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CaregivingJanuary 2009 People with limb loss have particular information needs. Topic of the Month is a resource guide of information relevant to amputees. Click on the links below to access articles and Web sites directly. Many of the books and videos can be borrowed through Interlibrary Loan. Many more resources can be found by searching our online library. Please feel free to share this resource with those who may find this useful. We also welcome your comments and topic suggestions! Contact us via e-mail at library@amputee-coalition.org. Amputee Coalition Articles and Fact SheetsA Circle of Friends: Microboards Make Sense in the Amputee Community / Élan Young. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, January / February 2007. Microboards, or self-directed support corporations (SDSC) are composed of a small group of individuals who form a legal entity, or agency, that cares for an individual with a disability. This is an example of person-centered planning. This article discusses the history of microboards and gives direction for setting up a microboard. Feelings / Omal Bani Saberi. Knoxville, TN: Amputee Coalition, 2003. Article from inMotion, November / December 2003. This article focuses on some of the typical feelings and behaviors of mates, spouses, partners, friends and family members of people who have recently gone through limb loss. First a Partner, Then a Caregiver: Tips for Maintaining a Good Relationship With Your Partner-Caregiver / Alison W. Henderson and Rhonda M. Williams. Knoxville, TN: Amputee Coalition, 2006. Article From inMotion, January / February 2006. This article discusses how to maintain a healthy relationship with your partner when they are also your caregiver. Good communication skills, appreciation, positive interactions and knowing when to get additional help are important aspects of preserving a good relationship. Resources for Seniors With Limb Differences and Their Caregivers / Rick Bowers. Knoxville, TN: Amputee Coalition, 2003. Article from inMotion, January / February 2003. This article discusses caregiving needs of seniors with limb differences. A resource list of agencies and organizations that can provide information for caregivers and those with care needs is included. NLLIC / Amputee Coalition Fact Sheet: Resources for Seniors With Limb Differences and Their Caregivers / by NLLIC Staff. Knoxville, TN: Amputee Coalition, 2008. This fact sheet lists contact information for a variety of service organizations on aging, medical and prescription drugs, caregiving, and disabilities for seniors and caregivers. NLLIC / Amputee Coalition Fact Sheet: Survival Guide for Caregivers: De-Stressing to Stay Healthy. Knoxville, TN: Amputee Coalition, 2008. Studies show that caregivers are less likely to take care proper of themselves. This fact sheet suggests habits and activities for caregivers to stay healthy and de-stress. The Observant Caregiver / Knoxville, TN: Amputee Coalition, 2008. Article from inMotion, April 2008. Many people, including seniors, need help with daily living activities, but they don't want to be completely dependent. Observant caregiving can help someone feel more independent by observing exactly what that person needs help with and finding a solution. This article includes information on when to call a professional. Who Cares for Caregivers? / Nancy Carroll. Knoxville, TN: Amputee Coalition, 2000. Article from inMotion, January / February 2000. A discussion about the importance of caregivers also taking care of themselves. Information is included on organizations that are support venues for caregivers. BooksThe American Medical Association Guide to Home Caregiving/ Angela Perry, medical editor. New York: J. Wiley & Sons, 2001. This book provides the information you need to take the best possible care of an elderly, ill or disabled person in a home setting. Caregivers and Personal Assistants: How to Find, Hire and Manage the People Who Help You (Or Your Loved One!)/ Alfred H. DeGraff. 3rd, completely rev. ed. Fort Collins, CO: Saratoga Access, 2002. This book provides step-by-step strategies for recruiting, interviewing, screening, hiring, training, managing and parting ways with paid help providers. It includes helpful information for help recipients, seniors, family caregivers, paid aids, agency staff and counselors. The Caregiver's Tale: Loss and Renewal in Memoirs of Family Life / Ann Burack-Weiss. New York: Columbia University Press, c2006. ISBN: 0-231-12158-X. The usual thinking that caring for a seriously ill or disabled family member is a stress-filled ordeal is challenged in The Caregiver’s Tale. A licensed clinical social worker, the author examines phenomena she’s observed in over 30 years of practice: sources of strength for caregivers, how their views on family and the meaning of life changed over the course of caregiving and how the wisdom of caregiving can be used to sustain others facing the same challenges. Caregiving Sourcebook: Basic Consumer Health Information for Caregiving/ edited by Joyce Brennfleck Shannon. Detroit, MI: Omnigraphics, 2001. A compendium of information from various government agencies and organizations. An overall look at caregiving in America is given, including caregiving responsibilities and concerns, caregiving for specific conditions and diseases, care environments, legal and financial information and insurance information. A directory of additional resources is included. Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive / Claire Berman. 2nd ed. New York: H. Holt, 2001. This guide focuses on the importance of caregivers taking care of themselves as well as their parents. The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers / Maria N. Meyer with Paula Derr; foreword by Mark O. Hatfield. 2nd ed. Portland, OR: CareTrust Publications LLC, 2002. This easy-to-understand guide takes readers through all the steps of home care. From A to Z, it shows precisely how to make the home safe and comfortable for people with special needs; easily handle everyday activities like toileting, bathing, and wheelchair transfers; ensure proper nutrition; avoid infections and illnesses; deal with the particular needs of a person with Alzheimer's; communicate with healthcare professionals to get the service you need; understand end-of-life healthcare documents; and avoid caregiver burnout. Plus, The Comfort of Home contains checklists, resources, money-saving ideas and tips to make your job easier Helping Yourself Help Others: A Book for Caregivers / Rosalynn Carter with Susan K. Golant. New York: Times Books, 1994. Having cared at home for her ailing father and grandfather, Rosalynn Carter's involvement has taught her that Americans are in the middle of a caregiving crisis. In this book, Mrs. Carter addresses the social issues that have created this crisis and offers practical solutions to the problems caregivers typically experience, such as isolation, burnout, anger and helplessness. Preventing Caregiver Burnout/ James R. Sherman. Golden Valley, MN: Pathway Books, 1994. A guide designed for professional and non-professional caregivers. The Personal Care Attendant Guide: The Art of Finding, Keeping, or Being One / Katie Rodriguez Banister. New York, NY: Demos, c2007. This book guides people with disabilities and their families through a challenging, but by no means impossible, task: finding a qualified caregiver. Readers learn to successfully locate, interview, hire, train and supervise a personal attendant, whether through an agency or on their own. Thorny issues like wages, taxes and firing an attendant are also covered. Additionally, the book’s real-life examples help current and prospective caregivers succeed in this demanding yet rewarding work environment. VideosCaregiver Wellness / produced by Healing Arts Communications; written and directed by Marion Karpinski. [United States]: Healing Arts Communications, c2003. ISBN: 0-9726833-5-6. DVD. This video provides tools and resources to help caregivers transform stress and maintain wellness. The Educated Caregiver (Series) / LifeView Resources, Inc. Nashville, TN: LifeView Resources, c2004. ISBN 1-893052-25-7. This three-volume DVD set provides valuable insight and knowledge on a variety of basic caregiving topics. Caregivers tell of their experiences. Fall Prevention / A Healing Arts Communications production in cooperation with Northwestern College of Health Care; written and directed by Marion Karpinski. [United States]: Healing Arts Communications, c1999. ISBN 0-9653873-4-8. DVD. This video teaches the reasons for most falls, why the elderly are more affected, and how to make the home a safe environment. Personal Care / A Healing Arts Communications production; written and directed by Marion Karpinski. [United States]: Healing Arts Communications, c2003. ISBN: 0-9726833-2-1. DVD. It is important to provide personal care in a way that honors an individual's preferences and dignity. After viewing this video, you will understand the principles behind personal care and how to perform those procedures safely and respectfully. Transportation Solutions for Caregivers: A Starting Point. Easter Seals, [2002]. This video and accompanying facilitator manual suggest ways that caregivers working with the elderly can help meet their transportation needs, from how to interact with people to determine their needs and minimize anxiety, to providing physical assistance, to how to locate specialized equipment that may be needed to transport people with disabilities. Web Sites & OrganizationsAmputee Coalition. Knoxville, TN: Amputee Coalition. This Web site provides a wealth of information to all amputees and their family and healthcare providers. Search the library for more resources on caregiving, call the toll-free hotline for information from the National Limb Loss Information Center or submit a question online. ARCH National Respite Network. Chapel Hill, NC: Chapel Hill Training-Outreach Project, Inc., [199-]-. The ARCH National Resource Center began, in 1991, as an initiative to promote respite services for families with children. The Web site includes a National Respite Locator Service, downloadable fact sheets on respite, a list of upcoming conferences on respite and family support, and articles and resources on respite for adults and the elderly. Caregiver.com. Hollywood, FL: Caregiver.com, Inc., 1995-. Caregiver.com provides information, support and guidance for family and professional caregivers. Founded in 1995, it produces Today's Caregiver magazine, and the Web site includes topic-specific newsletters, online discussion lists, back-issue articles of the magazine and chat rooms. Eldercare Locator / U.S. Administration on Aging. Washington, DC: U.S. Administration on Aging, [199-]-. Produced by the U.S. Administration on Aging, this Locator service helps identify local services for seniors and their caregivers. Searchable by state and zip code, results generally include a local Information and Referral agency, the Area Agency on Aging, and State Unit on Aging. These agencies can provide further information about local services available. www.eldercare.gov/Eldercare.NET/Public/Home.aspx ElderLifePlanning.com. Dedham, MA: Informed Decisions, Inc., 1996-. Elderlifeplanning.com is a source of support for family caregivers. It is a resource for information about caring for aging parents and finding the most appropriate resources, such as: home healthcare, assisted living, community day programs and nursing homes. ElderWeb. Normal, IL: Karen Stevenson, 1994- . This site provides professionals and family members information on long-term care. Links are provided to information on medical, housing, legal and financial issues. Family Caregiver Alliance. San Francisco, CA: Family Caregiver Alliance, [200-]-. A nonprofit organization, the Family Caregiver Alliance provides support to caregivers. www.caregiver.org/caregiver/jsp/home.jsp Family Caregiving 101. [Maryland]: National Family Caregivers Association and the National Alliance for Caregiving, 2004-. This Web site was created for people who are caring for a loved one who is ill or disabled. The site includes a question and answer section, describes the stages of caregiving and lists resources to find help. Health and Aging Organizations. Bethesda, MD: National Institute on Aging and The Administration on Aging, [200u]-. A collaborative effort of The National Institute on Aging and The Administration on Aging, this is a database of national and state-level agencies, resource centers, professional societies, private groups and volunteer programs for older adults and geriatric professionals. Lotsa Helping Hands. [United States]: Lotsa Helping Hands, 2004-. Create a free, private, Web-based community to organize family, friends, neighbors and colleagues – a family’s ‘circles of community’ — during times of need. Online calendars coordinate activities and manage volunteers. Communicate and share information using announcements, messages boards, and photos. MedlinePlus: Caregivers. Bethesda, MD: U.S. National Library of Medicine and the National Institutes of Health, [200-]-. MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health has compiled links to information for caregivers. Topics include: general overviews, coping, specific conditions, dictionaries, directories, law and policy, statistics, and senior information, among others. National Alliance for Caregiving. Bethesda, MD: National Alliance for Caregiving, [1996]-. This nonprofit coalition is an alliance of organizations that provide support for caregivers and the professionals that assist them. NFCA: National Family Caregivers Association. Kensington, MD: National Family Caregivers Association, [200-]. NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships and different life stages to address the common needs and concerns of all family caregivers. Senior Step: A Guide for Adapting to Limb Loss. Knoxville, TN: Amputee Coalition, 2004. A resource guide for older adult amputees and their caregivers. Whether you are aging with limb loss or a new amputee, a caregiver or a service provider, you will find something within the pages of this publication to inform, inspire or motivate you. Your Caregiving Journey: Helping You Help Aging Relatives / Denise Brown. United States: Tad Publishing Co, 200-. These online audio podcasts are from the experienced caregiving writer and publisher Denise Brown. A companion to her Web site Caregiving.com, these podcasts offer insights, information and inspirations for family caregivers. |
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