Long-Distance Caregiving 

Twenty Questions and Answers 
 

 

Table of Contents
 

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1
 

Getting Started . . . . . . . . . . . . . . . . . . . . . . . . . . 4
 

Things You Can Do . . . . . . . . . . . . . . . . . . . . . 12
 

Finding More Help . . . . . . . . . . . . . . . . . . . . . 23
 

Support for Caregivers . . . . . . . . . . . . . . . . . . 36
 

Points to Remember . . . . . . . . . . . . . . . . . . . . 38
 

Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42
 
Introduction 1 

Introduction
 

Five years ago, Dave’s mother 

moved from their old house in Philadelphia to an 

apartment that was closer to his sister in Baltimore. 

Before the move, the 30-minute drive to visit his 

mom wasn’t a big deal, and Dave had lunch with her 

weekly. Sometimes they’d go to a ball game together. 

After the move, neither Dave nor his mom expected 

much to change—what was another hour or so of 

drive time? But as time passed, the trip seemed to get 

longer, time together was harder to arrange, and as 

a result, they saw less of each other. Then his mom’s 

health began to slide. When Dave’s sister called to 
say their 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 

caring for the family, what could Dave do from far 

away to help her—and his sister? 

The answer for Dave, and for so many families faced with similar 

situations, is encouraging. Long-distance caregivers can be helpful 

no matter how far away they live. Long-Distance Caregiving: Twenty 

Questions and Answers focuses on some issues that are unique to 

long-distance caregiving. You will also find other information that is 

important to know whether you live next door or across the country. 

Developed by the National Institute on Aging (NIA), part of the 

National Institutes of Health, Long-Distance Caregiving: Twenty 

Questions and Answers is a gateway to ideas and resources that can 

help make long-distance caregiving more manageable and satisfying. 

But what is long-distance caregiving? It can be helping 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 both your 

aging parents and her aging in-laws. 

2 Long-Distance Caregiving
Introduction

This resource often refers to caregiving for aging parents, but in fact, 

you can use the tips no matter who you are caring for—an older 

relative, family friend, or neighbor. The information is organized in a 

question-and-answer format. Each of these commonly asked questions 

has a brief answer. You can read them separately or together for a 

more complete picture of all the facets of caregiving from afar. 

The most important thing to remember is that these are just ideas, 

suggestions, and observations from people with knowledge or 

experience in long-distance caregiving. Your situation might call for 

adaptations or even completely different solutions. 

Keep in mind that healthcare providers and health plans are by law 

not required to share information with a person’s family or friends 

unless they are the patient’s personal representatives. For more 

information, visit www.hhs.gov/hipaa/for-individuals/familymembers-friends. 

The questions answered in this resource probably aren’t the only 

ones you have about long-distance caregiving. If you would like more 

information, see the Resources section, which provides a sampling 

of other organizations that may be able to help you and your family 

answer your questions about long-distance caregiving. 

3
 
Long-Distance Caregiving

GETTING STARTED
 

What is a long-distance caregiver? 

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. 

4 
Getting Started

FREE CAREGIVER INFORMATION FROM NIA 

NIA has many free resources for you. Some are available 

in Spanish. Here are just a few titles you might find of 

particular interest: 

• 	Alzheimer’s Caregiving Tips 

• 	Caregivers and Exercise—Take Time for Yourself 

• 	Caring for a Person with Alzheimer’s Disease: Your 

Easy-to-Use Guide from the National Institute on Aging 

• 	Crime and Older People AgePage 

• 	End of Life: Helping With Comfort and Care 

• 	Getting Your Affairs in Order AgePage 

• 	Healthy Eating After 50 AgePage 

• 	Home Safety for People with Alzheimer’s Disease 

• 	Nursing Homes: Making the Right Choice AgePage 

• 	Older Drivers AgePage 

• 	Online Health Information: Can You Trust It? AgePage 

• 	Talking With Your Doctor: A Guide for Older People 

You can read these and other NIA resources online at 

www.nia.nih.gov/health. Print copies of some of the resources 

may be ordered for free on the NIA website or by calling 

1-800-222-2225 (toll-free) or 1-800-222-4225 for TTY (toll-free). 

5 
Long-Distance Caregiving

 

 

How will I know if my aging relative or friend 

needs help? 

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 

When you live far away, 

some detective work 

might be necessary to 

uncover possible signs 

that support or help 

is needed. 

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 

6 
Getting Started

 

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. 

How can I really help from far away? 

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. 

7 
 

 

How can my family decide about sharing 

responsibilities? 

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. 

8 Long-Distance Caregiving
 

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: 

• 	Are you good at finding information, keeping people up to date 

on changing conditions, and offering cheer, whether on the 

phone or with a computer? 

• 	Are you good at supervising and leading others? 

• 	Are you comfortable speaking with medical staff and 

interpreting what they say to others? 

• 	Is your strongest suit doing the numbers—paying bills, keeping 

track of bank statements, and reviewing insurance policies and 

reimbursement reports? 

• 	Are you the one in the family who can fix anything, while no one 

else knows the difference between pliers and a wrench? 

When reflecting on your limits, consider: 

• 	How often, both mentally and financially, can you afford to travel? 

• 	Are you emotionally prepared to take on what may feel like a 

reversal of roles between you and your parent—taking care of 

your parent instead of your parent taking care of you? Can you 

continue to respect your parent’s independence? 

• 	Can you be both calm and assertive when communicating from 

a distance? 

• 	How will your decision to take on caregiving responsibilities 

affect your work and home life? 

Getting Started 9 
10 So Far Away • Getting Started

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 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. 

Getting Started 11 
Long-Distance Caregiving

 

 

THINGS YOU CAN DO 

Could it help for me to organize Mom’s paperwork? 

My friends who have been caregivers say that a lot of what they 

did was to organize paperwork. I’m thinking of taking on that 

task to help my mother and sisters. 

Organizing paperwork is one way that a long-distance caregiver can be a 

big help. An important part of effective caregiving depends on keeping 

a great deal of information in order and up to date. Often, long-distance 

caregivers will need access to a parent’s personal, health, financial, and 

legal records. If you have ever tried to gather and organize your own 

personal information, you know what a chore it can be. 

Getting all this material together is a lot of work at first, and from far 

away it can seem even more challenging. But once you have gathered 

everything together, many other caregiving tasks will be easier. 

Maintaining current information about your parent’s health and 

medical care, as well as finances, home ownership, and other legal 

issues, lets you get a handle on what is going on and allows you to 

respond more quickly if there is a crisis. 

If you do not see your parent often, one visit may not be enough time 

for you to get all the paperwork organized. Instead, try to focus on 

gathering the essentials first; you can fill in the blanks as you go along. 

You might begin by talking to your parent and his or her primary 

caregiver about the kinds of records that need to be pulled together. 

If a primary caregiver is already on the scene, chances are that some 

of the information has already been assembled. Talk about any missing 

information or documentation and how you might help to organize the 

records. It is also a good idea to make sure that all financial matters, 

including wills and life insurance policies, are in order. It will also help if 

someone has a durable power of attorney (the legal document naming 

one person to handle financial and property issues for another). 

12 
Your parents may be reluctant to share personal information with 

you. Explain that you are not trying to invade their privacy or take 

over their personal lives—you are only trying to assemble what will 

be needed in the event of an emergency. Assure them that you will 

respect their privacy, and then keep your promise. 

If your parents are still uncomfortable, ask if they would be willing 

to work with an attorney (some lawyers specialize in elder affairs) or 

perhaps with another trusted family member or friend. Keep in mind 

that healthcare providers and health plans are by law not required to 

share information with a person’s family or friends unless they are 

the patient’s personal representatives. For more information, visit 

www.hhs.gov/hipaa/for-individuals/family-members-friends. 

WHAT INFORMATION SHOULD A FAMILY CAREGIVER ORGANIZE? 

The answer to this question is different for every family. 

You might want to help organize the following information 

and update it as needed. This list is just a starting point. 

• 	Full legal name and residence 

• 	Birth date and place, birth certificate 

• 	Social Security and Medicare numbers 

• 	Employer(s) and dates of employment 

• 	Education and military records 

• 	Sources of income and assets; investment income 

(stocks, bonds, property) 

• 	Insurance policies, bank accounts, deeds, investments, 

and other valuables 

• 	Most recent income tax return 

• 	Money owed, to whom, and when payments are due 

• 	Credit card account names and numbers 

• 	Safe deposit box key and information 

• 	Will and beneficiary information 

• 	Durable power of attorney 

• 	Living will and/or durable power of attorney for health care 

• 	Where cash or other valuables might be kept in the home 

Things You Can Do 13 
Long-Distance Caregiving

 

 

Should I talk with my aging parents about the 

kind of care they’d like to have in the future? 

My parents are in their 70s and haven’t said anything about 

their future healthcare preferences. Since they are still relatively 

healthy, do we need to talk about that now? 

For most of us, it is hard to talk with others about the kind of medical 

care they’d want if seriously ill and unable to make decisions on their 

own. But, when the conversation is with someone close to you, it 

can be many times harder for everyone. Yet, it’s important to be 

prepared, especially in case of unexpected illness. 

As a long-distance caregiver, you might want to wait until you are 

face to face with your parents, rather than try to handle this sensitive 

subject on the phone. During a visit, you could try saying that you 

have just made your living will, or you could tell them you’ve chosen 

someone to make your healthcare decisions. A friend or neighbor’s 

illness might also jumpstart a conversation about healthcare preferences. 

For some families, a conversation about, for example, who would 

like Grandma’s china could be a gentle way to start the discussion. 

Would you rather begin on a less personal note? Discussing a topical 

TV show, newspaper article, or movie might be the way to start. 

When talking about medical care, assure your parents that as 

long as they are alert, they will be the ones to make decisions. But 

documenting their healthcare wishes is important. Healthcare 

providers can’t know your parents’ preferences unless they are 

included in their medical records. 

Having these wishes on the record allows your parents to receive the 

care they want. It may also help avoid some of the conflicts that can 

occur when family members disagree over treatment decisions. 

14 
Things You Can Do

Advance care planning is often done through an advance directive, 

which includes verbal and written instructions about future medical 

care. There are two types of advance directives—a living will and a 

durable power of attorney for health care. 

A living will states in writing what kinds of life-sustaining medical 

treatments, if any, a person wants if he or she is unable to speak or 

respond and at risk of dying. 

A durable power of attorney for health care names someone to make 

medical decisions in that same type of situation. This person, called a 

healthcare proxy, can decide on care based on what he or she knows 

the patient would want. It is vital for your parents to discuss their 

wishes with the healthcare proxy. 

Naming a healthcare proxy is an extremely important decision. 

Living nearby is not a requirement to be a healthcare proxy, also 

called “healthcare agent” or “surrogate.” Even a long-distance 

caregiver can be one. Most people ask a close friend or family 

member to be their healthcare proxy. Some people turn to a trusted 

member of the clergy or a lawyer. The person chosen should be able 

to understand the treatment choices, know your parents’ values, 

and support their decisions. 

Advance directives are not set in 

stone. You might want to let your 

parents know that they can revise 

and update their instructions as often 

as they wish. Patients and caregivers 

should discuss these decisions—and 

The person chosen as the 

healthcare proxy should 

be able to understand the 

treatment choices, know 

your parents’ values, and 

any changes in them—and keep the support their decisions. 

healthcare team informed. Consider 

giving copies of advance directives to all caregivers and to your brothers 

and sisters. Keep a copy at home as well. Because state laws vary, check 

with your Area Agency on Aging, your state department of aging, or a 

lawyer for more information about advance directives. 

15 
Long-Distance Caregiving

How can I find information about financial 

assistance for my parents who live across the 

country from me? 

My parents saved money for retirement, but the cost of their 

medical care is really high, and they are worried. 

You and your parents are not alone in worrying about healthcare costs. 

These expenses can use up a significant part of monthly income, even 

for families who thought they had saved enough. Your parents may 

be eligible for some healthcare benefits. As a long-distance caregiver, 

one way you can be helpful is by learning more about possible sources 

of financial help and then assisting your parents in applying for aid as 

appropriate. The internet can be a helpful tool in this search. 

There are several federal and state programs that provide help with 

healthcare-related costs. 

The Centers for Medicare & Medicaid Services (CMS), the federal 

agency responsible for Medicare, offers several programs. Over 

time, the benefits and eligibility requirements of these programs can 

change and they differ from state to state, so it is best to check with 

CMS, www.cms.gov, or the individual programs directly for the most 

recent information. 

People on fixed incomes who have limited resources may qualify for 

Medicaid, www.medicaid.gov. This program covers the costs of medical 

care for people of all ages who have limited income and meet other 

eligibility requirements. 

Under Medicare, some states have PACE, Program of All-Inclusive 

Care for the Elderly, www.pace4you.org. This program provides care and 

services to people who otherwise would need care in a nursing home. 

16 
SHIP, the State Health Insurance Assistance Program, 

www.medicare.gov/contacts, offers counseling and assistance to 

people and their families on Medicare, Medicaid, and Medicare 

supplemental insurance (Medigap) matters. 

If your parent is eligible for veterans benefits, remember to check with 

the Department of Veterans Affairs (VA), www.va.gov. Or, get in touch 

with the VA medical center nearest you. 

For more information about federal, state, and local government 

benefits, go to www.benefits.gov. If you don’t have a computer, call 

1-800-FED-INFO (1-800-333-4636). 

The National Council on Aging website, www.benefitscheckup.org, 

is another good place to start. By providing some general information 

about your parent, you can see a list of possible benefits you might 

want to explore. You don’t have to give a name, address, or Social 

Security number in order to use this service. 

If your family member’s prescription medicines cost too much, ask 

the doctor if there is a less expensive medication or a generic choice. 

Learn more about Medicare insurance for prescription drugs at 

www.medicare.gov/part-d, or call Medicare or your state SHIP. 

Also, the Partnership for Prescription Assistance, www.pparx.org, 

can provide a list of patient assistance programs supported by 

pharmaceutical companies. 

Things You Can Do 17 
Long-Distance Caregiving

 

How can my brother and I ensure our aging 

mother’s safety at home? 

This year, my wife and I decided to spend our vacation with my 

mom at her house. My brother and his partner will also be there. 

We’d like to see how we can make things safer for Mom, who is 

a little frail. 

You can’t anticipate every problem, but go through the house room 

by room and check. Some things will need to be taken care of right 

away. Pay careful attention to your mom—especially her safety and 

overall health, and how well she manages in her home. For example: 

• 	If your mom is still driving, can you assess her road skills? 

• 	How is your mom’s health? Is she taking several medicines? If so, 

could the pills be better organized? 

• 	What about her mood? Does your mom seem depressed or anxious? 

If you feel that your mother is unsafe alone because of her health, 

make note of which behaviors or activities have become most 

dangerous and discuss these with 

her primary caregiver, if there is 

one, and her doctor. This is one way 

a long-distance caregiver can be

helpful. Remember, you will need 

your mother’s permission to discuss

her health with the doctor. 

Discuss your concerns 

and offer to help adapt 

the environment to meet 

your parent’s changing 

safety needs. 

You can provide a fresh look when evaluating the situation. Behavior 

that is unsafe or unhealthy may have become familiar to the 

primary caregiver. Discuss your concerns and offer to help adapt 

the environment to meet your parent’s changing safety needs. 

There are a variety of things you can do that will make your mom’s 

surroundings safer, more accessible, and more comfortable. First, quickly 

18 
Things You Can Do

correct any real dangers. Once the urgent issues are addressed, you 

and your brother can start working on other ways to make sure your 

mom will be out of harm’s way. Use these home safety suggestions 

as a starting point: 

• 	Are the stairs manageable, or is a ramp needed? 

• 	Are there any tripping hazards at exterior entrances or inside the 

house (throw rugs, for example)? 

• 	Are any repairs needed? 

• 	Is the house well lit, inside and out? Do any bulbs need to be replaced? 

• 	Is there at least one stairway handrail that extends beyond the first 

and last steps on each flight of stairs? 

• 	Is there carpeting or safety grip strips on stairs? 

• 	Is there clutter, which can cause disorientation and confusion and 

increase the risk of falling? 

• 	Are all walk areas free of furniture and extension and electrical cords? 

• 	If a walker or wheelchair is needed, can the house be modified— 

perhaps put in a ramp to the front door? 

• 	Is there food in the fridge? Is any of it spoiled? Are there staple 

foods (such as cereal, sugar, canned soup) in the cabinets? 

• 	Are bills being paid? Is mail piling up? 

It is sometimes easier to change a place than to change a person. For 

someone like Rhea, who is helping her mom make the house safer 

for her dad to live comfortably in spite of his memory problems, 

some steps include: 

• 	Talking with her mom about ways to remember to lock all doors 

and windows to prevent her dad from wandering. 

• 	Making sure all potentially harmful items, such as medications, 

weapons, machinery, or electrical cords are put away in a safe, 

preferably locked place when they’re not in use. 

• 	Using child-resistant caps on medicine bottles, childproof latches 

on cabinets, and childproof plugs in unused outlets. 

19 
Long-Distance Caregiving

How can I keep up with my mom’s medical care? 

I don’t know where to start. 

Healthcare experts recommend that you start by learning as much 

as you can about your parent’s illness, its likely course, and current 

treatments. This information will be essential as you help your parent 

and the primary caregiver cope with day-to-day concerns, make 

decisions, and plan for the future. You can do this by discussing your 

mom’s diagnosis with your own healthcare provider or gathering 

reliable health information. 

Contacting a government agency, like the National Institutes of Health 

(NIH), or visiting its MedlinePlus website, www.medlineplus.gov, 

is a good way to find information you can trust. 

When you visit your parent, 

consider going along on a doctor’s 

appointment—first check that your 

parent does not mind having you 

there. You must have your parent’s 

permission to have any conversation 

When you visit your 

parent, consider going 

along on a doctor’s 

appointment. 

with his or her doctor or to discuss healthcare bills with Medicare 

or other health insurance. Ask your parent to complete the required 

privacy release form so the doctor can discuss his/her medical care 

with you. Be sure the release is up to date and that there’s a copy in 

your parent’s medical records, in addition to keeping a backup copy 

for your files. 

Some long-distance caregivers say that making a separate doctor’s 

appointment lets them seek more detailed information and answers to 

questions. You will need your parent’s written permission. You might 

have to pay for these appointments yourself. Or, see if the doctor will 

agree to provide email or telephone updates to you or other family 

members who live out of town. 

20 
 

 

Evaluating Health


Information Online
 

Many people search online to learn more about medical 

concerns. But not all health information online is of equal 

quality. The following questions may help you decide if the 

source you find on the internet is reliable: 

• 	Who is responsible for the content? Part of the web 

address may tell you—for example, .gov is a government 

agency, .edu is an educational institution, .org may be a 

nonprofit organization, and .com may be a commercial 

website. Also look for the website’s “About Us” page. 

• 	Can you identify the author? If so, what are his/her 

credentials? Will he or she profit from something 

recommended on the website? 

• 	Who reviews the information? Does the website have 

editors? 

• 	Is the purpose and goal of the sponsoring organization 

clearly stated? Is it selling something? 

• Is there a way to contact the sponsor for more information? 

• 	Is the website supported by public funds or donations? 

• 	Do the contents of the articles encourage you to buy 

specific products as part of providing general health 

information? 

• 	How new is the information? Is the information based on 

strong scientific evidence described in the article, or does 

it express personal opinions? 

• Does the website ask for personal information about 

yourself? Does the website clearly state its privacy policy? 

Things You Can Do 21 
Long-Distance Caregiving

How can we make the most of everyone’s time 

during my dad’s medical appointment? 

I’m visiting my dad for a week, and he asked me to come to his 

medical appointment. I want to make the most of this visit. 

If you go with your parent to see the doctor, here are a few tips that 

will help you be an ally and an advocate: 

• 	Bring a list of questions, starting with what is most important 

to you and your parent, and take notes on what the doctor 

recommends. Both the questions and the notes you write down 

can be helpful later, either to give information to the primary 

caregiver or to remind your parent what the doctor said. 

• 	Before the appointment, ask your parent, the primary caregiver, 

and your siblings if they have any questions or concerns they 

would like you to bring up. 

• 	Bring a list of ALL medicines and dietary supplements your parent 

is taking, both prescription and over-the-counter, and include the 

dosage and schedule. If your parent sees several different doctors, 

one may not necessarily know what another has prescribed. 

• 	When the doctor asks a question, let your parent answer unless 

you have been asked to do so. 

• 	It’s easy to get into a two-way conversation between the doctor 

and yourself—try not to do this. Always include both your parent 

and the doctor when you talk. 

• 	Respect your parent’s privacy, and leave the room when necessary. 

• 	Talk to the doctor about how you can keep up to date on your 

parent’s health since you live out of town. 

• 	Ask the doctor to recommend helpful community resources. 

• 	Larger medical practices, hospitals, and nursing homes may have 

a social worker on staff. The social worker may have valuable 

suggestions about community resources and other information. 

22 
Finding More Help

If you are worried that your parent might be depressed, you might 

want to discuss this with the doctor before the appointment. 

Depression is not a normal part of aging. Emotions like sadness, 

grief, and temporary “blue” moods are normal, but continuing 

depression that interferes with daily living is not okay. 

Even some health professionals seem to think depression is a normal 

response to the illnesses and other problems that can happen as we grow 

older. Make sure the doctor is taking action in response to your concerns. 

FINDING MORE HELP
 

How can I be sure my elderly father’s caregiver 

isn’t mistreating him or taking his things? 

Everything has been fine so far, but I’m worried that if Dad’s memory 

deteriorates, something might happen. 

From a distance, it can be hard to assess the quality of your father’s 

caregivers. Ideally, if there is a primary caregiver on the scene, he or 

she can keep tabs on how things are going. Perhaps you have already 

identified friends or neighbors who can stop in unannounced to be 

your eyes and ears. Sometimes, a geriatric care manager can help. 

You can stay in touch with your father by phone and take note of any 

comments or mood changes that might indicate neglect or mistreatment. 

These can happen in any setting, at any socioeconomic level. Abuse 

can take many forms, including domestic violence, emotional abuse, 

financial abuse, theft, and neglect. 

Sometimes the abuser is a hired caregiver, but he or she can also be 

someone familiar. Stress can take a toll when adult children are caring 

for aging parents, or when an older person is caring for an aging 

23 
Long-Distance Caregiving

Confusion 

Inability to attend to 

housekeeping
 

spouse or sibling. In some families, abuse continues a long-standing 

family pattern. In others, the older adult’s need for constant care 

can cause a caregiver to lash out verbally or physically. In some 

cases, especially in the middle to late stages of Alzheimer’s disease, 

the older adult may become difficult to manage and physically 

aggressive, causing harm to the caregiver. This might cause a 

caregiver to respond angrily. But no matter who is the abuser or 

what is the cause, abuse and neglect are never acceptable responses. 

If you feel that your parent is in physical danger, contact the authorities 

right away. If you suspect abuse, but do not feel there is an immediate 

risk, talk to someone who can act on your behalf: your parent’s 

doctor, for instance, or your contact at a home health agency. 

Suspected abuse must be reported to adult protective services. 

SIGNS OF SELF-NEGLECT 

Self-neglect describes situations in which older people put 

themselves at high risk. People who neglect themselves may have a 

disorder that impairs their judgment or memory. They may have a 

chronic disease. Knowing where to draw the line between a person’s 

right to independence and self-neglect can be hard. 

Here are some signs that may mean it’s time to intervene, 


although they can be hard to recognize during a short visit:
 

• 	Hoarding • Poor hygiene 

• Failure to take essential 

medications or refusal to 

seek medical treatment for 

serious illness 

• Not wearing suitable 

clothing for the weather 

• 

• 

• 	Leaving a burning stove 

unattended • Dehydration
 

24 
Finding More Help

ELDER ABUSE
 

Elder abuse is causing physical, emotional, or financial harm to 

an older person, whether intentionally or unintentionally. There 

are many possible signs of abuse: 

• 	Bruises, pressure marks, broken bones, abrasions, and burns 

may be signs of physical abuse, neglect, or mistreatment. 

• 	Unexplained withdrawal from normal activities, a sudden 

change in alertness, and unusual depression may indicate 

emotional abuse. 

• 	Sudden financial losses may be the result of exploitation. 

• 	Bedsores, unattended medical needs, poor hygiene, and 

unusual, unexplained weight loss might be signs of neglect. 

• 	Behavior such as belittling, threats, and other uses of power 

and control by spouses or other adults may signify verbal or 

emotional abuse. 

• 	Strained or tense relationships and frequent arguments between 

the caregiver and older person can suggest mistreatment, either 

by the caregiver or the person receiving care. 

If your parent is in a long-term care facility, the facility must 

take steps to prevent (and report) abuse. Nursing homes and 

hospitals are subject to strict state licensing requirements 

and federal regulation. Even so, neglect and abuse can occur. 

Physical abuse by other residents is also possible. 

For more information, contact the National Center on Elder 

Abuse. You might also talk with your state or local long-term 

care ombudsman; contact your state government, your Area 

Agency on Aging, or the National Long-Term Care Ombudsman 

Resource Center. 

25 
26
 Long-Distance Caregiving
Finding More Help

 

 

How can I lighten the load for my mother? 

Over the years, Dad’s condition has worsened, and now when we 

talk, Mom sounds exhausted. 

Your mother may be hesitant to ask for help or to say that she 

needs a break. Be sure to acknowledge how important her care has 

been for your father. Also, discuss the physical and emotional effects 

caregiving can have on people. Although caregiving can be satisfying, 

it also can be very hard work. Offer to arrange for respite care. 

Respite care will give your mother a break from her caregiving 

responsibilities. Respite care can be arranged for just an afternoon 

or for several days. Care can be provided in the family home, or your 

dad may spend the time in an adult day services program or at a 

skilled nursing facility. 

The ARCH National Respite Locator Service can help you find 

services in your parent’s community. You might suggest your mother 

contact the Well Spouse Association—it offers support to the wives, 

husbands, and partners of chronically ill or disabled people and has a 

nationwide listing of local groups. 

Your parents may need more help from home-based care to continue 

to live in their own home. Some people find it hard to have paid caregivers in the house, but most also say that the assistance is invaluable. 

If your mother is reluctant, point out that with an in-home aide, she 

may have more energy to devote to your father’s care and some time 

for herself. Suggest she try it for a short time, and then decide. 

In time, your father may have to move to assisted living or a nursing 

home. If that happens, your mother will need your support. You can 

help her select a facility. She may need help adjusting to his absence 

or to living alone in their home. Just listening may not sound like 

much help, but often it is. 

27 
Long-Distance Caregiving

 

 

Should I encourage my parents to get more help? 

The last time I visited, my mom seemed very confused, like she just 

wasn’t quite there. Dad didn’t seem to notice and didn’t want to talk 

about it when I asked him. 

If you do not see your parent often, changes in his or her health may 

seem dramatic. In contrast, the primary caregiver might not notice 

such changes or realize that more help, medical treatment, or supervision is needed. Or, the primary caregiver might not want to accept 

the fact that the health of his or her spouse or parent is failing. 

Sometimes a geriatric care manager or other professional is the first 

to notice changes. 

For families dealing with Alzheimer’s disease or another dementia, 

it can be easier to cover for the patient—doing things for him or 

her, filling in information in conversations, and so on—than to 

acknowledge what is happening. 

A few good conversation starters are: 

•	 If you thought there might be a change in Aunt Joan’s condition, 

whose opinion would you seek? 

•	 I didn’t notice Dad repeating himself so much the last time I was 

here. Do you remember when it started? 

Some changes may not be what you think. Occasional forgetfulness 

does not necessarily indicate dementia. Before you raise the issue of 

28 
Finding More Help

 

 

 

 

what needs to be done, talk to your parent and the primary caregiver 

about your concerns. 

Try not to sound critical when you raise the subject. Instead, mention 

your particular worry, for example, “Mom, it looks like you don’t have 

much food in the house—are you having trouble getting to the store?” and 

explain why you are asking. Listen to what the primary caregiver says 

about the situation and whether he or she believes there are problems. 

Discuss what you think could be done. For example, you could ask: 

•	 Would you like me to arrange to have groceries delivered on a 

regular basis? 

•	 Do we need to get a second opinion about the diagnosis? 

•	 Can you follow the medication schedule? 

•	 Would you like some help with housework? 

Try to follow your suggestions with practical help, and give specific 

examples of what you can do. For example, you might arrange to 

have a personal or home health aide come in once a week. You might 

schedule doctors’ appointments or arrange for transportation. 

In some cases, you may have to be forceful, especially if you feel that 

the situation is unhealthy or unsafe. Do not leave a frail adult at risk. 

If you have to act against the wishes of your parent or the primary 

caregiver, be direct and explain what you are going to do. Discuss 

your plan, and say why you are taking action. 

29
 
Long-Distance Caregiving

How can I help my parents decide if it’s time for 

them to move from their home? 

My mom is getting frailer, and my dad admits that keeping up 

with chores around their house is getting to be too much. I’m at 

a loss about what to do. 

The decision about whether your parents should move is often tricky 

and emotional. Each family will have its own reasons for wanting 

(or not wanting) to take such a step. One family may decide a move 

is right because the parents can no longer manage the home. For 

another family, the need for hands-on care in a long-term care facility 

motivates a change. 

In some cases, a move frees up cash so that the parent can afford a 

more suitable situation. For others, the desire to move to a safer location 

is hampered by a lack of funds to cover the cost of the new home. 

In the case of long-distance caregivers, the notion of moving can 

seem like a solution to the problem of not being close enough to 

help. For some caregivers, moving a sick or aging parent to their own 

home or community can be a viable alternative. Some families decide 

to have an adult child move back to the parent’s home to become the 

primary caregiver. 

Keep in mind that leaving a home, community, and familiar medical 

care can be very disruptive and difficult for the older parent, especially 

if they are not enthusiastic about the change. You might first want 

to explore what services are available in your parents’ community to 

help them in their home—including home health care, housekeeping, 

personal care, and transportation services. 

Check with your parents’ friends and doctors, a local social worker, 

senior centers, and other resources in their area and on the internet 

for possible sources of help. 

30 
Finding More Help

Older adults and their families have some options when it comes to 

deciding where to live, but these choices can be limited by factors 

such as illness, ability to perform activities of daily living (for example, 

eating, bathing, using the toilet, dressing, walking, and moving from 

bed to chair), financial resources, and personal preferences. 

Making a decision that is best for your parent—and making that 

decision with your parent—can be difficult. Try to learn as much as 

you can about possible housing options. 

Older adults, or those with serious illness, can choose to: 

• 	stay in their own home or move to a smaller one 

• 	move to an assisted-living facility 

• 	move to a long-term care facility 

• 	move in with a family member 

Some families find a conference call is a good way to talk together 

about the pros and cons of each option. The goal of this call is to come 

up with a plan that works for everyone, especially your parent. If the 

decision involves a move for your mom or dad, you could, even from a 

distance, offer to arrange tours of some places for their consideration. 

Experts advise families to think carefully before moving an aging 

adult into an adult child’s home. There are a lot of questions to 

consider, for example: 

• 	Is there space in your home? 

• 	Is someone around to help the older person during the whole day? 

• 	What are your parents able to do for themselves? 

• 	What personal care are you willing and able to provide—moving 

your parent from a chair to a bed or toilet, changing adult diapers, 

or using a feeding tube, for example? 

• 	What kinds of home care services are available in your community? 

• 	What kind of specialized medical care is available nearby? 

31 
Long-Distance Caregiving

 

HOW DO WE FIND A NURSING HOME? 

If the decision is made that your parent needs the intensive 

care found in a nursing home (skilled nursing facility), you 

could talk with his or her doctor or a social worker about 

which facilities would be appropriate. Once you have the 

names of several places, the primary caregiver could visit 

them and meet with staff there. Then, when you have 

narrowed down the list, you can compare the quality of 

the remaining homes at Nursing Home Compare on the 

Medicare website, www.medicare.gov/nursinghomecompare, 

or call Medicare for help. 

What happens if Mom gets too sick to stay 

at home? 

My mother is terrified of ending up in an institution and has asked 

me to promise that I won’t “put” her in a nursing home. It’s hard for 

me to figure out what to say. 

If you are over 40, chances are you’ve had a similar conversation with 

someone you love. It might come up if you see a segment about nursing 

homes while watching the evening news. “I never want to be in a nursing 

home,” your mother says. This thought usually reflects what most of us 

want: to stay in our own homes, to maintain independence, to turn to 

family and friends for help. 

Sometimes, however, parents want their adult children to promise 

that they won’t go to a nursing home. Think carefully before doing 

so. According to the Centers for Medicare & Medicaid Services, 

“Quality of care means doing the right thing, at the right time, in the 

right way, for the right person, and having the best possible results.” 

32 
Finding More Help

Agreeing that you will not put someone in a nursing home may close 

the door to the right care option for your family. It requires you 

to know that no matter what happens you will be able to care for 

your parent. The fact is that for some illnesses and for some people, 

professional health care in a long-term care facility is the only 

reasonable choice. 

When faced with a parent who is truly ill or frail, long-distance 

caregivers may find that some promises hamper their ability to do 

what is necessary, either for their own health or for their parent’s 

well-being. Many people discover too late that promises they made, 

such as, “Of course you will be able to die at home,” cannot be kept. 

Try to focus your commitments on what you know here and now. If 

asked to make a promise, you could say something like, “Dad, I will 

make sure you have the best care we can arrange. You can count on me to 

try and do what’s best for everyone. I can’t think of a situation where I’d 

walk out on you.” 

Base your promises and decisions on a realistic assessment of the 

current situation or diagnosis, and realize that you might need 

to revisit your agreement. Your 

father’s condition might change.

Your circumstances might change. 

You truly do not know what will 

happen in the future—disease and

illness can necessitate enormous 

adjustments. And, of course, it’s 

not only your parent’s health that 

changes—your own health may

alter over time. 

Base your promises and 

decisions on a realistic 

assessment of the current 

situation or diagnosis, 

and realize that you 

might need to revisit 

your agreement. 

If you’ve already made a promise to your parent, remember you can 

bring the subject up again. You can modify your answer to something 

more specific, something you feel you can undertake. As hard as that 

conversation might be, it may be better than risking the guilt of a 

promise not kept. 

33 
 

 

When Linda’s father, Neil, was 


diagnosed with congestive heart failure, she 

was 4 months into her second pregnancy. Her mother 

had died several years earlier. During her mother’s 

illness, Linda, then single, had gone home almost 

every weekend to help her father and be with her 

mother. After her mother’s death, she stayed close 

to her dad, even helping him move to an assisted 

living facility in his own town. Neil settled easily 

into the facility. Over time, Linda did her best to 

visit. With two young children, she couldn’t get 

there regularly, but she made a point of calling her 

dad twice a week. Eventually, it became harder for 

Neil to catch his breath, and on some days he was 

too tired to get out of bed. He died quietly one night 

in his sleep. Linda said she had few regrets; she had 

done everything she could do to let her father know 

how much she cared. Knowing this comforted her. 
 

What if I’m told Mom only has a few months

to live? 

I can’t fly out to be with her for that long, but I want her to know 

that I am here for her. 

The news that a family member is dying is difficult to hear—and yet, it 

is a basic part of life. When you hear that a parent has a terminal illness, 

you may be flooded with emotions: sorrow, disbelief, anger, anxiety. 

It can be hard to know what to do or what to say. Fortunately, many 

organizations are working to improve the lives of dying people and 

their families. Think about a hospice program. Hospice provides 

special care for people who are near the end of life. Check with 

Medicare for information on hospice benefits. 

Talk to your own friends, clergy, or colleagues. Many have probably 

experienced the serious illness and death of a beloved friend or family 

member. Exchanging stories can help you cope with your own impending 

loss and might provide some ideas as you try to decide what to do. 

Contact your parent’s doctor to find out what will need to be done, the 

kinds of care that your mother or father is likely to need, and how you 

can arrange for it to happen. And if there is a primary caregiver, ask 

what you can do for him or her. Remember, you will need your parent’s 

permission to discuss his or her health with the doctor. 

Be there for your parent when you can. Spend time with your mom or 

dad and let your parent know the important part he or she has played in 

your life. When you can’t be there, you can send notes or cards, videos, 

or audio messages, in addition to calling or using video chat. 

Some people find that it is very hard to talk about death and dying 

and will go to great lengths to avoid the subject. Difficult as it may 

be, try to talk with your parents about what is going on. But, if you 

can’t have that conversation, don’t let that add to your worry. There 

is no single right way to approach the death of a loved one. 

Finding More Help 35 
Long-Distance Caregiving

SUPPORT FOR CAREGIVERS
 

Why do I feel so frustrated and guilty as a 

caregiver? 

I didn’t realize that not being nearby every day would be so stressful. 

You might think that being far away gives you some immunity from 

feeling overwhelmed by what is happening to your parent, but longdistance caregivers report otherwise. Caregiving, especially from a 

distance, is likely to bring out many different emotions, both positive 

and negative. Feeling frustrated and angry with everyone, from your 

parent to the doctors, is a common experience. It can be hard to 

acknowledge that you feel this way, but try not to criticize yourself 

even more. Anger could be a sign that you are overwhelmed or that 

you are trying to do too much. If you can, give yourself a break: take 

a walk, talk with your friends, get some sleep—try to do something 

for yourself. 

Although you may not feel as physically exhausted and drained as the 

primary, hands-on caregiver, you may still be worried and anxious. 

And you might feel guilty about almost everything—about not being 

closer, not doing enough, not having enough time with your parent, 

and perhaps even feeling jealous of those who do. Many long-distance 

caregivers also find that worrying about being able to afford to take 

time off from work, being away from family, or the cost of travel 

increases these frustrations. Remember that you are doing the best 

you can given the circumstances and that you can only do what you 

can do. It may help to know that these are feelings shared by many 

other long-distance caregivers—you are not alone in this. 

If you are like most long-distance caregivers, you may also have 

many people who rely on you: your spouse, children, perhaps even 

grandchildren, as well as friends, coworkers, and colleagues. Adding 

one more item to your to-do list may seem impossible. 

36 
Support for Caregivers

As one caregiver noted, “When I was growing up, my mother and I 

weren’t very close. As an adult, I ended up across the country. When 

Mom got sick, my sister took on most of the caregiving. Because I’m 

hours away, I couldn’t be at Mom’s bedside regularly, but I did call 

her more often. I worked it out with my sister, so I took care of handling 

Mom’s monthly bills. I visited several times and always encouraged my 

sister to take a break from caregiving while I was there. Now that Mom’s 

gone, I’m dealing with the estate, closing out accounts, and deciding 

what to do with the house. We all do what we can.” 

What can I do to take care of myself? 

Taking care of myself seems like the last thing I should be thinking 

about, but I’ve heard you have to take care of yourself before you 

can take care of anyone else. 

Consider joining a caregiver support group, either in your own community or online. Meeting other caregivers can relieve your sense of isolation and will give you a chance to exchange stories and ideas. 

Support groups can be a great resource and a way to learn caregiving 

tips and techniques that work—even from afar. Some people find the 

camaraderie and companionship helpful. Perhaps an online support 

group is more your style. By focusing on what you have been able to 

contribute, you may be able to free yourself from some of the worry. 

The Eldercare Locator may be able to help you find a local group. 

ELDERCARE LOCATOR 

The Eldercare Locator, a service of the Administration on Aging, is a 

nationwide service that connects older Americans and their caregivers 

with information on senior services. You can contact the Eldercare 

Locator at www.eldercare.gov or call 1-800-677-1116 toll-free. They may 

have information about nutrition programs, preventive health services, 

elder rights, caregiver training, and support services for older people 

and their caregivers that are available in your area. 

37 
Long-Distance Caregiving

POINTS TO REMEMBER
 

What are the most important things to remember 

as I become more involved in my mom’s life? 

My mother is a widow, and I realize that it’s time for me to become 

more involved in her life. So far, my sister has been doing most of 

the work. 

Start by checking with your sister; ask what would help her the most. 

And talk to your mom to see if there is something special you can do 

for her. 

Learn. Ask your friends who are involved in caregiving if they have 

suggestions about ways to help. Find out more about resources where 

your mom and sister live that might be useful for them. Develop a 

good understanding of your mom’s health issues and other needs. 

Visit as often as you can. Not only

might you be able to notice something

that needs to be done and can be taken

care of from a distance, but you can

also relieve your sister for a short time. 

Caregiving can be 

difficult and timeconsuming, but it can 

also be rewarding. 

Caregiving—whether long-distance or hands-on—can be difficult 

and time-consuming, but it can also be rewarding. Even from a 

distance, you can help make your mom’s life easier. 

38 
 

 

 

More Ideas for Caregivers
 

If you find yourself in the long-distance caregiving role, here is a 

summary of things to keep in mind: 

• 	Know what you need to know. Experienced caregivers 

recommend that you learn as much as you can about your 

parent’s illness, medicines, and resources that might be available. 

Information can help you understand what is going on, anticipate 

the course of an illness, prevent crises, and assist in healthcare 

management. It can also make talking with the doctor easier. 

Make sure at least one family member has written permission to 

receive medical and financial information. To the extent possible, 

one family member should handle conversations with all healthcare 

providers. Try putting all the vital information in one place— 

perhaps in a notebook or in a shared, secure online document. This 

includes all the important information about medical care, social 

services, contact numbers, financial issues, and so on. Make copies 

for other caregivers, and keep the information up to date. 

• 	Plan your visits. When visiting your parent, you may feel that 

there is just too much to do in the time that you have. You can get 

more done and feel less stressed by talking to your parent ahead of 

time and finding out what he or she would like to do. Also check with 

the primary caregiver, if appropriate, to learn what he or she needs, 

such as handling some caregiving responsibilities while you are in 

town. This may help you set clear-cut and realistic goals for the 

visit. For instance, does your mother need to get some new winter 

clothes or visit another family member? Could your father use help 

fixing things around the house? Would you like to talk to your 

mother’s physician? Decide on the priorities and leave other tasks 

for another visit. 

Some Points to Remember 39 
• 	Remember to actually spend time visiting with your family 

member. Try to make time to do things unrelated to being a 

caregiver. Maybe you could find a movie to watch with your 

parents, or plan a visit with old friends or other family members. 

Perhaps they would like to attend worship services. Offer to play 

a game of cards or a board game. Take a drive, or go to the library 

together. Finding a little bit of time to do something simple and 

relaxing can help everyone, and it builds more family memories. 

And keep in mind that your parent is the focus of your trip—try 

to let outside distractions wait until you are home again. 

• 	Get in touch, and stay in touch. Many families schedule 

conference calls with doctors, the assisted living facility team, 

or nursing home staff so several relatives can participate in one 

conversation and get up-to-date information about a parent’s 

health and progress. If your parent is in a nursing home, you 

can request occasional teleconferences with the facility’s staff. 

Sometimes a social worker is good to talk to for updates as well 

as for help in making decisions. You might also talk with a family 

member or friend in the community who can provide a realistic 

view of what is going on. In some cases, this will be your other 

parent. Don’t underestimate the value of a phone and email 

contact list. It is a simple way to keep everyone updated on your 

parents’ needs. 

• 	Help your parent stay in contact. For one family, having a private 

phone line installed in their father’s nursing home room allowed him 

to stay in touch. For another family, giving Grandma a cell phone 

(and then teaching her how to use it) gave everyone some peace of 

mind. These simple strategies can be a lifeline. But be prepared— 

you may find you are inundated with calls or text messages. It’s 

good to think in advance about a workable approach for coping 

with numerous calls. 

40 Long-Distance Caregiving 
 

 

 

• 	Learn more about caregiving. Whether you are the primary 

caregiver or a long-distance caregiver, getting some caregiving 

training can be very helpful. As with a lot of things in life, many of 

us don’t automatically have a lot of caregiver skills. For example, 

training can teach you how to safely move someone from a bed to 

a chair, how to help someone bathe, and how to prevent and treat 

bed sores, as well as basic first aid. Information about training 

opportunities is available online. Some local chapters of the 

American Red Cross might offer courses, as do some nonprofit 

organizations focused on caregiving. Medicare and Medicaid will 

sometimes pay for this training. 

• 	Gather a list of resources in the care recipient’s neighborhood. 

Searching the internet is a good way to start collecting resources. 

Check with a local library or senior center, the Area Agency on 

Aging, or the Eldercare Locator (www.eldercare.gov) to find out 

about sources of help. 
Resources
 

The National Institute on Aging offers free information about health and 

aging in English and Spanish . 

National Institute on Aging

Information Center 

1-800-222-2225 (toll-free)

1-800-222-4225 (TTY/toll-free)

niaic@nia .nih .gov (email)

www .nia .nih .gov
 

www .nia .nih .gov/Go4Life (exercise and physical activity information)

To order publications (in English or Spanish) or sign up for regular email 


alerts, go to: www.nia.nih.gov/health .
 

Visit www.nihseniorhealth.gov, a senior-friendly website from the National 

Institute on Aging and the National Library of Medicine . This website has 

health and wellness information for older adults . Special features make it 

simple to use . For example, you can click on a button to make the type larger .
 

NIA’s ADEAR Center offers free information about Alzheimer’s disease, 


including specific caregiving information:
 

Alzheimer’s Disease Education and Referral (ADEAR) Center 

1-800-438-4380 (toll-free)
 

1-800-222-4225 (TTY/toll-free)
 

adear@nia .nih .gov
 

www .nia .nih .gov/alzheimers
 

42 Long-Distance Caregiving 
The following list is a sampling of groups to contact to learn more . Some 

have more detailed information related to caregiving and the health of 

older people . Others can direct you to help in your community . 

Administration for Community Living 

1-202-401-4634 

aclinfo@acl .hhs .gov (email) 

www .acl .gov 

Aging Life Care Association 

1-520-881-8008 

info@aginglifecare .org (email) 

www .aginglifecare .org 

American Geriatrics Society 

Health in Aging Foundation 

1-800-563-4916 (toll-free) 

info@healthinaging .org (email) 

www .healthinaging .org 

ARCH National Respite Network and 

Resource Center 

1-703-256-2084 

www .archrespite .org 

BenefitsCheckUp 

www .benefitscheckup .org 

Benefits.gov 

www .benefits .gov 

Caregiver Action Network 

1-202-454-3970 

info@caregiveraction .org (email) 

www .caregiveraction .org 

Caregiver Resource Directory 

Beth Israel Medical Center 

www .netofcare .org/crd/resource_

form .asp 

Centers for Medicare & Medicaid 

Services 

1-800-633-4227 (toll-free) 

1-877-486-2048 (TTY/toll-free) 

www .cms .gov 

www .medicare .gov 

www .medicaid .gov 

Department of Veterans Affairs 

Veterans Benefits Administration 

Veterans Health Administration 

1-877-222-8387 (toll-free) 

VA benefits: 

1-800-827-1000 (toll-free) 

1-800-829-4833 (TDD/toll-free) 

To speak with a healthcare benefits 

counselor: 

1-877-222-8387 (toll-free) 

www .va .gov 

www .caregiver .va .gov 

www .va .gov/healthbenefits 

Eldercare Locator 

1-800-677-1116 (toll-free) 

www .eldercare .gov 

Family Caregiver Alliance 

1-800-445-8106 (toll-free) 

info@caregiver .org (email) 

www .caregiver .org 

Hospice Foundation of America 

1-800-854-3402 (toll-free) 

info@hospicefoundation .org 

www .hospicefoundation .org

www .hospicedirectory .org 

Resources 43 
National Adult Day Services Association 

1-877-745-1440 (toll-free) 

info@nadsa .org (email) 

www .nadsa .org 

National Alliance for Caregiving 

1-301-718-8444 

info@caregiving .org (email) 

www .caregiving .org 

National Association of Social Workers 

www .helpstartshere .org 

National Center on Elder Abuse 

1-855-500-3537 (toll-free) 

ncea@med .usc .edu (email)

www .ncea .aoa .gov 

National Hospice and Palliative 

Care Organization 

CaringInfo 

1-800-658-8898 (toll-free) 

caringinfo@nhpco .org (email) 

www .caringinfo .org 

National Institutes of Health 

1-301-496-4000 

1-301-402-9612 (TTY) 

NIHinfo@od .nih .gov (email) 

www .nih .gov 

National Library of Medicine 

MedlinePlus 

www .medlineplus .gov 

National Long-Term Care 

Ombudsman Resource Center 

1-202-332-2275 

www .ltcombudsman .org 

Nursing Home Compare 

Centers for Medicare and Medicaid 

Services 

1-800-633-4227 (toll-free) 

1-877-486-2048 (TTY/toll-free) 

www .medicare .gov/nhcompare 

PACE (Program of All-Inclusive Care 

for the Elderly) 

1-703-535-1565 

info@npaonline .org (email) 

www .pace4you .org 

www .npaonline .org 

Partnership for Prescription 

Assistance 

www .pparx .org/about_us/contact_us 

(email form) 

www .pparx .org 

SHIP (State Health Insurance 

Assistance Programs) 

1-877-839-2675 (toll-free) 

info@shiptacenter .org (email) 

www .shiptacenter .org 

Visiting Nurse Associations 

of America 

1-888-866-8773 (toll-free) 

vnaa@vnaa .org (email) 

www .vnaa .org 

Well Spouse Association 

1-800-838-0879 (toll-free) 

info@wellspouse .org (email) 

www .wellspouse .org 

44 Long-Distance Caregiving 

NIH Publication No 16-5496
 .

June 2016