Caring for a loved one with cancer is no easy feat; for many, caregiving is unfamiliar territory with no clear path. Providing that care from a distance can create additional challenges and concerns for the more than 7 million people in the United States who fulfill this role. Long-distance caregivers often feel the need to qualify their role; since they are generally not in a position to be providing direct care on a daily basis, they may not feel that they can be considered a caregiver. In turn, they may not know about supportive and practical resources available to them. This can leave them feeling more isolated, and can increase their distress.
Long-distance caregivers frequently report feelings of guilt, sadness, and disconnect related to their caregiver role. They often share feeling out of the loop, as it may take more time for them to gain access to information and updates about their loved one and their care, which can lead to anxiety and feelings of helplessness. In addition to the emotional impact of long distance caregiving, a host of practical and logistical challenges often arise. Traveling to be closer to the patient or taking time off to provide more direct care can be costly, creating financial strain.
All of these challenges illustrate that long-distance caregivers need support in navigating their role. Here are some ways health care professionals and other support resources can best help.
Validate the unique role of the long distance caregiver. Help them to explore what their role will look like, including specific responsibilities, as well as what they want to provide, such as practical and/or emotional support. Use a strengths-based approach to help draw out what they are good at; consider what skills come most easily or naturally for them. For example, perhaps a caregiver is particularly skilled at navigating complex insurance issues, or knows exactly what to say to help the patient feel hopeful at any given time. Paying attention to these unique characteristics and helping a caregiver to see them as strengths can help them strategize opportunities for providing support in a meaningful way.
Encourage open communication. Long-distance caregivers will benefit from talking with the patient about his or her wants and needs related to their care upfront. Clear communication is essential, as the caregiver may not be there to witness needs as they come up. This will allow caregivers to better gauge what kind of approach to adopt, rather than making assumptions. However, patients commonly leave out certain information as a way of protecting the long-distance caregiver. Therefore, long-distance caregivers may also want to be connected with people who see the patient more regularly, as these people can more adequately assess how their loved one is really doing.
Help long distance caregivers determine what they can provide for their loved one, even from far away. Oftentimes, long-distance caregivers focus on the challenges or limitations they have in providing care from a distance rather than on the things they can do for the patient. Long-distance caregivers can help the patient consider questions to ask their doctors, sort through resources and information, or coordinate insurance benefits. They can also provide emotional support by calling or e-mailing to check in, sending care packages, or providing a sense of normalcy by engaging the patient in conversations on topics other than cancer.
Flexibility is key. The patient’s needs will ebb and flow throughout the continuum of care, and thus the long-distance caregiver needs to practice flexibility as well. There may be times when the patient is feeling well and wants to maintain more independence, while at other times, may require a more hands-on approach. In some cases, distance can be protective. Reminding caregivers of the opportunity for self-care, and independence that can be achieved while being farther away from the patient can help them to reframe and feel more equipped for the caregiver role.
Enlist multiple avenues for support. Many long-distance caregivers report that having two different networks of support—a home team and an away team—is most helpful. This ensures that the caregiver has a strong support system both when they are with the patient and when they are not. Long-distance caregiving takes a lot of time and energy, so caregivers need support that is flexible, too. An ever-available online support group may be more helpful than a more structured weekly commitment. CancerCare and other similar organizations offer caregiver-specific online support groups that are available 24 hours a day, 7 days a week.
Prescribe a high dose of self-care. Long distance caregivers are often balancing responsibilities of their own including family and career, as well as the unique challenge of caregiving from afar, and often overlook their own needs. Self-care is necessary in helping them cope with all of these different and complex parts of their lives. Long-distance caregivers may see any free moment as an opportunity to visit with the patient or get into caregiver mode. However, they may in fact benefit more from first checking in with themselves about how to spend moments of respite.
Prepare for visits. Encourage the long-distance caregiver to consider what physical changes might have occurred in the patient since their last visit (ie, hair loss, weight changes, mobility) to help create appropriate expectations and anticipate triggers for sadness and worry.
Ultimately, in order to best support long-distance caregivers, it is important to acknowledge them as an integral part of a patient’s care. Listening to the needs of this population and helping them to gain access to valuable resources and information goes a long way in improving outcomes for both the caregiver and patient.