Taking Care of You - Effects of Caregiving on Health and Well-being
by The Family Caregiver Alliance
First, Care for Yourself
On an airplane an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.
Effects of Caregiving on Health and Well-being
We often hear: “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, your risk of dying is 63 percent higher than that of people your age who are not caregivers.¹ 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 too face an increased risk of 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, gender, and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities.
- Sleep deprivation
- Poor eating habits
- Failure to exercise
- Failure to stay in bed when ill
- Postponement of or failure to make medical appointments
Family caregivers are also at increased risk for excessive use of alcohol, tobacco, and other drugs and for depression. 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. Studies show that an estimated 46 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 have 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 because taking care of others has always been an easier option, but 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 feel you have to prove that you are worthy of the care recipient’s affection?
- Do you think you are being selfish if you put your own 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? Why?
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 loved one’s health.
- If I don’t do it, no one will.
- If I do it right, I will get the love, attention, and respect I deserve.
“I never do anything right” and “There’s 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: “I’m good at giving John a bath.” “I can exercise for 15 minutes a day.” Remember, your mind believes 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 you’ve 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.
Tool # 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 the result of not only your caregiving situation but also 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 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. Don’t wait until you are overwhelmed.
- Identify sources of stress. Ask yourself, What is causing stress for me? Sources of stress might be too much to do, family disagreements, feelings of inadequacy, and the inability to say no.
- Identify what you can and cannot change. Remember, we can change only 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 words from the Serenity Prayer:
- Grant me the serenity
To accept the things I cannot change,
The 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.
Tool # 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.
- Feel healthier.
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 healthier.
Possible action steps: Make an appointment for a physical checkup. Take a half-hour break once during the week. Walk three times a week for 10 minutes.
Tool # 3: Seeking Solutions
Seeking solutions to difficult situations is, of course, one of the most important tools in caregiving. Once you’ve 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
First, 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 may think that the problem is simply that you are tired all the time, when really 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.
Second, 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 and ask about agencies in your area that could help provide care.
Finally, 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 didn’t work, select another. But don’t 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. 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.
Tool # 4: Communicating Constructively
Being able to communicate constructively is one of a caregiver’s most important tools. When you communicate in ways that are
clear, assertive, and constructive, you will be heard and will get the help and the support you need.
- 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 the feelings of others. Do not say something that will violate another person’s rights or intentionally hurt the person’s feelings. Recognize that the other person has the right to express feelings.
- Be clear and specific. Speak directly to the person. Don’t hint or hope that 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 person’s 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.
Tool # 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 don’t 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. Don’t 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.
How to Ask for Help
- Consider the helper’s abilities and interests. If you know a friend who 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, and a visit with your loved one. Let the helper choose what he or 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 doesn’t want to upset you. To the person who seems hesitant, simply say, “Why don’t 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. “It’s only a thought, but would you consider staying with Grandma while I went to church?” This request sounds like it’s 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?”
Tool # 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 medications and medical treatments. The person they usually turn to is their physician.
But though caregivers will discuss their loved one’s care with the physician, they 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 is ideally shared among you the caregiver, the physician, and other healthcare staff. It will often fall to you to be assertive, however, using good communication skills, to ensure that everyone’s 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 the caregiving situation; or specific help you need to provide care.
- Enlist the help of a nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home.
- Make sure the appointment meets your needs. For example, the first appointment in the morning or after lunch and the last appointment of the day are the best times to reduce your waiting time and accommodate numerous questions. When you schedule your appointment, be sure you convey clearly the reasons for your visit so that enough time is allotted.
- 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 the 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 clear, specific “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.”
Tool # 7: Starting to Exercise
You may be reluctant to start exercising, even though you’ve heard it’s 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 exercises with you. If necessary, do frequent short exercises instead of those that require large blocks of time. Find activities you enjoy.
Walking is one of the best and easiest exercises, so it’s a great way to get started. In addition to the obvious physical benefits of walking, it helps reduce psychological tension. If you can’t get away for that long, try to walk for as long as you can on however many days you can. Walking 20 minutes a day, three times a week, is very beneficial. Work it into your life. Walk around the mall or to the store or a nearby park. Walk around the block with a friend.
Tool # 8: Learning from Your Emotions
Recognizing when your emotions are controlling you (instead of you controlling your emotions) is important. Our emotions are messages we need to listen to. 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.
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:
- You need to make a change in your caregiving situation.
- You are grieving a loss.
- You are experiencing increased stress.
- You need to be assertive and ask for what you need.
Remember, it is not selfish to focus on your own needs and desires when you are a caregiver—it’s an important part of the job. You are responsible for your own self-care. Focus on the following self-care practices:
- Learn and use stress-reduction techniques.
- Attend to your own healthcare needs.
- Get proper rest and nutrition.
- Exercise regularly.
- Take time off without feeling guilty.
- Participate in pleasant, nurturing activities.
- Seek and accept the support of others.
- Seek supportive counseling when you need it, or talk to a trusted counselor or friend.
- Identify and acknowledge your feelings.
- Change the negative ways you view situations.
- Set goals.
- It’s up to you!
- Shulz R, Beach SR. Caregiving as a risk for mortality: The Caregiver Health Effects Study. Journal of the American Medical Association. 1999;282(23):2215-9.
A special thank-you to Legacy Caregiver Services, Legacy Health System, Portland, Oregon, for permission to use information from The Caregiver Helpbook: Powerful Tools for Caregiving Powerful Tools for Caregivers Class Leaders Guide. The Caregiver Helpbook (by Vicki Schmall, PhD; Marilyn Cleland, RN; and Marilynn Sturdevant, RN, MSW, LCSW; 2000) is highly recommended reading for caregivers.