You and the young person you are helping are in charge of dealing with your problems. You are not people who are just following instructions but are people who are making decisions and taking actions.

Successful caregivers work with other people to solve problems. The successful caregiver is also a team player-working with other family and friends, and working with medical staff to solve problems, and, as much as possible, the younger person with cancer.

The young person with cancer is central to the team. Success in carrying out home care plans requires his or her cooperation. The child with cancer should understand and participate, as much as possible, in all problem-solving discussions that affect him or her.

Health care professionals are also key members of the team. Caregivers work with them to ensure that the care given at home is consistent with the best medical practices. Since health professionals played a key role in developing the home care plans, you can be sure that, if you are following these plans, you are giving the best possible health care. Health professionals are also a valuable source of information and advice about how to handle non-medical problems that come with the illness.

Family members and friends who share in caregiving are also important team members. In addition to helping in practical ways, they give encouragement and emotional support, and they can share their experiences with and knowledge of dealing with similar problems in their lives.

Successful caregivers have a positive attitude toward caregiving.  Successful caregivers emphasize the positive parts of caregiving. For example, some successful caregivers see their work as helping someone they love and care deeply about. Others see caregiving spiritually-"I think this is part of God's plan for me." Others feel that caregiving has enriched their lives. Others see it as a challenge and want to do the best job they can.

Caregiving can have important benefits. Caring for someone can give you a sense of satisfaction and confidence. Families who do caregiving often feel closer to each other and to the young person who is ill. You can also find new, rewarding friendships with other parents who are going through similar experiences. And you may discover inner strengths that you didn't realize you had.

You can also use the illness to open doors to new friends and relationships. This can happen from talking to other people who have faced the same problems, from meeting people who have volunteered to help with caregiving, and from family members and old friends who have grown distant but who are drawn together because of the illness.

Successful caregivers take care of themselves.  Helping someone who is going through cancer treatments can be difficult and stressful. The more you take care of your own need for rest, food, enjoyment, and relaxation, the better you will be able to help the young person with cancer.

Your goals for being a successful caregiver are:

• To be an effective team player working with the person with cancer, health professionals, and family members and friends in solving home care problems
• To take care of your own needs during this illness so that you have the emotional strength to be an effective caregiver.

When To Get Professional Help

Ask for help from a doctor, nurse, social worker, child life staff, clergy, or other professional if any of the following conditions exist:

You are experiencing severe anxiety or depression. Read the home care plans for Parents' Anxiety and Parents' Depression for a list of anxiety and depression symptoms, which indicate that professional help is needed.

Communication between you and other family members has broken down or has become painful or difficult. The stresses that come with cancer-physical, psychological, financial, and emotional-can hamper your ability to communicate with the young person you are caring for and with others. If anxiety and stress levels have risen to where you aren't able to talk openly about important issues, you should get professional help from a counselor, member of the clergy, hospital social worker, or hospice staff member.

What You Can Do To Be a Successful Caregiver

Working and communicating effectively with the young person with cancer.  This is your most important job. It can also be the most challenging. How to best communicate and involve the young person with cancer will be different for each child, depending on his or her age and personality. Your job is to involve the young person you are caring for as much as possible in making decisions and carrying out the plans.

Help the young person with cancer to deal with the diagnosis emotionally and to live as normal a life as possible. Some people with cancer try to deal with upsetting news by pretending that it didn't happen. This can be healthy when it helps them live as normal a life as possible. It can be harmful, however, if they do things that make the illness worse, such as avoiding treatment or doing activities that are physically harmful.

Support the efforts of the young person with cancer to live as normal a life as possible. But, if he or she is pretending that nothing is wrong, you need to be clear in your own mind about what is really happening. This is when your objectivity is important to be sure that he or she is benefiting from pretending and does not do things that could be harmful.

Create a climate that encourages sharing feelings and that supports his or her efforts to share. Talk about important or sensitive topics in a time and place that's calm and conducive to open communication-not in the midst of a crisis or a family argument. If your time for talking in your family is around the dinner table, that's the time to do it now. Try to think: When have you had important talks in the past? Strive to recreate that setting.

Communicate your availability. One of the most important messages you can communicate to the young person with cancer is this: "If you want to discuss this uncomfortable issue, I'm willing to do it." But leave the timing up to him or her. By not pressing the issue, you allow him or her to retain control over part of his or her life at a time when many issues and decisions are beyond his or her control.

When you and the young person with cancer disagree on important issues

Explain your needs openly. Sometimes you may need to ask him or her to do something to make your life easier or your caregiving responsibilities more manageable. Understand that conflict resolution doesn't always mean everybody's happy. On some issues, you'll have to give in, and on others, you'll have to ask him or her to give in.

Suggest a trial run or time limit. If you want the young person with cancer to try something (such as a new bed or a certain medication schedule) and he or she is resisting, ask to try it for a limited time, like a week, and then evaluate the situation. This avoids making him or her feel locked into a decision.

Choose your battles carefully. Ask yourself: "What's really important here? Am I being stubborn on an issue because I need to win an argument?" You can save energy by skipping the minor conflicts and using your energy and influence on issues that really count.

Let the young person with cancer be included in decisions as much as possible. Nurses, child life staff, social workers and physicians who care for your child are experienced in how to involve children of different ages in plans and decisions. Ask for their advice and guidance.

Taking care of your own needs and feelings

You need to be at your best if you are to do the best job of helping. Therefore, you should pay attention to your own needs as well as those of your child. Set limits on what you can reasonably expect yourself to do. You should take time off to care for yourself and your needs. And you should ask for help from others before stress builds up.

It is natural to have strong feelings when helping your child with a serious illness. Following is a list of common feelings that caregivers can have and strategies for dealing with them if they become severe.

Shock

Caregivers as well as the young person with cancer can feel overwhelmed and confused when they first learn about the diagnosis of cancer or when they learn that the disease is not responding to treatment or is progressing.  

Try not to make important decisions while you are upset. Sometimes you must make decisions immediately, but often you don't have to. Ask the doctor, nurse, or social worker how long you can wait before a decision should be made.

Take time to sort things out

Talk over important problems with others who are feeling more level-headed and rational. If you are feeling very upset or discouraged, then ask a friend, neighbor, or family member to help. They can bring a calmer perspective to the situation as well as new ideas and help you deal with the problems you are facing.

Anger

There are plenty of reasons for you to become angry while you are caring for your child. For example, your child may, at times, be demanding or irritating. Friends, family members, or professionals may not be as helpful or understanding as you would like. Some people feel angry because they feel that their religion has let them down. It is natural to be angry when your life has been turned upside down, which often happens with a serious illness like cancer.

These feelings are normal! It is all right to feel this way at times. It is what you do with your feelings that is important. The best way to deal with angry feelings is to recognize them, accept them, and find some way to express them appropriately. If you don't deal with your anger, it can get in the way of almost everything you do.

Here are some things that other caregivers have done to deal with their anger:

Try to see the situation from the other person's point of view and understand why he or she acted that way. Recognize that other people are under stress, too, and that some people are better than others in dealing with stressful situations.

Express your anger in an appropriate way before it gets too severe. If you wait until your anger is severe, it will impair your judgment, and you are likely to make other people angry in return.

Get away from the situation for awhile, and try to cool off before you go back and deal with what made you angry.

Find safe ways to express your anger. This can include such things as beating on a pillow, yelling out loud in a car or in a closed room, or doing some hard exercise. Sometimes it helps to vent anger with someone who is "safe"-who won't be offended or strike back.

Talk to someone about why you feel angry. Explaining to another person why you feel angry often helps you to understand why you reacted as you did and to see your reactions in perspective.

Fear

You may become afraid when someone you care for deeply has a serious illness. You do not know what is in store for him or her or for yourself, and you may be fearful that you won't be able to handle what happens. 

Learn as much as possible about what is happening and what may happen in the future. This can reduce fear of the unknown and help you to be realistic so that you can prepare for the future. Talk with health professionals to see if you are exaggerating the risks.

Read the home care plan for Parents' Anxiety The ideas and techniques in that chapter will help you to control your anxiety so that it does not interfere with your caregiving.

Talk to someone about your fears. It often helps to explain why you feel fearful to an understanding person. This helps you to think through the reasons for your feelings. Also, talking to an understanding person will show you that other people understand and appreciate how you feel.

Loss and sorrow

A serious, life-threatening illness can bring on a great sense of loss and sorrow. You may feel sad that plans that you had for the future may not be fulfilled. You may feel the loss of the "normal" child and the "normal" things you did before this illness. Memories of how he or she used to be may make you sad.

Talk about your feelings of loss with other people who have had similar experiences. People who have been caregivers for children with serious illnesses will usually understand how you feel. Support groups are one way to find people who have had similar experiences and who can understand and appreciate your feelings.

Read the home care plan for Parents' Anxiety and Parents' Depression Feelings of loss are often part of feeling depressed. The ideas and techniques in this home care plan can be used by you as well as other family members to help manage or prevent depression.

Guilt

Guilt Many people who care for someone with cancer feel guilty at some time during the illness. They may feel guilty because they think they did something to cause the cancer or because they should have recognized the cancer sooner. They may feel guilty for not doing a better job of caring for the young person with cancer. They may feel guilty because they feel angry or upset with him or her. And they may feel guilty because they are well and the person they care deeply about is sick. Some people feel guilt almost out of habit. They have learned from childhood to feel guilty when something goes wrong.

Although feeling guilty is understandable, it can interfere with doing the best possible job of caregiving. Guilt makes you think only about what you did wrong, although most problems have many causes and what you did is only part of the reason for the problem. To solve a problem, you have to look objectively at all of the causes and then develop plans to deal with the whole problem. For example, if you feel anger toward the child you are caring for, this is partly because of what he or she did as well as what you did. To deal with the cause of the anger, you have to talk openly with him or her about what you both did-and not just feel guilty about what you did and about feeling angry.

Talk to people who have had similar experiences about what happened and how they felt. It is often easier to see a situation objectively when it happens to someone else and they tell you how they coped. This can give you a perspective on your own problems.

Don't expect yourself to be perfect. Remember that you are human and will make mistakes from time to time.

Don't dwell on mistakes. Accept mistakes and get beyond them as best you can. The home care plan for Parents' Depression has useful ideas for controlling repetitive, negative thoughts, such as guilt, and for pushing them aside with positive, constructive thoughts.

Remember: You are at your best to help the young person with cancer when you feel your best. If feeling guilty makes you upset, it can interfere with being the best possible caregiver.

Possible Obstacles

Think about what could prevent you from carrying out your plan for being a successful caregiver.  Here are some things that have stood in the way of others' being successful caregivers:

"My child doesn't want to talk about feelings."

Response: Children repress feelings in many ways. Your job is to make sure the opportunities are there to talk about them when he or she decides it is right and to express feelings in play or art.

"What if she talks about things that I don't want to hear?"

Response: Even if what you hear hurts you, consider it in the larger picture of what it means to the young person to be able to express it. Remember that you don't have to solve everything or take care of upsetting feelings. You're helpful if you just listen.

"I'm swamped with problems, so I don't have time to take care of my needs."

Response: This is the most common reason that caregivers become exhausted. They become preoccupied with problems and don't pay attention to themselves. You will be a better caregiver in the long run if you take the time, especially when stress is high, to do things that you enjoy and that relax you.

"If I don't do it, it won't get done."

Response: Yes, it will. No one is indispensable. You should also sort out things that really need to be done versus what you would like to see done. It's OK to let some things, like housework or cooking, slide a bit when you take on new responsibilities.

"I hate to ask other people to help me."

Response: There are two ways around this problem. You can get together socially with people who could help and let them volunteer or you could have someone else ask them to help you.

Think of other obstacles that could interfere with carrying out your plan.  What additional road blocks could get in the way of your being a successful caregiver? For example, will the young person with cancer cooperate? Will other people help? How will you explain your needs to other people? Do you have the time and energy to carry out these responsibilities?

You need to develop plans for getting around these road blocks. Use the four COPE ideas (creativity, optimism, planning, and expert information) in developing your plans. See the chapter on Solving Problems Using the Home Care Guide for Young Persons with Cancer for a discussion of how to use the four COPE ideas in overcoming your obstacles.

Carrying Out and Adjusting Your Plan

Start using the ideas in this home care plan now. Don't wait until you feel overwhelmed. It is easier to develop good caregiving habits and attitudes early before problems get out of hand.

It is especially important to begin work early on the home care plans for for Parents' Anxiety and Parents' Depression. These plans can give you the strength and resources to deal with stressful situations. Use them early, and then have the strength and support available when you need it.

Checking on results

Every week or so you should take time to think about how you are doing as a caregiver. Look through this home care plan and ask yourself how closely you are matching the "successful caregiver" that is described at the beginning of this plan.

Be realistic about what you expect of yourself. Don't expect to be perfect. Everyone makes mistakes. It takes time to learn to be a caregiver for someone with cancer. If there are some parts of caregiving that are especially difficult for you, then ask others for help.

If you cannot do the things that are essential, then talk to the doctor, nurse, or social worker about getting the help that you need. If you become so upset that it interferes with your ability to do what needs to be done or if you are having severe depression or anxiety symptoms (see the home care plans for Parents' Anxiety and Parents' Depression), then talk to the doctor, nurse, or social worker about getting help.

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