How to Be a Caregiver
By Tara Parker-Pope
Illustrations by Marcos Chin, animation by Shay Hamias
Even if you’re not a caregiver now, odds are that you will find yourself in the role someday. In the United States about one in five adults is providing unpaid health or supportive care to someone they love — an aging parent, a family member or child with a disability or a spouse, partner or friend with an illness. We asked experts on caregiving and aging, as well as dozens of people who have been caregivers themselves, for their best advice to help the next generation of caregivers.
We asked readers who had cared for a loved one what a new caregiver should know. Here are six strategies to guide you.
Rosalynn Carter, the former first lady who started the Rosalynn Carter Institute for Caregiving, famously stated that there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will become caregivers and those who will need caregivers.
Sometimes a person becomes a caregiver overnight after a health crisis, like a stroke or cancer diagnosis. But often, caregiving starts slowly with a few errands like picking up groceries. While you may not call yourself a caregiver, at some point it becomes clear that life has changed and you don’t have the freedom to go on vacation or out with friends unless someone else can step into your caregiving role.
“If we acknowledge that we’re caregivers, we’re much more apt to get resources, support and services that can help us in that role and help the loved ones we’re caring for,” said Amy Goyer, author of “Juggling Life, Work and Caregiving,” and a caregiving expert for AARP, the advocacy group for older people. “Personally it’s important to acknowledge it. It’s something to plan for and schedule in your life.”
When I asked readers who had cared for a loved one to tell me what we should know about caregiving, I received hundreds of emails from current and former caregivers who wanted to help. What was most notable is how consistently caregivers talked about the joy and satisfaction of the work they do, despite the enormous hardship it sometimes imposed. A reader named Marnie shared her memories of caring for her mother.
Caregiving requires an enormous commitment of time and energy, and most of this guide focuses on practical advice for getting organized and finding resources to ease the burden. But experienced caregivers also offer six personal strategies to guide you through the challenging times.
1. Let the patient lead. Readers consistently talked about the importance of autonomy for the one receiving care. Include the person in care decisions whenever possible. Make sure doctors don’t talk as if the patient isn’t in the room.
2. Focus on comfort. Let comfort, joy and pleasure be your guideposts. Try not to nag. Readers talked about the importance of small moments of shared joy — listening to swing music or a favorite crooner, playing card games and going for ice cream.
3. Listen to the experts. Find experts to advise you, and listen to them. Arm yourself with information from caregiving organizations and support groups. Trust your instincts. Ignore most of the unsolicited advice you are likely to receive.
4. Talk to other caregivers. Support groups will be one of your best resources.
5. Take care of yourself. Even five- and 10-minute breaks during the day can help. Try keeping a gratitude journal, download a meditation app or do a six-minute workout to refresh your mind and body. Use adult day care or in-home caregivers from time to time so you can take a break. Take up friends on their offers to help, even if it’s just to get your hair done. Exercising, sleeping and eating well will make you a better caregiver for your loved one.
6. Shed the guilt. Guilt is a common theme here, but experienced caregivers say it’s important to know your limits, practice self-compassion, ask for help and remind yourself that the work you’re doing is difficult and important.
If caregiving is not a topic you’ve thought about, it’s time to start. A number of global and social trends have changed the outlook for all of us, whether it’s giving care or needing it. Rising health care costs mean more people will require care at home with a family member because they can’t afford to pay for it. The aging population will force more adult children, spouses, relatives and friends into caregiving roles. Demographic changes in child rearing have shifted the care giving burden to a younger population. Couples have delayed having children and families have gotten smaller, and now people in their 20s and 30s are shouldering the burdens of caregiving at the expense of their careers, and they have fewer siblings to share the load.
Today, 21.3 percent of U.S. adults are caregivers, according to Caregiving in the U.S. 2020, a report from the National Alliance for Caregiving and AARP. The report defines a caregiver as someone who has provided care to an adult or a child with special needs at some time in the past 12 months. The number of caregivers is growing, and now totals about 53 million adults, up 20 percent from 43.5 million caregivers in 2015. Here are some facts about caregivers in the United States
The global pandemic, which has taken a disproportionate toll on people who live in nursing homes and assisted care facilities, is also expected to change how we care for people as they age or become ill. About 40 percent of deaths in the United States from Covid-19 are linked to nursing homes, prompting speculation that caregiving will continue to shift away from group settings and into the home.
“We know many people, because of the pandemic, are re-examining plans,” Ms. Goyer said. “People are less excited about going to live in a nursing facility or assisted living facility because of Covid-19.”
Whether you are a caregiver now, have a parent or spouse who may need help someday, or are thinking about your own health, it’s never too soon to start planning for the time when help is needed. This section will help you organize important documents, medical information and the home.
If there is any lesson from the pandemic, it’s that none of us knows what the future holds. We can be healthy today and face a dire health problem tomorrow. When I asked readers to tell me about their own caregiving experience and what they wish they had known ahead of time, among the hundreds of replies an overriding theme emerged: the importance of planning and getting organized — the sooner, the better. Here’s their advice:
Don’t put off the conversation. It’s never too soon to sit down with parents, siblings, children and friends to discuss long-term care plans. Use the 40-70 rule; by the time you are 40 or your loved one is 70, you should already be talking about it.
“Start to have those conversations when someone is pretty healthy,” advised Christina Irving, client services director for the Family Caregiver Alliance/National Center on Caregiving. “Start with the question, ‘What would happen if either one of us had an accident?’ If the caregiver can reflect on themselves, they can say, ‘These are the things we should all have in place.’ Try not to make it just about the older adult, because none of us knows. And know that you’re going to have to revisit that conversation. You’re not necessarily going to get the outcome you want in your first go-around.”
The Conversation Project is a website dedicated to helping families talk about these issues. You’ll find lots of helpful information and a conversation starter kit.
Get the paperwork done early. Perhaps the greatest gift you can give to your family is a binder of legal documents that will make sure everyone is prepared for an emergency. Two forms will get you started. Complete this care plan worksheet created by the Centers for Disease Control and Prevention. This AARP worksheet is a guide to everything you need (medical, insurance, financial and end-of-life information) and answers the most important question for your loved ones: “Where is it kept?” Many of the documents you need vary by state and require witnesses and possibly a notary. They all require some thoughtful contemplation on how you want to be cared for during an illness or at the end of life. Here are the four most-important documents you need:
1. Advance Health Care Directive (also called Living Will, Durable Power of Attorney for Healthcare)
2. Portable Medical Orders
3. Durable Power of Attorney for Finance
Don’t forget Your Online Accounts and Passwords. One in three caregivers say a major challenge is locating passwords and accounts. according to the AARP. About half of caregivers say they don’t have legal authorization or passwords to access online accounts like utility accounts, banks, credit cards and social media accounts. Without a digital estate plan, your caregiver — even if it’s your spouse — may need to go to court to access your accounts. (Because couples often divide household duties, a partner may not be aware of the passwords set up on their own utility account.) Think about what you want your online friends (Twitter, Facebook, Instagram) to know if you should become incapacitated. Learn more about creating a digital estate plan from this AARP guide.
Experienced caregivers say it’s essential to create a binder for medical information that you can carry with you to doctors; appointments. You’ll want to keep track of various health providers, insurance information and reimbursement, medications and notes about major health events and patient concerns. Caregiver.org created this medication record form to help. Consider adding this Crisis Symptom Reporting Guide from the Department of Veterans Affairs to help you think clearly in a crisis. If you like the idea of binders to stay organized, the new book The Paper Solution has a lot of good information about organizing paperwork.
But if a binder is too old school for you, digital organization might be a better option. There are a number of apps designed to help caregivers stay on top of things.
Online Organizers: You can use online services like Google Drive or Dropbox to create a virtual binder of medical and financial documents. You can create individual files for multiple family members.
Medication Reminders: Carezone is a free app that allows you to scan medications, set reminders, track appointments and order refills, all in one place. Medisafe is an app for medication scheduling and reminders, and will send alerts to a caregiver if a medication is missed.
Group Apps: CaringBridge and Caring Village allow you to connect with groups of people to coordinate a loved one’s care. CaringBridge users create a personal website to share health updates, photos and more with a group of family members or friends. Caring Village allows a smaller, trusted group of people to coordinate caregiving. It includes schedules, medications lists, important documents and a secure group messaging function. If you have a large group of friends and volunteers who want to help with care, LotsaHelpingHands is a great tool for coordinating things like transportation, meal delivery and respite care.
Monitoring: Amazon’s Alexa device now offers Care Hub to allow people to monitor the activity of a senior or other person in their care, create reminders to take medications and “drop in” by video. Another app, BrioCare, can create a daily care routine for a loved one, including medication reminders, exercise breaks and ways to connect with friends. And eCare21 provides round-the-clock monitoring through a smartwatch or a wearable device like a Fitbit. The things you can track include glucose level, heart rate, medication, activity, weight and sleep.
Most people become caregivers to ensure that their loved one can stay in their own home or a family home or because they can’t afford an assisted living facility. But over time, it may become clear that modifications are needed. Stair and bath rails, high toilet seats and better lighting could become necessary, and area rugs or clutter that could cause falls may need to be removed. Here are some resources for home safety.
Home safety assessments: In some cases Medicare will pay for a home safety assessment if recommended by a health care provider. The Senior Living website has a good explainer on how to convert a house into a senior-friendly home. You can find an occupational therapist or an aging in place specialist (certified by the National Association of Homebuilders) to assess your home. Read about it in this AARP guide or visit the NAHB website.
Home safety checklists: The U.S. Consumer Products Commission created a home safety checklist to help you identify potential hazards in the home. The North Carolina State Extension has a housing safety checklist for older people, or you can read the AARP Home Fit Guide.
Preventing falls: The National Council on Aging has a list of resources to prevent falls and can help you find a fall prevention program in your area. Watch a 20-minute video on how to make your home fall-free. The AARP has a short video on preparing your home for safe mobility.
While your goal may be to keep your loved one in a home setting, you still should investigate options for assisted living or nursing home care. Many of these facilities have waiting lists, so start your research early, just to be prepared.
For many caregivers, the most difficult parts of the job are navigating the health system to find answers to questions about care and getting their loved one the resources and support they need. Here are some places to start.
The life of the caregiver is growing increasingly complicated. Doctors and nurses are spending less time with patients in the hospital and shifting more of the health care burden to the home. Caregivers are being asked to perform increasingly complex medical tasks, like dealing with feeding tubes or catheters or taking care of wounds. At the same time, caregivers must track medications, navigate care among several providers and still find time to work another job and attend to their own families.
But help is out there. A number of organizations focused on aging have websites packed with information. It’s likely there are care programs you didn’t know you needed — such as transportation help, home care services, adult day care and legal guidance, to name a few — so it’s worth taking the time to explore these offerings.
If your loved one will spend time in the hospital, take advantage of the hospital social worker or the discharge planner. They are there to help you plan for life after the hospital, assisting you with home care options, instructions and support. The CARE Act, passed in 41 states and the District of Columbia, requires hospitals to provide adequate training in medical tasks to family caregivers before patients are discharged. Find your state and download a copy of a CARE card to remind you to demand proper instruction before your loved one is discharged.
Caregivers also need to find their area agency on aging, a public or private nonprofit agency designated by the state to address the needs of older people in that region. The agency acts as a clearinghouse of information about local resources, ranging from Meals on Wheels and disability services to legal advice and insurance counseling. In addition, these are essential websites for caregivers.
The Eldercare Locator: Use this online locator from the U.S. Administration for Community Living to find your agency on aging as well as other local resources. Additional information is available in the Helpful Links section and at the ACL web page.
Caregiver Support for Veterans: Even if you don’t think your loved one is a veteran, it’s worth double checking. Many people served short stints in the military and moved on to other careers, but they are still eligible for veterans’ benefits. The VA Caregiver Support page has a place to apply for comprehensive caregiver assistance, a link to a state-by-state directory of caregiver support, a list of home and community-based services and much more.
AARP: The group’s family caregiving page is a treasure trove of information. You’ll find answers to every possible question, including an essential Prepare to Care planning guide as well as a series of instructional videos to help family caregivers learn skills, including caring for wounds, operating medical equipment and offering special diets. The AARP Family Caregivers Discussion Group has more than 4,000 members offering both practical and moral support.
Caring.com: This useful website is a clearinghouse for articles, expert advice and resources related to aging and caregiving. There’s a caregiver resource center and search tools to find living options including assisted living and home care resources.
The Family Caregiver Alliance: Use the navigator to click on your state and find public, nonprofit, and private programs and services to help caregivers and their loved ones.
The National Alliance for Caregiving: You’ll find a number of resources here, including links to Next Step in Care, which provides helpful guides, and Lotsa Helping Hands, which helps coordinate meals and support and several other resources.
Support Groups: Some of the best advice for caregivers will come from other caregivers. Use a search engine or social media site to search for the type of support group you need. If you can think of it, it’s probably out there. The AARP Family Caregivers Discussion Group has 4,000-plus members offering both practical and moral support. The Well Spouse Association coordinates a national network of support groups, and offers “respite” weekends and an online chat resource. LGBT Community Support: Caregiving for our Families and Friends is an email-based support group for lesbian, gay, bisexual and transgender caregivers. SeniorsMatter.com has compiled a useful list of Facebook support groups. You can find groups focused on your specific family situation, including the Working Daughter and even Caregivers of Narcissistic Family Members. SmartPatients.com offers links to support groups focused on more than 160 topics, including support groups for caregivers dealing with specific health issues like cancer or dementia.
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One of the biggest challenges for caregivers is finding time to take care of themselves.
Caregivers are among the most-stressed individuals in the country, according to Stress in America, an annual report of the American Psychological Association. Caregivers “report higher levels of stress, poorer health and a greater tendency to engage in unhealthy behaviors to alleviate that stress than the population at large,” the report said.
The Stress in America survey asked caregivers and everybody else to rank their stress on a scale of 1 to 10, with 1 being very little and 10 being a great deal. The average American rated their stress at 5.2. For caregivers, the number was 6.5.
Caregivers are more likely than the general public to have a chronic illness and to rate their own health as “fair” or “poor” Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be at risk for serious illnesses. An Ohio State University study found that the chronic stress experienced by caregivers for loved ones with Alzheimer’s disease may shorten the caregivers’ lives by as much as four to eight years.
Caregiver burnout is a form of mental and physical exhaustion. Caring.com offers a guide to coping with caregiver burnout, including this eight-question quiz.
1. Have you lost pleasure from things you once enjoyed?
2. Have friends and family expressed concern about your well-being?
3. Are you getting negative feedback at work?
4. Are you having problems with your spouse?
5. Do you experience intense and recurrent feelings of anger, sadness, worry or fear?
6. Are you having difficulty concentrating?
7. Have you had trouble sleeping, weight changes or other health problems?
8. Do you use a substance to cope with painful feelings?
Every caregiver knows that self-care essential. But finding time for it is easier said than done. The basics of self-care include:
If you leave it to chance, self-care won’t happen. That’s why it’s important to design a family respite plan that identifies your needs and wishes, as well as the types of help other people can provide. Call a family meeting or call your friends. Tell everyone what you need — don’t expect them to automatically know how to help. AARP has a guide for designing a respite care plan.
Self-care also means taking small breaks throughout your day, and adopting a regular mindfulness practice to help you manage the stress of caregiving. Here are some ideas:
A Caregiver’s Journey to Self Enrichment: This thoughtful journal was created by the Caregiver Support Program. It asks the caregiver to take time for themselves reflecting on childhood, adult memories and goals and dreams, and includes a number of restorative exercises. The V.A. Caregiver Support page offers a number of tips and tools including a “Caring for Oneself” section.
Coping With Your Emotions: The Family Caregiver Alliance has created a list of the emotions you might experience — ambivalence, anger, boredom and even disgust — that might be hard to admit. The guide helps you acknowledge these feelings and outlines how to cope when they arise.
Meditations for Caregivers: You can find five free guided meditation videos just for caregivers on the AARP website, as well as a link to the AARP’s book, “Meditations for Caregivers.” Or try the Well Meditation Guide.
Healing Breaths: Controlled breathing exercises are suited to the life of a caregiver, who will experience highs and lows throughout their day. For those moments when you need to calm yourself, but can’t take a real break, controlled breathing provides an ideal escape. Try these three breathing exercises: coherent breathing, stress relief and energizing HA breath.
Caregivers struggle to incorporate exercise and stress relief into their day. Here are some suggested exercises that require only a short time commitment.
Looking for a way to lower your stress levels? Yoga has been proven to help reduce stress. Whether you are at home, work or somewhere in between, yoga is always here to help you relax.
Older men and women who took a fresh look at the objects and vistas around them felt more upbeat and hopeful.
Caregivers often face lost wages and added expenses. The C.D.C. has reported that more than one in four caregivers of adults (27 percent) reported a moderate to high degree of financial hardship as a result of caregiving.
Caregivers must assess what funds are available from insurance benefits and savings to care for their loved one. They also have to consider how the time they spend caregiving will affect their personal finances. Start with the guide What Every Caregiver Needs to Know About Money, from CareGiver.org. It includes questions to ask about the financial implications of being a caregiver, and explains how family members can sometimes be compensated for the work they do. The Women’s Institute for a Secure Retirement (WISER) notes that becoming a caregiver can affect both short- and long-term financial security. Read Wiser’s 8 Financial Steps for Caregivers.
Whether you’re taking care of someone with Covid-19 or you are a caregiver trying to keep yourself and a vulnerable person safe, caregiving during the pandemic presents special challenges.
Any infectious illness, whether it’s Covid-19, influenza or norovirus, presents a special challenge for caregivers. Not only do you worry about protecting your patient from outside germs, but you must also try to protect yourself and stay well so you are able to care for your patient. Here are some basic precautions caregivers can take to reduce risk for everyone in the home.
Caring for someone with mild to moderate symptoms of the coronavirus is similar to caring for someone with the flu. Give them supportive care, fluids, soups and Tylenol, and have them take their temperature regularly. Ideally you will have a pulse oximeter on hand to allow them to frequently check their blood oxygen levels. Pay close attention to how they are feeling, particularly on days five to 10 of the illness, when some people can take a sudden turn for the worse.
You should also take a number of additional precautions to protect the caregiver and other members of the household.
Isolate: If possible, confine the patient to a separate bedroom and separate bathroom, with no or minimal contact with the rest of the household (including pets). Leave food trays just inside the room for the patient to retrieve when you leave. Use precautions (gloves, hand washing and mask wearing) when collecting and washing food trays and dishes.
Use masks: Both patient and caregiver should wear a mask when the caregiver is in the room. Windows should stay open, if possible, particularly when the caregiver enters the room.
Cleaning surfaces: To avoid unnecessary contact with the ill person, it’s best to let them clean up after themselves (unless it’s a small child, an older person or a person with disabilities). The C.D.C. recommends providing cleaning supplies — tissues, paper towels and disinfectants — for an ill person’s bedroom and bathroom. If family members must share a bathroom, the patient should do their best to clean and disinfect it after each use. Caregivers should wait as long as is practical after use by an ill person, and clean and disinfect high-touch surfaces, wearing gloves and being sure to wash hands. Read the C.D.C.’s guidelines on cleaning and disinfecting a home shared with someone with a suspected case of the coronavirus.
Laundry and garbage: Always wear a mask in the sick person’s room even if they are not there or have recovered. Coronavirus particles can last as long as three days on various surfaces, and can be shaken loose when you pick up clothes, change bedding or pick up soiled tissues. (Some viruses, such as the norovirus, can last even longer on surfaces.)
Tara Parker-Pope is the founding editor of Well, an award-winning consumer health site with news and features to help readers live well every day.