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WRITTEN BY WENDY J. MEYEROFF
C
heryl Woodson, M.D., vividly recalls the period when she brought her mother, who had developed Alzheimer’s disease, from Philadelphia to live in Woodson’s home near Chicago. While her mother had lots of family out East, Woodson felt her neighborhood was no longer safe. “So I got sneaky,” Woodson said. “I brought her from her home to mine at Christmas and just kept putting off her return. She’d ask, ‘When am I going home?’ and I ignored it.” It worked—but only for a while. Not only did her mother want to go home, but Woodson soon realized that she simply couldn’t provide the attention her mother 12 • care ADvantage • SPRING/SUMMER 2009
needed. At the time, she was raising two young children and focusing on her practice as a geriatrician—putting in up to 60 hours weekly taking care of other people’s loved ones. The irony wasn’t lost on Woodson. But it also gave her an excellent perspective on how it feels and what it takes to succeed as a long-distance caregiver. According to the National Institute on Aging (NIA), approximately seven million Americans are long-distance caregivers, mostly caring for aging relatives living more than one hour away. For long-distance caregivers, emotions—especially guilt and frustration—can run high. Connie Howard, a secretary at the University of Arkansas in Fayetteville,
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knows that all too well. Her 79-year-old mother was diagnosed with dementia in 2004 and lives alone, 900 miles away in her own home in Illinois. Howard, the oldest of four children, none of whom live near their mother, has taken on most of the caregiving responsibilities. She admits it isn’t easy not feeling guilty about the miles that separate her and her mother, but she does her best to live by this motto: “Don’t blame yourself. Know you’re doing what you can do.” Teri Kanatzer has witnessed this over and over again in her role as coordinator of the Eldercare program at the University of Kentucky in Lexington, KY. Established in 1990 as the country’s first university-offered eldercare program, it helps employees care for older loved ones, many of whom live far away. Evident of the need, the program’s annual caseload has increased from about 200 to 300 clients a decade ago to at least 1,000 today—with “a fair number” involving Alzheimer’s disease. “Usually when we get a long-distance caregiver, they’re not physically drained from caregiving, but they’re frustrated, dealing with guilt,” Kanatzer said. “We help them work through the emotions.” Its interventions include finding caregiver support groups and helping employees navigate the Family Medical Leave Act. Kanatzer’s team also helps staffers see that their first instinct may not really be the best way to truly assist their loved ones. Woodson’s response—move your loved one to you—is common, but Kanatzer said that’s not always best. “With fewer doctors accepting Medicare, you don’t know if you’ll be able to find them health care if they move. Plus their support, like their church and friends, is back home,” she said. Instead of getting caught up in emotions, try being proactive and take charge of what’s doable from a distance. According to the NIA, many long-distance caregivers act as “information coordinators,” helping aging parents understand the confusing maze of home health aides, insurance benefits and durable medical equipment. (Issues are different for long-distance caregivers if, for example, a primary caregiver lives with the person with dementia, if an individual resides alone, if there is a part-time home health aide, etc.) For starters, ask yourself what skills you have that can be of service remotely. Should you be talking to the doctors, monitoring bank accounts or interviewing professional caregivers? Do what you’re good at within your time allowance, and delegate other chores to relatives, friends or experts.
Howard, for one, handles her mother’s day-to-day finances, paying her bills and balancing her checkbook, while her brother handles their mom’s investments. And, applying her organizational skills, she arranged for an emergency call system; implemented a system to manage medications; and juggles her mother’s appointments, figuring out who will take her where and when. Differently, when Susanne Bjorner’s father was living with Alzheimer’s disease, she tapped her editorial skills to provide long-distance backup support to her mother, the primary caregiver, and her sister, who lived 15 minutes away. Bjorner would research new medicines and treatments and be an objective sounding board to her sister when disputes arose. And she managed to contribute all this from overseas: her parents were in Cincinnati and she was working in Spain at the time. For primary caregivers who are performing their role from a distance, it helps to set up a support system back home. “Good support makes you feel comfortable delegating. It creates empowerment,” said Debbie Mandel, author of “Changing Habits: The Caregivers’ Total Workout.” Kanatzer said that part of her job is to help clients realize this. “Relying on outside resources isn’t a sign of weakness, especially if it provides the best care for your loved one.” Woodson calls this getting the “S”—as in Superman— off one’s chest and stepping away from the draining kryptonite of guilt. “You have to recognize that even if you lived next door, you still couldn’t do everything,” she declared. “In many families, one caregiver tries to do what it often really needs three full-time nurses or aides to do. So learn to be the linebacker, not the quarterback.” Another reason the at-home support system is so important is because people with Alzheimer’s disease can be very good at hiding their decline. But imagine you’ve just talked to a neighbor, who is concerned that your dad hasn’t been to church in three weeks. Then in your next phone conversation with your father, he tells you how much he enjoyed that week’s sermon. That’s a red flag that something isn’t right. SPRING/SUMMER 2009 • care ADvantage • 13
In creating a support system, a first step is to determine which relatives, friends and neighbors you can rely on. Perhaps they can provide transportation, oversee medication management, run errands—and generally keep you informed on how things are going. “There’s always a saint; someone who will help you long-distance,” said Mandel, who was a long-distance caregiver for 16 years, first when her father and then when her mother developed Alzheimer’s disease. Howard agreed: “I can’t be there to take her to the doctor…. So I call someone and ask, ‘Can you take Mom to ____ on Thursday?’” 14 • care ADvantage • SPRING/SUMMER 2009
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How often are you aware of a friend or family member caring for someone ill and wonder, “How can I help?” And yet, even more often, how many times does a caregiver feel too embarrassed to pick up the phone and admit, “I can’t do this alone...”? Online support networks and caregiving circles are now emerging to help care providers and care recipients, especially those separated by distance, stay in touch, get organized and coordinate care. Among them, CareCentral (www.carecentral.com), a service of HealthCentral.com, enables friends and family to create a secure, online “central hub” that permits users to keep track of volunteers’ caregiving assignments and to post photos, journal entries and announcements. Lotsa Helping Hands (www.lotsahelpinghands.com) also is a free social networking site that provides a way for interested individuals with an ill person in common to connect during a time of need and coordinate responsibilities, such as meals and doctor’s appointments, via an interactive daily calendar. A “care coordinator” manages volunteers and calendar listings on each personalized Web site. To date, more than 14,000 helping hands communities have been formed. “For years we were struggling to manage caregiving with colleagues, friends and family. The primary purpose of Lotsa Helping Hands is a way to bring these communities together,” said Hal Chapel, the site’s co-founder. For those facing the challenges of providing care over long distances, it’s a way to organize volunteers near the care recipient, he added. Sheila Warnock and Cappy Caposella capture the essence of the collaborative caregiving approach in their book, “Share the Care” (www.sharethecare.org), which was inspired by care circles Warnock helped form to care for Caposella, who has since passed away from cancer, and another ill friend.
The book provides a blueprint for forming a care team and a workbook to keep members organized and updated. The model relies on a team of two in addition to the primary caregiver who determines the skills of volunteers, prepares for the first meeting and identifies what is needed. According to Warnock, “The possibilities are limitless.” Just ask John Burnett, who is caring for his wife, Jan, who has Alzheimer’s disease. Since forming his Share the Care team in August 2007, a steady group of volunteers in Denver, CO have helped with everything from teaching him how to cook to taking his wife to the museum. “We didn’t have the type of ongoing support that we needed,” Burnett said. “The Share the Care team substitutes for the friends and family who may not be available for the kind of things you need.” Both Chapel and Warnock agree that a metamorphosis often takes place within these communities as relationships form and the groups continue on long after those who are ill have passed away. Noted Warnock: “Many times people who have been part of someone’s group really are changed by the experience, and they very often help people in the community develop Share the Care groups. They go on to help others, and it’s like a flower that keeps blooming and blooming and spreading in that way.” — JESSIE OSBORNE
It’s also important to clarify the ground rules and responsibilities within the support network, and make sure everyone is in agreement. This consensus can be reached via a family conference and updated with regular phone calls, which include the person with the disease if he or she can participate. Formal caregiving circles and Web-based private group care calendars in which family, friends and others coordinate who will do what and when are one of the latest trends in care management (see sidebar). Look beyond family and neighbors to other local options. For example, check on the availability of visiting
nurse services, friendly visitor programs and Meals on Wheels home-delivered meal services. Not only will these types of visitors provide socialization, they might be more likely to observe signs of decline or detect if additional assistance is warranted. Help from professionals, such as social workers and geriatric care managers, also can be a critical investment. They can steer you to appropriate local resources and can act as an impartial mediator if family members disagree on issues. The cost for professional geriatric managers varies by region, professional background and the services provided. “[Geriatric care managers} provide valuable feedback on the next options you can consider; for example, whether a home aide is now needed or should that step be skipped for a nursing home?” said Phyllis Brostoff, president of the National Association of Professional Geriatric Care Managers, based in Tucson, AZ. You can also gain peace of mind by taking some safety precautions. For example, make sure your loved one’s living environment is free of hazards that could cause falls or fires; arrange for emergency alert systems, like medical ID bracelets and emergency call buttons; and keep a list of the person’s doctors, medications, medical history and healthcare directives in case of emergency. Even with this, it’s easy to slip—to feel that you’re just not doing enough. Try considering your distance an advantage, giving you a more objective view when you visit of how your loved one is functioning; family and friends with more frequent contact might not spot subtle changes. “We often get calls from people after the holidays; they quickly noticed things that are different since their last visit,” Kanatzer said. Keep in mind: with Alzheimer’s disease, symptoms can progress quickly so what you witnessed during Christmas may no longer be the case by Easter, for example. So combine business with pleasure when you’re home. Use your time wisely to honestly judge the situation and institute changes that need hands-on attention— everything from assessing signs of self-neglect or mistreatment by others and how well the person handles activities of daily living to making safety changes in the home, interviewing professional caregivers and investigating adult day programs or nursing homes. According to Brostoff, in bringing in professionals, “We try to make people available for holiday, weekend and evening interviews. It’s a good idea before you arrive
to review fee schedules and get an idea of the questions you want to ask.” Likewise, have a plan for when living at home is no longer viable. Woodson ultimately moved her mother from a system in which relatives dropped by around the clock to living in a nursing home, where she ultimately passed away. Even when your loved one no longer knows you, visits can keep the personal connection alive. “I learned to appreciate just being there when I visited,” said Mandel, whose parents are now deceased. “When my mother didn’t know my name anymore, just touching her was enough.” WENDY MEYEROFF is the owner of WM Medical Communications, Baltimore, and has been writing about national health care issues for more than two decades.
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