So Far Away

Twenty Questions and Answers About Long-Distance Caregiving

National Institute

on Aging
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

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 

we ekly. Sometimes they’d go to a ballgame 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 se emed 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

Introduction
2 So Far Away

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. So Far Away: Twenty Questions 

and Answers About Long-Distance Caregiving 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, this booklet 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. So Far Away

often refers to caregiving for aging parents, but in fact, this booklet 

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

relative, family friend, or neighbor.

say their mom had fallen and broken her hip, Dave 

ne eded and wanted to help. Should he offer to hire a 

nurse? Should he take a we ek 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?
Introduction 3

The booklet 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 of these or 

even completely different solutions. 

We hope these questions and answers stimulate helpful problem 

solving, but we understand you will mold your own best answers. 

If you have some good ideas—or questions—we haven’t addressed, 

share them with us for consideration when we update the booklet. 

Many resources are mentioned throughout this booklet. Sometimes 

we’ve included contact information in the text, but all the resources 

and more are included at the end of the publication. 
4 So Far Away

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 

GETTING STARTED
Getting Started 5

Free Information Available from NIA

NIA has many free booklets and fact sheets that might be 

useful to caregivers. Here are just a few you might find of 

particular interest: 

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

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

	 • Crime and Older People

	 • Depression

	 • End of Life: Helping With Comfort and Care

	 • Getting Your Affairs in Order

	 • Healthy Eating After 50

	 • Home Safety for People with Alzheimer’s Disease

	 • Nursing Homes: Making the Right Choice

	 • Older Drivers

	 • Online Health Information: Can You Trust It?

	 • Talking With Your Doctor: A Guide for Older People

	 • There’s No Place Like Home—For Growing Old:

Tips from the National Institute on Aging

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). 

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.
6 So Far Away

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. 

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. 

When you live far away, 

some detective work 

might be in order to 

uncover possible signs 

that support or help 

is needed. 
Getting Started 7

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.

8 So Far Away
Getting Started 9

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?
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.
Getting Started 11

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. 
12 So Far Away

My friends who have been caregivers say that a 

lot of what they did was organizing paperwork. 

Is that a good way to be helpful? 

Yes. That’s 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 check at the same 

time to make sure that all financial matters, including wills and life 

insurance policies, are in order. It will also help if someone also has a 

durable power of attorney (the legal document naming one person to 

handle financial and property issues for another).

things you can do
Things You Can Do 13

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.

What information should a caregiver keep track of?

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, 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
14 So Far Away

My parents are in their 70s and have not 

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, talking with people about the kind of medical care 

they would want if they are seriously ill and unable to make decisions 

can be difficult. 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 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. 
Things You Can Do 15

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. Whoever is 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 any changes in 

them—and keep the 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.

Whoever is chosen to be 

a healthcare proxy should 

be able to understand the 

treatment choices, know 

your parents’ values, and 

support their decisions.
16 So Far Away

How can I find information about financial 

assistance for my parents who live across the 

country from me? They 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 how much 

medical care 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. Here is an overview to help you get started. 

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 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.cms.gov/home/medicaid.asp.

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 is a program providing 

care and services to people who otherwise would need care in a 

nursing home. SHIP, the State Health Insurance Counseling and 

Assistance Program, www.medicare.gov/Contacts, offers counseling 

and assistance to people and their families on Medicare, Medicaid, 

and Medigap matters. 
Things You Can Do 17

If your parent is eligible for veterans benefits, don’t forget to check 

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

in touch with the VA medical center nearest you. 

For information about other 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 the name, address, or Social 

Security number in order to use this service.

If 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/

find-a-plan/questions/home.aspx or call Medicare or SHIP. Also, the 

Partnership for Prescription Assistance, www.pparx.org, can provide 

a list of patient assistance programs supported by pharmaceutical 

companies. 
18 So Far Away

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 the house safer for my 

mom who is a little frail. How can we make the 

best use of our time?

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 how she seems 

to be and how she manages in her home. 

• 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 have become most dangerous and 

discuss these with her primary caregiver, if there is one, and her 

doctor. This is one way a longdistance caregiver can be helpful. 

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 correct any real dangers. Don’t wait until the next visit. 

Once the urgent issues are addressed, you and your brother can start 

Discuss your concerns 

and offer to help adapt 

the environment to meet 

your parent’s changing 

safety needs.
Things You Can Do 19

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 putting 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? 

• Is the house clean?

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.
20 So Far Away

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 website, 

www.nih.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 with his or her doctor or to 

discuss healthcare bills with Medicare or other health insurance. 

Ask your parent to complete a release form that allows the doctor 

to discuss his or 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 

appointment with a doctor allows them to seek more detailed 

information and answers to questions. 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.

When you visit your 

parent, consider going 

along on a doctor’s 

appointment.
Things You Can Do 21

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 — .gov is a government agency, 

.edu is an educational institution, .org is a professional 

organization or a non-profit, and .com is a commercial 

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

• Do you know who the author is? If so, what are his/her 

credentials? Will he or she profit from something 

recommended on the website? 

• 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?
22 So Far Away

I’m visiting my dad for a week, and he has asked 

me to come along on his medical appointment. 

How can I make the most of this visit with his 

doctor? I don’t want to waste the doctor’s time.

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.
Finding More Help 23

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. Yet, even 

some health professionals seem to think it 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.

How can I be sure my 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 basic neglect. 

Sometimes the abuser is a hired caregiver, but other times it is 

someone your father knows. The stress that may happen when adult 

children care for their aging parents or when another older adult, like 

finding more help
24 So Far Away

a spouse or sibling, is a caregiver can take a toll on everyone. 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, contact 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 which 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 some may be

hard to recognize during a short visit by a long-distance caregiver:

• Hoarding

• Failure to take essential

medications or refusal to 

seek medical treatment for 

serious illness

• Leaving a burning stove

unattended

• Poor hygiene

• Not wearing suitable

clothing for the weather

• Confusion

• Inability to attend to

housekeeping

• Dehydration
Finding More Help 25

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 regulations. 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.
26 So Far Away
Finding More Help 27

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.
28 So Far Away

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?
Finding More Help 29

Some changes may not be what you think. Occasional forgetfulness 

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

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: 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.
30 So Far Away

My mom is getting frailer, and my dad admits 

that keeping up with chores around their house 

is getting to be too much. How can I help my 

folks decide if it’s time for them to move? I don’t 

think they can stay in their own home much 

longer. What are their options? I’m at a loss. 

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, bringing 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.
Finding More Help 31

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 another 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, even 

from a distance, you could 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, 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?
32 So Far Away

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, or call Medicare for help.

What happens if my mother gets too sick to 

stay at home? She 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 is 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.” 
Finding More Help 33

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 

wellbeing. Many people discover too late that promises they made 

(“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.

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. 

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.
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.
Finding More Help 35

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 and talk to your own healthcare 

provider as well 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 them.

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 or a taped message, in addition to calling.

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 is, talk 

to 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.
36 So Far Away

Why do I feel so frustrated and guilty? 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, are common experiences. 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 longdistance caregivers also find that worry 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 already have 

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

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

one more “to do” to your list may seem impossible.

support for caregivers
Support for Caregivers 37

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 did visit 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 yourself might seem like the last thing you should be 

thinking about, but you have to take care of yourself before you can 

take care of anyone else.

You might find some consolation or comfort in knowing that you are 

not alone. 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, works

through local and state Area Agencies on Aging. You can contact the 

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

They might 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.
38 So Far Away

My mom’s 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. What are the most important points to 

remember as I begin? 

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—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. 

Caregiving can be 

difficult and timeconsuming, but it can 

also be rewarding.

points to remember
Points to Remember 39

Some Good Ideas

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 be the one to talk with all healthcare 

providers. Try putting together a notebook, on paper or online, 

that includes all the vital information about medical care, social 

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

copies for other caregivers, and keep it 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 to another visit. 
• 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 rent 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. The human touch is important 

too. Try to find people 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. You can program telephone 

numbers (such as those for the doctors, friends, and yourself) into 

the phone for speed dialing contacts. (You might also provide a 

written key to the speed dial numbers to keep with the phone.) 

40 So Far Away
So Far Away • Some Points to Remember 41

Such simple strategies can be a lifeline. But be prepared—you 

may find you are inundated with calls from your parent. It’s good 

to think in advance about a workable approach for coping with 

numerous calls.

• 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. Training 

can teach you how to safely move someone from a bed to a chair, 

how to help someone bathe, how to prevent and treat bed sores, 

as well as basic first aid, for example. Information about training 

opportunities is available online. Some local chapters of the 

American Red Cross might offer courses, as do some non-profit 

organizations focused on caregiving. Medicare and Medicaid will 

sometimes pay for this training. Contact the Eldercare Locator.

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

If you are familiar with computers, searching the internet is a 

good way to start collecting resources. Having a copy of the phone 

book for your parent’s city or town can also be really useful. 

The “Blue Pages” provide an easy guide to state and local services. 

Also check with local senior centers for lists of sources of help. 

The National Institute on Aging’s website, www.nia.nih.gov/health, 

offers an online list of more than 300 national health and aging 

organizations, including contact information.
42 So Far Away

Resources

The National Institute on Aging offers free information about health and 

aging in English and Spanish.

National Institute on Aging

Information Center

P.O. Box 8057 

Gaithersburg, MD 20898-8057 

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

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

www.nia.nih.gov

www.nia.nih.gov/Espanol

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

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

Visit NIHSeniorHealth (www.nihseniorhealth.gov), a senior-friendly 

website from the National Institute on Aging and the National Library of 

Medicine. This website has health information for older adults. Special 

features make it simple to use. For example, you can click on a button to 

have the text read out loud or 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

P.O. Box 8250

Silver Spring, MD 20907-8250

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

www.nia.nih.gov/Alzheimers 
Resources 43

Following is a list 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 on Aging

Washington, DC 20201

1-202-619-0724

www.aoa.gov 

American Geriatrics Society

Foundation for Health in Aging

Empire State Building

350 Fifth Avenue, Suite 801

New York, NY 10118

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

www.healthinaging.org

ARCH National Respite Network and 

Resource Center

800 Eastowne Drive, Suite 105

Chapel Hill, NC 27514

1-919-490-5577

1-919-490-5577 (TDD)

www.archrespite.org

BenefitsCheckUp

www.benefitscheckup.org 

Caregiver Resource Directory

Beth Israel Medical Center

The Family Caregiver Program

First Avenue at 16th Street

New York, NY 10003

www.netofcare.org/crd/resource_

form.asp 

Centers for Medicare & Medicaid 

Services (CMS)

7500 Security Boulevard

Baltimore, MD 21244-1850

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

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

www.cms.gov

www.medicare.gov

Children of Aging Parents

P.O. Box 167

Richboro, PA 18954

1-800-227-7294 (toll-free)

www.caps4caregivers.org

Department of Veterans Affairs

Veterans Benefits Administration

Veterans Health Administration

810 Vermont Avenue, NW

Washington, DC 20420

VA benefits:

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

1-800-697-6947 (TDD/toll-free)

To speak with a healthcare benefits

counselor:

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

www.va.gov 

www.caregiver.va.gov 

 

Eldercare Locator

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

www.eldercare.gov

Family Caregiver Alliance

180 Montgomery Street, Suite 900

San Francisco, CA 94104

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

www.caregiver.org

Family Caregiving 101

www.familycaregiving101.org 

Hospice Foundation of America

1710 Rhode Island Avenue, NW

Suite 400

Washington, DC 20036

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

www.hospicefoundation.org

www.hospicedirectory.org 
44 So Far Away

National Adult Day Services Association

1421 East Broad Street, Suite 425

Fuquay Varina, NC 27526

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

www.nadsa.org 

National Alliance for Caregiving

4720 Montgomery Lane, 2nd Floor

Bethesda, MD 20814

www.caregiving.org 

National Association of Professional 

Geriatric Care Managers

3275 West Ina Road, Suite 130

Tucson, AZ 85741

1-520-881-8008

www.caremanager.org

National Association of Social Workers

750 First Street, NE, Suite 700

Washington, DC 20002-4241

www.helpstartshere.org 

National Center on Elder Abuse

c/o Center for Community Research 

and Services

University of Delaware

297 Graham Hall

Newark, DE 19716

1-302-831-3525

www.ncea.aoa.gov

National Family Caregivers Association

10400 Connecticut Avenue, Suite 500

Kensington, MD 20895-3944

1-800-896-3650 (toll-free)

www.nfcacares.org 

National Hospice and 

Palliative Care Organization

1731 King Street, Suite 100

Alexandria, VA 22314

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

www.caringinfo.org 

www.nhpco.org

National Institutes of Health

9000 Rockville Pike

Bethesda, MD 20892

1-301-496-4000

1-301-402-9612 (TTY)

www.nih.gov 

National Library of Medicine

MedlinePlus

www.medlineplus.gov

National Long-Term Care 

Ombudsman Resource Center

1828 L Street, NW, Suite 801

Washington, DC 20036

1-202-332-2275

www.ltcombudsman.org

PACE (Program of All-Inclusive Care 

for the Elderly)

1-800-633-4227

www.pace4you.org

www.medicare.gov/Nursing/

Alternatives/PACE.asp

Partnership for Prescription 

Assistance

1-888-477-2669 (toll-free)

www.pparx.org

SHIP (State Health Insurance 

Assistance Program)

1-800-633-4227

www.medicare.gov/Contacts

Visiting Nurse Associations 

of America

900 19th Street, NW, Suite 200 

Washington, DC 20006 

1-202-384-1420 

www.vnaa.org 

Well Spouse Association

63 West Main Street, Suite H

Freehold, NJ 07728

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

www.wellspouse.org

NIH Publication No. 10-5496

August 2010

Reprinted June 2011

National Institute

on Aging