Strategies for long-distance caregiving

A few months ago, my biggest sources of anxiety were politics, my finances, and whether I’d make my next work deadline. Then one afternoon my mother called to tell me she had leukemia.

Suddenly, my fear went beyond the kind that’s inevitable when you have aging parents, to a more urgent worry about her current state of health and well-being.

To complicate matters, she lives in Cleveland and I live in New York, so my next thought was how we were going to navigate the myriad medical decisions that come along with cancer treatment.

My first instinct was to book flights and travel to Ohio immediately, which I did. But I quickly realized that jumping onto a plane every time I got anxious or her health status changed was going to be unsustainable and prohibitively expensive.

Knowing that my father is with her in Cleveland and my sister regularly travels in from Cincinnati is a certainly a comfort, but ultimately, having a sick mother in another state is unsettling.

After meeting her doctors, nurses and physicians assistants at the hospital and getting permission to call them for updates, I was able to stay connected with her treatment and progress. Sometimes, my mother would FaceTime me when certain doctors were in her hospital room so I could virtually be there to hear what they had to say and ask any questions.

During my second trip to Cleveland, a researcher approached me at the beginning of one of my mother’s oncology appointments, and asked if I’d be interested in being part of a study on distance caregiving. It is a federally-funded clinical trial by researchers at Case Western Reserve University using videoconferencing to allow family members living at a distance to “attend” oncology appointments with their loved ones. I couldn’t sign the consent form fast enough.

Sara L. Douglas, a professor of nursing and assistant dean for research at the Case Western Reserve University Frances Payne Bolton School of Nursing is the primary investigator of the study, which is called “Closer: A Videoconference Intervention for Distance Caregivers.”

The research, funded by the National Institute of Nursing Research, aims to discern the extent to which using technologies can help distance caregivers connect with their loved one in meaningful ways.

Although there’s no formal definition of a distance caregiver, Douglas says it generally refers to someone who lives 100 miles or more away from the person for whom they are caring. Not surprisingly, given our increasingly mobile society and more people moving away from their hometowns, the number of distance caregivers is growing, with an estimated 5 to 7 million in the United States alone.

According to Douglas, most of the existing research on distance caregivers has been descriptive, and has identified the group as a distinct population with unique needs.

About half of distance caregivers put in about one day a week of time, between scheduling appointments, paying bills, making phone calls and other related duties, she notes. The majority of distance caregivers are employed, Douglas said, with up to half having to miss days of work or rearrange their schedules to be able to care for someone, and up to one-third either having to reduce their work schedules significantly or stop working in order to manage all the aspects of caregiving.

“Distance caregivers, compared to local caregivers, have higher stress, feel less support, have higher anxiety and more burden,” Douglas said. “It’s a group that hasn’t been well recognized. We haven’t really done a really good job up until this point in terms of trying to provide services that in some way make being a distance caregiver less stressful and more meaningful.”

But even for distance caregivers who aren’t in the study, there are strategies that can help you stay on top of things from afar.

DON’T NEGLECT YOUR OWN WELL-BEING

“Caregivers may be so focused on the well-being of their loved one that they may not realize or appreciate the amount of stress they are under and what effect that it has on their lives,” says Adam L. Fried, a clinical psychologist and professor of psychology at Midwestern University in Glendale, Ariz.

Although it can be difficult, and even guilt-inducing, to make time for yourself as a distance caregiver, Fried finds it helpful to reframe the importance of caring for oneself, in part, as a prerequisite to providing sustained, effective care for others and preventing burnout.

CHECK IN REGULARLY

When you’re caring for someone from a distance, you may find yourself on the phone far more than usual, between checking in with health care providers, scheduling appointments and keeping finances in order. But it’s also important to regularly check in with the person who is ill; don’t wait for them to call you when there is a problem, says Karen Whitehead, a social worker who specializes in working with distance caregivers.

“Checking in regularly, at a time when it is convenient for you, helps you stay in control of your schedule and time and provides the opportunity to prevent a crisis,” she explains.

DIVIDE AND CONQUER

If, like me, you are fortunate enough to have a sibling or other close family members, Whitehead suggests dividing the caregiving tasks. This could mean that one person focuses on finances while another handles the medical aspects.

STAY CONNECTED

It’s hard enough keeping track of our own schedules, let alone managing that of someone who requires regular medical attention and lives in another location. At the very least, this involves two people and two different schedules, but if others — like partners, siblings or close friends — also play roles in the caregiving, coordinating schedules is even more essential. This ensures that everyone attends the appointments they’re supposed to and bills are paid on time.

Shared Google calendars are one way to make sure everyone is on the same page. There are also a number of apps that help you coordinate with your loved one and other caregivers, like CareZone, which helps users keep track of medications, medical appointments and insurance information, and CaringBridge, which facilitates schedules and communication between multiple caregivers.

ASK FOR HELP WHEN YOU NEED IT

Part of self-care is knowing when you’ve taken on too much and should ask for help, Fried says. This can involve everything from logistical support, like asking a neighbor to check in on your loved one, to social support for yourself, he adds.

Similarly, Whitehead suggests utilizing some of the many professionals in the community who can help support and guide you. “Having a safe space to share your feelings of resentment, guilt or exhaustion and learn coping strategies that work for your situation can make all the difference,” she notes. There are also organizations, like Caring from a Distance, that provide support and resources.

The app Lotsa Helping Hands helps users create a support community, organizing everything from rides to appointments, to meals and errands, to letting people know the best time to call on the phone.

BE REALISTIC ABOUT YOUR OTHER RESPONSIBILITIES

Part of asking for help may also involve speaking with your employer about needing time off from work.

If at all possible, be honest with your boss about why you need to adjust your schedule and realistic about the amount of time you make need to take off. This is a situation where the ability to work remotely would be helpful, but even then, it can be difficult to keep up with conference calls and emails alongside doctors’ appointments.

Make sure you discuss clear expectations of any arrangement with your boss to ensure that you are both on the same page and nothing falls through the cracks.

In addition to work, distance caregivers also often have families of their own, placing them in the “sandwich generation,” with obligations to both their parents and children. For someone with responsibility for multiple family members in different locations, logistics can be difficult, especially when emergencies require schedules to be readjusted quickly.

KEEP IT IN PERSPECTIVE

According to Whitehead, caregiving isn’t all about feeling overwhelmed and living with increased anxiety.

“When it is approached as a choice, rather than a duty or obligation, caring for a loved one long distance can increase positive emotions and offset stress,” she explains. “Caregivers can feel grateful and enjoy the increased connection with their loved one. This attitude can often offset the negative or stressful side of caregiving.”