September/October 2009

Meeting the Challenges of Long-Distance Caregiving
By Athan Bezaitis, MA
Aging Well
Vol. 2 No. 4 P. 14

Skilled professionals and cutting-edge technologies combine to effectively dispatch tasks related to caring for loved ones living far from concerned caregivers.

Overcoming the challenges of caring for an ailing loved one from afar takes organization, teamwork, and a certain amount of trust that tasks will be completed without direct supervision. The process calls for gathering family members, tapping into community support, and dealing with a never-ending line of medical and legal professionals. The goal is to make life as independent and comfortable as possible for the older adult in need while maintaining one’s own sanity at the same time. Fortunately for overwhelmed caregivers who live far away from older adults in their charge, there is someone who can help.

No, it’s not Superman—although the ability to fly at superhuman speeds would certainly come in handy for this job. It’s a geriatric care manager, a professional trained in long-term care with a specialized focus on issues of aging. Minus the cape, the care manager assesses the older adult’s living situation and devises a plan of action for the caregiver that can help make the experience both rewarding and relatively worry free.

Unique Profiles and Problems
Most of the approximately 7 million long-distance caregivers in America are well educated, affluent, and married, according to studies from AARP, MetLife, and the National Council on Aging. Their ages generally range from 46 to 51, with 60% of them being women and just over 20% caring for parents with dementia. “On average, long-distance caregivers live between 300 and 450 miles away and spend about four to seven hours traveling one way to the care recipient,” says Cathy Jo Cress, MSW, an instructor in geriatric home care management at San Francisco State University and the author of Care Managers: Working With the Aging Family.

Regardless of caregivers’ sex or socioeconomic status, distance makes the already difficult job of caring for an ailing loved one even more difficult. The experience of a long-distance caregiver is much different from and usually more complicated than that of a caregiver who lives nearby. “It’s important to know the local resources and services and also to have in place a strong support system to communicate with weekly, to keep good notes, and to join a support group,” says Donna Benton, PhD, director of the Los Angeles Caregiver Resource Center. “Too frequently, long-distance caregivers do not ask for help, do not keep updated lists, and do not have emergency backup plans.” They also face increased costs in travel and time. According to a 2007 study from Evercare, long-distance caregivers spend an average of $8,728 per year on care provision compared with $4,500 to $5,885 for all other caregivers.

On average, these caregivers miss an estimated 20 hours of work per month. Many are forced to arrive late or leave early, miss workdays, rearrange their work schedules, use unpaid leave time, and even resign. “As a long-distance caregiver, it is important to talk to employers about taking time off,” says Peggy McFarland, PhD, LCSW, a geriatric care manager and cofounder of Senior Management Services in Pennsylvania. Several larger companies offer workplace flexibility programs that help deal with the illnesses of family members. In some cases, they even offer counseling to long-distance care providers, but most businesses have neither the resources nor the funding to support caregivers’ circumstances.

The crunch of caregiver demands frequently leads to depression, anxiety, and a feeling of helplessness. Caregiver overload is especially common among the sandwich generation, or those caring for their aging parents along with their own children. “When the long-distance caregiver tends to ailing parents, they feel they are neglecting their family and other responsibilities,” Cress says. “Yet when they tend to their family, spouse, or job, they feel they are neglecting their parents.” A geriatric care manager can help ease this burden by offering counseling or recommending a family counselor.

Care Manager Essentials
The National Association of Professional Geriatric Care Managers Web site (www.caremanager.org) provides a tool for locating care managers. A care locator feature allows users to input a relative’s zip code to find nearby professionals. As for fees, AARP reports the average national geriatric care manager rate is $74 per hour, with a standard charge for an initial consultation of around $175, as well as $168 to develop a care plan. “For a long-distance caregiver, it’s money they feel they have to pay,” McFarland says. “Sometimes family members split the cost to feel secure and make sure their loved ones are taken care of.”

Common needs of long-distance caregivers for which a geriatric care manager can offer support include physical assistance with activities of daily living, companionship, housekeeping help, health updates, and awareness of local services and resources. “The goal is to maximize independence and autonomy for the care recipient while supporting families and caregivers,” says Irene Zelterman, MSW, LCSW, a New York State-certified social worker who specializes in assisting older adults and their families. “We try to keep older people in their homes for as long as possible while continuing to monitor and assess whether this situation is in their best interest.”

The care manager often acts as a family counselor. “You can’t teach aging without teaching family,” Cress says. “Sometimes, you’ll be bringing multiple midlife siblings together for the first time as adults. It helps for them to think of their situation like sand in an hourglass. Even if they’re spread across the country, they have to come together as a team to care for Mom and Dad.”

Seeing their parents as frail and dependent can be especially difficult. “A lot of adult children are so fearful for their parents. Others want to keep them safe without regard for quality of life or personal preferences,” Zelterman says. Such misunderstandings lead to misguided expectations. “Without understanding the system, they’re prone to be driven by fear. No matter what the adult child has told me in advance, I don’t get a true read on the situation until I visit older adults in their homes,” she says.

Assessment and Care Planning
A psychosocial and functional evaluation is an important first step. “Every family needs that first assessment, two hours analyzing the whole situation from healthcare to social needs to safety issues,” McFarland says. The appraisal should provide a clear picture of the situation so that the family can identify and act on all options. “I start with basic demographic information from the family,” Zelterman says. “Then I make a home visit and notice everything. What does it look like on the outside? Is it being kept up? If it’s an apartment, are there stairs in the lobby? Is it wheelchair accessible?” Sometimes, just getting through the front door can be a major obstacle.

Once the assessment is completed, the care manager can help organize the family by divvying up responsibilities. “The more open the family, the better,” Zelterman says. One sibling can pay bills. Another can organize paperwork. There can be more than one long-distance care provider, each of whom is responsible for different tasks. “If there’s more than one family member, it’s nice if they can put a routine into place,” McFarland says. “For example, the brother calls Mom on Mondays and Thursdays, then the sister talks to her on Tuesdays and Sundays. You can set up a system so that the ailing parent knows who will be calling and when. Visits can also be organized and spaced out this way.”

Taking Precautionary Action
Precautionary measures help to establish a plan of action and build a network of support. “I try to encourage families to prepare for emergencies before they ever happen,” McFarland says. This means investigating available resources such as hospitals, skilled nursing care, rehabilitation centers, assisted living facilities, and respite and home care. It also entails identifying the caregiving team, both the local and long-distance members.
In Care Managers, Cress includes a chart that divides important preventive measures into four categories: legal-financial tasks, medical tasks, social-familial tasks, and spiritual-emotional tasks.

Legal-financial tasks include the preparation of personal documents, such as a will, joint ownership, a trust, durable power of attorney, preferred possession list, and advanced directives, including healthcare proxy, do-not-resuscitate orders, and a living will. Medical tasks consist of developing lists of healthcare providers and telephone numbers, current medications and medical records, and local emergency service providers. Social-familial tasks involve convening a family conference to formulate plans; obtaining the phone numbers, names, addresses, and e-mail addresses of three people who live near the care recipient; and discussing the possibility of a panic button service. Spiritual-emotional tasks include identifying wishes for funeral and burial or cremation and establishing a point of contact with at least one member of a preferred religious institution.

Cress recommends making a binder and putting all documents into a safe deposit box. She suggests making copies and converting them into an electronic format that can be available at a shared site where family members can access the information. “There are several online sites which allow for the aggregation of this information that can be accessed from anywhere,” Benton says. ElderIssues’ LifeLedger is a secure way to record and store health records, financial information, and medication history. Microsoft’s HealthVault offers similar organizational features at no cost, with guaranteed privacy. “It is important to look at them and find the one that best suits your needs,” Benton says.

On-Location Monitoring
According to the Handbook of Geriatric Care Management, also coauthored by Cress, a geriatric care manager provides important monitoring services on behalf of the long-distance caregiver. Responsibilities in this capacity include checkups on care recipients that assess how their needs have changed; accompanying clients to appointments for medical, financial, or legal support; arranging for transportation; hiring and supervising care staff; providing status reports; and being on call in case of an emergency. McFarland works with families who have even hired her to check on loved ones residing in nursing homes. “Some clients appreciate that I stop by once a month to make sure their parents are being cared for,” she says. She predicts that the observational role of geriatric care managers will expand as the aging population continues to grow in number and as adult children’s careers more frequently force them to relocate.

Care managers can also help plan visits with older adults. Cress recommends considering important questions about the purpose of each trip, such as will this visit be for information collecting, and how long should the visit be? Cress warns against swooping, which, she says, occurs when an adult child visits with the good intention of making up for lost time but interferes with the planned responsibilities of the primary caregiver. Often, she notes, a geriatric care manager can help to avoid swooping by identifying high-priority issues and helping clients concentrate on spending quality time with their parents.

By plugging the long-distance caregiver into a network of nationwide elder transitional businesses, the care manager can also play a role in the decision to relocate an elder. For interstate moves, the company in the state that does the hiring coordinates with a specialized elder moving company on the destination end that does the unpacking; some even go so far as to stock food in the refrigerator.

Technology’s Essential Role
Family meetings help geriatric care managers maintain communication. Their main purpose, Cress says, is to discern which relatives will provide what types of support. Beyond the conference call, a variety of accessible Web-based technologies are available to assist with these gatherings. Several companies provide virtual Web meeting places for friends and family such as CarePages and CaringBridge. Affordable computer-based video conferencing is also available through services such as Skype.

To overcome the feelings of isolation that many older adults face, Jitterbug offers easy-to-use cell phones that feature large screens with bright text. Other clever gadgets encourage technologically enhanced communications without the necessity for a computer. Presto allows for the exchange of e-mails and photographs using the Presto Printer. Celery offers a similar tool that allows users to send and receive e-mail through any fax machine. Also available are CEIVA digital photo frames that allow the uploading of digital images from anywhere in the world.

For varying situations, different technologies may be appropriate. Zelterman uses simple contraptions such as a mat that rings in order to prevent wandering or a baby monitor to help keep watch over older adults’ movements at night. More advanced digital equipment allows for the supervision of home environments and provides assistance with medication management, as well as with healthcare monitoring. Cress advises care managers to assist with system design, installation, and oversight of new technologies.

Residential monitoring systems utilize wireless motion detectors and cameras that track movements within the home. The Internet provides a centralized information hub. Currently available products include Rest Assured, Xanboo, AT&T Remote Monitor, QuietCare, and GrandCare. These systems provide reports and allow for virtual visitation, personal video conferencing, and emergency preparedness. Other common tools are personal emergency response systems such as Philips Lifeline, through which a distress signal is released at the touch of a button, sending an urgent message to a 24-hour response center.

Home telehealth systems, such as Health Hero’s iCare Health Buddy appliance, ask a series of questions about users’ vital signs, symptoms, and behaviors. The systems send responses to a secure data center where medical professionals have authorized access. The e-pill company offers medication reminders, including electronic pill timers and pill organizers, vibrating watches, countdown timers, and automatic pill dispensers. Even the toilet can be used as an intelligent telehealth system. And the Japanese corporation Toto has developed a toilet that analyzes blood sugar levels, body weight, and fat percentage and also features a blood pressure cuff. Despite the costs of innovative technology, keeping older adults in their homes is still generally less expensive than placement in nursing homes.

An Arsenal of Resources
“Home is where they want to be, and the quality of their life will be so much better,” Zelterman says of older adults. “It’s all about aging in place,” Cress adds.

For family members who want to be assured their loved ones are well situated, care managers can provide peace of mind in a time of need. They may not be faster than a speeding bullet or capable of leaping tall buildings in a single bound, but they have an ample supply of resources at their disposal that make them real-life problem solvers.

— Athan Bezaitis, MA, is a freelance writer based in southern California.

Resources
• Caregiving From a Distance (www.cfad.org): This Web site aims to help families find needed resources. It helps long-distance caregivers organize efforts and identify both public and private service providers. “Even if you can’t provide local hands-on support, you can help a great deal by accepting responsibility for many important caregiver tasks,” the Web site states. “You can research medical treatment and care options such as home-delivered meals, transportation services, and appropriate housing. You can handle finances and insurance claims, and provide local caregivers needed respite.”

• Family Caregiver Alliance (www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=849): This Web page offers a fact sheet to help long-distance care providers to consider relocation as an option. Also available through the alliance is the Handbook for Long-Distance Caregivers.

• SmartSilvers Alliance (www.smartsilvers.com): This Web site promotes consumer-friendly products and technology-leveraged services that cater to the unique needs of elders.