Long-Distance Caregiving

by National Institute on Aging

Five years ago, Dave's mother moved from the old house in Philly to an apartment in Baltimore that was closer to his sister. Dave didn't give much thought to how the increased distance would affect their relationship. Until then, they'd only lived 30 minutes from each other. Dave had lunch with his mom about once a week; sometimes they'd go to a ballgame together. After the move, neither Dave nor his mom expected much to change - what was another hour or so of drive time? But over the years, the drive seemed to get longer and time together was harder and harder to arrange. Then his mom's health began to slide. When Dave's sister called to say Mom had fallen and broken her hip, Dave needed, and wanted, to help. Should he offer to hire a nurse? Should he take a week off work and help out himself? After all the years his mom had devoted to raising the family, what could Dave do from far away to help her?

The answer for Dave, and for so many families faced with similar situations, is simple: Lots! Long-distance caregivers can be helpful no matter how great the distance. So Far Away: Twenty Questions for Long-Distance Caregivers focuses on some of the issues unique to long-distance caregiving. Developed by the National Institute on Aging (NIA), part of the National Institutes of Health, this booklet is a gateway to ideas and resources that can help make long-distance caregiving more manageable and satisfying.

Long-distance caregiving can be figuring out what you can do to help Aunt Lilly sort through her medical bills or thinking about how to make the most of a weekend visit with Mom. It can include checking the references of an aide who's been hired to help your grandfather or trying to take the pressure off your sister who lives in the same town as her aging parents and her aging in-laws. So Far Away often refers to caregiving for aging parents but, in fact, this booklet offers tips you can use no matter who you are caring for, be it an older relative, family friend, or former neighbor.

What is long-distance caregiving? Am I the only one who's trying to help out from a distance?

Long-distance caregiving takes many forms - from helping manage the money to arranging for in-home care; from providing respite care for a primary caregiver to helping a parent move to a new home or facility. Many long-distance caregivers act as information coordinators, helping aging parents understand the confusing maze of home health aides, insurance benefits, and durable medical equipment.

Caregiving is often a long-term task. What may start out as an occasional social phone call to share family news can eventually turn into regular phone calls about managing health insurance claims, getting medical information, and arranging for respite services. What begins as a monthly trip to check on Mom may turn into a larger project to move her to a nursing facility close to your home.

If you are a long-distance caregiver, you are not alone. Approximately 7 million adults are long-distance caregivers, mostly caring for aging parents who live an hour or more away. Historically, caregivers have been primarily mid-life, working women who have other family responsibilities. That's changing. More and more men are becoming caregivers; in fact, men now represent over 40 percent of caregivers. Clearly, anyone, anywhere can be a long-distance caregiver. Gender, income, age, social status, employment - none of these prevent you from taking on caregiving responsibilities.

Caregiver Basics: What You Should Do (or Think About Doing)

1. Seek out help from people in the community: the next door neighbor, an old friend, the doctor. Call them. Tell them what is going on. Make sure they know how to reach you.

2. Take steps to identify options to help the primary caregiver. He or she may not need the help now, but having plans and arrangements in place can make things easier if there is a crisis.

3. Try to find a directory of senior resources and services by checking with a library or senior center for lists of resources. Get several copies - one for yourself and one for the primary caregiver. This helps everyone learn what's out there and perhaps to start "plugging into the networks." Don't forget to check for updates.

4. Pull together a list of prescriptions and over-the-counter medications. Get doses and schedules. This information is essential in a medical emergency. Update it regularly.

5. When you visit, go through the house looking for possible hazards (such as loose rugs, poor lighting, unsafe clutter) and safety concerns (such as grab bars needed in the bathroom). Stay for a weekend or week and help make needed improvements.

6. Find out if your parent has an advance directive stating his or her health care treatment preferences. If not, talk about setting one up. If so, make sure you have a copy and you know where a copy is kept. You might want to make sure the primary caregiver has a copy. The doctor should also have a copy for the medical record.

Adapted with author's permission from How to Care for Your Parents: A Practical Guide to Eldercare by Nora Jean Levin.

About the Author

www.nia.nih.gov
NIA, one of the 27 Institutes and Centers of NIH, leads a broad scientific effort to understand the nature of aging and to extend the healthy, active years of life. In 1974, Congress granted authority to form NIA to provide leadership in aging research, training, health information dissemination, and other programs relevant to aging and older people.