So Far Away: Twenty Questions and Answers About Long-Distance Caregiving
What does a long-distance caregiver do?
How many other people are trying to help out from a distance, like me?
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.
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 mid-life 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.
Free Information Available from NIA
NIA has many free booklets and fact sheets that might be useful to caregivers.
All NIA resources can be ordered online at www.nia.nih.gov/health or by calling 1-800-222-2225 (toll-free) or 1-800-222-4225 for TTY (toll-free).
How will I know if help is needed? Uncle Simon sounds fine on the phone. How can I know that he really is?
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. Uncle Simon might not want to worry his nephew, Brad, who lives a few hours away, or he might not want to admit that he's often too tired to cook an entire meal. But how can Brad know this? If he calls at dinner and asks "what's cooking," Brad might get a sense that dinner is a bowl of cereal. If so, he might want to talk with his uncle and offer some help. With Simon's okay, Brad might contact people who see his uncle regularly—neighbors, friends, doctors, or local relatives, for example—and ask them to call Brad if they have concerns about Simon. Brad might also ask if he could check in with them periodically. When Brad spends a weekend with his uncle, he should look around for possible trouble areas—it's easier to disguise problems during a short phone call than during a longer visit.
Brad can make the most of his visit if he takes some time in advance to develop a list of possible problem areas he wants to check out while visiting his uncle. That's a good idea for anyone in this type of situation. 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? My sister lives pretty close to our parents and has gradually been doing more and more for them. I'm halfway across the country. I'd like to help them and my sister, but I don't feel comfortable just jumping in.
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? My brother lives closest to our grandmother, but he's uncomfortable coordinating her medical care.
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.
Know Your Strengths and Set Your Limits
If you decide to work as a family team, it makes sense to agree in advance how your efforts can complement one another. Ideally, each of you will be able to take on tasks best suited to your skills or interests. For example, who is available to help Mom get to the grocery store each week? Who can help Dad organize his move to an assisted living facility? After making these kinds of decisions, remember that over time responsibilities may need to be revised to reflect changes in the situation, your parent's needs, and each family member's abilities and limitations. Be realistic about how much you can do and what you are willing to do.
When thinking about your strengths, consider what you are particularly good at and how those skills might help in the current situation:
When reflecting on your limits, consider:
Alice lives in Phoenix, and her father, Zhuang, lives alone in a Los Angeles apartment. She visits him several times each year. When she began to notice that her dad was starting to have problems managing some things on his own, Alice called the Area Agency on Aging. The Agency staff helped her to set up daily meal delivery and a home health aide. A few months later, Zhuang fainted in church and was taken to a local hospital. He was there for a day before someone was able to track Alice down. The hospital discharge planner wanted Alice to come in person to discuss what her father needed—but Alice couldn't get away immediately. Her husband suggested hiring a geriatric care manager, someone based in LA who could keep tabs on her dad more efficiently. Now, a care manager visits Zhuang once a month and calls Alice with updates and recommendations.
What is a geriatric care manager, and how can I find one? A friend of mine thought that having a professional "on the scene" to help my dad would take some of the pressure off me.
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?
The National Association of Professional Geriatric Care Managers, www.caremanager.org, can help you find a care manager near your family member's community. You can also call or write the Eldercare Locator for recommendations. In some cases, support groups for diseases related to aging may be able to recommend geriatric care managers who have assisted other families.
Publication Date: June 2011
Page Last Updated: March 24, 2014