Keeping Healthy

Caregiver Burnout and Stress

What is caregiver stress and burnout?
WARNING SIGNS
What causes caregiver stess and burnout?
How can I deal with my stress and burnout?
When should I talk to my doctor?

 

What is caregiver stress and burnout?

Taking care of another person can be stressful. Everyone has some stress, but too much can harm your health, relationships, and enjoyment of life. Caregiver stress happens when you don’t have time to do all that’s asked or expected of you. You may feel like no matter what you do it’s not enough, or like everything is on your shoulders. Caregiver burnout happens when you are in a state of stress or distress for a prolonged period of time. Caregiver stress and burnout can affect your mood, and make you feel tense, angry, anxious, depressed, irritable, frustrated, or fearful. It can make you feel out of control, unable to focus, unsatisfied with work, or lonely. Caregiver stress and burnout can also cause physical symptoms like sleep problems, muscle tension (back, shoulder, or neck pain), headaches, stomach problems, weight gain or loss, fatigue, chest pain, heart problems, hair loss, skin problems, or a colds and infections. It can lead you to abuse alcohol or other substances.

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WARNING SIGNS

Get help from a healthcare provider if you are:

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What causes caregiver stress and burnout?

These things can lead to caregiver stress or make it worse:

  • Fear & uncertainty: Cancer treatment isn’t certain. It’s hard not to worry about the person with cancer, and the future.
  • Shifting roles: Caregiving can change relationships. This isn’t bad. But, it can be upsetting when someone who has been a source of strength is suddenly vulnerable, or when you find yourself making decisions somebody else used to make.
  • Too much to do: As a caregiver, you may feel overwhelmed by all you have to do, and as though everything is falling on your shoulders.
  • Financial pressure: The costs of cancer care can be a source of stress. Also, you and the patient may be unable to work full-time—or at all.
  • Loneliness & isolation: Caregiving takes time. You may find you don’t have time to spend with friends, take part in outside activities, or pursue hobbies.
  • Little time alone: Everyone needs time for themselves. This can be difficult to get when you are caring for someone with cancer.
  • Constant demands: Being on call around-the-clock can be especially hard.
  • Guilt: You may feel bad that you can’t give more, or you may feel that you are short-changing other family members and friends.

While all these things are common among caregivers, there are things your can do to lessen your stress.

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How can I deal with my stress and burnout?

Here are some tips for dealing with your caregiver stress or burnout:

  • Recognize the warning signs of stress early. Never dismiss your feelings as "just stress."
  • Ask for help with caregiving and accept it! Make a list of everyone who may be able to help you out. Make a list of the things that can be done by other people like running errands. Then, ask others to do things for you.
  • Talk to someone—a friend, counselor, family member, or clergy member.
  • Talk to a professional if your stress is becoming a problem.
  • Take care of yourself. Eat well, drink enough water and other fluids, and try to get some exercise every day, even if it’s just a walk around the neighborhood. Get regular medical and dental checkup.
  • Identify sources of stress, and write them down. Think about the things you can improve. Try prayer and/or meditation to accept the things you can’t change.
  • Give yourself permission to grieve, cry and express your feelings.
  • Try meditation, yoga, music, or deep breathing to relax.
  • Join a support group like My Cancer Circle, which is especially for caregivers of people with cancer.
  • Focus on the positive. At the end of the day, make a list of the good things that have happened. Give yourself credit for what you’re doing. Forgive yourself when you don’t do things as well as you want. Remember that you are doing the best that you can.
  • Take time for yourself. Ask a friend or family member to stay with the patient or hire someone to give you time off to shop, go to a movie, or visit a friend.
  • Learn to say "no" when someone asks you to do something that you don’t want to do, and/or that may be draining (like hosting a holiday meal).
  • Educate yourself. Get information from your doctor, the Internet, local library, book stores, or local support groups. This may help with feelings of uncertainty. You’ll find a list of valuable resources here.
  • Find someone who can help you understand all of the medical information. This could be a healthcare professional, someone in a support group, or someone who has been through the same thing. Keep a list of questions to discuss with the patient’s healthcare providers.
  • Make a list of priorities for each day. Set realistic goals.
  • Write about what you’re going through in a journal. This is especially helpful for feelings that you don’t want to share.
  • Try to plan for legal and financial matters. Planning now will lessen stress later. Involve other family members in these activities and decisions.

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When should I talk to my doctor?

Call your doctor or 911 immediately if you feel like you could hurt yourself or someone else.

Also, talk to your doctor if you are:

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Next learn about…

Getting help with caregiving
Avoiding substance abuse
Eating well
Getting exercise

 

Article Category: 
Caregiver burnout and stress
Article Topics: 
Coping Emotionally
Keeping Healthy

Getting Caregiver Help

Why is it important to ask for and accept caregiver help?
How can others help me with caregiving?
When and how do I ask for caregiver help?

 

 

Why is it important to ask for and accept caregiver help?

Caring for someone with cancer can be hard. As a caregiver, you are at increased risk of emotional, mental, and physical problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting caregiver help is important—for both for you and the person you are caring for.  

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How can others help me with caregiving?

There are lots of ways people can help caregivers. Ask them to:

Emotional support

  • Spend time with the patient so you have time to take care of yourself.
  • Give you a chance to talk through any feelings you have of anger, anxiety, sadness, fatigue, fear, and loneliness.  
  • Help you find help if you’re struggling with stress, overload, substance abuse or other issues.
  • Spend time with your family, and get you out of the house (if possible).
  • Have a positive attitude. It is catching!

Daily chores & activities

  • Shop for groceries, medications and other things.
  • Prepare meals for your family or help you plan meals.
  • Keep track of the patient’s medications and refills.
  • Help with yard work, dishes, laundry and other household chores
  • Help with transportation, including driving or organizing rides.
  • Walk or feed your pet.
  • Exercise with you—even if it’s just a short walk.
  • Help sort and pay bills.

Communications

Money

  • Help with insurance, including figuring out coverage, getting any needed pre-approvals for treatment, keeping track of payments, reimbursement and communications.
  • Research any prescription assistance and other aid programs.

Other

  • Help you research treatment options and understand what to expect.
  • Prepare a travel pack for the patient to take to treatment.
  • Make sure the patient’s home is safe.

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When and how do I ask for caregiver help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan.

Start by asking the person you’re taking care of to help you make a list of friends, family and anyone else who might lend a hand. Don’t overlook people you may not know well. People at your church, school or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you don’t end up needing their help, it will be good to know it’s there just in case.

Remember that many people do want to help, but don’t know what they can do. Tell them exactly what you’d like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

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Next learn about…

Making a caregiving plan
Talking with family & friends
Family meetings

Article Category: 
Keeping others involved in caregiving
Article Topics: 
Caring from Afar
Coping Emotionally
Keeping Healthy
Working Together
Practical Matters

Making a Caregiving Plan

What is a Caregiving Plan?
How do we make a Caregiving Plan?
What do we need to think about when making a Caregiving Plan?

 

 

What is a Caregiving Plan?

A Caregiving Plan lays out what needs to be done to manage the health and well-being of the patient. Unlike the doctor’s “plan of care,” the Caregiving Plan addresses mostly non-medical issues. A Caregiving Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver stress and overload.

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How do we make a Caregiving Plan?

To make a Caregiving Plan:

  1. Prepare
    Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable.
  2. Pull your team together
    Make a list of everyone who wants to help, including family members, close friends, health professionals, home care workers and others in the community.
  3. Take stock of the situation
    See the section below on areas you need to think about. Remember that the level of care needed can change. The person with cancer may only need help for brief periods of time like after surgery or chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes.
  4. Have a family meeting
    Learn more about planning a family meeting.
  5. Make the Plan
    Once you have put together your team, and considered the patient’s needs, it is time to sit down with all the players and put your Caregiving Plan together. The written Plan should include:
    • Contact information for all the patient’s healthcare providers
    • Contact information for the caregiving team
    • A caregiving schedule
    • A list of assigned tasks (for example, “Laundry: Rebecca, Tuesday evenings”)
    • A list of the patient's medications and instructions
    • Other important medical information
    • Instructions for what to do in an emergency
  6. Take action
    Make sure everyone has a copy of the Plan. Then check-in with each other regularly to make sure things are getting done. The care team should assign a point person for each area of care. This doesn’t mean that person has to do everything in that area—just that he or she is responsible for seeing to it that those tasks are done. As things change, be sure to update the Plan.

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What do we need to think about when making a Caregiving Plan?

You’ll want to do look at how the patient is doing in these areas:

Physical health & medication

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters or other medical equipment? Does he or she have other diseases that need to be managed like diabetes, high blood pressure, arthritis or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

Mental health

Does the patient have any mental health issues like depression, anxiety or psychosis? Should he or she be seen by a mental healthcare professional?

Everyday activities

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortable? Can he or she dress, bathe, shave, brush teeth, wash hair, use a toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Finances

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered?

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Do the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services?

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Next learn about…

Transportation
Medication management
Emergency preparedness
Home safety

Article Category: 
Keeping others involved in caregiving
Article Topics: 
Caring from Afar
Coping Emotionally
Keeping Healthy
Working Together
Practical Matters

Avoiding Substance Abuse

What is substance abuse?
What can I do to avoid substance abuse?
What can I do if I have a problem with substance abuse?
How can I talk to others about substance abuse problems?
Where can I get more information on substance abuse?

 

What is substance abuse?

Substance abuse is the overuse of alcohol, illegal drugs, prescription drugs, or over-the-counter medications. The line between use and abuse is not always clear. A person has to decide where the line is for him or herself.

Substance abuse may feel like a loss of control, an inability to stop using a substance once you start, a dependence on the substance, and/or cravings for it. You may have a strong urge to which you cannot "Just say no." You may find you need more and more of the substance to getan affect. And, if you stop using it, you may experience nausea, sweating, shaking, vomiting, and anxiety.

Caregivers tend to have higher levels of stress, anger, anxiety, depression, fatigue, loneliness, sleep problems, and fear. This puts you at greater risk of mental and physical health problems, including substance abuse.

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What can I do to avoid substance abuse?

To prevent substance abuse:

What can I do if I have a problem with substance abuse?

To get help with substance abuse:

  • Admit the problem.
  • Talk openly with your doctor.
  • Call your local Alcoholics Anonymous (AA) hotline or go to an AA meeting.
  • Call the National Drug & Alcohol Treatment Hotline at 800-662-HELP.

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How can I talk to others about substance abuse problems?

Here are some ideas for talking with family:

  • Be open about how caregiving is affecting you. Talk about your feelings.
  • Be honest if you’re worried about how you’re using alcohol and/or other substances. Talk about how it’s affecting you.
  • Ask your family how it’s affecting them.
  • Ask your family to help you find help.

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Where can I get more information on substance abuse?

Here are some helpful websites:

Next learn about…

Getting help with caregiving
Eating well
Getting exercise
Staying healthy

Article Category: 
Keeping yourself healthy
Article Topics: 
Coping Emotionally
Keeping Healthy

Eating Well

Why is it important to pay attention to my eating now?
How can I eat better?
Where can I get more information on eating well?

 

 

Why is it important to pay attention to my eating now?

Eating right can be difficult when you’re caring for someone with cancer. Appointments may get in the way of meals. You might not like the food at the hospital or transfusion center. You may not have time or energy to cook. If your loved one is not eating on a regular schedule, you may be less motivated to prepare meals. But caregiving can stress your body and spirit. You're at greater risk of getting sick. So is the person with cancer. Eating well will help you both stay healthy. A healthy diet can help protect you from heart disease, bone loss, diabetes, high blood pressure, and other illnesses.

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How can I eat better?

Here are some tips for eating right:

  • Get help with caregiving so you have time to eat well.
  • Plan ahead for meals. Prepare some meals in advance. Consider asking a friend to help, or try an online meal-planning tool like the Interactive Menu Planner, Healthy Eating Pyramid, or MyPyramid Menu Planner.
  • Avoid skipping meals. Pack a lunch if you’re going to be taking the patient to treatment during the day.
  • Try to get a variety of healthy foods and beverages each day. Eat lots of fruits and vegetables.
  • Read food labels so you know what you are eating, and try to avoid saturated fats (cheeses, some meats, whole milk, butter, etc.), transfats (snack foods, frozen dinners, cakes, cookies, margarine, fried foods), cholesterol, and added sugars
  • Limit your intake of alcohol.
  • Try to eat 2 cups of fruit and 2 and1/2 cups of vegetables daily.
  • Drink 3 cups per day of fat-free or low-fat milk or equivalent milk products.
  • Eat plenty of fish and nuts.
  • Cook with vegetable oils (olive, canola, sunflower, soy and corn) rather than butter.
  • Drink beverages without added sugars or sweeteners.
  • Limit salt.
  • Keep healthy snacks like fresh fruit, unsalted nuts, or low-fat string cheese on hand.
  • Keep a food diary for three days. Write down what, when, where, and how much you eat. Your food diary will help you understand your eating habits, and what areas you need to work on.

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Where can I get more information on eating well?

Here are some helpful websites:

You might also consider asking your doctor or a nutritionist for help in planning a balanced diet.

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Next learn about…

Getting help with caregiving
Getting exercise
Staying healthy
Coping with caregiving

Article Category: 
Keeping yourself healthy
Article Topics: 
Coping Emotionally
Keeping Healthy

Getting Exercise

Why is it important to exercise now?
How do I start exercising?
What can I do to get exercise?
How much exercise do I need?
Where can I get more Information on exercising?

 

Why is it important to exercise now?

Exercise is important for good health. Just a few minutes of activity a day can improve your overall well-being. It can give you more energy, reduce stress, and lift your mood. It can also decrease your risk of heart disease, colon cancer, diabetes, osteoporosis, and high blood pressure. Caregivers that exercise regularly are less likely to be depressed, anxious, angry, or stressed.

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How do I start exercising?

Talk your doctor before starting an exercise program. If he or she gives you the go-ahead, make a list of some activities you enjoy or have always wanted to try. Then look into exercise programs at nearby fitness centers, community colleges, local senior or community centers, etc. You can probably find classes for your age group and fitness level. For a personal fitness program, consider a personal trainer. Your doctor or the local health club can recommend one. If exercise has not been part of your daily routine, start slowly. Begin at a comfortable level, and add a little more activity each time you work out.

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What can I do to get exercise?

Here are some things try:

  • If you can, take a daily walk around your neighborhood or to a local park.
  • When the hospital staff comes in to take the patient’s vitals, take a brisk walk up and down the hall.
  • When you’re on the phone, walk rather than sit while you talk.
  • When you’re not with the patient, take the stairs instead of the elevator, and park your car a bit farther away from your destination..
  • Do yard work.
  • Get an exercise “buddy.” Ask a friend or family member to exercise with you, or to stay with the patient while you exercise.
  • Bike to work, to run errands, visit friends or just for fun.
  • If you have time, take a dance class, play a game of tennis, or play some volleyball.
  • Go for a jog, swim or fast walk.
  • Jump rope.
  • Do some push-ups, or sit-ups.
  • Lift weights.
  • Do “chair” exercises like knee lifts, shoulder circles, and head/neck stretches. You can do these while sitting with your loved one at home or in the hospital.

Many people find it helpful to keep track of their weekly exercise activities. Seeing your progress can motivate you. You can use this worksheet.

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How much exercise do I need?

Try to get 30-60 minutes of exercise 4 to 6 times a week. Include aerobic and strengthening activities. Aerobic exercise raises your heart rate and makes you breathe hard. Strength-training builds muscle in your arms, shoulders, chest, stomach, back, hips, and legs.

Try to get at least 2 hours and 30 minutes of moderate aerobic exercise per week or 1 hour and 15 minutes of vigorous aerobic exercise per week. Try starting with 10 minutes. Do strength-training at least 2 days a week. Try exercising each muscle group 8-12 times a session. Don’t worry if you can’t do that much. Anything is better than nothing!

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Where can I get more information on exercising?

Here are some helpful websites:

Next learn about…

Getting help with caregiving
Coping with caregiving
Eating well
Staying healthy

Article Category: 
Keeping yourself healthy
Article Topics: 
Coping Emotionally
Keeping Healthy

Staying Healthy

Why do I need to think about my own health now?
What do I need to do to stay healthy?

 

 

 

Why do I need to think about my own health now?

Caregivers often brush aside their own needs. They tend not to go to the doctor as often as they should, and many do not get the preventative care that they need. But, caregiving can be physically and emotionally demanding. As a caregiver, you are at greater risk for colds, infections, and chronic diseases. Taking time to take care for yourself is important. 

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What do I need to do to stay healthy?

It’s important that you have regular check-ups with your medical doctor, eye doctor, and dentist.

The US Preventive Services Task Force recommends you get the following on a regular basis:

  • Everyone: Dental checkups and cleanings, eye exams, blood pressure checks, weight and height measurements, blood work (e.g. blood glucose, thyroid function, and cholesterol), fecal occult blood tests (for people age 50 or older or as directed by your doctor), and colonoscopies (as directed by your doctor).
  • Women only: Mammograms (for women age 40 or as directed by your doctor), Pap smears, bone density tests (as directed by your doctor), and breast self-exams.
  • Men only: Prostate exams (for men age 40 or older or as directed by your doctor), and Prostate Specific Antigen (PSA) tests(as directed by your doctor).

Call your doctor to schedule your next appointment, or add a reminder on your calendar to do so later. If you don’t have a family doctor, eye doctor and/or dentist, ask a friend to recommend one. Also ask others to stay with the patient while you are at your appointments, and/or to remind you of your appointments and annual check-ups.

It’s also important that you take care of yourself by eating right, getting enough sleep, and getting exercise.

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Next learn about…

Getting help with caregiving
Avoiding substance abuse
Getting exercise
Eating well

Article Category: 
Keeping yourself healthy
Article Topics: 
Coping Emotionally
Keeping Healthy
This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.