ElderWeb

An Online Resource Guide to Caring for Aging Parents

Family PC Magazine, July 2000

By Carolyn Jabs

The call probably shouldn't have been a surprise, but it was. My 82-year-old mother-in-law, who had always been so healthy and independent, had been diagnosed with an especially virulent form of cancer. Suddenly, she needed our help - and we were 2,000 miles away. As soon as I hung up the phone, I went online. We needed information - not only about her illness, but also about alternative arrangements for housekeeping and even housing. We also needed contact with people who could provide services for her and, to be honest, encouragement for us. The problems we faced were hardly unique. A study cosponsored by the National Alliance for Caregiving and the American Association for Retired Persons estimates that in any calendar year, one in four families is providing care for an elderly relative or friend. Seven million of those families are trying to put together long-distance care, because they live at least an hour away, according to a survey by The National Council on the Aging. The Internet provides resources that can help long-distance caregivers, as well as anyone faced with the responsibility of caring for an aging parent. In fact, sites for seniors and their caregivers have proliferated dramatically in the past six years. Some are inspired by an individual's need to share what he or she has experienced; others are driven by corporate opportunism. "There's a lot of superficial information that doesn't really help families understand the alternatives," says Karen Stevenson Brown, founder of ElderWeb, one of the first sites devoted to the subject. "There's also self-serving information from people who have a product or service to sell. The organization behind the information should always be clearly identified. If it's not, that's a good reason to go elsewhere." When you're facing a crisis, the last thing you need is the additional stress of having to evaluate so many Web sites. The resources we've assembled provide genuine service to people who are caring for elders. Although I found some of these sites when I needed them, I missed many others that would have been valuable. Even more important, I wish I had explored many of these topics before my mother-in-law became ill. Knowing more about the alternatives wouldn't have alleviated our feelings of anxiety and sadness, but it would have helped us make choices based on knowledge instead of panic. Health Health problems often develop long before a parent needs your active assistance. Although there are thousands of medical Web sites, many focus on wellness. And the popular "condition lists" usually explain one illness at a time without discussing how, for example, arthritis interacts with heart disease. "Even sites for seniors often focus on healthy aging," says Rich O'Boyle, founder and community director for ElderCare Online. "At some point, that's no longer the issue." Many elders face multiple and chronic health problems, so the challenge is finding coordinated treatment and relief for a range of conditions. One source that deals specifically with the health problems associated with aging is the Merck Manual of Geriatrics. Topics range from nutrition to neurology, but each discussion takes into account the fact that "diagnostic logic" as well as treatment may be different for aging patients. Alzheimer's often appears as its own category on Web sites devoted to elder care, not because it's so common - only 10 percent of elders over 65 show symptoms - but because it's exceptionally stressful for caregivers. Basic information about Alzheimer's, as well as message boards and other resources for caregivers, can be found at the Web site for the Alzheimer's Association. Many elders take multiple prescription medications. Again, there are dozens of sites where you can find information about specific drugs, but few that discuss the risks of drug mismanagement for seniors. One exception is SeniorDrugs.com, which is part of AgeNet. In addition to a free Ask a Pharmacist service, the site also offers two interesting paid options. MedMinders provides phone call reminders about medication. After a $9.95 set up fee, the service includes up to four calls a day for $19.95 a month. The Geriatric Medication Assessment will evaluate all the drugs an elder is taking to spot potential conflicts for $45. Finally, family members who are providing hands-on care for aging relatives can turn to Web of Care for detailed animated tutorials explaining how to change an occupied bed or help someone move from a wheelchair to a vehicle. The tutorials also cover home safety, exercise for people with limited mobility, and many other topics. (To find the animations, look for Find More Info On, click on Aging, and click on Caregiving Skills.) Housing As health deteriorates, housing becomes a concern. Some elders can stay in the homes they love - if they have help with housekeeping, shopping, and other chores. Others may need assistance with personal services, such as bathing or meal preparation. Although there are agencies that provide these services in every community, so far, there are no good databases that allow you to locate them. Brown of ElderWeb recommends two strategies. One is to go to Yahoo!, type in the name of your elder's community in the Yellow Pages, then search for housekeeping, taxis, lawn services, or even adult daycare. Another alternative is to connect with the Office for the Aging in your parent's community. "Things are very different state to state," says Brown. "You really need someone with their feet on the street who can steer you toward good, reliable services." The Regional Locator on ElderWeb is a good place to start because it provides contact information for community services in all 50 states. The most wrenching decisions must be made when it seems that a parent can no longer live at home. Many children put off considering this issue until there is an emergency, simply because they can imagine only two scenarios - taking a parent into their own home or arranging for nursing home care. The reality is that there are many other options, and the Internet makes it easier to find them. SeniorResource.com provides an unusually clear description of housing possibilities. Click on House Choices to learn more about Aging in Place, ECHO housing, Assisted Living, and other alternatives. Once you've settled on the type of housing that makes sense, a number of sites offer extensive listings of facilities in different categories. A comprehensive directory is available at Eldercare.com, part of CareGuide.com, which provides referrals for both child care and elder care. Their database of more than 75,000 facilities can be searched by location or kind of care. Each entry includes detailed contact information as well as information about the range of services. Eldercare.com has compiled its directory independently, but it offers facilities the opportunity to purchase an "enhanced listing" - similar to an ad in the Yellow Pages - which may include photos or an e-mail link. Facilities that take advantage of this option are marked with stars, but they aren't endorsed or recommended by Eldercare.com. When I searched within my mother-in-law's neighborhood, I found the most thorough listings on Eldercare.com, but you may also want to check ElderSearch.com, Caregiver.com, or Senior Housing Net. All of these sites will help you compile a list of facilities to contact, but they won't help you evaluate quality of service. For that, you need an on-site visit as well as access to the records of agencies that license facilities. Nursing Home Compare lets you learn specific details about any facility that accepts Medicare or Medicaid payments. The records include basic information about the facility and its residents as well as results from recent inspections. Support Some researchers have found that the responsibilities involved in caring for an aging parent feel less burdensome when the caregiver has support. "Caregiving is not universally distressing," says Sharon Tennstedt, Ph.D., author of Family Caregiving in an Aging Society. She points out that recent research shows caregivers do best when they reach out for emotional support before they need it. For many people, online communities provide a ready source of encouragement. "Caregivers often feel isolated," says ElderCare Online's O'Boyle. "Traditional 'folding chair' support groups require people to come together at a specific time and place. The Internet breaks down those barriers." Support is available at so many sites in so many forms that you'll want to be selective. "Caregiving support groups are great at hooking you up with people who know what you're going through," says ElderWeb's Brown. "But they can also be a source of misinformation. Don't make any decisions based simply on someone's advice, no matter how nice they seem." With that caveat, here are some possibilities: CLASSES Third Age offers a free four-week course called Caring for an Aging Parent. Topics of discussion include When to Step In, Exploring Options, Finding Answers, and Monitoring Care. CHAT For chat to be helpful, you have to find a room that's active, moderated, and populated by people with comparable interests. "In some chat rooms, people want to swap pictures of grandkids," says O'Boyle. "In some they want medical advice. Look for one where expectations are comparable with your own." You'll find a list of moderated chat rooms and events at ElderCare Online's Caregiver Support Network. MESSAGE BOARDS These are available on many sites, including those sponsored by organizations devoted to specific diseases or conditions. Often it can be comforting simply to read through the experiences of people in a situation comparable to your own. Before posting a message, be sure you understand the site's privacy policy. Check the number of messages, too. If the board isn't visited often, see if it has an e-mail notification option so you'll know when someone responds to your post. LISTSERV Subscribers to these e-mail lists share a common concern, and active lists often grow into strong and caring communities. ElderCare Online's Caregiver Support Network also has an annotated directory of listservs related to elder care. Other Considerations Some of the issues you'll face with an elderly parent are predictable. For a discussion of the most common ones, visit Senior Care Web, a government-funded site that features helpful articles and worksheets. Other challenges will be unique, determined by the health challenges your parent faces, the kind of relationship you've had in the past, as well as available resources and support. You can research specific questions at ElderWeb, which offers a collection of carefully chosen links on a range of topics. Another excellent source is the list of Web sites maintained by the Administration on Aging. Families that live at a distance from an elder may find it helpful to enlist the services of a geriatric care manager (GCM), who can do interviews and assessments to figure out what services are needed, screen in-home help and other caregivers, advise families on legal and financial issues, and provide crisis management. At this point, GCMs aren't licensed by the government, so their credentials vary. The National Association of Professional Geriatric Care Managers maintains a searchable database of its members as well as helpful advice about finding and working with a GCM. Becoming involved with a parent's finances is uncomfortable but often necessary. Although dozens of Web sites offer advice about estate planning, supplementary insurance, and other issues, most should be viewed with skepticism because the laws governing these matters vary tremendously from state to state. If you need advice, your best bet is to hire a professional in the state where your parent resides. The National Academy of Elder Law Attorneys has a searchable database of its members, as well as helpful advice about finding a qualified attorney who specializes in elder law. Whether a parent lives close to home or at a distance, one of the largest challenges of elder care is coming to terms with the eventual loss of someone who simply can't be replaced. Our cultural predisposition toward optimism makes it hard for many adult children to think clearly about the fact that their parents will die. As a result, they may not know about, much less take advantage of, resources that will provide comfort at the end of life. Growth House gives you a private place to examine many of the issues surrounding death and loss before you have to face them. The Internet, of course, doesn't alter the fundamental challenge of long-distance care. When we were able to visit my mother-in-law during the last months of her life, I could read to her, hold her hand, and coax her to eat or drink. At a distance, I could only hope that our surrogate caregivers were making the same efforts. Still, the information and support we gleaned from the Web did help us find the peace of mind that comes from knowing we were making sound decisions despite sad circumstances. Elders in Cyberspace Ruth Hyman loved her WebTV. When she was in her 90s, with failing eyesight and poor health that kept her confined to an assisted living facility, she'd sit in her recliner and use a wireless keyboard to explore distant places and meet new people. With the help of a friend, she even created her own web site. Since Ruth's death this past February, her family has kept her site going to inspire other families to use the Internet to help seniors keep in touch with long-distance relatives, as well as with the wider world. Seniors who are mentally alert and physically able often need only a nudge to get them online. You'll find that nudge at SeniorNet's Learning Centers, a directory of local resources that provide computer training for seniors. Seniors who are already testing the tech waters can get some tips at the Computers and Technology section at the American Association of Retired Persons' web site. For instance, you can click on Quick Tips to learn how to back up files or send a web page via e-mail. Meet the Challenge A number of pilot projects have demonstrated that the Internet can have a rejuvenating effect on seniors, even those in nursing facilities. "The Internet is a window to life," says David Lansdale, Ph.D., a geriatrics expert who started a program called LinkingAges in several retirement facilities in the San Francisco Bay area. "It's an elixir to these people." Many seniors are anxious about working with computers, so Lansdale likes to teach only small groups, which lets him provide one-on-one attention. Personal interaction, he finds, helps elders overcome their anxiety about technology so they can master the skills needed to use e-mail and the Internet. Know Your E-Sources For seniors with vision, mobility, or cognitive problems, the computer offers both opportunities and challenges. Elders who need technical adaptations to make computer use a more comfortable experience should visit The Disability Mall, which offers information about assistive devices that make it easier to use computers and get online. For example, seniors with vision problems can buy computers with bigger screens and software that enlarges type size. And elders who have arthritis or tremors may be able to navigate better with touch screens, trackballs, or modified keyboards. Another worthwhile site is Microsoft's Accessibility page, which includes information on how computers (and Microsoft products) can be adapted for people with vision, hearing, mobility, or cognitive challenges. Families may also be able to get problem-solving ideas by posting questions on SeniorNet's computer-related message boards.