Read an Excerpt
American Cancer Society Complete Guide to Family Caregiving
The Essential Guide to Cancer Caregiving at Home
By Julia A. Bucher, Peter S. Houts, Terri Ades
American Cancer Society / Health PromotionsCopyright © 2011 American Cancer Society
All rights reserved.
Being an Effective Caregiver
Caregivers have an important and unique role to play in helping a person with cancer through his or her cancer experience. Caring for someone with cancer can be demanding and stressful. You may feel overwhelmed and depleted at times. You will need to ask for help sometimes.
Caregiving can also be fulfilling. Try not to forget the positive parts of caregiving. Some caregivers see taking care of someone with cancer as their lifework. Many feel that family care-giving has enriched their lives. Others see it as a challenge and want to do the best job they can. Some see caregiving as a way of showing appreciation for the love and care they themselves have received. Others see caregiving as spiritually enriching.
Caring for a person with cancer at home can give you a sense of satisfaction and confidence. It can reveal inner strengths you did not realize you had. It can draw families together and can help people feel closer to the person who needs care.
Caregiving can also open doors to new friends and relationships through talking to other people who have faced the same problems. These relationships could include people from a support group, health professionals who show understanding and concern, and family members who have grown distant but who are drawn together because of this difficult situation.
When to Get Professional Help
Ask for help from health care professionals, social workers, a member of the clergy, or other professionals if any of the following conditions exist:
You are not able to carry out your caregiving responsibilities, and the needs of the person with cancer are not being met. Health care professionals, social workers, and clergy can help you get the help you need so the person with cancer gets needed help and services.
You are experiencing severe anxiety or depression. It is normal to feel upset and stressed when caring for someone with cancer. Read the chapters on anxiety and depression for a list of symptoms that indicate whether you need professional help to cope. Getting professional help for anxiety or depression is just like getting help for physical problems. It is not a sign of weakness and is not a reason to be embarrassed. It means that you are wise and even courageous. Professionals such as social workers, counselors, clergy, psychologists, and psychiatrists are skilled and experienced in helping people who are facing difficult challenges. Your family doctor also can be helpful in assessing your symptoms and recommending a professional to help you.
Communication between you and the person with cancer has broken down or has become painful or difficult. The stresses that come with cancer — physical, psychological, financial, and emotional — can interfere with your ability to communicate with the person for whom you are caring. Get professional help if anxiety and stress levels have risen to a level that prevents you from talking openly with the person about important issues.
Your relationship with the person with cancer is clouded by a history of abuse or addiction. If you have experienced verbal, mental, physical, or sexual abuse from the person for whom you are caring, you are likely to have serious problems in caregiving. You may already have strong and deep-seated feelings, usually built up over many years. These feelings may come from past problems with alcohol or drug addiction that hurt family relationships or friendships. A history of abuse calls for professional help from the start of caregiving.
What You Can Do
This chapter outlines four important goals to keep in mind in your caregiving:
Work as a team with the person with cancer and with health professionals, family, and friends.
Communicate with the person with cancer in order to involve him or her as much as possible.
Be an advocate for the person with cancer to be sure that he or she gets the information and services that are needed.
Take care of your own needs so that you have the emotional and physical strength to be a helpful and effective caregiver.
Start using the ideas in this chapter now. Don't wait until you feel overwhelmed. It is easier to develop good caregiving habits and attitudes early on before problems get out of hand. Set reasonable goals for yourself. It takes time and experience to improve your caregiving skills. Be patient with yourself.
Every week or so, take time to think about how you are doing as a caregiver. Think back over your experiences, and try to pay attention to how much you have learned and how you have improved. Reread this chapter periodically to see whether there are ideas here that can be of help.
Work as a Team
In cancer care, the person with cancer, health care professionals, and family members and friends are all members of the care team. The family caregiver is a team player — working with the person with cancer, with other family and friends, and with health care staff to solve problems.
* Include the person with cancer.
The person with cancer is central to the team. His or her participation in care and involvement in all problem-solving discussions is critical and requires the person's cooperation and agreement.
* Include health care professionals.
Health care professionals are also key members of the team. Working with and communicating with health care professionals will ensure that the care given at home is consistent with the best medical and home care practices.
* Involve family and friends.
Family members and friends who share in caregiving are also important team members. In addition to helping in practical ways, family members and friends can give encouragement and emotional support. They also can share their experiences and knowledge from dealing with similar problems in their lives.
Communicate with the Person with Cancer
Working well and communicating clearly with the person with cancer is your most important job. It can also be the most challenging. The person for whom you are caring is dealing with the physical effects of the disease and treatments as well as the psychological and social challenges of living with cancer. These problems may make it difficult for him or her to participate in making decisions or plans. Nonetheless, your job is to involve him or her as much as possible in making decisions and carrying out plans.
* Create a climate that encourages sharing feelings and supports the person's efforts to share.
Talk about important or sensitive topics in a time and place that's calm and favorable to open communication — not in the midst of a crisis or an argument. If your time for talking about important issues in your family is around the dinner table, that's the time and place to do it. Think about when and where you have had important and constructive talks in the past. Strive to recreate that setting.
* Communicate your availability.
One of the most important messages you can communicate is that you are available and willing to listen and talk when the person wants to discuss issues. However, leave the timing up to him or her. As much as possible, the person with cancer should make decisions on what feelings to share and when, how, and with whom to share them. By not pressing the issue, you allow the person to retain control over part of his or her life at a time when many circumstances and decisions are beyond his or her control.
* Understand that men and women often communicate in different ways, and make allowances for those differences.
In our society, women are sometimes encouraged or taught to express their feelings more openly than men. If you are a man caring for a woman, be aware when she shares her feelings. You may find yourself giving advice when she just wants someone to listen and be understanding. On the other hand, if you are a woman caring for a man, be aware that he may express his feelings differently from how you might. Pay special attention when he talks about things that are important to him. It may be helpful to openly discuss differences in how men and women express their feelings and share how you would like to be supported. Also, remember that we spend our lifetimes developing communication styles, and they won't change overnight.
* Be realistic and flexible about the person's communication preferences.
People with cancer may want or need to share and discuss many things, but they may not want to share them all with just one person. Let the person talk about whatever he or she wants with whomever he or she wants. It's okay if the person isn't telling you everything, as long as he or she is telling somebody.
* Remember that sharing doesn't always mean talking.
The person with cancer may feel more comfortable writing about his or her feelings or expressing them through an activity. He or she may express feelings in other nonverbal ways, such as by making gestures or expressions, touching, or just asking that you be present. Sharing someone's silence can be a wonderful experience and a privilege. Similarly, sometimes the person with cancer may need to be alone. As a caregiver, try to respect the person's right to be alone.
* Remember that you don't have to agree.
Two people are not always at the same place about important issues at the same time. There is no simple answer to many problems — especially problems that last a long time.
* Explain your needs openly.
You, the caregiver, will also have needs. Sometimes you may need to ask the person with cancer to do something to make your life easier or make your caregiving responsibilities easier. Keep in mind that conflict resolution does not always mean everybody is happy. On some issues, compromise might be appropriate. On other issues, you may have to give in or ask the other person to give in.
* Suggest a trial run or time limit.
If you want the person with cancer to try something (such as a new bed or a new medicine schedule) and he or she is resisting, ask to try it for a limited time, such as a week, and then evaluate the change. This approach avoids making the person feel locked into a decision. For example, if you want the person with cancer to ring a bell to call for help when in bed and he or she thinks it is unnecessary, ask the person to try your idea for a few days. Then you can talk about how it worked and whether it should continue.
* Choose your battles carefully.
Ask yourself, "What's really important here? Am I being stubborn because I need to win an argument?" You can save energy by skipping minor conflicts and using your energy and influence on issues that really count. For example, you might be willing to press the issue when it comes to the person getting enough rest or taking important medications. If not all of the person's food choices are as healthy as you'd like, however, this might be an area where you choose not to argue.
* Let the person with cancer continue to make decisions about his or her life.
Taking away a person's ability to make decisions can undermine his or her feelings of control. For example, an adult child living far from an ill parent might want to move the parent into a nursing home so that someone will be there to help the person if there are any problems. Although this move might make the adult child feel better, it may not be what the parent wants. If the person with cancer understands the consequences of his or her decision (for example, in the case of the parent, that no one may be around to help if he or she falls), he or she has the right to make that decision.
* Help the person cope with the diagnosis and live as normal a life as possible.
Living as normal a life as possible can be a good way to cope with cancer. By helping the person with cancer maintain normal routines, you can minimize the disruptions caused by cancer and its treatment. However, some people try to deal with the emotional stress of a cancer diagnosis by pretending that it's not happening. This could be harmful if the person does things that make the illness worse, such as avoiding medical treatment, canceling visits to the doctor, or pursuing activities that could be harmful. It is important to have realistic expectations about activity levels while undergoing treatment and to avoid activities that could be harmful.
Be an Advocate
An advocate talks to the person with cancer about his or her needs and helps make sure those needs are met. As an advocate, you can help the person to help him or herself, or you can step in for the person, with permission, and speak up for his or her needs. An advocate is someone that the person with cancer looks to for assistance and advice. It is a very special role.
One of the ways that caregivers can help is to serve as an advocate for the person with cancer. In order to be an effective advocate in the health care system, the caregiver must strive to understand the needs of the person with cancer and to help make sure those needs are met.
* Ask questions.
Asking questions is the best way to make sure that you understand what will happen during treatment. Help the person with cancer prepare a written list of questions before appointments, procedures, and treatments. Offer to take notes during appointments so the person with cancer can concentrate on listening. If the person with cancer does not feel comfortable asking specific questions because of nervousness or embarrassment, the caregiver can help ask these difficult questions and record the answers.
Make sure you understand the goal of any test, procedure, or treatment, as well as what can be expected afterwards, including side effects and recovery times. Make sure you understand instructions for any at-home care necessary after procedures or treatments. Ask whether there are educational materials available about the condition, procedure, or treatment beforehand — or go out and do some research. The more information you have, the better prepared you can be.
* Keep detailed health records.
Caregivers can also help the person with cancer maintain a personal health record. This record should include a detailed summary of the person's health history along with copies of records kept by the person's health care team and any other treatment providers and insurers. Don't hesitate to ask for copies of these records; the patient has a right to his or her information. The person with cancer will have to name you as an approved recipient of these private medical records for them to be released directly to you. Otherwise it will be necessary for the person with cancer to place the request. This record should be kept up-to-date either on a computer or stored in a binder for easy reference. Make sure to include medications, dosages, and dates of treatment along with any allergies or reactions to medications. Also include any vitamins, dietary supplements, or over-the-counter medications taken by the person with cancer. Have a list of the person's health care providers and their contact information available in the event there are questions about treatment records.
Make sure friends, family members, and other caregivers know the location of this personal health information. It may not always be easy for the person with cancer to recall this history from memory, especially in the event of an emergency. Having a personal health record available can make sure that important information is not overlooked when the person needs medical care.
Help the person manage financial issues.
Depending on the situation and your relationship to the person, you may need to assist with the management of the household finances and issues related to payment for cancer treatment. The finances of paying for cancer treatment can be complex, and you may need to help the person with keeping records and organization of the family's finances. See chapter 6 for more information.
Excerpted from American Cancer Society Complete Guide to Family Caregiving by Julia A. Bucher, Peter S. Houts, Terri Ades. Copyright © 2011 American Cancer Society. Excerpted by permission of American Cancer Society / Health Promotions.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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