Prepare to Care

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Fuente: AARP


Saving for college. Paying a mortgage. Investing in a retirement account. Most Americans understand why it’s important to plan for the future. But when it comes to caring for an aging loved one, most families don’t have a plan until there is a problem. Lack of planning doesn’t mean there is a lack of commitment. On the contrary, often families avoid discussions about the future simply because they don’t want to think about changes in the lives of the people they love the most. Like writing a will or buying a life insurance policy, contemplating the “what if’s,” especially a serious illness or a loss of independence, can be downright depressing.

“When I really get down to it, it’s almost impossible to believe that my dad may need help. For my whole life, he’s always been the one that took care of me.”

So why not just throw this brochure on the “to do” pile for another day?

Because failing to plan for future responsibilities can make a bad situation worse. And the loved ones you tried to protect by tiptoeing around “uncomfortable” issues will be the ones who end up suffering the most. While you might not be thinking about it now, putting together a caregiving plan with your loved ones and other family members helps eliminate problems at home and work. In addition to minimizing the last minute scrambling and family tensions that commonly arise when a once-independent loved one needs more consistent care, a caregiving plan can also help reduce a family’s financial strain. The truth is that family caregiving responsibilities take a toll on family finances. A study by the MetLife Mature Market Institute, for example, found that caregiver respondents reported an average loss of $566,443 in wage wealth—all because of the unanticipated consequences of their caregiving responsibilities. It’s not just the caregivers who are affected. Without a caregiving plan, those family members most
afected by the crisis—the care recipients themselves—end up with the least say in their wishes and priorities for the future. It’s hard to imagine not having control over your own future, but too often that is what happens when families don’t ask the important questions ahead of time.

Think a caregiving crisis won’t happen to your family?

Today, 30 million households are providing care for an adult over the age of 50—and that number is expected to double over the next 25 years. For many Americans, life at 40, 50 or even 60 years old will include care for an aging parent or relative. As the nation grows older, the need for caregiving will be as common as the need for child care. If you have not yet begun to discuss a caregiving plan with your loved ones and other members of your family, it is never too late. It doesn’t matter who starts the conversation. What really matters is that every American family has the opportunity to talk about and create a caregiving plan for their aging loved ones based on the needs and wishes of those who will be receiving the care.

Five Steps to a Caregiving Plan for Your Family

This guide is designed to help you and other family members discuss and create a caregiving plan for yourself or an aging parent, other relative, or close friend or neighbor. Each of the following five steps includes information on how to get started, questions to ask, and where to find basic resources. Don’t be discouraged if you can’t answer every question or fill in every blank. And remember, you don’t have to do it all at once. The important thing is to start—and continue—the conversation in a way that works for you and your family.

STEP 1 Prepare to Talk
STEP 2 Form Your Team
STEP 3 Assess Needs
STEP 4 Make a Plan
STEP 5 Take Action

The Opinion That Matters Most Every caregiving plan must be grounded in the wishes and consent of the person(s) who will be receiving the care. It’s still important for caregivers to evaluate their own values, responsibilities, and finances, but they should never make a plan or intervene in the lives of their loved ones without their knowledge or consent. This is important not only to protect the interests and needs of the person being cared for, but also because the caregiver could get into legal trouble if they do not have the legal authority to act on behalf of a loved one. Keep in mind that even if a family has good intentions, financial institutions, courts, and eldercare services are mindful of potential elder abuse, fraud, and neglect, and will expect proof of legal authority.

STEP 1 Prepare to Talk

Let’s face it. No adult child wants to talk about the “what if’s” with their fiercely independent parents. And no parent wants to admit to themselves or their children that they might need help someday. So before you figure out who will care for your loved one, it’s important to ask yourself some questions:

• Who is the best person to start the conversation with your loved one(s)?
• What are your biggest concerns and priorities as you help put together a caregiving plan for someone else?
• What is the best thing you think might happen as a result of this conversation?
• What is the most difficult thing for you about having this conversation with a person you care about?
• What are you afraid might happen as a result of this conversation?
• How do you think your loved one and other family members might react to the conversation?
• How does your family usually respond when uncomfortable subjects are discussed?
• How can you explain to your loved one and other family members why it is important to have this conversation?
• In addition to emotional support, how much financial support are you willing or able to provide if your loved one needs it? (You might start by reviewing The Financial Steps for Caregivers: What You Need to Know About Money and Retirement, from the Women’s Institute for a Secure Retirement at

“Every time I try to bring up the future, my dad just shuts down. He tells me the important papers are in the file cabinet, but the conversation never seems to go beyond that.”

Understanding Your Loved Ones’

Goals for the Future

Your conversation about the future doesn’t have to focus only on a caregiving plan. You may also consider talking generally with your loved ones about what is most important to them as they grow older. You can use the following checklist as a starting point to better understand their priorities. Start by asking them to check all those that apply and then spend some time talking about each one in a little more detail.

_____ To remain as independent as possible for as long as possible
_____ To remain healthy and active
_____ To remain in my own home for as long as possible
_____ To focus on a hobby of mine
_____ To work for as long as possible
_____ To become involved in the community
_____ To remain as financially independent as possible
_____ To take classes
_____ To create a safety net in the event of an emergency or crisis situation
_____ To start my own business
_____ To buy a second home
_____ To move closer to family
_____ To relocate to a smaller home
_____ To retire in a different place
_____ To travel
_____ To be able to help my children and grandchildren

10 Tips on How to Approach a Difficult Topic

The reality is that some conversations are just plain difficult— even with the people to whom you feel the closest. When preparing to discuss a difficult topic, it helps to follow the ground rules below to ensure that everyone’s feelings are respected and viewpoints are heard. To help make the conversation as productive and positive as possible:

1. Try not to approach the conversation with preconceived ideas about what your loved ones might say or how they might react. “Dad, I just wanted to have a talk about what you want. Let’s just start with what is important to you.”
2. Approach the conversation with an attitude of listening not telling. “Dad, have you thought about what you want to do if you needed more help?” as opposed to “We really need to talk about a plan if you get sick.”
3. Make references to yourself and your own thoughts about what you want for the future. Let them know that they are not alone; that everyone will have to make these decisions. “Look, I know this isn’t fun to think about or talk about, but I really want to know what’s important to you. I’m going to do the same thing for myself.”
4. Be very straightforward with the facts. Do not hide negative information, but also be sure to acknowledge and build on family strengths. “As time goes on, it might be difficult to stay in this house because of all the stairs, but you have other options. Let’s talk about what those might be.”
5. Phrase your concerns as questions, letting your loved ones draw conclusions and make the choices. “Mom, do you think you might want a hand with some of the housekeeping or shopping?”
6. Give your loved ones room to get angry or upset, but address these feelings calmly. “I understand all this is really hard to talk about. It is upsetting for me, too. But, it’s important for all of us to discuss.”
7. Leave the conversation open. It’s okay to continue the conversation at another time. “Dad, it’s okay if we talk about this more later. I just wanted you to start thinking about how you would handle some of these things.”
8. Make sure everyone is heard—especially those family members who might be afraid to tell you what they think. “Susan, I know this is really hard for you. What do you think about what we are suggesting?”
9. End the conversation on a positive note: “This is a hard conversation for both of us, but I really appreciate you having it.”
10. Plan something relaxing or fun after the conversation to remind everyone why you enjoy being a family. Go out to dinner, attend services together, or watch a favorite TV program. These are just a few suggestions of things you, your loved ones, and other family members can do to unwind after a difficult conversation.

The caregiving role is a complex one. Caregivers must consider their role as individuals and as family members. Sometimes these roles are in agreement and sometimes they compete. Expect that there may be conflicts and don’t be afraid to talk them out.

STEP 2 Form Your Team

You can’t create an effective family caregiving plan without the input and support of your loved ones and your other family members— everyone should have a say in the process. Chances are you already have an idea of who needs to be in on the conversation, but it helps to list everyone who should and would want to be a part of the team. That includes “difficult” or argumentative family members. It might be easier to leave them out of the initial discussion, but it won’t help later when it’s time to put the plan into action. Before you sit down to talk about the next steps, you need to assemble your “team”—those family members (and perhaps some close friends) who want or need to play a role in the caregiving plan. The most important—and unfortunately often the most overlooked— participant in the conversation is the person who may be on the receiving end of the care. Barring mental or physical incapacity or other extraordinary circumstances, the person receiving the care should play the most significant role in the discussion.

The care recipient’s wishes and priorities are the cornerstone of every family caregiving plan. To move the planning process forward, it will also help to have one person who is designated as the family team leader. You don’t have to vote on who the leader should be nor does the family team leader get to dictate the outcome of the conversation. It is important, however, to have a point person to keep the process going and make sure that people agree to and understand the final results.

My mom told us that she wanted to stay in her house no matter what. Knowing that helped us figure out a way to keep her where she wanted to be even after she got sick.

STEP 3 Assess Needs

Assessing the Needs of Your Loved Ones The person you are caring for (or will be caring for in the future) should be involved and agree to every step of the planning process. Once you have your team in place, the next important step is to assess the needs of your loved one. Sometimes this is difficult to do ahead of time, but figuring out what your loved one’s priorities are, where they want to live, and the nature of the care involved will help you determine what kind of information you need the most and which resources will be most helpful. Finding the Right Information Before you can come up with a family caregiving plan that works for everyone, you will need to assess your loved ones’ needs and gather two types of information. First, it’s important to get a handle on where to find your loved ones’ personal information — from important documents such as wills and insurance policies to which files the electric bills are in. Second, it’s helpful to find out more about the many national and local resources that are available to support caregivers—especially information about public benefit programs that might provide just the extra boost families may need.

A. Organizing the Most Helpful Resources

Putting all the useful information in one central place will help avoid uninformed decisions and expensive mistakes later on. The following checklists are designed to help your family caregiving team begin to put together the many sources of information you might need.


B. Information on Public Benefits

Public and private benefits programs are a positive and unique part of living in a nation that cares about the well-being of its citizens. The AARP Foundation’s Benefits Outreach Program is committed to doing everything it can to encourage Americans 50+ to take full advantage of these resources—programs that they have helped to build through years of hard work, military service, raising productive young people, and volunteering in their communities. These federal, state, and local government programs help older individuals pay for doctor visits, food, energy bills, property taxes, and other expenses. Millions of older people are eligible for these benefits, but only half of those who qualify for help are actually receiving it. In general, older Americans can sign up for Social Security when they are 62 or older and for Medicare when they are 65. For the other programs, age may or may not be an important criteria—but all are available to older Americans.

Core Public Benefits for Older Americans

* Each program has its own income guidelines, and most will take into account a variety of other eligibility factors. In general, limited income is considered to be between 75% and 150% of the poverty level. In 2006, the poverty level is $9,800 for 1 person, $13,200 for 2 people and $20,000 for 4 people. To find out if your family member qualifies for these programs, use the AARP Foundation’s Benefits QuickLINK at (see the next page for more information) and apply for the programs that they are eligible to receive.

Find Public Benefits

To find out if your family members are eligible for the 15 most important public benefits for older adults and children, use the AARP Foundation’s Benefits QuickLINK online screening tool.

Benefits QuickLINK ( helps people with low to moderate incomes find out if they qualify for the 15 most important public benefits for older adults and children. Answer a few questions and receive fact sheets, websites, and applications for state, federal, and private programs that help pay for groceries, prescription drugs, health insurance, and more.

“Even with prescription drug coverage, I had to help my dad pay for his medication until I found out he was actually eligible for veteran’s benefits all along. It would have been nice to know that $1,000 ago.”

C. National and Local Resources

Following is a list of common questions future caregivers may have when they are putting together a plan with an aging loved one and other family members. Start with the resources listed on the next page to get the answers and basic information your family may require based on your initial assessment.

Housing Resources

Where can I find out about lowincome programs and benefits in my mom’s town?

Eldercare Locator (; 1-800-677-1116. Sponsored by the U.S. Administration on Aging, the locator specializes in putting caregivers in touch with a range of resources in local communities.

Can my dad get help paying for his phone bill?

• LinkUp America helps qualified low-income consumers to connect, or hook up, to a telephone network.
• The Lifeline Assistance Program provides certain discounts on monthly service for qualified telephone subscribers. The federal discount is up to $10.00 per month, depending on your state in addition to whatever discount your state might provide.
• Contact your local telephone company or your state regulatory agency for information about these programs and to determine whether or not you qualify for discounts under the Low-Income program.
• For more information, go to and type “Save on Phone Bill” in the SEARCH box.

Can my mom get help paying for the high cost of her heating bills?

The Low Income Home Energy Assistance Program (LIHEAP): or 1-866-674-6327

Where can I learn more about housing?

There are a range of federal, state and local housing and housing assistance programs that are available to older individuals and families with limited incomes. To learn more, log on to

What’s a Reverse Mortgage?

If your loved ones own their own home, reverse mortgages may be a way to help them use part of the value of their property to help with daily living expenses. For more information about reverse mortgages, log on to

Transportation Resources

What kind of transportation resources are available in my dad’s town?

Eldercare Locator (; 1-800-677-1116. Sponsored by the U.S. Administration on Aging, the locator specializes in putting caregivers in touch with a range of resources in local communities.

Where can I find more information about driver safety for my older parents?

The AARP Driver Safety Program is the nation’s first and largest classroom refresher course for drivers age 50 and older that has helped millions of drivers remain safe on today’s roads. Visit

Where can my dad take an AARP Driver Safety Course?

To locate the nearest Driver Safety Course, go to or call 1-888-AARPNOW (1-888-227-7669).

Health Resources: Medicare & Medicaid

Where can I learn more about Medicare?

To find out more information about Medicare, log on to Use the Search feature in the top right-hand corner to find your way around the site. You can also call 1-800-MEDICARE for more information.

What are the best ways to help pay for prescription drugs?

For information on resources and services to help cover the costs of prescription drugs, log on to or call 1-800-MEDICARE. You can also find information at

Where can I learn more about Medicaid?

To find out more information about Medicaid, log on to Use the Search feature in the top right-hand corner to find your way around the site.

What are Medicare Savings Programs?

Medicare Assistance Programs help people with Medicare, who do not qualify for Medicaid, pay for some of the costs of Medicare. To find out more information, log on to

I need information on eldercare resources in my parents’ community. Where should I start?

Eldercare Locator (; 1-800-677-1116. Sponsored by the U.S. Administration on Aging, the locator specializes in putting caregivers in touch with a range of resources in local communities.

Financial Resources

Can I get someone to help my parents keep track of their bills?

For more information about resources to help you manage a loved one’s finances, log on to the AARP Money Management Program at

Can anyone help me get my parents’ taxes done?

AARP Tax-Aide offers a network of national volunteers who help older individuals and family members fill out complicated tax forms. For more information, log on to or call 1-888-AARPNOW.

Why is it so difficult for most families to talk about their financial situation?

A personal finance expert from Cooperative Extension can provide you with information and resources. Visit eXtension at today.

Who can help my parents draft a will?

What is a Will?: Self-Help Guide and Worksheet for Your Will walk individuals through the process of planning and finding qualified professionals to draft a will. These publications are available by logging on to

Where can I find out more about estate planning?

AARP offers information on estate planning that explains the basics of what you need to know about wills, trusts, and more, in plain, easy-to-understand English. For more information, go to and type “estate planning” in the Search box.

I think my parents may be eligible for programs that help people with not much money. Where can I find them?

The AARP Foundation Benefits Outreach Program. Go to

Not all families are the same. If you don’t think a family meeting will work in your family, you may consider hiring a professional to help your loved one and other family members put a plan together.

D. Family Caregiving Information

AARP offers a variety of comprehensive resources for caregivers and their families. The publications and websites listed below are an excellent starting point for anyone who is beginning to talk about and plan for caregiving responsibilities.

Family Caregiving Resources Caring for Your Parents: The Complete AARP Guide by Hugh Delehanty and Elinor Ginzler (AARP Books/Sterling Publishing Co., Inc., 2005) can be found at

AARP Caregiving WebPages. Extensive resources on caregiving and caregiving supports can be found by logging on to

To order Prepare to Care or for more information:

• call 1-888-OUR-AARP (1-888-687-2277)
• email

“When my aunt got sick all of a sudden, I watched my cousins argue and fight about where she would live and who would take care of her. The arguments left deep scars, and their relationships have never been the same. I want us to avoid that.”

STEP 4 Make a Plan

Once you have put together your team, assessed your family’s needs, and gathered all the information you need to make solid, informed decisions, it’s time to sit down with all the important players and put your plan together. Keep in mind that you can never plan for every detail or eventuality, but if you have the basics covered, you will have an important foundation to build on later.

There are a million different ways to have a planning conference with your loved one and family. You can host a family meeting, hold a family conference call (especially if your family members are spread out across the country), or have a series of email conversations, especially to keep everyone informed as things change. For the initial planning, however, a face-to-face conversation is always the best idea. Whatever you do, make sure that everyone knows about the discussion ahead of time so that there are no surprises or hurt feelings. The family team leader can get the conversation started, but no one person should dictater limit what is talked about.

As we have made clear throughout this publication, the person who will be receiving the care will have the ultimate control over the conversation and the plan for the future. After coming up with a plan, the group may consider designating one family member to write up a brief summary of what was decided. Because people sometimes remember conversations differently, this is an important tool to make sure that everyone agrees on and has a record of what was discussed and who is responsible for what. Most important, a written summary of the plan helps to ensure that all the wishes and needs of the potential care recipient have been considered and included. The plan itself doesn’t have to be fancy, formal or long (see example on page 28). Think of it as a document that outlines the general “rules” rather than a blueprint that lays out every possible detail.

While there is more than one way to make sure that you cover all the topics that are important to your family, you might choose to organize the discussion around the major areas of life that might be impacted by caregiving responsibilities. No matter how you decide to have the conversation, the group should designate a point person who will be responsible for each area. Others within the group can then be assigned to help with specific tasks within each area. This keeps one family member from handling too many tasks (e.g., one sibling ends up taking on most of the responsibilities because she lives the closest). Again, the family members who will receive the care should play the most significant role in talking about and assigning roles and tasks. Even if one child is an accountant, an older parent may feel more comfortable having another child look after their financial affairs. Often, loved ones already have strong and well-founded opinions about who they might want to do which task.

STEP 5 Take Action

One of the hardest tasks in the world is putting together a plan you hope you and your loved one will never have to use. For ourselves and our loved ones, all we really want is happiness, good health, and loving family and friends. When the unexpected happens, however, it helps to have the tools in place to deal with life’s complications, especially when they are designed to help you care for someone close to you. The strength and success of a caregiving plan is only tested when the plan is actually put into action.

While this seems obvious, the best-laid plans are sometimes hard to implement or are forgotten altogether. When a crisis happens, it is difficult to remember a specific blueprint for action. And it’s always possible that circumstances and relationships may have changed by the time a family is ready to use the plan. That’s why it is important for the team to re-evaluate and perhaps expand the plan from time to time. Most important, family members should always remember that no matter how organized and committed you are, the plan will have to change as you go along. That’s O.K. It’s having the conversation in the first place—and understanding the needs, wishes and dreams behind it—that will help ensure a meaningful and caring future for you and those you love.

How Can I Get More Information?

If you or someone you know needs the services of the AARP
Foundation or to contact us for more information about the
AARP Foundation, the programs we support, or to volunteer:
You can download a copy of Prepare to Care at
You can write us at:
Benefits Outreach Program
AARP Foundation
601 E Street NW
Washington, DC 20049
You can call us at: 1-888-OUR-AARP (1-888-687-2277)

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