Caregivers

What is Caregiving and Who are Caregivers?

Caregivers are individuals who provide care to chronically ill or disabled family members or friends. It is estimated that more than one quarter of the adult population, or more than fifty million people, have been caregivers. Men now make up 44% of the caregiving population; and family caregivers provide, for “free”, an estimated $257 billion per year in services. The role of caregivers is expected to increase as the population ages; however, the number of individuals available for caregiving will diminish.

Effective Caregivers

• Serve as advocates for their patient
• Understand the patient’s needs to socialize
• Become familiar with insurance and financial matters

Helping someone go through a cancer diagnosis, treatment, and recovery requires understanding, encouragement, patience and energy. Caregivers become part advocate, nurse, organizer and financial analyst in addition to maintaining their other responsibilities. Caring for someone with a life-threatening disease can be emotionally and physically draining. Caregiver burn-out can occur even when caring for a dearest loved one. For this reason, you are encouraged to:

• Take control of your life. You must remember to continue to live your life and not allow it to completely revolve around your loved one’s illness.
• Remember to take care of and be kind to yourself. The job you are performing is difficult and can be taxing. It is important for you to have personal quality time, to do what you like, for you.
• Be aware of how you are feeling emotionally. Depression is common for individuals in your position. Seek professional help immediately if you are experiencing signs of depression.
• Accept assistance from others when offered and make specific suggestions as to what they can do.
• Get educated. The more you know about your loved one’s condition, the more empowered you will feel.
• Support your loved one’s independence. Caring for somebody does not necessarily entail doing everything for them. New technologies and ideas provide options that help promote a healthy level of independence.
• Listen to your heart. Your gut instincts most often lead you in the right direction.
• Allow yourself to grieve. Then allow yourself to move forward and dream of new possibilities and experiences.
• Seek support from other caregivers and obtain strength and comfort in the understanding of others in similar situations. You are not alone.

Additional Information for Caregivers;

• Caregiving and Sibling Relationships: Challenges and Opportunities
• Communicating with Doctors and Managing Hospitalization
• Taking Care of You: Self-care for Family Caregivers

Caregiving and Sibling Relationships

By the Family Caregiver Alliance

Providing care for an aging or ill parent can bring out the best and the worst in sibling relationships. Ideally, the experience of caregiving is a time for siblings to come together and provide mutual support to one another. As a stressful transition, however, the pressure can also lead to strained connections and painful conflict.

One major source of sibling friction is the legacy of family dynamics. Invariably, the demands of caregiving bring out old patterns and unresolved tensions. Past wounds are reopened, and childhood rivalries reemerge. It is not unusual for adult children to find themselves replaying their historical roles in the family, re-creating old dynamics of competition and resentment as they vie for Mom’s attention and affection.

Another conflict can arise when one sibling is in denial over a parent’s condition. Adult children who seem unable to accept the reality of a parent’s illness and refuse involvement may be protecting themselves from facing a parent’s eventual death and their own loss. More-active siblings may react with bitterness and anger.

Most often though, discord surfaces from the unequal division of caregiving duties. Generally, one sibling takes on the primary role of caring for a loved one. This may be because he or she lives closest to a parent, is perceived as having less work or fewer family obligations, or is considered the “favorite” child. Regardless of the reasons, this situation can lead the overburdened caregiver to feel frustrated and resentful and other siblings to feel uninformed and left out.

Resolving these conflicts can be challenging. But ignoring the difficulties in a caregiving situation can create greater challenges. Ultimately, strained family relationships can impede a family’s capacity to provide the greatest quality of care to a parent.

Try to forgive family members who continue to refuse to get involved in a loved one’s care. The only thing we have control over in a situation is our reaction. Attempt to work through your negative emotions to take care of yourself and move forward.

For more information call the Family Caregiver Alliance at (800) 445-8106.

© 2008 Family Caregiver Alliance. Used with permission. Established in 1977, the Family Caregiver Alliance’s pioneering programs support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. The National Center on Caregiving at Family Caregiver Alliance was established in 2001 to advance the development of high-quality, cost-effective programs and policies for caregivers in every state in the country. Visit www.caregiver.org or call (800) 445-8106 for more information.

Communicating with Doctors

There is a great deal to be gained by improving communications between family caregivers and healthcare professionals, especially physicians. Better care for the patient, less stress and illness for the caregiver, more efficient use of doctors’ time, reduced costs and improved satisfaction for all concerned can be achieved when caregivers communicate effectively with physicians. To achieve effective communication, family caregivers and physicians need to gain a better understanding of each other’s worlds. By trying to “walk in each other’s shoes”, better communication is attained.

• Educate yourself about your loved one’s disease.
• Write questions down before appointments so you will not forget them.
• Make a habit of taking notes during appointments so you can more easily remember what was discussed.
• If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you.
• Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
• Recognize that not all questions have answers – especially those beginning with “why.”

Tips for Managing Hospitalization

As a family caregiver it is likely that you and your loved one have seen, or will see, the inside of a hospital more than the average person. When hospitalization occurs, there are things that you can do to feel more confident, ease your stress, and be a more effective advocate and respected member of the healthcare team.

When a cancer patient is hospitalized it may be for a procedure; to manage an acute problem, such as an infection; or because the cancer is progressing. Your role as a caregiver and advocate for yourself and your loved one is especially important at this time. Think of yourself as a member of the healthcare team, which also includes the attending physician, the hospital nurses, and a hospital social worker or case manager. Immediately upon arrival at the hospital:

Help Provide Information

You can be proactive, feel more confident in your dealings with hospital personnel and facilitate your loved one’s transition into the hospital setting by providing the patient’s medical history in writing, including:

• A list of the patient’s allergies
• A list of current medications and dosages
• A list of past treatments
• A list of all physicians and consultants who are caring for your loved one, along with phone numbers
• A clear and fairly detailed written description of your loved one’s current physical and mental capabilities
• A copy of the patient’s advance directive if there is one

Identify the hospital social worker or case manager

This individual can help you with a range of services, including financial questions, support and discharge planning issues. Discharge planning should start as soon as you enter the hospital because it takes time to arrange home healthcare, special equipment and who will be paying for these additional expenses.

Identify the “attending” physician

This individual is the primary doctor taking care of your loved one and will coordinate care in the hospital. The attending physician will be in communication with the other consulting physicians and often can summarize the entire treatment plan. Find out the best way to get in touch with the attending physician. At what number can the physician be reached and what times are best to call? Make sure the “face” sheet in your loved one’s hospital chart contains the correct name and phone numbers. Do not hesitate to continue to ask questions until you feel comfortable with the answers.

Get to know the nurses who are caring for your loved one

They can answer your day-to-day questions and are an excellent source of information and support.

Discharge Planning

It is very important to start thinking about discharge planning when your loved one first enters the hospital. It is important that the discharge planner (and the nurses involved) fully understand your loved one’s physical and mental capabilities, so the most appropriate help for you and your loved one can be ordered as part of the discharge plan.

Legal Issues

Durable Power of Attorney for Healthcare, also know as a healthcare agent or proxy, is the individual appointed to make decisions about medical care if your loved one cannot. That person may well be you. A healthcare agent can be assigned as part of the advance directive form.

Advance Medical Directives inform physicians and family members what kind of medical treatment and care your loved one wishes to receive in the event of his/her inability to make those decisions. A Living Will is an example of an advance medical directive. A Living Will comes into effect during an end-of-life situation. It records the specific kind of treatment and care your loved one wants at that time.

Taking Care of You

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 noncaregivers 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.

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

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.

Moving Forward

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.

Communication Guidelines

• 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.

Summing Up

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!

Reference

1. 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.

Acknowledgments

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. The book can be ordered directly from Legacy Health Systems: (530) 413-6578; caregiver@lhs.org;?www.legacyhealth.org.

© 2008 Family Caregiver Alliance. Used with permission. Established in 1977, Family Caregiver Alliance’s pioneering programs support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. The National Center on Caregiving at Family Caregiver Alliance was established in 2001 to advance the development of high-quality, cost-effective programs and policies for caregivers in every state in the country. Visit www.caregiver.org or call (800) 445-8106 for more information.

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