Although most family caregivers live close enough to those they care for to provide day-to-day help, some do not. Jean Coleman, MS, FNP, RN, formerly with the University of California-Davis Alzheimer's Disease Center in Martinez, was a long-distance caregiver for her mother in New Jersey for about six years. Initially, Coleman traveled cross-country several times a year. As her mother's condition worsened, the trips increased in frequency and length. She tried to schedule her mother's health care appointments and home maintenance needs such as furnace repair before each trip, hoping to squeeze it all into a tight time frame. "I was lucky to have a supportive work situation. But it was physically and emotionally draining to get on a plane after work, spend a few days with my mother, then get back on a plane and go straight to my job," Coleman says.
In the last year of the long-distance caregiving for her mother, Coleman's father-in-law, caregiver for his wife, who had Alzheimer's disease, developed rapidly progressive cancer. That year, Coleman made five trips to New Jersey for her mother and four trips to Albuquerque for her in-laws. She ran up huge bills for airfare and rental cars; she lost time at work and had no time for herself.
Living several time zones away, Coleman was often on the phone at 5:00 AM with her mother's local providers and helpers. She had to hunt for a physician who was willing to take her long-distance calls. She spoke frequently with her mother's in-home attendants and friends who checked on her. Even so, she says, "The uncertainty was very stressful. I couldn't see for myself how my mother was doing."
Caring long-distance for her in-laws posed additional challenges. Coleman's father-in-law didn't talk much about his own and his wife's health. His condition quickly deteriorated, and trips to see them were usually prompted by a crisis. Advance planning wasn't possible. In addition, Coleman didn't know her father-in-law's physicians and other providers, limiting her ability to communicate with them.
Coleman says that communicating with providers and helpers and coordinating services are essential for long-distance caregivers. "Because of my background as a geriatrics NP, I knew how to gather information and coordinate services. Other long-distance caregivers could find these tasks challenging without the aid of a care manager," she says.
OCCASIONAL LONG-DISTANCE CAREGIVING
A caregiver who sees a relative frequently may occasionally have to perform caregiving duties from a distance. Andrew Scharlach, PhD, associate dean and Kleiner Professor of Aging at the University of California-Berkeley School of Social Welfare, lives about an hour away from his mother and visits several times a week to do her shopping, handle her finances, and provide emotional support; employed aides provide hands-on care. If she has a crisis, he rushes over to help. But when he travels, he becomes a long-distance caregiver and has to handle emergencies by phone. "Sometimes I need to make several calls to determine what's happening and what help my mother needs until I can return," he says.
Scharlach feels his mother is more anxious and feels less safe when he is not nearby. Nevertheless, he hesitates to call her too frequently when he is out of town, because it brings attention to his absence.
TIPS FOR SUCCESSFUL LONG-DISTANCE CAREGIVING
Coleman and Scharlach provide some suggestions to help ease the burden of long-distance caregiving.
* Determine what can realistically be done from afar. This will help you create a stable role as a long-distance caregiver.
* Then figure out who will fill in the gaps in care.
* Be sure to have several people locally to act as your "eyes and ears," monitoring what's happening with the care recipient and informing you.
* Keep in touch with the care recipient's health care providers, home attendants, and other regular helpers.
* Plan for the future, because a stable situation can quickly become unstable. For example, make a list of people who can temporarily provide care if the regular aide is unable to work.