How to Manage Long-distance Caregiving
“Long-distance caregivers report higher emotional distress than those who reside with the care recipient or live closer to them.” - Ranak Trivedi, PhD
The topic of long-distance caregiving is dear to my heart. I have supported my mother’s ongoing journey with cancer for 17+ years. The closest I have lived was 130 miles and the farthest, 2100 miles. My caregiving role has been defined by the emotional support I provide through daily phone calls, the occasional phone call with the oncologist especially during changes of treatment regimens, and visits 2-3 times a year.
My story is hardly unique. It is estimated that 10-14 million caregivers will be long-distance caregivers by 2020. Of these, 3-6 million live 450 or more miles away from their loved one with an illness. While it might seem that long-distance caregivers have an easier time than local caregivers, studies show otherwise. Long-distance caregivers shoulder more caregiving costs, likely because of travel costs and possible financial support in lieu of providing in-person assistance. Long-distance caregivers report higher emotional distress than those who reside with the care recipient or live closer to them.
The reasons behind this vary. Being at a distance might make caregivers feel helpless and guilty that they are not contributing to the patients, or giving the local caregivers a break. Long-distance caregivers may experience more uncertainty since they lack opportunities to talk with the medical care team at appointments. This means that long-distance caregivers receive diagnostic, prognostic and treatment information second-hand, without any opportunities of clarification directly with the medical care team. I definitely have felt this sense when information was conveyed to me by my parents after visits. Alternatively, because caregivers at a distance mainly contribute through emotional support, they may take on the emotional stress of both the patient and local caregivers. In stressful times such as managing cancers, the relationship between patients, local caregivers, and long-distance caregivers may become frayed as the long-distance caregivers are viewed as not doing enough to help. When long-distance caregivers offer support or suggestions, local caregivers may tell them that they are interfering or speaking without fully knowing the situation. This can add to the guilt for long-distance caregivers.
As a long-distance caregiver, it is natural to wonder what you could do to help, and even feel your contributions are insignificant. It is important to realize that cancer patients and local caregivers benefit from an extra phone call, video chat, text message, or card. In situations where many people want to help the patient, the long-distance caregiver can co-ordinate meal drop offs, picking up children from school, respite, or help with household chores. There are many apps and websites through which you can set up a shared calendar to see what is needed and when. You can find a list of the some of the most popular ones from 2018 here: https://www.caring.com/articles/best-caregiving-apps/. In some families, the long-distance caregiver is the one who keeps up with the complex care and treatment information. Here, the long-distance caregiver may be the main or even only caregiver. These—or any--caregivers can attend appointments virtually on speakerphone or video chat so that they can get firsthand information and ask questions. Patients can also record the appointments (on smart phones or a small tape recorder) and then share the recording with the long-distance caregiver.
As the cancer gets managed or even remits, the role of long-distance caregivers becomes even more nebulous. Know that staying in touch and lending a supportive ear are valuable contributions in their own right. Notice when you have guilty thoughts and work on challenging them. For instance, you may think, “What can one phone call help when there’s so much to do?” Instead, try, “When people are down and stressed, every little bit helps. A phone call is something I can do and I know that mom loves hearing from me and about my day.” If your loved ones say hurtful things, be forgiving. Recognize that they are under great pressure and may not be able to appreciate your contributions. As with all caregiving, self-care is crucial, whether it is spending time with other loved ones, being in nature, or pursuing your hobbies, self-care tasks can nourish you so that you can be there for your needs and those of others.
Long-distance caregiving IS caregiving.