The Everything-You-Need-To-Know Guide for Family Caregivers
Guide to Caregiving
Millions of Americans coping with disabilities, illnesses, and chronic health conditions rely on family members, friends, and neighbors to get by. Caregiving is so much part of our national ethos, in fact, an estimated 34 million adults have served as unpaid caregivers to someone age 50 or older in the previous 12 months, according to a recent study.
Family caregivers must learn, among many other things, to manage someone else's medications; to talk to doctors and nurses on their behalf; to help them bathe or get dressed; and to generally take care of their household tasks, finances, meals, and so on.
This guide will help prepare you for managing the day-to-day activities for a parent, spouse, sibling, or adult child with a chronic condition who cannot care for him or herself. We've covered all the basics in an easy-to-understand format.
Family Care vs. Professional Care
As someone facing the responsibility for another's care, your first thought might be, "I'll do it myself." But the do-it-yourself approach is fraught with personal sacrifices and financial risks including lost wages if you drop out of the labor force entirely as well as diminished pension and Social Security benefits. The total tab can run into tens of thousands of dollars.
The cost of professional caregiving help can be staggering. Here are average yearly costs for care:
- Care ProviderAverage Annual Cost
- Adult day care center$19,500
- Homemaker services$51,480
- Home health aide Alaska*$68,594
- Home health aide in Louisiana**$38,896
*Nation's highest, **Nation's lowest
Sources: Genworth 2019 Cost of Care Survey
Are You Ready to be a Caregiver?
No one will blame you for not being prepared to be a caregiver — most Americans aren't. It's a role that's thrust on many people without warning and leaves them with that in-over-my-head feeling.
It pays to weigh your caregiving options and plan for likely situations. Ask yourself five questions if you're considering becoming a caregiver:
Do You Have the Skills and Stamina?
It's important to assess your own availability, stamina, personality, and skill sets. Can you be your loved one's chief provider of care, which might include offering help with dressing or bathing, preparing meals, providing medication management along with transportation to physician appointments? Can you handle someone else's finances, for example, including insurance and Medicare matters?
Can Take Care of Your Loved One by Yourself?
The impulse may be admirable, but if your loved one needs intensive or constant attention, you'll almost certainly need help from other family members, from professional caregivers, or from both.
Are You Prepared Financially?
Studies show that caregivers' most common expenses were on household goods, food and meals, transportation costs and medical care co-pays and prescription drugs. Are you in a position to foot these bills for a loved one? Will other family members help out financially? Will you have financial support from siblings, for example, to get part-time help from in-home caregivers or by taking the person you're caring for to an adult daycare facility maybe periodically?
Could Being a Caregiver Endanger Your Own Livelihood?
If your job is your chief source of income, make sure that taking on caregiving responsibilities won't put you at risk of jeopardizing it. Do you have a flexible work schedule? Does your employer have policies in place to help caregivers? Either way, talk with your superiors about why your schedule is likely to change. They're likely to be more understanding if they know about your situation in advance.
Do You Have the Support You'll Need to Take On Caregiving?
Life as a full-time caregiver can affect your physical, mental, and emotional well-being. Seek the social support and resources you will need, including relying on other family members for assistance and for providing you with regular breaks from caregiving.
Snapshot of Caregiving in the U.S.
Snapshot of Caregiving in the U.S.
Adults who've served as unpaid caregivers to someone age 50 or older in the previous 12 months
Average age of caregiving recipient
Average age of caregiver
Caregivers who are female
Caregivers age 50 and older who care for a relative
Average household income of caregivers
Source: Caregiving in the U.S., a study by the National Alliance for Caregiving and the AARP Public Policy Institute.
Setting up a Routine: Your To-Do Checklist
Lay Out Everyone's Expectations
What are your loved one's wishes in terms of how you will live and work together? It makes sense to get everyone on the same page from the start.
Make a list of your loved one's day-to-day needs and how you plan to meet them. In caregiving, organization is the key to success.
Make another list of all the tasks with which you need help and then make a list of all the people who can help you — family members, other relatives, friends, neighbors, friends, and so on. Then ask for help and have your loved one do some of the asking, too.
Create Backup Plans
Ask others to be on call in case of unforeseen events. Write down your care plans and schedules, and give copies to all family members and others who are involved and might be able to step in as needed.
Inventory Your Loved One's Records
Make sure you know where all your loved one's important documents and passwords are kept. Essentials include bank accounts, retirement accounts, investments, safe deposit boxes, wills and trusts, and medical information.
Find and Use Support When You Need it
If you've taken on the role of primary caregiver, don't try to do everything on your own. Make sure you set aside time for communicating and coordinating with others and don't be reluctant to call in professional help when needed.
Hold Family Meetings
Schedule them regularly to discuss and revise care plans, medical needs, finances, transportation issues and how things are going generally. Use these meetings to keep little issues and irritations from becoming big ones.
5 Free Tools for Caregivers
Many apps and trackers can help make caregiving life easier, and the list is growing. Most are free, or reasonably priced, so be sure to find the right ones for you.
Here are five top caregiving apps:
This free app lets you use your computer, smartphone, or tablet to safely organize files, contacts, and medications, and coordinate with family members and other caregivers using a shared calendar and journal. You can also use it to record notes and observations; to maintain a synchronized to-do list and a database of contacts; and a medication-management function. There's also a place to upload important files and photos.
This free app allows you to start a free, privacy-protected website that you can use to share updates, photos, videos, and the like and thereby transform your personal connections into caregiving support when you need it most.
RxmindMe and Medisafe
Medisafe and Walgreen's RxmindMe are medication and reminder apps to track a user's intake of medications, vitamins, and supplements. Both are no-cost apps, and available on Apple devices. Medisafe is also available on Android devices.
Lotsa Helping Hands
This free app (iPhone and iPad only) bills itself "a painless way to organize help," and its central feature is a calendar where you can ask for help — with things like meals for the family, rides to medical appointments, or just visits. It sends reminders and helps to coordinate logistics automatically to avoid things from falling through the cracks.
5 Websites That Help You Coordinate Care
If you're on a new journey of caring for a loved one, you're going to need some help along the way. Here are five excellent starting points for finding local and medical help online:
This site, a project of the National Council on Aging, lets you quickly determine whether your loved one might be eligible for financial help with prescription drugs, health care, utilities, and other basic needs through more than 2,000 federal, state, and private benefits programs. Benefit Finder, a similar service from the U.S. government, covers more than 1,200 federally funded benefit and assistance programs.
This online lookup tool, a service of the U.S. Administration on Aging, is a great way to find help where you live (just enter your Zip code) in more than a dozen different areas — from adult day care programs to transportation.
Family Caregiver Alliance
This information-packed website includes the Family Care Navigator, a state-by-state directory of services and assistance.
This nonprofit website has lots of information on programs to help people who can't afford medications and health care costs. NeedyMeds also offers a free drug discount card that's honored by more than 63,000 pharmacies nationwide.
VA Caregiver Support
Taking care of a veteran? You can find your local Caregiver Support Coordinator through this U.S. Department of Veterans Affairs website, plus lots of other information about VA programs for caregivers including skilled home care and respite care.
Legal Tools to Manage Health & Finances
It's a good idea to identify, locate, and organize all the documents you'll need as a primary caregiver. A good place to start is this "Caregiver's Document Organizer" from the National Caregivers Library.
Here are four key documents you should have (or at least be familiar with):
Durable Power of Attorney for Finances
Gives you the authority to make legal and financial decisions on your loved one's behalf, even if he or she has impaired cognitive abilities or becomes incapacitated. (See the MoneyGeek page Protecting Your Parents' Finances to learn more.)
Durable Power of Attorney for Health Care/Health Care Proxy
Allows you to make all decisions regarding your loved one's health care — from health care providers and medical treatments to end-of-life matters — but only if he or she is no longer competent or able to make such decisions. (See the MoneyGeek page Protecting Your Parents' Finances to learn more.)
Allows your loved one to grant you access to his or her health information and medical records, which are otherwise required to be kept private under the Health Information Portability and Accountability Act (HIPAA). Although HIPAA is a federal law, most state government web sites offer blank HIPPA authorization to disclose forms, which you can download and use.
Living Will or Advance Directive
Allows your loved one to spell out, in advance, the type of medical care he or she does and does not want to receive. (See the MoneyGeek page Protecting Your Parents' Finances to learn more.)
If you need professional help preparing any of these documents, check with the American Bar Association Commission on Law and Aging or the National Academy of Elder Law Attorneys.
Siblings & Family Dynamics When Caring for Parents
Providing care for an aging or ill parent, the Family Caregiver Alliance points out, "can bring out the best and the worst in sibling relationships."
In an ideal world, caregiving is a time for siblings to come closer together and put their own differences aside. Separate families become one. Unfortunately, however, things don't always work out this way. Conflicts can arise, for example, when there's an unequal division of caregiving duties, or when one sibling is in denial over a parent's condition. It's not uncommon, either, for male siblings to expect their female counterparts to take the lead in caregiving, or for an out-of-town sibling to leave most of the burden on the shoulders of the brother or sister who lives closest to the parent.
How can families keep frictions at bay and stay united to provide the greatest level of care for a loved one? Here are five tips to make caregiving as painless as possible
Keep Everyone in the Family Informed
Share information honestly and directly, and if you need help, ask and don't wait for others to volunteer.
Allow siblings to help in ways they are able to. Divide tasks according to individual abilities and current life pressures.
Don't Take Others For Granted
Be sure to thank everyone who helps including family members. Expressions of appreciation, even small ones, make a difference.
Keep Battles From Becoming Wars
If communication breaks down, arrange a family meeting that includes a trusted third party, such as a social worker, counselor, religious leader, or friend.
There's Always a Way to Help
Maybe you can't be on the scene 24/7 to care for a parent. But you may well be able to give your sibling a once-a-month caregiving break, or arrange for meal deliveries or respite care. What may seem like small gestures can make a big difference in keeping everyone together.
Tax Breaks for Caregivers
Generally, you can claim some care-related expenses, such as unreimbursed medical expenses for a spouse, dependent, or other qualifying relative as a deduction or credit on your federal taxes. A qualifying relative can be a parent, step-parent, mother- or father-in-law, or any other person who lived with you all year as a member of your household.
Many states have their own state tax deductions and credits to provide financial relief to caregivers.
The federal and state caregiver and medical expense tax rules can be tricky, so be sure to consult a tax professional before filing your returns.
Respite Care: Giving Caregivers a Break
The demands of caring for a loved one with a chronic disease or disability — including Alzheimer's disease and other forms of dementia, cancer, diabetes, and Parkinson's disease, to name just a few — can be extremely challenging. Studies have found that caregivers to those with chronic illness experience mental or emotional strain that could put their own health at risk.
Here are some strategies to cope with the stresses of caring for someone with a chronic condition:
Make Time For Yourself
Schedule some "quiet time" every day to clear your head. Stay connected with friends. Seek out respite care so you can step off the caregiving treadmill occasionally.
Take Care of Yourself, Too
Eat balanced meals, exercise, get enough sleep, and see your doctor right away if you experience any health issues.
Ask For Help
Understand that you can't do everything. Plan for and use respite time to give yourself time to recharge and take care of your own needs.
Even if the person you're taking care of is housebound, don't let yourself become isolated.
It's important, too, to find groups that can offer physical, emotional, and psychological support to you as a caregiver. Caring.com, for example, hosts more than 50 online support groups for caregivers, many of them focused on chronic conditions.
Churches, senior centers, hospitals, and disease-specific charities run thousands of caregiver support groups. For example, the Alzheimer's Association online lookup tool will help you find support groups and education groups near you. The U.S. Administration on Aging's Eldercare Locator can help you find services for older adults and their families. Other disease-specific charities offer support groups, too.
Finding Respite Care
As the U.S. population ages and at-home care has grown, respite care has grown in use. Respite care has many forms, but it has one purpose — a facility (or in-home service) where the primary caregiver hands-off responsibility for the person cared-for to someone else.
Respite care can be planned, such as instances where the caregiver needs to attend to their own needs, or emergency care where the primary caregiver is unable to take care of the cared-for person. Respite care is available for older adults and special needs children. It's available for day use, commonly called Adult Day Care, and overnight care. It takes many other forms, too. In fact, the Access to Respite Care and Help lists a dozen different models used in in-home respite care.
It's a good idea to plan for respite services before you need them. Follow this checklist when considering either a respite facility or in-home respite provider:
Checklist for Choosing a Respite Care Provider
- Visit the facility or speak with the candidate provider on the phone
- If your state licenses facilities of providers, check with the state to learn if the provider has unresolved complaints or violations.
- For in-home providers, ask for references
- Review costs
- Select a provider and sign a contract or memo outlining costs
- Scheduling respite dates
Depending on the medical issue of the person you're caring for, it may make sense to schedule dates well in advance to give him or her a sense of structure and familiarity to the respite care. For some conditions, such as Alzheimer's disease, a change in scenery and caregivers can have a therapeutic effect.
Paying for Respite Care
If the person receiving care is eligible for Medicare, he or she must pay 5 percent of the Medicare-approved amount for inpatient respite care. Here is where you need to talk to the doctor of the person receiving care to learn if the care is approved. This, of course, will depend on many factors, including the intensity of care required.
If the person you're caring for is a veteran, the VA offers respite care to veterans of all ages. This benefit applies to inpatient, outpatient, and home settings.
The Financial Toll of Caregiving
Caring for a loved one can take a heavy toll on your financial well-being.
The Financial Toll of Caregiving
Caregivers who say these responsibilities have forced them to quit, retire early, reduce hours, or take a leave of absence.
2 out of 5
Caregivers who say they've incurred more than $5,000 a year in out-of-pocket costs caring for a loved one.
1 out of 4
Caregivers who say they spend more than $20,000 a year on such costs.
2 out of 3
Caregivers who worry about the impact of caregiving on their own savings.
Source: Surveys by Caring.com
Caregivers Must Ask for Help: Expert Q&A with Sherri Snelling
Sherri Snelling is the author of A Cast of Caregivers: Celebrity Stories to Help You Prepare to Care and a nationally recognized expert on caregiving. She is the founder and CEO of Caregiving Club, a former chairman of the National Alliance for Caregiving, and a contributing columnist on caregiving for PBS Next Avenue, Forbes.com, Huffington Post, and CareLinx.
What's the biggest mistake most beginning caregivers make?
First is lack of planning. When there is no plan, a caregiver's emotions can become frayed, finances can be depleted, and the caregiver can become physically exhausted. Having at least some questions answered ahead of time and knowing what your loved one wants is essential to every caregiving situation.
Second is neglect of the caregiver's own health and wellness needs. Many caregivers become more ill than the person for whom they are caring. That's why taking care of yourself while caregiving is so critical.
Why do so many caregivers see it as a personal failure to have to ask others, including family members, for help? What approach should they take?
Some caregivers aren't sure what others can do to help; others feel no one else can provide the quality of care a loved one needs. That's why exploring other avenues — seeking support services through the caregiver's employer (many offer caregiving or elder-care help), getting help from other family or friends, or securing professional caregiving help — is so important. There are also some great online communities where caregivers can find help. (Editor's note: See Tools for Caregivers for links to these and related apps.)
Caregiving is a marathon, not a sprint, and thinking you can do it all alone is a mistake.
Is it possible to be a "long-distance caregiver" if you can't move near your loved one?
Some 8 million Americans are long-distance caregivers, meaning that they live more than two hours away from their loved one. In addition to the extra financial burdens (including, of course, the costs of traveling back and forth), long-distance caregivers often have "blinders" on because their infrequent visits home are typically short and everyone puts on a happy face. Not seeing the day-to-day activities makes it more difficult for long-distance caregivers to really understand the red flags that a loved one needs more help.
For most long-distance caregivers, it becomes important to find professional help, either with companies that provide trusted in-home care or through a geriatric care manager who can assess the loved one's situation and then guide a caregiver to the best home and community-based services.
It also becomes imperative to create a local circle-of-care team — your loved one's friends, neighbors, doctors, and so forth. They'll become the eyes and ears you need to ensure that your loved one is getting the right kind of care.
Why do caregiving challenges so often generate rivalries and friction among siblings, especially when one adult child is local and another isn't? How best to keep the peace?
The fear of watching a family leader become frail and vulnerable affects everyone. Emotions run high, and family dynamics become accentuated. The roles we played as children — bossy older sister, unreliable younger brother, etc. — can become areas for frustration and anger.
If one sibling lives close by, the hands-on caregiving typically defaults to that person. Any siblings living farther away have to be careful of giving too much "well intended" advice, because they're not there on a daily basis and may not know the details. Offering financial support is often the best role for them — especially if it's to give the hands-on caregiver a much-needed respite.
If families can't resolve conflicts on their own, I always advise them to bring in a neutral third party, such as a geriatric care manager, to counsel them through these episodes.
How important is respite care?
On average, caregivers are in their role for four to five years, and for those caring for someone with Alzheimer's it could be a 15- to 20-year journey. That's why respite care is essential. Exhaustion and stress can wreak havoc with your immune system, and respite care becomes the needed prescription. It's good to think of it like a daily vitamin.
Special Needs For Chronic Conditions
It's not unusual to feel overwhelmed in your role as a caregiver for someone with a chronic condition. Fortunately, every chronic condition has a care game plan caregivers can follow. Take these steps before you jump into a caregiver role. Learn:
- What causes the condition
- The condition's effects, and warning signs a caregiver needs to watch for
- Your role, if any, in treating the condition
- The likely outcome for people with this condition
Here are the challenges that caregivers face for common chronic conditions.
For the long-distance caregiver, what may start out as an occasional phone call to check in on a loved one can, over time, can turn into regular help with managing household bills, obtaining medical information, and arranging for grocery deliveries — to name just a few examples. Many long-distance caregivers focus on tasks that can be done remotely, such as arranging for in-home care, coordinating insurance benefits and claims, and making sure that other family members are kept apprised of what's going on. If a sibling or another relative is the primary caregiver, the long-distance caregiver can travel occasionally to lend a hand and provide respite care.
Closing the geographic gap, in fact, isn't as difficult as it might seem. Some long-distance caregivers have feelings of guilt from not being able to live closer to their loved one, but experts say those feelings can quickly disappear once an appropriate care plan is in place. (It's also helpful to have an emergency plan in place in the event your loved one is hospitalized.)
It's important to remember that long-distance caregiving is built around teamwork — maintaining close relationships within your loved one's caregiving community. Occasional face-to-face meetings, regular communications through other channels (email, texts, daily phone calls, and video-conferencing), and other creative communications and management strategies can go a long toward keeping everyone informed and on the same page.
These two resources are a good place to start:
So Far Away: Twenty Questions About Long-Distance Caregiving
A publication of the National Institute on Aging that you can download for free.
Since You Care: Long Distance Caregiving
The MetLife Mature Market Institute offers a free guide to long-distance caregiving, prepared in cooperation with the National Alliance for Caregiving.
Juggling Work and Caregiving
More than one of every six American workers care for a loved one. What's more, nearly one in four middle-aged and older workers report being family caregivers.
Estimates of the lost-productivity costs to employers of having so many employee-caregivers on their payrolls range from $13 billion a year (MetLife) to $34 billion a year (National Alliance for Caregiving). Yet only 11 percent of U.S. companies with more than 100 employees offer elder care or caregiving support from an employee assistance plan or work-life program, down from 24 percent more than a decade ago.
If you're a full-time employee and caregiver, consider these tips:
Understand Your Employer's Policies
Talk to your human resources department or read your employee handbook to ascertain your employer's policies with respect to caregivers. Find out about any benefits it may offer, such as an employee assistance program. Some employers provide everything from eldercare referrals to low-cost back-up eldercare to paid time off for family illnesses; others offer on-site support groups and manager training that focuses on the needs of caregiving employees.
Know Your Rights
Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks per year of unpaid leave for family caregiving, without the loss of job security or health benefits. (California provides pay beyond that period.) You may also find it useful to consult the Equal Employment Opportunity Commission's "Employer Best Practices for Workers with Caregiving Responsibilities." The EEOC has found that discriminating against workers with caregiving responsibilities may constitute discrimination based on sex, disability, or other characteristics protected by federal employment discrimination laws.
Be Frank With Your Manager
Some organizations are full of "closet" caregivers who fear that their bosses will think they're not fully committed to their jobs if they double as caregivers. It's probably a good idea, though, to be upfront about your role as a caregiver and the demands that it may sometimes put on you. If your employer offers flexible work schedules or telecommuting — about a fourth of all companies do — consider talking with your manager about using one of these options on an as-needed basis.
Ask About Flex Time
Do formal policies exist? If not, would your manager be willing to consider an arrangement to help you accommodate your caregiving responsibilities, maybe by letting you work part-time in a job-sharing arrangement?
Paid as a Family Caregiver
Your loved one may be able to — even want to — pay you for your caregiving services from his or her personal resources, through long-term care insurance benefits, or via a government-sponsored assistance program. That may be especially important if you have to quit your job or cut back on your work to provide care. See the MoneyGeek guide Aging in Place to learn more about government assistance programs and tax issues for caregivers.
More Resources for Caregivers
Here's a list of trustworthy websites and other sources of authoritative information about caregiving.
AARP Caregiving Resource Center
Handy list of resources, including links to AARP caregiving-related apps, free books, a care provider locator, and a long-term care calculator.
A search tool provided by the U.S. National Institute of Health that allows patients and families to look up clinical trials by condition and by location.
Caregiver Action Network
Advocacy organization for people who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
Eldercare Locator Resources
Local and national information and resources for caregivers.
National Alliance for Caregiving
A non-profit coalition of national organizations focusing on advancing family caregiving through research and advocacy.
Rosalynn Carter Institute for Caregiving
Establishes local, state and national partnerships committed to building quality, long-term, home and community-based services.
ARCH National Respite Network Fact Sheets
More than 60 detailed fact sheets on all aspects of respite care, including how to choose a provider, national standards, how to pay for respite care, and finding a provider for people needing specialized care.
No-Cost Publications & E-Books
Caring for the Caregiver
National Cancer Institute publication focusing on how people can understand their feelings in their roles as caregivers, how to ask for help, caring for themselves, and joining a support group.
Care for the Family Caregiver: A Place to Start
National Alliance for Caregiving publication totaling 56 pages. Wide-ranging document covering many aspects of caregiving at a glance. Good introduction to caregiving.
Prepare To Care: A Planning Guide for Families
AARP publication totaling 36 pages. A step-by-step guide for families who want to take a team approach to caregiving. Contains many resources, checklists, and similar hands-on tools for caregiving.
Time for Living and Caring: Making Respite Service Work for You
Joint California State University San Bernardino and University of Utah document describing respite care and its benefits. This 16-page document contains extensive resources on respite care and caregiving.
The Complete Eldercare Planner: Where to Start, Questions to Ask, How to Find Help
400-page book by Joy Loverde (Random House, 2009)
The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent
261-page book by Barry J. Jacobs (Guilford Press, 2006)
About the Author