-5433 or www.lifeviewresources.com

Volume 1 is Coping Skills (getting support, being realistic, etc.), Volume 2 is Hands on Skills (bathing, dressing, safety, bed rest), Volume 3 is Essential Knowledge (medications, diet, prevention of infection, etc.). On the web site, click on the photo to go to a screen where you can preview video clips of these. This series is very reasonably priced and has won awards. You may also see these for sale on other web sites for caregivers, but this is the site of the company who developed them.

The Family Guide to Long Term Care Video Series, created by Life View Resources (see Educated Caregiver Series above). This set deals with making decisions regarding long term care, choosing an institution, and staying involved. Video previews are available on the web site. The videotapes can be purchased individually or as a series.

The Home Care Companion Resources for Caregivers Communication Series and Caregiving Series. These videotapes offer practical, hands-on advice for issues such as How To Communicate with Someone Who Has Aphasia (a communication problem after some strokes) and How to Communicate with Someone Who Has Alzheimer's Disease. The one on Alzheimer's Disease talks about non-verbal communication of love, about not arguing, about how to get someone to take a bath by singing, etc. The Caregiving Series covers topics such as Personal Care, Infection Control, How to Help Someone Who Uses a Wheelchair Without Hurting Yourself, How to Manage Medications, etc. These show the details of home nursing and are available from www.homecarecompanion.com

These videos, when taken as a whole with additional training materials, form the basis for this company's National Caregiver Training Program. They may be purchased separately. We found most of them in the Gulfport, Florida library.

Video Respite Series by Innovative Caregiving Resources, 1-800-249-5600 or www.videorespite.com

These tapes entertain Alzheimer's patients at home or in group settings so that caregivers can get a break. We saw clips of them being shown to Alzheimer's patients, who were talking to the "visitor," singing, and clapping. These tapes appear to effectively occupy Alzheimer's patients. Some of the titles are A Visit with Maria, a Kibitz with David, Remembering When, and Sharing Christmas Cheer. The tapes may be purchased individually, and this company also has created tapes to help caregivers facilitate exercise, relaxation, and cooperation. 

Video Respite Series, available at the Alzheimer's Store, found at www.alzstore.com

These video respite tapes include a fish tank scene, nature scenes with Handel's Water Music, sing-a-longs to the oldies, trips down memory lane to a zoo or a country store, etc. They should be enjoyable for caregivers as well as care receivers. These tapes may be purchased individually and may be available on other web sites.

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