What is a Caregiver?

Outside the working world, those most prone to burnout are caregivers. Caregivers are unpaid workers who devote themselves to the care of a chronically ill or disabled person. The constant stress of caregiving can lead to burnout and damage both physical and mental help. If you are helping your family member or friend through treatment, you are a caregiver. This may mean helping with daily activities such as going to the doctor or making meals. It could also mean coordinating services and care. Or it may be giving emotional and spiritual support.

Over 50 million people in the United States alone provide care for aging and ailing parents. 

We define a caregiver as the person who most often helps the person and is not paid to do so. Professional care providers are paid to give care. They tend to have more limited roles and are not discussed in detail here. Caregivers may be partners, family members, or close friends. Most often, they’re not trained for the caregiver job. Many times, they’re the lifeline of the person who is ill.

Caregivers have many roles. These roles change as the patient’s needs change during and after treatment. Today a lot of care is done in outpatient treatment centers and doctors’ offices. This means that sicker people are being cared for at home.

As a caregiver, you have a huge influence – both positive and negative – on how the cancer patient deals with their illness. Your encouragement can help the patient stick with a demanding treatment plan and take other steps to get well, like eating healthy meals or getting enough rest.

A caregiver is a person who devotes themselves to help another person in need. Typically, the patients who require care have conditions such as cancer or dementia that prevent them from performing activities of daily living.

Caregivers provide support by doing grocery shopping and cooking, paying bills, giving medicine, assisting with bathing, using the toilet, dressing, and eating.

Caregivers are part of the team

The caregiver is part of a care team made up of the patient, other family and friends, and the medical staff. As a caregiver, you may find yourself working closely with the care team, doing things like:

• Giving drugs
• Managing side effects
• Reporting problems
• Trying to keep other family members and friends informed of what’s happening
• Helping to decide whether a treatment is working

As part of the team, you’ll help coordinate the patient’s care. Caregivers often have to keep track of prescriptions, know which tests are to be done and make sure all involved doctors know what’s going on. They often find themselves preventing mix-ups and keeping track of paperwork.

A good caregiver is a vital health care resource. In many cases, the caregiver is the one person who knows everything that’s going on with the patient. Don’t be afraid to ask questions and take notes during doctor visits. Learn who the members of the care team are and know how to contact them. Getting the right support and information can help both you and your loved one with cancer.

Caregivers are problem solvers

The person with the disease faces many new challenges. As the caregiver, you can help the patient deal with these challenges and get through any problems that come up.

For example, suppose the patient’s white blood counts drop, they develop a fever, and as a result, need to be in the hospital. This can be very upsetting and may be seen as a setback by the family and the patient. The caregiver can:

• Help address their concerns by pointing out that the patient will need to be in the hospital for only a short time until antibiotic treatment has the infection under control.
• Make sure that the patient has everything they need while in the hospital, including doctor’s prescriptions for non-cancer related medicines taken at home, such as thyroid or blood pressure medicine.
• Call all the doctors involved in the patient’s care and tell them about the infection and that the patient is in the hospital.
• Check that arrangements have been made for the patient to stay on the antibiotics at home or as an outpatient after leaving the hospital. If daily visits to the outpatient clinic for IV (intravenous) antibiotics are needed, the caregiver can coordinate people to help the patient get to the clinic or hospital and back each day.

These kinds of tasks may be too much for the patient to tackle while fighting infection. This kind of help is valuable. It’s a reassuring sign for the patient that this short-term problem can be managed and solved.

Caregivers take care of day-to-day tasks

There are other day-to-day tasks a caregiver might do. Here are a few things caregivers might help the person with cancer do, or in some cases even do for them:

• Shop for and prepare food
• Eat
• Take medicines
• Bathe, groom, and dress
• Use the bathroom
• Clean house and do laundry
• Pay bills
• Find emotional support
• Get to and from doctor’s appointments, tests, and treatments
• Manage medical problems at home
• Coordinate cancer care
• Decide when to seek health care or see a doctor for new problems

All of this work costs caregivers time and money. There may also be a cost to the caregiver’s health and well-being, but often the caregiver just keeps doing what needs to be done and may suffer in silence.

You may be glad to put the well-being of the person with the illness above your own well-being. And your love for this person may give you the energy and drive your need to help them through this difficult time. Still, no matter how you feel about it, caregiving is a hard job! And many caregivers are there for their loved one 24 hours a day for months or even years.

Caregivers involve the patient

Good communication with the person you are caring for is the most important part of your role. It may be hard for the patient to take part in daily planning and decision-making because they’re dealing with the physical, emotional, and social effects of illness and treatment. Your job is to involve the patient as much as possible, so they know they’re doing their part to get better. Here are some things you can try to do to keep the patient involved:

• Help them live as normal a life as possible. To do this you might start by helping them decide what activities are most important. They may need to put aside those that are less important in order to do the things enjoyed the most.
• Encourage them to share feelings and support their efforts to share. For instance, if they begin talking to you about their feelings about their illness, don’t change the subject. Listen and let them talk. You might want to share how you’re feeling, too.
• Let the patient know you’re available, but don’t press issues. For example, if they’re trying to do something, such as dress themselves – they might be struggling, but it’s important for them to be able to do this. You may want to do it for them but don’t. Let them decide when they need help.
• Remember that people communicate in different ways. Try sharing by writing or by using gestures, expressions, or touch. Sometimes, it may be really hard to say what you’re feeling, but a gesture such as holding hands might show how you feel.
• Take your cues from the person who is ill. Some people are very private while others will talk more about what they’re going through. Respect the person’s need to share or his need to remain quiet.
• Be realistic and flexible about what you hope to talk about and agree on. You may need or want to talk, only to find that the patient doesn’t want to do it at that time.
• Respect the need to be alone. Sometimes, we all need time alone – even you.

You might find that the person you’re caring for is acting different – angry, quiet and withdrawn, or just sad. If you think they aren’t talking to you because they want to spare your feelings, make sure they know that you are always open to listening, even about tough topics. If they keep acting very sad or withdrawn, you might want to talk to the cancer care team about what could be causing it and what can be done.

Long-distance caregiving

Caregiving at a distance can be even harder to do and can cost more, too. The cost of time, travel, phone calls, missed work, and out-of-pocket expenses are higher when the caregiver doesn’t live close to the person needing care. Sometimes paid “on-site” caregivers are needed, and this can be another large expense.

There is often increased stress and greater feelings of guilt with long-distance caregiving. You may worry, “What if something happens and I can’t get to them right away?” Or, “Who’s going to make sure they ______ (take their medicine, eat, don’t fall, etc.)?” And if you do have family living close to the person who is ill, you might feel guilty that the burden falls on them and you aren’t doing your share.

Along with this, there’s the guilt felt while you’re with the person with cancer: “Who’s going to ______ (pick up the kids from school, cook dinner, walk the dog, etc.) at home while I’m gone?”

You also may feel left out of decisions made by the person with cancer and those who do live nearby. But there are things you can do to help your loved one and take an active role in their care – even when you’re far away.

• When you visit the patient check the house for safety issues like cluttered walkways, loose rugs, or bad lighting. Maybe grab bars in the bathroom or a shower seat would be helpful. Help make improvements or arrange for someone else to do so.
• Is the house clean? Is the yard cared for? Is there food in the house? Arranging help for chores like these can be a big help to the person with cancer.
• Get in touch with people who live near the person who is ill. This may be other family members, friends, neighbors, or the doctor. Call them. And make sure they know how to reach you.
• Plan for a crisis. Who can you count on to check on your loved one any time, day or night?
• Keep a list of all the medicines and treatments the patient is getting (include doses and schedules), and update it regularly.
• Make sure the person who is ill can reach you and others who help with care. This might mean buying a cell phone for your loved one or arranging for a long distance plan on their landline phone. You can also program important numbers into their phones. This can serve as a phone number directory and help with speed dialing.
• Use a website that lets people sign up for different jobs or tasks, such as Lotsa Helping Hands. Then you can keep an eye on what’s needed and what’s being done.

Try to plan your visits. Once you get there you may be overwhelmed by everything that needs to be done, but having a plan keeps you focused and less stressed. Talk to the patient ahead of time about what’s needed and set clear goals for your visit. And don’t forget to visit! Remember to just spend time with them and do some activities together – things that you both enjoy.

If other family members are doing most of the hands-on work, you can step in for them to give them some time off. Maybe you can plan a visit so they can go on vacation or just take a much-needed break.

From a distance, it may be hard to feel that what you’re doing is enough or important. But sometimes the distant caregiver is the one who ties things together and keeps everything organized. You may be the one called because you know what to do or where to go for help when something is needed or a problem comes up.

Coping With Changing Roles:

Whether you’re younger or older, you may find yourself in a new role as a caregiver. You may have been an active part of someone’s life before, but perhaps now that they are a patient, the way you support them is different. It may be in a way in which you haven’t had much experience, or in a way that feels more intense than before. Even though caregiving may feel new to you now, many caregivers say that they learn more as they go through their loved one’s experience. Common situations that they describe:

• Patients may only feel comfortable with a spouse or partner taking care of them
• Caregivers with children struggle to take care of a parent too
• Parents may have a hard time accepting help from their adult children
• Caregivers find it hard to balance taking care of a loved one with job responsibilities
• Adult children with diseases may not want to rely on their parents for care
• Caregivers may have health problems themselves, making it physically and emotionally hard to take care of someone else

Whatever your roles are now, it’s very common to feel confused and stressed at this time. If you can, try to share your feelings with others or a join support group. Or you may choose to seek help from a counselor.

What is Caregiver Stress?

Giving care and support during this time can be a challenge. Many caregivers put their own needs and feelings aside to focus on the person with cancer. This can be hard to maintain for a long time, and it’s not good for your health. The stress can have both physical and psychological effects. If you don’t take care of yourself, you won’t be able to take care of others. It’s important for everyone that you give care to you.

Caregiver stress is the emotional and physical strain that caregiving causes and it may take many forms. Caregiver stress can cause depression and anxiety, and long-term medical issues. Caregivers can be more susceptible to illnesses, have slower wound healing, as well as be at a higher risk for mental decline.

Those suffering caregiver stress may feel:

• Frustrated and angry
• Guilty, because they do not feel the care they provide is good enough.
• Lonely because caregiving has impacted social life.
• Tired all the time.
• Overwhelmed
• Easily irritable or angered
• Constantly worried
• Physically ill, with frequent complaints like headaches, aches, and other problems
• Weaker immune system (poor ability to fight off illness)
• Sleep problems
• Slower healing of wounds
• Higher blood pressure
• Changes in appetite or weight
• Headaches
• Anxiety, depression, or other mood changes

Don’t Forget To Ask for Help

Many caregivers say that looking back, they took too much upon themselves. Or they wish they had asked for help from friends or family sooner. Take an honest look at what you can and can’t do. What things do you need or want to do yourself? What tasks can you turn over or share with people? Be willing to let go of things that others can help you do. Some examples may be:

• Helping with chores, such as cooking, cleaning, shopping, or yard work
• Don’t be afraid to ask family members for financial help if necessary.
• Taking care of the kids or picking them up from school or activities
• Driving your loved one to appointments or picking up medicines
• Being the contact person to keep others updated
• Keep a running list of ways others can help and when help is offered, give specific manners in which they can help.
• Similarly, when people offer to help, say “YES!”.  Let them take care of you if you are not able to let them care for your loved one.

Accepting help from others isn’t always easy. But remember that getting help for yourself can also help your loved one—you may stay healthier, your loved one may feel less guilty about all the things that you’re doing, some of your helpers may offer useful skills and have extra time to give you.

Be Prepared for Some People Not to Help

When someone has a serious illness, friends and family often reach out to help. And sometimes people you don’t know very well also want to give you a hand. But it’s important to realize that there are others who may not be able to help you. You might wonder why someone wouldn’t offer to help you or your family when you’re dealing with so much. Some common reasons are:

• Some people may be coping with their own problems
• Some may not have the time
• They are afraid of the illness or may have already had a bad experience with it. They don’t want to get involved and feel pain all over again
• Some people believe it’s best to keep a distance when people are struggling
• Sometimes people don’t realize how hard things really are for you. Or they don’t understand that you need help unless you ask them for it directly
• Some people feel awkward because they don’t know how to show they care

If someone isn’t giving you the help you need, you may want to talk to them and explain your needs. Or you can just let it go. But if the relationship is important, you may want to tell the person how you feel. This can help prevent resentment or stress from building up. These feelings could hurt your relationship in the long run.

How To Prevent or Relieve Caregiver Stress:

All family caregivers need support. But you may feel that your needs aren’t important right now since you’re not the cancer patient. Or that there’s no time left for yourself. You may be so used to taking care of someone else that it’s hard for you to change focus. But caring for your own needs, hopes, and desires can give you the strength you need to carry on.

Make Time for Yourself

• Find Time to Relax. Take at least 15-30 minutes each day to do something for yourself. For example, try to make time for a nap, exercise, yard work, a hobby, watching tv or a movie, or whatever you find relaxing. Do gentle exercises, such as stretching or yoga. Or, take deep breaths or just sit still for a minute.
• Don’t Neglect Your Personal Life. Cut back on personal activities, but do not cut them out entirely. For example, look for easy ways to connect with friends.
• Keep Up Your Routine. If you can, try to keep doing some of your regular activities. If you don’t, studies show that it can increase the stress you feel. You may have to do things at a different time of day or for less time than you normally would, but try to still do them.
• Ask for Help. Find larger chunks of “off-duty” time by asking for help. Find things others can do or arrange for you, such as appointments or errands.

Understand your Feelings

Giving yourself an outlet for your own thoughts and feelings is important. Think about what would help lift your spirits. Would talking with others help ease your load? Or would you rather have quiet time by yourself? Maybe you need both, depending on what’s going on in your life. It’s helpful for you and others to know what you need.

Identify things that may be changed and those which cannot.

Don’t dismiss feelings as “just stress” as caregiver stress can cause future problems down the line.

It is okay to grieve the situation; you’ve lost something, too.

You may also be able to find some comfort by reading the emotions section of our website.

If you’d like more information, please visit vicarious trauma, caregivers, and burnout.

Join a Support Group

Support groups can meet in person, by phone, or online. They may help you gain new insights into what is happening, get ideas about how to cope, and help you know that you’re not alone. In a support group, people may talk about their feelings, trade advice, and try to help others who are dealing with the same kinds of issues. Some people like to go and just listen. And others prefer not to join support groups at all. Some people aren’t comfortable with this kind of sharing.

If you can’t find a group in your area, try a support group online. Some caregivers say websites with support groups have helped them a lot.

Ask the doctors office if they have any ideas for community support resources.

Learn More about The Illness

Sometimes understanding your cancer patient’s medical situation can make you feel more confident and in control. For example, you may want to know more about his stage of cancer. It may help you to know what to expect during treatment, such as the tests and procedures that will be done, as well as the side effects that will result.

See if your local hospital has classes to teach caregivers to cope with the demands of caregiving for a person with a specific illness.

Be open to assistive and adaptive technologies that may help your loved one regain some independence.

Educate yourself about your loved one’s condition, and talk with your loved one’s medical team.

Talk to Others about What You’re Going Through

Studies show that talking with other people about what you’re dealing with is very important to most caregivers. It’s especially helpful when you feel overwhelmed or when you want to say things that you can’t say to your loved one. Try to find someone you can really open up to about your feelings or fears.

Stay in touch with family and friends.

Write a post for Band Back Together.  Connect with a greater community, and know that “we are none of us alone”.

You may want to talk with someone outside your inner circle. Some caregivers find it helpful to talk to a counselor, such as a social worker, psychologist, or leader in their faith or spiritual community. These types of experts may be able to help you talk about things that you don’t feel you can talk about with friends or family. They can also help you find ways to express your feelings and learn ways to cope that you hadn’t thought of before.

Connect with Your Loved One

Illness may bring you and your loved one closer together than ever before. Often people become closer as they face challenges together. If you can, take time to share special moments with one another. Try to gain strength from all you are going through together, and what you have dealt with so far. This may help you move toward the future with a positive outlook and feelings of hope.

Write in a Journal

Research shows that writing or journaling can help relieve negative thoughts and feelings. And it may actually help improve your own health. You might write about your most stressful experiences. Or you may want to express your deepest thoughts and feelings. You can also write about things that make you feel good, such as a pretty day or a kind coworker or friend.

Look for the Positive

It can be hard finding positive moments when you’re busy caregiving. It also can be hard to adjust to your role as a caregiver. Caregivers say that looking for the good things in life and feeling gratitude help them feel better. And know that it’s okay to laugh, even when your loved one is in treatment. In fact, it’s healthy. Laughter releases tension and makes you feel better. Keeping your sense of humor in trying times is a good coping skill.

Be Thankful

You may feel thankful that you can be there for your loved one. You may be glad for a chance to do something positive and give to another person in a way you never knew you could. Some caregivers feel that they’ve been given the chance to build or strengthen a relationship. This doesn’t mean that caregiving is easy or stress-free. But finding meaning in caregiving can make it easier to manage.

Day To Day

Find out -and use – caregiving resources within your community.

Stand up for your rights as a caregiver.  You are a caregiver, not a doormat or a servant.

Set realistic goals and break larger tasks down to smaller steps.

Remember, there are no “perfect caregivers.”

Say no to any requests that may be draining.

Listen to your gut; trust your instincts.

Caring for Your Body

You may find yourself so busy and concerned about your loved one that you don’t pay attention to your own physical health. But it’s very important that you take care of your health, too. Doing so will give you the strength to help others. It’s important to:

• Stay up-to-date with your medical needs Keep up with your own checkups, screenings, and other appointments.
• Caregiving is a job – you’ve earned a break. Give yourself a respite.
• Watch for signs of depression or anxiety Stress can cause many different feelings or body changes. But if they last for more than two weeks, talk to your doctor.
• Take your medicine as prescribed Ask your doctor to give you a large prescription to save trips to the pharmacy. Find out if your grocery store or pharmacy delivers.
• Try to eat healthy meals Eating well will help you keep up your strength. If your loved one is in the hospital or has long doctor’s appointments, bring easy-to-prepare food from home. For example, sandwiches, salads, or packaged foods and canned meats fit easily into a lunch container.
• Get enough rest Listening to soft music or doing breathing exercises may help you fall asleep. Short naps can energize you if you aren’t getting enough sleep. Be sure to talk with your doctor if lack of sleep becomes an ongoing problem.
• Exercise Walking, swimming, running, or bike riding are only a few ways to get your body moving. Any kind of exercise (including working in the garden, cleaning, mowing, or climbing stairs) can help you keep your body healthy. Finding at least 15-30 minutes a day to exercise may make you feel better and help manage your stress.

New stresses and daily demands often add to any health problems caregivers already have. And if you are sick or have an injury that requires you to be careful, it’s even more important that you take care of yourself. Here are some changes caregivers often have:

How Do I Take A Break?

In-home Respite Care. Someone will come into your house to provide care for your loved one while you take a break. This can range from companionship to nursing services.

Adult Daycare Centers – many local churches or community centers provide daycare centers for the elderly and children. During the day, these groups meet together and share activities.

Short-Term Nursing Homes can be used for occasional nursing care while you are out of town for a couple of weeks.

Day Hospitals – some hospitals provide medical care for patients during the daytime and the patient returns home at night.

Additional Caregiver Resources:

Administration on Aging – information about age and aging including links to local programs to aid elders and their caregivers.

US National Respite Locator – helps parents, family caregivers, and professionals find respite services in their state and local area to match their specific needs

National Family Caregivers Association – educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age

Eldercare Locator is a nationwide service that connects older Americans and their caregivers with information on senior services. From the US Administration on Aging.

Family Caregiver Alliance – links and information aimed specifically at caregivers.

Centers for Medicare and Medicaid Services – comprehensive lists of services available put together by the US Department of Health and Human Services.

American Association of Retired Persons (AARP) Foundation is the charitable division of the AARP. It provides information on how to set up a caregiving plan for your loved one.

Page last audited 2/2020