Health & Medicine  ||   Death & Dying  ||   Government Agencies and Services Caregiving Resources  ||   General Resources  ||   Books of Interest Health and Medicine Alcoholics Anonymous (AA) Phone: 212-870-3400 Website: www.alcoholics-anonymous.org Check your phone book first for a local chapter. AA offers support to alcoholics and their families. Click on "Is there an Alcoholic in your Life?" to help answer questions about family members and loved ones. Alzheimer's Association Phone: 1-800-272-3900 Website: www.alz.org This is an excellent organization with a Web site that offers you a wide range of information and support services. Provides a caregiver's guide, "ask the expert" online, medical information, and a finder to locate your local Alzheimer's chapter. Alzheimer's Disease Education and Referral Center Phone: 1-800-438-4380 Website: www.alzheimers.org This site provides the latest information on new treatments; you can track current clinical trials and how to connect to 20 national Alzheimer's disease centers throughout the country. The site also keeps you posted on results of the most recent research studies. American Diabetes Association Phone: 1-800-342-2383 Website: www.diabetes.org The association's Web site is very extensive giving you the latest in research, general info, nutrition, news, lifestyle tips, and links to other great sources. On this site you can also find local chapters near you. American Heart Association Phone: 1-800-242-8721 Website: www.americanheart.org This group provides research, information, and education about the heart. Click on a great site map to see what's available. Includes: warning signs of heart attacks and stroke; separate sections on women; patient information; and links to other sites. The American Lung Association Phone: 1-800-586-4872 E-mail: info@lungusa.org Website: www.lungusa.org Contact a local chapter by typing in your zip code on the Web site. Search the site for information on all lung topics[md]asbestos, air quality, tobacco, tuberculosis, etc. View and download free pamphlets. Arthritis Foundation Phone: 1-800-283-7800 Website: www.arthritis.org This foundation offers very good consumer health information on prevention and treatment of arthritis. It provides information and referral services and can refer you to a local chapter, support groups, and classes by phone or at the Web site. The Web site also has a product store and a section on advocacy. Healthfinder Website: www.healthfinder.gov This is a gateway site to consumer health and human services information from the U.S. Department of Health and Human Services. It's a great site, easy to use, has links to agencies and databases, and has a directory of services. The Lighthouse National Center for Vision and Aging Phone: 1-800-334-5497 Website: www.lighthouse.org This center provides very helpful information for those with vision problems, and a terrific catalog of devices to make life easier and vision better. It will also tell you where a low vision clinic is near you. MEDLINEplus Website: www.nlm.nih.gov/medlineplus This is the site for the National Library of Medicine and National Institutes of Health; if you want to bookmark just one site for your medical information, this is it. It's a terrific resource for all kinds of medical information linking you to other resources. Click on the drug information site[md]you can review reports on over 9,000 prescription and over-the-counter drugs. National Association for Continence (formerly Help for Incontinent People) Phone: 1-800-252-3337 Website: www.nafc.org Provides education, information, advocacy, and support for the public and health professionals on incontinence. The Web site includes “10 Warning Signs of Incontinence,” a guide to products, and a continence referral service. National Coalition for Cancer Survivorship Phone: 877-622-7937 E-mail: info@cansearch.org Website: www.cansearch.org This is a patient-led organization for patients with cancer and their families. The Web site includes a “Help for Caregivers” section with a “Cancer Survival Toolbox” series[md]listen to audiotapes or view transcripts. Click on CanSearch: Online Guide to Cancer Resources for an excellent primer on how to get cancer information on the Web. National Council on Alcohol and Drug Dependence Phone: 212-206-6770; 1-800-622-2255 for affiliate referral Website: www.ncadd.org This is a nationwide, voluntary organization dealing with alcoholism and other drug addictions. It provides education and information, along with advocacy efforts. Click on “Publications” to get a copy of the brochure “What are the Signs of Alcoholism?” a self-test to determine if you or a family member needs to discover more about alcoholism. National Eye Institute Phone: 301-496-5248 Website: www.nei.nih.gov This institute specializes in vision[md]research and information for professionals, the public, media, and educators. The Web site has everything[md]a search function, eye charts, online publications, and a great site map. National Health Information Center Phone: 1-800-336-4797 E-mail: nhicinfo@health.org Website: www.nhic-nt.health.org This is a multi-purpose Web site designed to help the general public and professionals find health information. It includes a listing of health-related organizations, with links, and a year 2000 list of toll-free numbers for assistance. National Heart, Lung and Blood Institute Phone: 301-251-1222 Website: www.nhlbi.nih.gov Receive excellent information on diseases of the heart, lung, and blood. Learn about the latest results of studies, news, and centers that are seeking patients for clinical trials. National Institute of Diabetes, Digestive and Kidney Diseases Website: www.niddk.nih.gov The institute offers a wealth of information on these diseases, giving you the latest research results, a clinical trial finder, understandable health information, and links to other helpful sites to prevent and control these diseases. National Institute of Mental Health Phone: 301-443-4513 E-mail: nimhinfo@nih.gov Website: www.nimh.nih.gov Get the latest information on symptoms, diagnosis, and treatment of mental illness. Call for brochures, fact sheets, and other materials. On the Web site, click on “For the Public” for quizzes to help see if someone has an anxiety disorder or depression, or to find out more about medications and mental disorders. National Institute of Neurological Disorders and Stroke Phone: 1-800-352-9424 Website: www.ninds.nih.gov The institute offers a top-notch Web site describing brain attacks and offers prevention strategies. It also offers information on other brain disorders such as Parkinson's, Alzheimer's, and epilepsy. You can also receive referrals to local clinical research centers. National Institute on Aging Phone: 301-496-1752 Website: www.nih.gov/nia/ This Web site includes a resource directory with links to other aging-related sites, as well as a list of “Age Pages” on various topics related to aging available to the public. You can read the “Age Pages” online. National Institutes of Health Website: www.nih.gov This federal agency houses a wide range of health institutes cited in this appendix. By visiting this gateway site you can link onto other institutes, find clinical trials for most diseases throughout the country, and review the data on 9,000 prescription and over-the-counter drugs. National Mental Health Association Phone: 1-800-969-6642 E-mail: infoctr@nmha.org Website: www.nmha.org This is an organization with 340 local affiliates dedicated to improving mental health and conquering mental illnesses. The Web site has an information center to find affiliates and obtain free publications. Click on “Confidential depression-screening test” to gauge your (or a loved one's) sense of depression. National Osteoporosis Foundation Phone: 202-223-2226 Website: www.nof.org This is a membership organization with a lot of information on the Web site. Get advocacy, news, information for patients, prevention tips, brochures, videos, awareness kits for free and for sale. Since there is no osteoporosis specialty among doctors, the “Find a Doctor” button provides a strategy for finding a doctor. National Sleep Foundation Phone: 202-347-3471 Website: www.sleepfoundation.org Great information on sleep disorders and treatment. Print out the foundation's “Sleep Journal” so that your parents can keep track of their sleeping patterns and give it to their doctor. You can also find sleep clinics on the Web site. National Stroke Association Phone: 1-800-787-6537 Website: www.stroke.org The association offers a wide range of information on strokes. It makes referrals to medical experts, rehab centers, and support groups. The Web site offers very good links to other related sites. Paralyzed Veterans of America Phone: 1-800-424-8200 E-mail: info@pva.org Website: www.pva.org This veteran's service organization focuses on special needs of veterans with spinal cord dysfunction. Issues include: health care, research, education, benefits, civil rights, and opportunities for paralyzed veterans. Parkinson's Resource Organization Phone: 877-775-4111 Website: www.parkinsonsresource.org A 10-year-old national organization devoted to helping people affected by Parkinson's disease, it provides information, education, support, and a newsletter. Self Help for Hard of Hearing People Phone: 301-657-2248 Website: www.shhh.org This nonprofit, educational organization offers very good links and information on hearing loss and hearing aides. It identifies free screening sites throughout the country during annual Hearing Loss Week. Death and Dying Aging with Dignity Phone: 850-681-2010 E-mail: fivewishes@aol.com Website: www.agingwithdignity.org This is a privately funded nonprofit organization that puts a special emphasis on improving care for the elderly at the end of their lives. “Five Wishes” is an easy-to-understand living will, or advanced directive, for all ages. Click on “Five Wishes” on the Web site for a preview. American Hospice Foundation Phone: 202-223-0204 Website: www.americanhospice.org This organization provides you with helpful information on hospice care. Referrals to a hospice near your parent, counseling resources, and support programs are available on its Web site. Growth House, Inc. Phone: 415-255-9045 Website: www.growthhouse.org This group is billed as the “Internet's leading online community for end of life care.” It is an award-winning gateway site to resources for life-threatening illnesses and end-of-life care. You get great information and group support through chat rooms. National Hospice Organization Phone: 1-800-658-8898 Website: www.nho.org News, public policy information, general hospice information, and links to other good sites are offered on this Web site. Government Agencies and Services Access America for Seniors Website: www.seniors.gov This is: “[el] a government-wide initiative to deliver electronic services from government agencies and organizations to seniors.” A one-stop Web site for anyone who wants information on senior issues[md]from A to Z. Link to your state's aging site. Administration on Aging Website: www.aoa.gov This is the federal agency that acts as the hub for all government aging services and provides the network of state and area agencies on aging. The Web site is chock full of information and links to other related government sites. Department of Veterans Affairs Phone: 1-800-827-1000 Website: /www.va.gov This federal agency operates all of veteran's services. The Web site is excellent and will save you a great deal of time. You can determine your parents' benefits, who qualifies for what, and how to apply. Contact information is provided and application forms can be downloaded and printed. Eldercare Locator Phone: 1-800-677-1116 Website: www.aoa.dhhs.gov/elderpage/locator.html This service is run by the National Association of Area Agencies on Aging. If you call and describe your problem, someone will direct you to local and regional agencies for senior services and to your local area agency on aging. You can also receive this info by visiting the Web site. Housing and Urban Development (HUD) Phone: 888-569-4287 Website: www.HUD.gov/senior.html This federal agency runs low-income housing for seniors. Visit its Web site to find out if your parent qualifies for federal congregate housing and other housing services. Medicare Hotline Phone: 1-800-MEDICAR (1-800-633-4227) Website: www.hcfa.gov or Website: www.medicare.gov Call the Medicare Hotline to inquire about plans and what HMOs offer service in your area, to get brochures mailed to you, or to complain about problems or report fraud. At Website: www.medicare.gov you can click on "Nursing Home Compare" and get the latest inspection reports on every nursing home in the country. Pennsylvania Aging and Caregiving Services Website: http://caregiverpa.psu.edu/careinfo/resources.htm At this website you'll be given an overview of aging services available throughout Pennsylvania with contact information and links to their websites. You can also access assessment tools that you can take to help you better understand your caregiver situation and services that may help. Social Security Administration (SSA) Phone: 1-800-772-1213 Website: www.ssa.gov SSA is the federal agency that runs Social Security retirement, survivor's benefits, disability insurance, and SSI (Supplemental Security Income). The Web site is an award-winning government site, easy to use, and answers most of your questions. It offers a directory of local offices. Caregiving Resources Children of Aging Parents Phone: 1-800-227-7294 This is a national nonprofit group offering information and referrals. It is listed in almost every guide or resource directory that lists caregiving referral and information resources. Call for information on all caregiving questions. Linda Rhodes Caregiving Website: www.lindarhodes.com This site offers over 100 links to caregiving and government resources, tips on dealing with Medicare Part D, a guide on choosing a nursing home, a “cheat sheet” to understand medical terms and access to Dr. Rhodes’ books on caregiving and aging (National Mature Media Award Winner) and her Caregiver Kit. National Association of Professional Geriatric Care Managers Phone: 521-881-8808 E-mail: info@caremanager.org Website: www.caremanager.org An association of member geriatric professionals, with an emphasis on advocacy, education, and standards of care for the elderly. Click on “Care Management Resources” for a very good list of Web site links, with a description of each Web site accompanying the link to help you in your search. National Family Caregivers Association Phone: 1-800-896-3650 E-mail: info@nfcacares.org Website: www.nfcacares.org This is a national charitable organization for caregivers. It provides assistance in the areas of information and education, support and validation, and public awareness and advocacy. Its Web site is comprehensive. National Federation of Interfaith Volunteer Caregivers Phone: 1-800-350-7438 Website: www.NFIV.org This is a nationwide alliance of 1,300 faith-based, community-based programs. Volunteers help people remain independent, and provide respite for families who are caregivers. Call the toll-free number to get connected with a local chapter or visit the Web site. General Resources AAA Foundation for Traffic Safety Phone: 1-800-305-7233 Website: www.aaafts.org A foundation focused on driver education, safety, and prevention. Order free brochures on driving and the older driver or buy videotapes about older drivers and safety issues. Several written driving tests for the older driver can help families deal with difficult issues. Abledata[md]Assistive Technology Phone: 1-800-227-0216 Website: www.abledata.com This is an organization that catalogs of assistive technology. Product information price ranges are included on the Web site. The National Institute on Disability and Rehabilitation Research of the Department of Education funds the site but it does not endorse any of the products. American Association of Homes and Services for the Aging Phone: 202-783-2242 Website: www.aahsa.org Represents 5,000 not-for-profit facilities that care for the aging and those in assisted living. The Web site has a section designated “For Consumers and Family Caregivers.” Search by city, state, zip, and type of facility or service to find a not-for-profit nursing home, assisted living facility, or community-based service. American Association of Retired Persons (AARP) Phone: 1-800-424-3410 Website: www.aarp.org An educational and action organization for those 50 and older The Web site is excellent. To find caring for an aging parent info, type the word “caregiver” into the search box. AARP members can take advantage of the AARP Legal Services Network (www.aarp.org/lsn), a free first consultation with a lawyer. Center for Medicare Advocacy Phone: 860-456-7790; 1-800-262-4414 in Connecticut; 202-216-0028 in Washington, D.C. Website: www.medicareadvocacy.org This is a private, nonprofit foundation. Focus is on health care rights, especially needs of Medicare beneficiaries. The Web site has links to other sites that emphasize Medicare. Commission on Legal Problems of the Elderly Phone: 202-662-8690 E-mail: abaelderly@abanet.org Website: www.abanet.org/elderly The commission focuses on improving legal services for the elderly, with involvement of the private bar. It deals with elderly legal issues that surround HMO's, elder abuse, guardianship, and others. You can download an advance directive. (The commission is not active in all states.) ElderWeb Website: www.elderWeb.com Considered the “grand daddy” of aging information Web sites. It offers a wide range of topics that affect older people; it's easy to use, has great links, and is a very good site to bookmark. Families USA Phone: 202-347-2417 Website: www.familiesusa.org This is a great advocacy organization in health care and long-term care. It offers an award-winning Web site filled with consumer information on Medicare, Medicaid, prescription drug costs, a legislative action center, and Web health links. Apply your caregiving experience and become an advocate. Meals on Wheels Association of America Phone: 703-548-8024 Website: www.mealsonwheelsassn.org Track down the number of the local Meals on Wheels program in your area to have meals delivered to your parents' home, or to volunteer. Or check your local phone book for Meals on Wheels. National Academy of Elder Law Attorneys, Inc. Phone: 520-881-4005 Website: www.naela.com A nonprofit association that provides information, education, networking, and assistance to those who deal with the specialized issues of legal services to the elderly and disabled. The Web site also has a function that helps you find elder law attorneys in your area. National Association for Hispanic Elderly Phone: 1-800-953-8553 This agency provides information and referral services for elderly Hispanic and low-income people. Employment counseling, training, and placement services are available. Other referrals include housing, disaster relief, and income tax help. National Association for Home Care Phone: 202-547-7424 Website: www.nahc.org This nonprofit group has an excellent Web site on home health care. Learn about all of the different services and therapies available under home care. It offers a home care and hospice locator on the site. It also offers a guide on how to choose a home care provider. National Caucus and Center on Black Aged Phone: 202-637-8400 Website: www.ncba-aged.org The center's mission is to improve the quality of life among aging African-Americans. It is not a service provider; however, it offers programs in job opportunities, health care, housing options, and long-term care. National Center for Home Equity Conversion Phone: 651-222-6775 Website: www.reverse.org A twenty-first-century Web site devoted to the consumer. Click on “Calculator” and get an instant estimate of your home equity. Review the sources in your state for reverse equity home mortgages. Learn all you could possibly want to know about reverse mortgages before you make any decisions. National Consumers League Phone: 202-835-3323 E-mail: info@nclnet.org Website: www.nclnet.org A private, nonprofit group advertised as the oldest consumer's group in the United States. It represents consumers on all workplace and marketplace issues. One click gives you access to information on telemarketing and Internet fraud, or drug interactions. National Council of Senior Citizens Phone: 1-888-373-6467 E-mail: membership@ncscerc.org Website: www.ncscinc.org This organization works to improve the lives of elderly people. It is a self-described activist agency representing older Americans, with over 2,000 affiliate councils. Members can call 301-578-8938 for the Nursing Home Information Service. National Council on the Aging Phone: 202-479-1200 Website: www.ncoa.org An organization of agencies and professionals whose mission is to: “[el] help community organizations to enhance the lives of older adults.” Click on “Aging Issues”, then on “Caregiving” for information. National Safety Council Phone: 630-775-7615 Website: www.nsc.org This council stresses highway safety. Call for pamphlets and publications. On the Web site click on “Defensive Driving Training”, then on “Defensive Driver Courses” to find a local site that offers the course “Coaching the Mature Driver.” National Shared Housing Resource Center Phone: 507-433-8832 E-mail: sayoung@smig.net Website: www.nationalsharedhousing.org This is a nonprofit national clearinghouse for information on shared housing. On the Web site you can click on "Directory," then choose a state and get the name, address, and phone number of a program, as well as a thumbnail description. The National Women's Health Information Center Office of Women's Health, DHHS Phone: 1-800-994-9662 Website: www.4women.gov A Web site with a focus on women's issues. Use the “Search” box by typing in “aging,” “caregiver,” or “elder care” for a multitude of excellent direct links. Resource information is available on Alzheimer's, empowering caregivers and working women, and elder care. Older Women's League (OWL) Phone: 1-800-825-3695 E-mail: owlinfo@owl-national.org A nonprofit, 20-year-old organization that focuses on issues of women as they age, particularly women 40 and older. There are 73 chapters nationwide. It produces an annual “Mother's Day Report”[md]the 2000 issue highlights prescription drug coverage legislation. SeniorLaw Website: www.seniorlaw.com Excellent one-stop source for all legal matters affecting older people. It has great links and information and its very current. Visiting Nurses Association (VNA) of America Phone: 1-800-426-2547 Website: www.vnaa.org There are over 500 VNAs throughout the country providing skilled nursing, hospice, home health aides, homemakers, nutrition advice, and personal assistance. Find a VNA near you and ask if your parents are eligible for home health care. Books Appleton, Michael, et al. At Home with Terminal Illness: A Family Guidebook to Hospice in the Home. Prentice Hall, 1994. Beresford, Larry. The Hospice Handbook. Little Brown, 1993. Byock, Ira. Dying Well. Putnam/Riverhead, 1997. Carter, Rosalynn. Helping Yourself Help Others. Times Books, 1995. Cosgrove, Melba, et al. How to Survive the Loss of a Love. Prelude, 1991. Haman, Edward A. How to Write Your Own Living Will. Sourcebooks, Inc., 1997. Ku[um]bler-Ross, Elisabeth, M.D. On Death and Dying. Scribner, 1997. Llardo, Joseph A., Ph.D. As Parents Age. VanderWyk & Burnham, 1998. Mace, Nancy L., and Peter V. Rabins. The 36-Hour Day. Johns Hopkins University Press, 1999 (first published in 1981). Maple, Steve, The Complete Idiot's Guide to Wills and Estates. Alpha Books, 1997. McLeod,, Beth Witrogen. Caregiving, the Spiritual Journey of Love, Loss and Renewal. John Wiley & Sons, 1999. Myers, Edward. When Parents Die. Penguin, 1997. Rob, Caroline. The Caregiver's Guide. Houghton Mifflin Company, 1991. Rottenberg, Dan. The Inheritor's Handbook. Simon & Schuster, 1999. Secunda, Victoria. Losing Your Parent. Hyperion, 2000.