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.