Distance Complicates Caregiving

Caregiving can be challenging when the person being cared for is living in the same house. It can be even more difficult when the caregiver and the person with Alzheimer's live hundreds of miles apart. In today's society, often a distant relative must assume the role of primary caregiver. Mary York's suspicion that something was "not quite right" with her mother was confirmed when she learned from a friend that her mom suffered from hallucinations and became lost in her own neighborhood. "When we'd talk on the phone she told me she felt fine and seemed to be in good spirits," recalls York. "But when I heard what was happening and saw for myself how confused she had become, I knew she couldn't be left alone." York consulted with her mother's physician and decided that it would not be a good idea to move her out of the town where she had spent most of her life. "I knew her staying in Kansas wouldn't be as convenient for me, but once we had the appropriate support services in place, I felt it was the best option for mom." York spent the next several years traveling back and forth over 800 miles - often monthly - personally coordinating her mother's care. "It was worth it," she says. Long distance caregivers of people with Alzheimer's disease face the same emotional and financial concerns as those who live close by. Mary Frenza, executive director of the Alzheimer's Association's South Central Michigan Chapter, believes they also carry an additional burden of not being able to see for themselves how dementia is affecting their loved ones. "Distance can cause feelings of guilt and anxiety for the caregivers," says Frenza. "That's why ongoing support and coordinated care are so important - not only for those affected, but also for their caregivers." York agrees. "When you're the primary caregiver, distance doesn't change the issues or responsibilities you face, it just makes them a bit more complicated." York says that with the right mix of services, ongoing coordination, and support from nearby friends, long distance caregiving can work.

Make a visit, see what's going on

"Too often, families wait for something catastrophic to happen before they start making appropriate arrangements for care," says Anat Louis, family connections program coordinator at the Alzheimer's Association's Los Angeles Chapter. "Planning ahead will help ensure comfort and safety, and reduce the number of 'crisis calls' long distance caregivers receive." Louis suggests caregivers spend an extended period of time with their loved ones to determine what services are needed. Caregivers should evaluate affected persons to determine how well they perform daily activities related to personal care (e.g., bathing, toileting, grooming), housekeeping, cooking and driving. They should also pay careful attention to decision-making abilities and evaluate current living environments. "Don't assume that a recently diagnosed person doesn't need some assistance," reminds Louis. "People with Alzheimer's need support throughout the course of their disease - from beginning to end."

Creating a circle of care

When caregivers live far away from family members with Alzheimer's, friends, neighbors, nurses, care managers and home health workers become a caregiver's eyes and ears. York relied heavily on a few close friends who "checked up on things" and lent a helping hand. "At first, support and assistance from friends in the area was enough," says York. "But eventually, mom required more care." York placed her mother in a local nursing home where many of her long-time friends also lived. "It's important to maintain ongoing communication with facility staff and friends who visit regularly." But York warns that even trusted friends and care providers don't always provide a complete picture of what's going on. "At one point, mom was hitting people, but no one told me about it," recalls York. "Everyone thought the news would upset me. What upset me most was that no one told me what was happening." During support group meetings, she urges other long distance caregivers to plan periodic visits, so they can see for themselves how things are going.

Securing appropriate care services

Locating service options in a community that you're not familiar with can be tough. Fortunately, there are a number of individuals and organizations that can assist. "We help long distance caregivers sort out important issues and link them with association representatives in their loved one's community," says Louis, who's currently working with staff in Philadelphia to identify care options for a California family. To locate the association chapter nearest you, call (800) 272-3900. Also, caregivers can contact the U.S. Administration on Aging's free Eldercare Locator Service at (800) 677-1116 for help in tracking down other local agencies across the country. A geriatric care manager can also help caregivers determine what assistance is needed for individuals with dementia. Most will also identify local options and oversee a person's daily care. These services can be costly, but according to Frenza, may be particularly useful for out-of-town caregivers. Contact the National Association of Geriatric Care Managers at (520) 881-8008 for a list of care managers in your loved one's area. Frenza suggests that all families, particularly those caring for someone in another state, do as much advance planning as possible. "At the earliest point possible, ideally while the person with Alzheimer's can still express his or her wishes, family members should discuss how legal, financial and medical matters will be handled in the future." Frenza advises. Social workers, clergy and an attorney can also help families with planning. "My lawyer was a tremendous resource and an important player on our care team," says York.

Support for caregivers crucial

Caregiving can be a stressful experience, especially from a distance. Even when caregivers are not physically providing support for relatives with Alzheimer's, they're still mentally coping with personal difficulties associated with the disease. Louis encourages long distance family members to attend support group meetings. "People are comforted to learn they're not alone," says Louis. York believes all caregivers share two common goals: quality care for the person affected and peace of mind for the caregiver. "When caregivers work toward this goal, I hope they recognize they're doing the best they can, no matter where they are."