Long-Distance Caregiving: Twenty Questions and Answers
- What is a long-distance caregiver?
- Free caregiver information from NIA
- How will I know if my aging relative or friend needs help?
- How can I really help from far away?
- How can my family decide about sharing responsibilities?
- Know your strengths and set your limits
- What is a geriatric care manager, and how can I find one?
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.
Anyone, anywhere can be a long-distance caregiver. Gender, income, age, social status, employment—none of these prevents you from taking on at least some caregiving responsibilities and possibly feeling some of the satisfaction.
Uncle Simon sounds fine on the phone, but I don’t know if he really is okay.
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 necessary 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 dinnertime 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 permission, 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 can 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 home, 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.
My sister lives 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.
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 each task. 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 away. Many families report that offering appreciation, reassurance, and positive feedback to the primary caregiver is an important, but sometimes forgotten, contribution.
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.
A friend of mine suggested 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.
A geriatric care manager is a sort of “professional relative” who can help you and your family to identify needs and find ways to meet your needs. These professionals can also help by leading family discussions about sensitive subjects.
When interviewing a geriatric care manager, you might want to ask:
- Are you a licensed geriatric care manager?
- 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?
There are organizations that can help you find a care manager near your family member’s community. You can also call or write to 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 2016
Page Last Updated: April 26, 2017