Pain-Free Living

Caring From a Distance

By Paul Wynn

Despite living with severe rheumatoid arthritis (RA) and working a full-time job as a physical therapist, Kathy Fleenor is a long-distance caregiver to her mom and elderly aunt. A mother with two grown sons of her own, Fleenor has seen and done it all. She assumed care for her mom after a debilitating car accident, including organizing her finances, and she also emptied and packed up her aunt’s house and found her an assisted living facility.

Fleenor, who lives outside of Cincinnati with her husband, says that managing her RA in addition to being a caregiver is a constant challenge. “Juggling the needs of my mom and aunt on top of the demands of my job has been one thing, but taking care of my own health adds another level of anxiety to everything,” she says. “Visiting my mom in the hospital was stressful because my weakened immune system left me susceptible to infections, which required two rounds of antibiotics.”

If you live more than an hour away from your loved one, then you can consider yourself a long-distance caregiver. According to a joint report by the National Alliance for Caregiving and AARP, there are an estimated 66 million caregivers in the United States. About 15% live an hour or more away from their loved ones; a significant number of those live many miles away and need to fly to see their family member. In the past, these tasks typically fell to women, but men now represent about 40% of all caregivers.

Caring from far away

What exactly do long-distance caregivers do? The responsibilities can vary and don’t necessarily follow a single formula. Fleenor is now the primary caregiver to her aunt, who has no children, and has taken responsibility for all her needs—everything from health to financial and legal matters.

Fleenor was a secondary long-distance caregiver for her mom, who died over the summer. Fleenor’s sister, Rebecca, who also has severe RA, moved their mom in with her family, and Fleenor helped her sister divide the responsibilities and share the burden as much as she could. For instance, Rebecca, a former nurse, handled the medication and health issues while Fleenor focused more on her mom’s finances, because that’s something she could do remotely.

As loved ones age or suffer from poor health, independent living becomes ever more difficult. Caregivers often struggle to determine the best and safest options. Do they let their parents age in the home, which in all likelihood isn’t set up with a first-floor bedroom and bathroom or any safety devices? What happens when Mom or Dad can’t live alone anymore? Do caregivers look for an assisted living facility to manage their parents’ daily needs?

What about moving the parents closer to family members so they can be watched closely and have someone nearby for emergencies? Many long-distance caregivers know firsthand that loved ones often don’t want to move from the homes and communities where they have built a lifetime of memories and personal connections.

“There’s a strong and natural tendency to want loved ones nearby as they get older,” says Gary Barg, founder and editor of caregiver.com and the author of The Fearless Caregiver. Barg explains that all caregivers typically deal with a number of questions. How do you know whether Mom is really eating well? Is Dad taking his medications? What happens if my parents don’t want to move into an assisted living facility? Are they going to their doctor appointments, and what did they find out? How much longer should they drive? Many families struggle with these questions, says Barg, which become even more pronounced when there are many miles separating them.

Managing guilt

One of the biggest challenges of being a long-distance caregiver is dealing with the guilt of not living close by. Day-to-day caregiving is extremely difficult in any circumstance, but Barg—who was a long-distance caregiver to his mom, who suffered from Alzheimer’s disease—says people underestimate how emotionally charged caring from a distance can be.

Distance creates its own set of problems. For example, caregivers worry about what will happen in emergencies when they can’t get there right away—and that’s where the guilt arises. “Long-distance caregiving means constant juggling that often leads to feelings of inadequacy,” says Gail Hunt, president and CEO of the National Alliance for Caregiving, a non-profit group based in Bethesda, Md. “Most caregivers feel guilty because they think they aren’t doing enough for their loved ones.”

As a result, caregivers often ignore their own personal and health needs, which can be detrimental to their physical and emotional well-being. In one survey of caregivers, one-third admitted that managing their own stress is something that they wanted more help with, and a similar number said that they wanted more time to themselves.

The important thing for caregivers to remember, says aging expert Donna Wagner, PhD, professor and dean with New Mexico State University in Las Cruces, N.M., is that they are not alone. “Caregivers tend not to take care of themselves, so they burn out very easily,” says Wagner. “It’s essential for them to get exercise, take mental breaks, and ask for help.”

She adds that caregivers can find it rewarding to share their experiences with others through support groups. Nowadays, support groups are available not only in community settings, but also online.

Balancing your own needs

For people living with arthritis, overlooking their own health needs can be extremely risky. Fleenor, who has lived with RA for about 16 years, readily admits that she has suffered flare-ups because of the stress from caregiving. For example, when it came time to empty out her aunt’s house, Fleenor relied heavily on her dad, her sons, and herself to help pack boxes and move. “If I had to do it all over again,” she says, “I would have hired someone to pack up her house. It was too physically demanding for me.”

On a few occasions, Fleenor had to visit her mom for health emergencies, and sometimes those visits took longer than expected. Once she forgot her medications, Enbrel and Celebrex, and her supplement vitamin D. She recommends to fellow caregivers—especially those with arthritis—to always bring medications and supplements with them, because it’s impossible to know when a day trip may turn into an overnight stay.

Like Fleenor, many long-distance caregivers also have to deal with a full- or part-time job while managing the demands of caregiving, which can require taking time off from work. It’s virtually inevitable that caregivers will miss work to help with doctor visits or meet with paid-care providers. “It’s been a challenging few years, juggling the needs of my mom and aunt with the demands of my job and taking care of my own health so I don’t flare,” says Fleenor.

Adjustments to work schedules—coming in late, leaving early, telecommuting, and missing days of work to accommodate caregiving responsibilities—are all commonplace. In one survey, half of all respondents reported making major adjustments at work, with 44% saying that they had rearranged their work schedule. A small percentage of caregivers switch from full time to part time to make more time for caregiving; others make accommodations by turning down work travel. One attorney who lived several states away from his dad in Florida would regularly take Fridays or Mondays off to go to doctor visits and handle the grocery shopping and other chores.

AARP family and caregiving expert Amy Goyer says there are many creative ways to take time off from work. A former long-distance caregiver to her own parents, Goyer says that many caregivers take advantage of a combination of vacation, sick time, and even unpaid personal leave. For example, under the Family and Medical Leave Act (FMLA), eligible employees can take unpaid, job-protected leave and maintain their health insurance coverage. Taking care of a parent is considered a qualified reason. The 12 weeks of unpaid leave don’t have to be consecutive, but they do need to be taken within a 12-month period. (Goyer adds that companies with fewer than 50 employees aren’t required to provide unpaid leave, and employees have to work a certain number of hours to qualify.)

Fleenor used the FMLA provisions to take almost four weeks off after her mom was in a serious car accident. “My company was very generous with my time off,” Fleenor says. “I would highly recommend that caregivers fill out the FMLA form.”

She recommends to other caregivers living with arthritis to save time off for their own use. “Don’t just use time off for caregiving—take time off for yourself,” Fleenor says. “Caregiving is tough work, and we need time to recoup from the physical and emotional demands.”

Seeking Help for Long-Distance Caregivers

Whether or not you are new to long-distance caregiving, follow these tips to make the most of your caregiving role.

Collect information.

You’ll need to gather information about your loved one’s medical, legal, and financial status. This may include contact phone numbers and email addresses for doctors, lawyers, accountants, insurers, and bankers. If possible, ask your loved one for this information before an emergency arises. The Family Caregiver Alliance website (www.caregiver.org) provides a useful one-page document that summarizes the information and important paperwork you need, such as wills, power of attorney, and insurance policies.

Create your network.

Even if your loved one has close family members nearby, it’s also important to identify friends, neighbors, or members of religious and community groups who can serve as your eyes and ears on the ground. They can be helpful in emergencies, can provide informal updates on how Mom is eating, or report on the state of your parent’s house. Collect their phone numbers and email addresses to make it easier to stay in touch.

Identify local resources.

You may be surprised to learn how many community resources are available to assist long-distance caregivers. One of the first calls to make is to the State Units on Aging or Area Agencies on Aging, which help older Americans and their caregivers address all aspects of aging, including questions about Medicare, legal and financial matters, and nursing homes. To find the nearest agency to your loved one, visit the website of U.S. Administration on Aging, www.aoa.gov.

Develop a care plan.

Hold a family meeting in person or over the phone to discuss future plans. Depending on your loved one’s mental state, you may decide to include him or her in the meeting. Allow your loved one to voice his or her wishes and concerns. Determine who can provide assistance and be a primary or secondary caregiver, and learn about community resources. Arguments are likely to arise during family meetings, since not everyone may have the same idea about what’s best for Mom and Dad—if need be, invite a trusted family friend or social worker to mediate and help resolve outstanding issues.

Consider paid care providers.

When few, if any, family members are available for local caregiving, it may be worth identifying local providers for help. Social service agencies, for example, can recommend in-home aides. There are also visiting nurses and geriatric care managers who are trained to manage health needs; geriatric care managers also can help with non-medical issues such as financial and legal matters. Learn more by contacting these groups: Visiting Nurse Associations of America (http://vnaa.org) and National Association of Professional Geriatric Care Managers (www.caremanager.org).

Prepare for emergency travel.

Learn about different travel options in advance, before a crisis occurs. If you’re within driving distance, keep your car in good shape and check on the route and weather forecast before hitting the road. If you need to buy bus, train, or airline tickets, disclose it’s an emergency—you may be able to get a discount. If you rent a car, look for the best rates. Don’t pay for insurance if you already carry full coverage or your credit card company offers coverage.

Last Reviewed December 16, 2014

Paul Wynn has covered health-care trends for the past 20 years. He lives in Garrison, N.Y., and is a long-distance caregiver to his uncle in Connecticut.

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