The Long-Distance Caregiver
National Institute on Aging
You might think that being far away gives you some immunity from feeling overwhelmed by what is happening to your parent—but long-distance caregivers report that this is not so. Although you may not feel as physically exhausted and drained as the primary, hands-on caregiver, you may still feel worried and anxious. Many long-distance caregivers describe feeling terribly guilty about not being there, about not being able to do enough or spend enough time with the parent. Remind yourself that you are doing the best you can, given the circumstances, and you can only do what you can do.
If you are like most long-distance caregivers, you already have many people who rely on you: Your spouse, children, perhaps even grandchildren, as well as friends, coworkers, and colleagues. Adding one more “to-do” to your list may seem impossible.
You may find some consolation or comfort in knowing that you are not alone. Many people find that support groups are a great resource and a way to learn caregiving tips and techniques that work—even from a distance. Others find the camaraderie and companionship helpful. Some enjoy meeting monthly or weekly, while others find what they need in online support groups. The Eldercare Locator may be able to help you find a local group.
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.
Long-Distance Caregiver Basics
What You Should Do (or Think About Doing)
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
How will I know if help is needed?
In some cases, the sudden start of a severe illness will make it clear that help is needed. In other cases, your relative may ask for help. When you live far away, you have to think carefully about possible signs that support or help is needed. You might want to use holiday trips home to take stock.
Some questions to answer during your visit include:
- Are the stairs manageable or is a ramp needed?
- Are there any tripping hazards at exterior entrances or inside the house (throw rugs, for instance)?
- If a walker or wheelchair is needed, can the house be modified?
- Is there food in the fridge? Are there staple foods in the cupboards?
- Are bills being paid? Is mail piling up?
- Is the house clean?
- If your parents are still driving, can you assess their road skills?
- How is their health? Are they taking several medications? If so, are they able to manage their medications?
- What about mood: Does either parent seem depressed or anxious?
What can I really do from far away? I don’t feel comfortable just jumping in.
Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. Long-distance caregivers can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some long-distance caregivers help a parent pay for care, while others step in to manage finances.
Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.
- NIA http://www.nia.nih.gov/health/publication has many free publications including the popular Age Pages—informative fact sheets for older people. There are over 40 titles in the series, many of which are available in Spanish.
- Click Here for the free resource: So Far Away: 20 Questions and Answers About Long-Distance Caregiving
- "Since You Care: Long-Distance Caregiving" from the MetLife Mature Market Research
- AARP: Obstacles for Long-Distance Caregiving
- Family Caregiver Alliance: Handbook for Long-Distance Caregivers
Care Mangaement & the Long-Distance Caregiver
As families are more and more spread out around the country, a Geriatric Care Manager can be a unifying piece in solving the eldercare puzzle. Care Managers, as the eyes and ears of the family, can provide a neutral and professional assessment of the changing needs of an aging loved one and set up appropriate services and care. They are able to regularly check in with aging loved ones and make minor changes in care before they become bigger problems later. Increasing safety, wellness, and quality of life is part of the successful outcomes Care Managers are providing families, wherever they may be.
Published on March 14, 2013.