Beginner's Guide to Long-Distance Caregiving

Based on content from the NIH/National Institute on Aging publication, “So Far Away.”


If you live an hour or more away from a person who needs care, you can think of yourself as a long-distance caregiver.

This kind of care can take many forms — from helping with finances or money management to arranging for in-home care; from providing respite care for a primary caregiver to creating a plan in case of emergencies.

Many long-distance caregivers act as information coordinators, helping aging parents understand the confusing maze of new needs, including home health aides, insurance benefits and claims and durable medical equipment.

What is my role? 

Caregiving, no matter where the caregiver lives, is often long-lasting and ever-expanding. For the long-distance caregiver, what may start out as an occasional social phone call to share family news can eventually turn into regular phone calls about managing household bills, getting medical information, and arranging for grocery deliveries. What begins as a monthly trip to check on Mom may become a larger project to move her to a new home or nursing facility closer to where you live.

If you are a long-distance caregiver, you are definitely not alone. There may be as many as 7 million people in your same situation in the United States. In the past, caregivers have been primarily working women in midlife with other family responsibilities. That’s changing. More and more men are getting involved; in fact, surveys show that men now represent almost 40 percent of caregivers. Anyone, anywhere can be a long-distance caregiver. Gender, income, age, social status, employment — none of these prevent you from taking on at least some caregiving responsibilities and possibly feeling some of the satisfaction.

How will I know if help is needed?

Sometimes, your relative will ask for help. Or, the sudden start of a severe illness will make it clear that assistance is needed. But, when you live far away, some detective work might be in order to uncover possible signs that support or help is needed.

When you live far away, some detective work might be in order to uncover possible signs that support or help is needed.

A phone call is not always the best way to tell whether or not an older person needs help handling daily activities. Of course, it may not be possible to do everything in one trip—but make sure that any potentially dangerous situations are taken care of as soon as possible. If you can’t correct everything on your list, see if you can arrange for someone else to finish up.

In addition to safety issues and the overall condition of the house, try to determine the older person’s mood and general health status. Sometimes people confuse depression in older people with normal aging. A depressed older person might brighten up for a phone call or short visit, but it’s harder to hide serious mood problems during an extended visit.

What can I really do from far away?

Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver. Staying in contact with your parents by phone or email might also take some pressure off your sister. Long-distance caregivers can play a part in arranging for professional caregivers, hiring home health and nursing aides, or locating care in an assisted living facility or nursing home (also known as a skilled nursing facility). Some long-distance caregivers find they can be helpful by handling things online — for example, researching health problems or medicines, paying bills, or keeping family and friends updated. 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. There are sacrifices and adjustments for everyone. When you don’t live where the care is needed, it may be especially hard to feel that what you are doing is enough and that what you are doing is important. It often is.

How Can My Family Decide Who Does What?

This is a question that many families have to work out. You could start by setting up a family meeting and, if your grandmother is capable, include her in the discussion. This is best done when there is not an emergency. A calm conversation about what kind of care is needed in the present and might be called for in the future can avoid a lot of confusion. Ask your grandmother what she wants. Use her wishes as the basis for a plan. Decide who will be responsible for which tasks. Many families find the best first step is to name a primary caregiver, even if one is not needed immediately. That way the primary caregiver can step in if there is a crisis.

Think about your schedules and how to adapt them to give respite to a primary caregiver or to coordinate holiday and vacation times. One family found that it worked to have the long-distance caregiver come to town while the primary caregiver was on a family vacation. Many families report that offering appreciation, reassurance, and positive feedback to the primary caregiver is an important, but sometimes forgotten contribution.

What is a Geriatric Care Manager, and How Can I Find One?

Professional care managers are usually licensed nurses or social workers who specialize in geriatrics. Some families hire a geriatric care manager to evaluate and assess a parent’s needs and to coordinate care through community resources. The cost of an initial evaluation varies and may be expensive, but depending on your family circumstances, geriatric care managers might offer a useful service. They are a sort of “professional relative” to help you and your family to identify needs and how to meet them. These professionals can also help by leading family discussions about sensitive subjects. For example, Alice’s father might be more willing to take advice from someone outside the family.

When interviewing a geriatric care manager, you might want to ask:

• Are you a licensed geriatric care manager?
• Are you a member of the National Association of Professional Geriatric Care Managers?
• How long have you been providing care management services?
• Are you available for emergencies around the clock?
• Does your company also provide home care services?
• How will you communicate information to me?
• What are your fees? Will you provide information on fees in writing prior to starting services?
• Can you provide references?

More:
How to be an effective long-distance caregiver
Support for long-distance caregivers

By NIH/National Institute on Aging