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Wednesday, August 24, 2011

Helpful Web-Based Resources for Family Caregivers

Nancy Allegrezza from Telikin and Jane Hamilton from Partners on the Path joined the show to help us with our aging parents. They gave everyone this wonderful list of resources:

American Association of Retired Persons (AARP): www.aarp.org has a caregiving section that offers information on caregiver support, long-term care financing, help with home care, housing options, assistive devices, and caregiving for adult children. Click on “Life Answers” on the main page to access information.

Ask Medicare: www.medicare.gov/caregivers is a section of the Centers for Medicare & Medicaid Services (CMS) website that provides Medicare beneficiaries and their caregivers with a wide range of consumer-friendly tools and materials designed to lighten the burden of caregiving and help them make informed healthcare decisions. For access to a helpful Discharge Planning Checklist go to: www.medicare.gov/publications/pubs/pdf/11376.pdf
Caring for the Caregiver: www.CaringForTheCaregiver.org offers hope and help for family caregivers through their weekly, free community-based support groups called Caring and Healing Circles.

Children of Aging Parents: www.caps4caregivers.org features a full range of services, articles and resources for eldercare. Use their Resource Guide to find available help after taking their elder situation assessment.

Disease-Specific Sites: For other conditions that don’t appear below, go to: google.com and type in the name.

Alzheimer's Type Dementia – www.alz.org

Huntington's Disease - www.hdsa.org

Arthritis- www.arthritis.org


Blindness- www.blindness.org

Multiple Sclerosis- www.nmss.org

Cancer - www.cancer.org or www.cancercare.org

Neuromuscular Disease - www.alsa.org

Diabetes - www.diabetes.org

Osteoporosis- www.nof.org

Heart Disease/Stroke - www.americanheart.org or www.stroke.org

Parkinson Disease - www.apdparkinson.com

eCare Diary: www.eCareDiary.com provides free, online tools to help organize appointments, medication schedules, and legal documents, to share information with other caregivers, calculate health care costs and shop for quality products. eCare Diary also has a comprehensive database of nursing homes and home care services, guides on long term care financing and information on important health care documents everyone should have.

Eldercare Locator: www.eldercare.gov/Eldercare/Public/Home.asp connects older Americans and their caregivers with sources of information on senior services throughout the country. The service links those who need assistance with state and local Area Agencies on Aging and community-based organizations that serve older adults and their caregivers. Connect with resources in your area by calling: 1-800-677-1116.

Lotsa Helping Hands: www.lotsahelpinghands.com provides an easy-to-use group calendar, specifically designed for organizing helpers to help with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It’s also a place to keep these ‘circles of community’ informed with status updates, photo galleries and message boards.
National Alliance for Caregivers: www.caregiving.org provides an extensive national database of information on Medicare, caregiver resources, and referrals to local programs in your area.

National Association of Geriatric Care Managers: www.caremanager.org supports its members, and helps the general public learn about and connect with professional geriatric care managers.

National Caregivers Library: www.caregiverslibrary.org Hosted by Family Care America, this online resource has an extensive online library with hundreds of articles for caregivers. Follow this link (http://www.caregiverslibrary.org/Default.aspx?tabid=694 ) to access any of these practical tools: Driving Assessment Checklist, Comprehensive Caregiving Needs Assessment, Home Safety Tipsheet, Cageiver Self-Assessment Questionnaire, Net Worth Calculation Worksheet, and Valuable Records Inventory Worksheet

National Family Caregivers Association (NFCA): www.thefamilycaregiver.org supplies a wealth of practical caregiver tips, advocacy updates and information on communicating effectively with healthcare professionals. The site also offers a section on sharing your caregiving story, where family caregivers can write in to share their personal caregiving experience.

Next Step in Care: www.nextstepincare.org presents free, downloadable information, practical guides and checklists to help family caregivers and health care providers plan safe, smooth transitions from one health care setting to another: from home to hospital, hospital to home, to home with home care, or to in-patient rehab. Written succinctly in two formats, one for professionals and another for family caregivers, these tools highlight critical aspects of care such as medication management, discharge planning & preparing for the next level of care.

Partners on the Path: www.partnersonthepath.org helps both professional and family caregivers build resilience, maintain good health and preserve the capacity to care by providing their original, research-based stress and coping resources. Free or subscription-based services offer personal support and helpful information in various video, audio, online, print and in-person formats.

Share the Caregiving: www.sharethecare.org educates the public, health professionals and clergy about group caregiving as a proven option for meeting the needs of seriously ill or dying, the elderly or those in rehab.

Strength for Caring: www.strengthforcaring.com is a free, online resource and community for family caregivers as part of The Caregiver Initiative, created by Johnson & Johnson Consumer Products.

Well Spouse Association: www.wellspouse.org is a national, not-for-profit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled with support groups, a quarterly newsletter, online mentors and respite weekends.

Willowgreen: www.willowgreen.com offers spiritually rich information, inspiration and support for life transitions and aging, loss and grief, illness and caregiving. Formats include books, booklets and audiovisual materials.

© Jane Meier Hamilton 2011 jane@PartnersonthePath.org
Some Good Books for Caregivers

Callone, Patricia, et.al. A Caregiver’s Guide to Alzheimer’s Disease: 300 Tips for Making Life Easier. Demos
Medical Publishing. 2006.

Carr, Sasha and Choron, Sandra. The Caregiver’s Essential Handbook: More than 1,200 Tips to Help You Care
for and Comfort the Seniors in Your Life. Contemporary Books. 2003.

Delehanty, Hugh and Ginzler, Elinor. Caring for Your Parents. AARP. 2005.

Capossela, Cappy and Warnock, Sheila. Share the Care: How to Organize a Group to Care for Someone Who
Is Seriously Ill. Second Edition. Fireside, 2004..
Hamilton, Jane. Journey of a Lifetime: The Caregiver’s Guide to Self-care. Infinity. 2010.

Hamilton, Jane. The Caregiver’s Guide to Self-Care: Help for Your Caregiving Journey. 1 hour audio-book.
Infinity. 2011.
Hennessy, Maya. If Only I’d Had This Caregiving Book. AuthorHouse. 2006.

Jacobs, Barry. The Emotional Survival Guide for Caregivers. The Guilford Press, 2006.
Lebow, Grace, et.al. Coping with Your Difficult Older Parent. Avon Books, 1999.

Loverde, Joy. The Complete Eldercare Planner. Revised & Updated Edition. Three Rivers Press. 2009.

Mace, N. and Rabins, P. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s
Disease, Related Dementing Illnesses, and Memory Loss in Later Life . Grand Central. 1981.

McLeod, Beth Witrogen Ed. And Thou Shalt Honor: The Caregiver’s Companion. Rodale, 2002.
Rhodes, Linda. The Complete Idiot’s Guide to Caring for Aging Parents. Alpha Books. 2001.
Sheehey, Gail. Passages in Caregiving: Turning Chaos into Confidence. William Morrow. 2010.
Zukerman, Rachelle. Eldercare for Dummies. Wiley. 2003.