Caring for the Caregiver is for friends and family members giving care to a person with cancer. It is a condensed version of our booklet, When Someone You Love Is Being Treated for Cancer.
Being a caregiver to someone you care about may mean helping with daily activities such as going to doctor’s visits or preparing food. It can also be coordinating care and services or offering emotional support. But during this time, it’s important that caregivers take care of themselves too.
A wife, hesitant to put her ailing husband into a nursing facility or assisted living facility, chooses instead to care for him at home to save on costs and give him more attention.
A daughter, holding down her own full-time job, helps her elderly mother, who lives nearby, with medical or nursing-type tasks. She also oversees her mother’s doctor appointments and does her grocery shopping and much of the cooking.
Caregiving in the United States, as carried out by those who provide unpaid care to an adult or a child, runs the gamut from millennials on one end (one-quarter of caregivers today are millennials between ages 18 and 34) to those who are 75 years or older (nearly 1 in 10) and are the sole support for a loved one. In between, there are men and women from every age, gender, socioeconomic, racial and ethnic group taking on the responsibility of caring for another.
A large majority of caregivers (85%) help care for a relative. Forty-nine percent are caring for their spouse.
While there are countless joys that come with caregiving, there are also countless stresses and strains. With almost 44 million family caregivers in our country that’s nearly 20 percent of the U.S. population is it any wonder that a part of this population suffers from.
The fact is that the longer caregivers provide care, the more likely they are to report that their own physical or mental health is fair or poor, especially those caregivers in more complex or demanding care situations.That includes those who are the primary caregivers or who have the additional stress of holding down a job (six in 10 caregivers are employed).
A June 2015 research report, Caregiving in the U.S., a joint effort of the National Alliance for Caregiving and AARP, found that, on average, caregivers spend 24.4 hours a week providing care to their loved ones. Nearly one-quarter (23%) of them provide 41 or more hours of care a week. Caregiving is particularly time-intensive for those caring for a spouse or partner (44.6 hours a week), the report finds.
Caregivers need support. If they don’t get it, not only are they at risk, but so are the people they care for. poor eating habits, failure to exercise or seek medical attention for their own health all put caregivers’ health in danger.
But who is caring for the caregiver? Usually, it’s just the caregiver herself or himself. The Family Caregiver Alliance urges caregivers to take stock of their personal situation and take responsibility for their own care.
This booklet covers:
- Understanding your feelings and asking for help
- How to make time for yourself
- Caring for your body and spirit
- Going with your loved one to medical visits
- Talking with friends and family members about cancer
This booklet is not about how to take care of a patient. Instead, it mainly provides ways for a friend or family member to take care of themselves while caring for someone with cancer. It gives you communication and self-care tips to focus on your needs while helping your loved one too.
Caregiving is rewarding but stressful
Caregiving can have many rewards. For most caregivers, being there when a loved one needs you is a core value and something you wish to provide.
But a shift in roles and emotions is almost certain. It is natural to feel angry, frustrated, exhausted, alone or sad. Caregiver stress the emotional and physical stress of caregiving is common.
People who experience caregiver stress can be vulnerable to changes in their own health.
Risk factors for caregiver stress include:
- Being female
- Having fewer years of formal education
- Living with the person you are caring for
- Social isolation
- Having depression
- Financial difficulties
- Higher number of hours spent caregiving
- Lack of coping skills and difficulty solving problems
- Lack of choice in being a caregiver
Signs of caregiver stress
As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:
- Feeling overwhelmed or constantly worried
- Feeling tired most of the time
- Sleeping too much or too little
- Gaining or losing a lot of weight
- Becoming easily irritated or angry
- Losing interest in activities you used to enjoy
- Feeling sad
- Having frequent headaches, bodily pain or other physical problems
- Abusing alcohol or drugs, including prescription medications
Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet which increases your risk of medical problems, such as heart disease and diabetes.
Effects of Caregiving on Health and Well-Being
We hear this often: “My husband is the person with Alzheimer’s, but now I’m the one in the hospital!” Such a situation is all too common. Researchers know a lot about the effects of caregiving on health and well-being.
For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers. The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.
Older caregivers are not the only ones who put their health and well-being at risk. If you are a baby boomer who has assumed a caregiver role for your parents while simultaneously juggling work and raising adolescent children, you face an increased risk for depression, chronic illness, and a possible decline in quality of life.
But despite these risks, family caregivers of any age are less likely than non-caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, and race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. They report:
- Sleep deprivation
- Poor eating habits
- Failure to exercise
- Failure to stay in bed when ill
- Postponement of or failure to make medical appointments for themselves
Family caregivers are also at increased risk for depression and excessive use of alcohol, tobacco, and other drugs. Caregiving can be an emotional roller coaster. On the one hand, caring for your family member demonstrates love and commitment and can be a very rewarding personal experience.
On the other hand, exhaustion, worry, inadequate resources, and continuous care demands are enormously stressful. Caregivers are more likely to have a chronic illness than are non-caregivers, namely high cholesterol, high blood pressure, and a tendency to be overweight. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed.
Taking Responsibility for Your Own Care
You cannot stop the impact of a chronic or progressive illness or a debilitating injury on someone for whom you care. But there is a great deal that you can do to take responsibility for your personal well-being and to get your own needs met.
Identifying Personal Barriers
Many times, attitudes and beliefs form personal barriers that stand in the way of caring for yourself. Not taking care of yourself may be a lifelong pattern, with taking care of others an easier option. However, as a family caregiver you must ask yourself: “What good will I be to the person I care for if I become ill? If I die?”Breaking old patterns and overcoming obstacles is not an easy proposition, but it can be done regardless of your age or situation. The first task in removing personal barriers to self-care is to identify what is in your way. For example:
- Do you think you are being selfish if you put your needs first?
- Is it frightening to think of your own needs? What is the fear about?
- Do you have trouble asking for what you need? Do you feel inadequate if you ask for help?
- Do you feel you have to prove that you are worthy of the care recipient’s affection? Do you do too much as a result?
Sometimes caregivers have misconceptions that increase their stress and get in the way of good self-care. Here are some of the most commonly expressed:
- I am responsible for my parent’s health.
- If I donʼt do it, no one will.
- If I do it right, I will get the love, attention, and respect I deserve.
- Our family always takes care of their own.
- I promised my father I would always take care of my mother.
“I never do anything right,” or “Thereʼs no way I could find the time to exercise” are examples of negative self-talk, another possible barrier that can cause unnecessary anxiety. Instead, try positive statements: “Iʼm good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind tends to believe what you tell it.
Because we base our behavior on our thoughts and beliefs, attitudes and misconceptions like those noted above can cause caregivers to continually attempt to do what cannot be done, to control what cannot be controlled. The result is feelings of continued failure and frustration and, often, an inclination to ignore your own needs. Ask yourself what might be getting in your way and keeping you from taking care of yourself.
Once youʼve started to identify any personal barriers to good self-care, you can begin to change your behavior, moving forward one small step at a time. Following are some effective tools for self-care that can start you on your way.
1: Reducing Personal Stress
How we perceive and respond to an event is a significant factor in how we adjust and cope with it. The stress you feel is not only the result of your caregiving situation but also the result of your perception of it whether you see the glass as half-full or half-empty. It is important to remember that you are not alone in your experiences.
Your level of stress is influenced by many factors, including the following:
- Whether your caregiving is voluntary. If you feel you had no choice in taking on the responsibilities, the chances are greater that you will experience strain, distress, and resentment.
- Your relationship with the care recipient. Sometimes people care for another with the hope of healing a relationship. If healing does not occur, you may feel regret and discouragement.
- Your coping abilities. How you coped with stress in the past predicts how you will cope now. Identify your current coping strengths so that you can build on them.
- Your caregiving situation. Some caregiving situations are more stressful than others. For example, caring for a person with dementia is often more stressful than caring for someone with a physical limitation.
- Whether or not support is available.
Steps to Managing Stress
- Recognize warning signs early. These might include irritability, sleep problems, and forgetfulness. Know your own warning signs, and act to make changes. Donʼt wait until you are overwhelmed.
- Identify sources of stress. Ask yourself, “What is causing stress for me?” Sources of stress might be that you have too much to do, family disagreements, feelings of inadequacy, or the inability to say no.
- Identify what you can and cannot change. Remember, we can only change ourselves; we cannot change another person. When you try to change things over which you have no control, you will only increase your sense of frustration. Ask yourself, “What do I have some control over? What can I change?” Even a small change can make a big difference. The challenge we face as caregivers is well expressed in the following words modified from the original Serenity Prayer (attributed to American theologian Reinhold Niebuhr):
“God grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
and (the) wisdom to know the difference.”
- Take action. Taking some action to reduce stress gives us back a sense of control. Stress reducers can be simple activities like walking and other forms of exercise, gardening, meditation, or having coffee with a friend. Identify some stress reducers that work for you.
2: Setting Goals
Setting goals or deciding what you would like to accomplish in the next three to six months is an important tool for taking care of yourself. Here are some sample goals you might set:
- Take a break from caregiving.
- Get help with caregiving tasks like bathing and preparing meals.
- Engage in activities that will make you feel more healthy.
- Goals are generally too big to work on all at once. We are more likely to reach a goal if we break it down into smaller action steps. Once you’ve set a goal, ask yourself, “What steps do I take to reach my goal?” Make an action plan by deciding which step you will take first, and when. Then get started!
Example (Goal and Action Steps):
Goal: Feel more healthy.
Possible action steps:
- Make an appointment for a physical check-up.
- Take a half-hour break once during the week.
- Walk three times a week for 10 minutes.
3: Seeking Solutions
Seeking solutions to difficult situations is, of course, one of the most important tools in caregiving. Once youʼve identified a problem, taking action to solve it can change the situation and also change your attitude to a more positive one, giving you more confidence in your abilities.
Steps for Seeking Solutions
- Identify the problem. Look at the situation with an open mind. The real problem might not be what first comes to mind. For example, you think that the problem is simply that you are tired all the time, when the more basic difficulty is your belief that “no one can care for John like I can.” The problem? Thinking that you have to do everything yourself.
- List possible solutions. One idea is to try a different perspective: “Even though someone else provides help to John in a different way than I do, it can be just as good.” Ask a friend to help. Call Family Caregiver Alliance or the Eldercare Locator (see Resources List) and ask about agencies in your area that could help provide care.
- Select one solution from the list. Then try it!
- Evaluate the results. Ask yourself how well your choice worked.
- Try a second solution. If your first idea didnʼt work, select another. But donʼt give up on the first; sometimes an idea just needs fine-tuning.
- Use other resources. Ask friends, family members, and professionals for suggestions.
- If nothing seems to help, accept that the problem may not be solvable now. You can revisit it at another time.
Note: All too often, we jump from step one to step seven and then feel defeated and stuck. Concentrate on keeping an open mind while listing and experimenting with possible solutions.
4: Communicating Constructively
Being able to communicate constructively is one of a caregiverʼs most important tools. When you communicate in ways that are clear, assertive, and constructive, you will be heard and get the help and support you need. The box below shows basic guidelines for good communication.
- Use “I” messages rather than “you” messages. Saying “I feel angry” rather than “You made me angry” enables you to express your feelings without blaming others or causing them to become defensive.
- Respect the rights and feelings of others. Do not say something that will violate another personʼs rights or intentionally hurt the personʼs feelings. Recognize that the other person has the right to express feelings.
- Be clear and specific. Speak directly to the person. Donʼt hint or hope the person will guess what you need. Other people are not mind readers. When you speak directly about what you need or feel, you are taking the risk that the other person might disagree or say no to your request, but that action also shows respect for the other personʼs opinion. When both parties speak directly, the chances of reaching understanding are greater.
- Be a good listener. Listening is the most important aspect of communication.
5: Asking for and Accepting Help
When people have asked if they can be of help to you, how often have you replied, “Thank you, but I’m fine.” Many caregivers donʼt know how to marshal the goodwill of others and are reluctant to ask for help. You may not wish to “burden” others or admit that you can’t handle everything yourself.
Be prepared with a mental list of ways that others could help you. For example, someone could take the person you care for on a 15-minute walk a couple of times a week. Your neighbor could pick up a few things for you at the grocery store.
A relative could fill out some insurance papers. When you break down the jobs into very simple tasks, it is easier for people to help. And they do want to help. It is up to you to tell them how.
Help can come from community resources, family, friends, and professionals. Ask them. Donʼt wait until you are overwhelmed and exhausted or your health fails. Reaching out for help when you need it is a sign of personal strength.
Tips on How to Ask
- Consider the personʼs special abilities and interests. If you know a friend enjoys cooking but dislikes driving, your chances of getting help improve if you ask for help with meal preparation.
- Resist asking the same person repeatedly. Do you keep asking the same person because she has trouble saying no?
- Pick the best time to make a request. Timing is important. A person who is tired and stressed might not be available to help out. Wait for a better time.
- Prepare a list of things that need doing. The list might include errands, yard work, or a visit with your loved one. Let the “helper” choose what she would like to do.
- Be prepared for hesitance or refusal. It can be upsetting for the caregiver when a person is unable or unwilling to help. But in the long run, it would do more harm to the relationship if the person helps only because he doesnʼt want to upset you. To the person who seems hesitant, simply say, “Why donʼt you think about it.” Try not to take it personally when a request is turned down. The person is turning down the task, not you. Try not to let a refusal prevent you from asking for help again. The person who refused today may be happy to help at another time.
- Avoid weakening your request. “Itʼs only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like itʼs not very important to you. Use “I” statements to make specific requests: “I would like to go to church on Sunday. Would you stay with Grandma from 9 a.m. until noon?”
6: Talking to the Physician
In addition to taking on the household chores, shopping, transportation, and personal care, 37 percent of caregivers also administer medications, injections, and medical treatment to the person for whom they care. Some 77 percent of those caregivers report the need to ask for advice about the medications and medical treatments. The person they usually turn to is their physician.
But while caregivers will discuss their loved oneʼs care with the physician, caregivers seldom talk about their own health, which is equally important. Building a partnership with a physician that addresses the health needs of the care recipient and the caregiver is crucial. The responsibility of this partnership ideally is shared between you, the caregiver, the physician, and other healthcare staff. However, it will often fall to you to be assertive, using good communication skills, to ensure that everyoneʼs needs are met—including your own.
Tips on Communicating with Your Physician
- Prepare questions ahead of time. Make a list of your most important concerns and problems. Issues you might want to discuss with the physician are changes in symptoms, medications or general health of the care recipient, your own comfort in your caregiving situation, or specific help you need to provide care. The physician only sees a moment in time with the patient. Make sure you let him/her know what your concerns are in their daily care/health.
- Enlist the help of the nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about various tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home.
- Make sure your appointment meets your needs. For example, the first appointment in the morning or after lunch are the best times to reduce your waiting time or accommodate numerous questions. When you schedule your appointment, be sure you convey clearly the reasons for your visit so that enough time is allowed.
- Call ahead. Before the appointment, check to see if the doctor is on schedule. Remind the receptionist of special needs when you arrive at the office.
- Take someone with you. A companion can ask questions you feel uncomfortable asking and can help you remember what the physician and nurse said.
- Use assertive communication and “I” messages. Enlist the medical care team as partners in care. Present what you need, what your concerns are, and how the doctor and/or nurse can help. Use specific, clear “I” statements like the following: “I need to know more about the diagnosis; I will feel better prepared for the future if I know what’s in store for me.” Or “I am feeling rundown. I’d like to make an appointment for myself and my husband next week.” Or “I need a way for my mother to sleep at night as I am now exhausted being up every two hours at night with her.”
7: Starting to Exercise
You may be reluctant to start exercising, even though youʼve heard itʼs one of the healthiest things you can do. Perhaps you think that physical exercise might harm you or that it is only for people who are young and able to do things like jogging.
Fortunately, research suggests that you can maintain or at least partly restore endurance, balance, strength, and flexibility through everyday physical activities like walking and gardening. Even household chores can improve your health. The key is to increase your physical activity by exercising and using your own muscle power.
Exercise promotes better sleep, reduces tension and depression, and increases energy and alertness. If finding time for exercise is a problem, incorporate it into your daily activity. Perhaps the care recipient can walk or do stretching exercise with you. If necessary, do frequent short exercises instead of those that require large blocks of time. Find activities you enjoy.
Walking, one of the best and easiest exercises, is a great way to get started. Besides its physical benefits, walking helps to reduce psychological tension. Walking 20 minutes a day, three times a week, is very beneficial. If you canʼt get away for that long, try to walk for as long as you can on however many days you can. Work walking into your life. Walk around the mall, to the store, or a nearby park. Walk around the block with a friend.
8: Learning from Our Emotions
It is a strength to recognize when your emotions are controlling you (instead of you controlling your emotions). Our emotions are messages to which we need to listen. They exist for a reason. However negative or painful, our feelings are useful tools for understanding what is happening to us. Even feelings such as guilt, anger, and resentment contain important messages. Learn from them, then take appropriate action.
For example, when you cannot enjoy activities you previously enjoyed, and your emotional pain overshadows all pleasure, it is time to seek treatment for depression especially if you are having thoughts of suicide. Speaking with your physician is the first step. (See the FCA fact sheet Depression and Caregiving.)
Caregiving often involves a range of emotions. Some feelings are more comfortable than others. When you find that your emotions are intense, they might mean the following:
- That you need to make a change in your caregiving situation.
- That you are grieving a loss.
- That you are experiencing increased stress.
- That you need to be assertive and ask for what you need.
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