WRITTEN BY WENDY J. MEYEROFF

heryl Woodson, M.D., vividly recalls theperiod when she brought her mother, whohad developed Alzheimer’s disease, fromPhiladelphia to live in Woodson’s home

near Chicago. While her mother had lots of family outEast, 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 puttingoff her return. She’d ask, ‘When am I going home?’ andI ignored it.”It worked—but only for a while. Not only did her

mother want to go home, but Woodson soon realizedthat she simply couldn’t provide the attention her mother

needed. At the time, she was raising two young childrenand focusing on her practice as a geriatrician—puttingin up to 60 hours weekly taking care of other people’sloved ones.The irony wasn’t lost on Woodson. But it also gave her

an excellent perspective on how it feels and what it takesto succeed as a long-distance caregiver. According to theNational Institute on Aging (NIA), approximately sevenmillion Americans are long-distance caregivers, mostlycaring for aging relatives living more than one hour away.For long-distance caregivers, emotions—especially

guilt and frustration—can run high. Connie Howard, asecretary at the University of Arkansas in Fayetteville,

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knows that all too well. Her 79-year-old mother wasdiagnosed with dementia in 2004 and lives alone, 900miles away in her own home in Illinois. Howard, theoldest of four children, none of whom live near theirmother, has taken on most of the caregivingresponsibilities.She admits it isn’t easy not feeling guilty about the

miles that separate her and her mother, but she does herbest to live by this motto: “Don’t blame yourself. Knowyou’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 theUniversity of Kentucky in Lexington, KY. Established in1990 as the country’s first university-offered eldercareprogram, it helps employees care for older loved ones,many of whom live far away. Evident of the need, theprogram’s annual caseload has increased from about 200to 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’refrustrated, dealing with guilt,” Kanatzer said. “We helpthem work through the emotions.”Its interventions include finding caregiver support

groups and helping employees navigate the FamilyMedical Leave Act.Kanatzer’s team also helps staffers see that their first

instinct may not really be the best way to truly assisttheir loved ones. Woodson’s response—move your lovedone to you—is common, but Kanatzer said that’s notalways best.“With fewer doctors accepting Medicare, you don’t

know if you’ll be able to find them health care if theymove. 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 adistance. According to the NIA, many long-distancecaregivers act as “information coordinators,” helpingaging parents understand the confusing maze of homehealth aides, insurance benefits and durable medicalequipment. (Issues are different for long-distancecaregivers if, for example, a primary caregiver liveswith the person with dementia, if an individualresides alone, if there is a part-time home healthaide, etc.)For starters, ask yourself what skills you have that

can be of service remotely. Should you be talking tothe doctors, monitoring bank accounts or interviewingprofessional caregivers? Do what you’re good at withinyour time allowance, and delegate other chores torelatives, friends or experts.

Howard, for one, handles her mother’s day-to-dayfinances, paying her bills and balancing her checkbook,while her brother handles their mom’s investments. And,applying her organizational skills, she arranged for anemergency call system; implemented a system to managemedications; 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 hereditorial skills to provide long-distance backupsupport to her mother, the primary caregiver, andher sister, who lived 15 minutes away. Bjorner wouldresearch new medicines and treatments and be anobjective sounding board to her sister when disputesarose. And she managed to contribute all this fromoverseas: her parents were in Cincinnati and she wasworking in Spain at the time.For primary caregivers who are performing their role

from a distance, it helps to set up a support systemback 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 ofweakness, especially if it provides the best care for yourloved one.”Woodson calls this getting the “S”—as in Superman—

off one’s chest and stepping away from the drainingkryptonite of guilt.“You have to recognize that even if you lived next door,

you still couldn’t do everything,” she declared. “In manyfamilies, one caregiver tries to do what it often reallyneeds three full-time nurses or aides to do. So learn tobe the linebacker, not the quarterback.”Another reason the at-home support system is so

important is because people with Alzheimer’s disease canbe very good at hiding their decline. But imagine you’vejust talked to a neighbor, who is concerned that your dadhasn’t been to church in three weeks. Then in your nextphone conversation with your father, he tells you howmuch he enjoyed that week’s sermon. That’s a red flagthat something isn’t right.

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In creating a support system, a first step is to determinewhich relatives, friends and neighbors you can rely on.Perhaps they can provide transportation, overseemedication management, run errands—and generallykeep 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-distancecaregiver for 16 years, first when her father and thenwhen 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 Momto ____ on Thursday?’”

It’s also important to clarify the ground rules andresponsibilities within the support network, and makesure everyone is in agreement. This consensus canbe reached via a family conference and updated withregular phone calls, which include the person with thedisease if he or she can participate. Formal caregivingcircles and Web-based private group care calendars inwhich family, friends and others coordinate who will dowhat and when are one of the latest trends in caremanagement (see sidebar).Look beyond family and neighbors to other local

options. For example, check on the availability of visiting

14 • care ADvantage • SPRING/SUMMER 2009

How often are you aware of a friend or family member caringfor someone ill and wonder, “How can I help?” And yet,even more often, how many times does a caregiver feel tooembarrassed to pick up the phone and admit, “I can’t dothis 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, getorganized and coordinate care.Among them, CareCentral (www.carecentral.com), a

service of HealthCentral.com, enables friends and familyto create a secure, online “central hub” that permits usersto keep track of volunteers’ caregiving assignments and topost photos, journal entries and announcements.Lotsa Helping Hands (www.lotsahelpinghands.com) also is

a free social networking site that provides a way for interestedindividuals with an ill person in common to connect duringa time of need and coordinate responsibilities, such as mealsand doctor’s appointments, via an interactive daily calendar.A “care coordinator” manages volunteers and calendarlistings on each personalized Web site. To date, more than14,000 helping hands communities have been formed.“For years we were struggling to manage caregiving with

colleagues, friends and family. The primary purpose ofLotsa Helping Hands is a way to bring these communitiestogether,” 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 carerecipient, 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 wasinspired by care circles Warnock helped form to care forCaposella, who has since passed away from cancer, andanother ill friend.

The book provides a blueprint for forming a care teamand a workbook to keep members organized and updated.The model relies on a team of two in addition to theprimary 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 theCare team in August 2007, a steady group of volunteers inDenver, CO have helped with everything from teaching himhow 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 teamsubstitutes for the friends and family who may not beavailable for the kind of things you need.”Both Chapel and Warnock agree that a metamorphosis

often takes place within these communities as relationshipsform and the groups continue on long after those who areill 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 developShare the Care groups. They go on to help others, andit’s like a flower that keeps blooming and blooming andspreading in that way.”

— JESSIE OSBORNE

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nurse services, friendly visitor programs and Meals onWheels home-delivered meal services. Not only will thesetypes of visitors provide socialization, they might be morelikely to observe signs of decline or detect if additionalassistance 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 andcan act as an impartial mediator if family membersdisagree on issues. The cost for professional geriatricmanagers varies by region, professional backgroundand 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 stepbe skipped for a nursing home?” said Phyllis Brostoff,president of the National Association of ProfessionalGeriatric Care Managers, based in Tucson, AZ.You can also gain peace of mind by taking some

safety precautions. For example, make sure yourloved one’s living environment is free of hazards thatcould cause falls or fires; arrange for emergency alertsystems, like medical ID bracelets and emergencycall buttons; and keep a list of the person’s doctors,medications, medical history and healthcare directivesin case of emergency.Even with this, it’s easy to slip—to feel that you’re just

not doing enough. Try considering your distance anadvantage, giving you a more objective view when youvisit of how your loved one is functioning; family andfriends with more frequent contact might not spotsubtle changes.“We often get calls from people after the holidays; they

quickly noticed things that are different since their lastvisit,” Kanatzer said.Keep in mind: with Alzheimer’s disease, symptoms

can progress quickly so what you witnessed duringChristmas may no longer be the case by Easter, forexample.So combine business with pleasure when you’re home.

Use your time wisely to honestly judge the situationand institute changes that need hands-on attention—everything from assessing signs of self-neglect ormistreatment by others and how well the person handlesactivities of daily living to making safety changes inthe home, interviewing professional caregivers andinvestigating adult day programs or nursing homes.According to Brostoff, in bringing in professionals,

“We try to make people available for holiday, weekendand evening interviews. It’s a good idea before you arrive

to review fee schedules and get an idea of the questionsyou want to ask.”Likewise, have a plan for when living at home is no

longer viable. Woodson ultimately moved her motherfrom a system in which relatives dropped by aroundthe clock to living in a nursing home, where sheultimately 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, justtouching her was enough.”

WENDYMEYEROFF is the owner of WM MedicalCommunications, Baltimore, and has been writing aboutnational health care issues for more than two decades.