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Chapter 2

Caregiving

Overview of the Home Care Plan for Caregiving

1. Learning How To Be a Caregiver

Caregivers work to solve problems
Caregivers work as a member of a team
Caregivers work to have a positive attitude toward caregiving
Caregivers take care of themselves
Your goals

2. When To Get Professional Help for Yourself

3. What You Can Do To Be a Supportive Caregiver

Communicate effectively with the person you are caring for
Give support for spiritual concerns
Work with health care professionals
Work with others who also care about the person
Take care of your own needs and feelings

4. Possible Obstacles

5. Carrying Out and Adjusting Your Plan

Checking on results
What to do if your plan does not work

Topics with an arrow () in front of them are actions you can take or symptoms you can look for.

1. Learning How To Be a Caregiver Caregivers work to solve problems

Caregivers are problem solvers. You have been solving problems throughout your life. The only difference now is that many of the problems that come with HIV/AIDS are new to you and to the person you are helping. The Home Care Guide for HIV and AIDS will help both of you to solve these new problems; it will give you information and guidance organized into steps.

The plans are designed to help you solve problems, but you and the person with HIV/AIDS are the ones who will actually solve the problems. You decide what actions to take. You carry out the plans and adjust the plans to meet your special needs. You keep track of how well the plans are working and make changes as needed. Sometimes you will also need to develop new plans on your own to deal with problems that are not discussed in this book.

You and the person you are caring for are in charge of dealing with your problems. You are not people who are simply following instructions but are people who are making decisions and taking action.

Caregivers work as a member of a team

Good caregiving is not done alone—it requires a team of people with different skills and perspectives. Physicians, nurses, social workers, and clergy make important and unique contributions to care. But family members, friends, and volunteers are also important contributors. You have (or will develop) a close, personal relationship with the person who is ill—so you play a key role in involving the ill person in his or her care. Your close personal relationship helps you to understand and interpret the feelings, desires, and needs of the person who is ill. And, very importantly, you are the first to become aware of many physical and emotional problems and the first to deal with those problems; often you are the person who carries out the plans that you and other team members develop.

As a team member, your job is to work cooperatively with other members of the team in solving caregiving problems. To do this, you need to use the COPE problem-solving methods. You need to collect facts and develop an understanding about the disease, get expert information or guidance on actions to take, develop a plan about the disease, and then carry out that plan while keeping other members of the team informed. Most important, you need to have an optimistic and realistic attitude, and, as much as possible, you should keep the person you are caring for informed about and involved in his or her care.

Caregivers work to have a positive attitude toward caregiving

Emphasize the positive aspects 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. Some caregivers see it as a challenge and as an opportunity to do the best job they can. Still others see caregiving as a way of showing appreciation for the love and care that they have received themselves.

Caregiving can have important benefits to the caregiver. Caring for someone can give you a sense of satisfaction and confidence. Family members who provide care often feel closer to each other and to the person who is ill. You may discover an inner strength that you may not even have realized you had.

You may also find new, rewarding friendships with other caregivers who are going through similar experiences. These friendships may develop by talking to other people who have faced the same problems, by meeting people at a support group, by meeting people who have volunteered to help with caregiving, and by renewing relationships with family members and friends who have grown apart but who are drawn together because of the illness.

Caregivers take care of themselves

Helping someone with a serious illness such as HIV/AIDS is a big responsibility, especially as the illness progresses. The person you are caring for can become very dependent on you. Often, you will need help to carry out your job as a home caregiver. Learn what help is available to you in the community and ask health care workers and clergy how you can get additional help. The home care plan "Getting Help from Community and Volunteer Groups" (Chapter 21) provides suggestions on how to go about getting additional help. The more you take care of your own need for rest, food, recreation, and relaxation, the better you will be able to help. The home care plans "Creating and Maintaining Positive Experiences" (Chapter 19) and "Getting Companionship and Support" (Chapter 20) apply as much to you as to the person you are helping. Use the ideas in those guides for yourself to be able to do your best as a caregiver.

Your Goals

• Know when to get professional help for yourself
• Communicate effectively with the person you are caring for
• Give support for spiritual concerns
• Work with health care professionals
• Work with others who also care about the person
• Take care of your own needs and feelings

2. When To Get Professional Help for Yourself

Ask for help from health professionals or from a member of the clergy if any of the following are true:

You are experiencing severe anxiety or depression.
See the home care plans "Coping with Depression" (Chapter 17, pp 196-198) and "Coping with Anxiety" (Chapter 18, p 215) for a list of symptoms that indicate professional help is needed.

Communication between you and the person you are caring for has broken down or has become painful or difficult.
The stresses that come with HIV/AIDS—physical, psychological, financial, and emotional—can hamper your ability to communicate with the person you are caring for. If your anxiety and stress levels have increased to the point where you are not able to talk openly about important issues, you should get professional help from a health professional, hospice staff member, home health staff member, counselor, or social worker.

Your relationship with the person you are caring for is clouded by a history of abuse, addiction, or conflict.
If you have suffered verbal, mental, physical, or sexual abuse at the hands of the person you are caring for, or if the person you are caring for has a history of alcohol or drug addiction that has affected the relationship in the past, then you are likely to have serious problems in caregiving. Such caregivers already have strong and deep-seated feelings, usually built up over many years. This situation calls for professional help from the start.

You are feeling overwhelmed by your responsibilities as caregiver, and do not know whom to call to find out how to get extra help at home.
This is a common concern. The home care plan "Getting Help from Community Agencies and Volunteer Groups" (Chapter 21) deals specifically with this problem. Also, ask for help from the clinic nurses; from the social workers who work at the clinic, doctor's office, or hospice; or from the visiting nurses. They can help you to get the help you need.

You are considering moving the person to a nursing home or other setting.
Social workers who are experienced in working with persons with HIV/AIDS can help you think through this issue. They understand the kind of care that is needed by persons with HIV/AIDS as well as what services different settings offer. Physicians and nurses, especially home health nurses, can also be of help.

You are feeling depressed or lonely.
See the home care plan "Coping with Depression" (Chapter 17) and "Creating and Maintaining Positive Experiences" (Chapter 19). They give guidance on dealing with depression and on recognizing the signs that professional help is needed.

3. What You Can Do To Be a Supportive Caregiver

Here are five steps you can take to be a supportive caregiver
Communicate effectively with the person you are caring for
Give support for spiritual concerns
Work with health care professionals
Work with others who also care about the person
Take care of your own needs and feelings

Communicate effectively with the person you are caring for

This is your most important responsibility as a caregiver, and it can also be the most challenging. The person you are caring for has to deal with the physical effects of the disease and the medicines as well as with the psychological and social challenges of living with HIV/AIDS. This may make it difficult for him or her to participate in the home care plans. Nonetheless, your job is to involve the person you are caring for as much as possible in making decisions and carrying out the plans. You should support his or her efforts to deal with the reality of the prognosis emotionally. You can do this by

Helping the person you are caring for to accept that he or she has HIV/AIDS
Some people with HIV/AIDS try to deal with upsetting news by pretending that it has not happened. This is known as "denial." Denial can be a normal response and healthy when it helps the person live as normal a life as possible. It can be harmful, however, if it leads him or her to do things that make the illness worse, such as avoiding taking medicines or engaging in activities that are physically harmful (for example, drug abuse).

Sometimes what looks like "denial" is actually the person's attempt to protect loved ones from the hard realities of the illness. If this is the case, you should reassure him or her that you are willing to listen and talk about all aspects of the illness—even though it may be hard for both of you.

Support the efforts of the person you are caring for to have as normal a lifestyle as possible. However, a "normal" lifestyle should not include engaging in potentially harmful activities. If he or she is pretending that "nothing is wrong," you need to remain clear-sighted—to help ensure that he or she is not taking health risks.

Creating a climate that encourages the sharing of feelings and that supports the ill person's efforts to share
Talk about important or sensitive topics at a time and place that are calm and conducive to open communication—not in the midst of a crisis or a family argument. Think about when you have had important talks in the past and try to recreate that setting.

Communicate your availability. One of the most important messages you can communicate to the person with HIV/AIDS is "If you want to discuss this uncomfortable issue, I'm willing to do it." But leave the timing up to him or her. To the greatest extent possible, let decisions on what feelings to share and on when, how, and with whom to share them be made by the person you are caring for. At this time in the person's life, many issues and decisions are beyond his or her control. By not pressing the issue, you allow the person to retain control over this part of his or her life.

Understanding that conflicts can arise when home caregivers are not family members
Sometimes families are estranged from the person with HIV/AIDS. They have not been in touch or are not talking. When the person with HIV/AIDS selects a home caregiver who is not a family member, conflicts can arise between this caregiver and the family. Any conflicts that arise between family members and others who want to be home caregivers should be resolved by asking the ill person what he or she wants and working out a compromise to that end. It is important to stress that a home caregiver need not be a family member. Whatever the relationship, the only requirement for being a caregiver are (1) an honest commitment to the ill person and (2) his or her desire and permission for you to help.

Being realistic and flexible about what you hope to communicate or agree on
People with HIV/AIDS want to share many things, but they may not share all of them with the same person. Let the person you are caring for talk about whatever he or she wants with whomever he or she wants. It is OK if the person is not telling you everything, as long as he or she is telling somebody. Also, remember that he or she may have spent a lifetime developing a communication style and that this will not change overnight. Some people have never felt comfortable talking about their feelings. Try to accept that this will not change now.

Sharing does not always mean talking. The person with HIV/AIDS 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 facial expressions, touching, or just asking that you be present.

Remember that you do not have to agree. No two people are always going to see eye-to-eye. Although you and the person you are caring for may disagree on issues such as when, how, and what to share, remember that this is one of the patterns of life that cannot always be resolved.

Helping the person you are caring for to deal with anxiety and depression
People with HIV/AIDS may become anxious about medical procedures, about the disease, or about the future. Their anxiety may also be a side effect of medicines they are taking or of the disease itself. The home care plan "Coping with Anxiety" (Chapter 18) can help the person you are caring for decide how to deal with such feelings.

Many people with HIV/AIDS also feel depressed at some time during the illness. The home care plan "Coping with Depression" (Chapter 17) gives advice on how to control depression, especially in its early stages. Both you and the person you are caring for should read these chapters and work together as a team.

When you and the person with HIV/AIDS disagree on important issues:

Explain your needs openly.
Sometimes you may need to ask the person with HIV/AIDS to do something to make your life easier or make your caregiving responsibilities more manageable. Understand that conflict resolution does not always mean everyone is happy. On some issues you will have to give in; on others, the other person will need to give in.

Suggest a trial run or time limit.
If you want the person you are caring for to try something new (such as a new bed or a certain medication schedule) and he or she is resisting, ask him or her to try it for a limited time—for example, for 1 week—and then to evaluate the situation. This avoids making the person feel locked into a decision. If, for example, the person resists writing a will or power of attorney, ask if he or she will at least read one over and discuss it.

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 or be in control?" Decide to try to avoid or ignore the minor conflicts and instead use your energy and influence for important issues.

Let the person you are caring for make as many decisions as possible.
If the person you are caring for understands the consequences of a given decision, the caregiver should accept the person's right to make that decision. Taking away a person's ability to make decisions can undermine feelings of control, which interferes with the ability to deal with other aspects of this stressful illness.

Give support for spiritual concerns

Spiritual questions usually become important after physical, emotional, and social problems have been resolved or are under control. Therefore, by attending to nonspiritual problems, you are enabling the person you are caring for to begin to consider fundamental spiritual issues.

Spiritual concerns raise fundamental questions about life such as "Why are we here?" "What is a good life?" or "What happens after death?" These profound questions become especially important when dealing with a potentially terminal illness. As a caregiver, your job is to support the person you are caring for in thinking through his or her personal answers to these questions.

He or she may want to make sense of life experiences—to reminisce—to talk about the past and to look for meaning in what has happened. As a caregiver, listening is the most important thing you can do to help. You may also share your experiences and feelings, but your main way of helping is to listen!

Spiritual questions are not answered easily, and for many, definite answers are not possible. For those whose faith gives answers and solace, your support of that faith will be helpful and appreciated. For those who are troubled by uncertainty, you may help by sharing your own questions and uncertainties—thereby showing that their concerns are normal and reasonable.

Work with health care professionals

Below are some practical suggestions to keep in mind when you need information and help from health professionals.

Work with others who also care about the person

Take 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 the person you are helping. 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 before stress builds up.

It is natural to have strong feelings when helping someone with a serious illness. The following is a list of common feelings that caregivers may have, and the strategies for dealing with these feelings if they become severe.

Feeling overwhelmed

Caregivers as well as the person with HIV/AIDS may feel overwhelmed and confused when they learn that the disease is progressing.

Here is how you can deal with feeling overwhelmed:

Anger

There will be many reasons for you to become angry while you are caring for a person with HIV/AIDS. For example, the person you are caring for may be demanding or irritating at times. Friends, family members, or professionals may not be as helpful or understanding as you would like them to be. Some people feel angry because their God seems to have somehow let them down. Others are angry at the disease itself. It is natural to be angry when your life feels like it has been turned upside down by a serious illness like HIV/AIDS.

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 ways you can deal with your anger:

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 will not be able to handle what happens.

Here are ways you can deal with your fears:

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" person and the "normal" things you did before this illness. Memories of how he or she used to be may make you sad. You may also feel burdened by more responsibilities that you have to deal with alone.

Here are ways you can deal with loss and sorrow:

Guilt

Many people caring for someone with HIV/AIDS feel guilty at some time during the illness. They may feel guilty because they blame the person for his or her illness. They may feel guilty because they are well and the person whom they care about so deeply is sick. They may feel guilty for having caused or added to the problem. Or, they may feel guilty for not doing a better job of caring for and supporting the person with HIV/AIDS. They may feel guilty because they feel angry or upset with him or her. 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, while 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 person you are caring for, often 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 need to talk openly with him or her about what you both did. Feeling guilty will not the solve the problem.

Your goal here is to work toward forgiveness for yourself and for the other person. Dwelling on guilt feelings about the past will rob you of precious energy that you need to cope with the present.

Here are ways of dealing with guilt:

4. Possible Obstacles

Here are some attitudes, fears, and misconceptions that could prevent you from carrying out your plan

"The person I am caring for doesn't want to talk about his feelings."

Response: He is the best judge of that. Your job is to make sure that you are available to listen when and if he decides to talk about feelings.

"What if the person I am caring for talks about things that I don't want to hear?"

Response: Even if what you hear hurts you, consider it in the larger context of what it means to her to be able to express herself. Remember that you don't have to resolve everything. You are being helpful just by listening.

"The person I am caring for won't follow my advice."

Response: If you are feeling frustrated because the person you are caring for will not follow your advice, try to understand how important it is for him or her to retain some control. You may know what is best for the person you are caring for, but realize that your job is to be supportive, not to make decisions for him. If you have a dominant personality or have been the one to make decisions in your family, be prepared to practice letting go of control.

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

Response: This is the most common reason that caregivers become exhausted: They become so preoccupied with problems that they do not 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 get help so that you can do things that you enjoy and that relax you.

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

Response: Learn to ask others for help. You should also sort out things that really need to be done versus what you would like to see done. It is OK to let some things, like housework, slide a bit when you take on new responsibilities.

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

Response: There are two ways of getting around this problem. You can get together socially with people who could help and let them volunteer or you could have someone else ask for help for you. Read the home care plan "Getting Companionship and Support" (Chapter 20) for ideas about how to make visits from others pleasant and rewarding. Then they will want to visit and help.

"The person I'm helping doesn't want other people to help us."

Response: Suggest trying to get help for just a short time, and then you both can talk over how it worked out. Also, explain that you need help too.

Think of other obstacles

Identify additional roadblocks that could keep you from following the recommendations of this home care plan.

• Will the person I am caring for cooperate?
• Will other people help?
• How can I explain my needs to other people?
• Do I have the time and energy to carry out my plan?

You need to develop plans for getting around roadblocks. Use the four COPE ideas (Creativity, Optimism, Planning, and Expert information) in developing your plans. See pp 4-8 for a discussion on how to use the four COPE ideas in overcoming your obstacles.

5. Carrying Out and Adjusting Your Plan

Carrying out your plan

Start using the ideas in the Home Care Guide for HIV and AIDS now. Do not 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 "Creating and Maintaining Positive Experiences" (Chapter 19) and "Getting Companionship and Support" (Chapter 20). They apply to you, the caregiver, as much as they do to the person you are caring for. These chapters can give you the strength and resources to deal with stressful situations. Use them early so that you will have strength and support available when you need it.

Be realistic about what you expect of yourself. Do not expect to be perfect. Everyone makes mistakes. It takes time to learn to be a caregiver for someone with HIV/AIDS.

Ask others for help if there are some parts of caregiving that are especially difficult for you.

Be realistic in your expectations for sharing feelings. Most people do not change their styles of communicating quickly.

Checking on results

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

What to do if your plan does not work

If you cannot do the things that are essential for the person you are helping, talk to a doctor, nurse, or social worker about getting the help that you need.

If you become so upset that your emotions interfere with your ability to perform your caregiving tasks, or if you are having severe depression or anxiety symptoms (see the home care plans "Coping with Depression" [Chapter 17] and "Coping with Anxiety" [Chapter 18]), then talk to the doctor, nurse, or social worker about getting help for yourself.

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