ice, 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.

Coping with depression and creating and maintaining positive experiences professionals will 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
1. Communicate effectively with the person you are caring for
2.Give support for spiritual concerns Work with health care professionals
3.Work with others who also care about the person
4. Take care of your own needs and feelings
5. 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 people 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 is:
(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. Coping with Anxiety 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. And coping with Depression will help you to control depression, especially in its early stages.

4.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 care giving 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 non spiritual 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.

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

Be clear about what you want and get to the point as soon as possible.
Make lists of questions and concerns and have them in front of you when you are talking to health professionals. Have paper and pencil ready to make notes.

Have ready all the information health professionals may need when you call.
Many of the home care plans have lists of information you should have ready when you call for professional help. For example, if the person you are caring for has a fever, have information ready on how much liquid was taken in over the past 8 hours and if any medicines were given to reduce the fever.

Bring lists of medicines to appointments.
Make a list of the names of all medicines (including over-the-counter, nonprescription medicines) that the person you are caring for is currently taking and the times that they are given. Show this list to the health care professionals each time you meet for an appointment. Some drugs do not work well together and should not be given at the same time of day or perhaps should not be taken together at all. Health care professionals will check this list and advise you and the person you are caring for on what medication is best to take and at what times it should be taken.

Be firm and straightforward about getting the information and help you need.
Professionals are there to help you to be a good caregiver. Make your requests with confidence that you will get the help you need. Feel free to say when you do not understand. Remain calm. Being angry is not usually helpful. Being pleasant, firm, and persistent and showing appreciation are usually the best strategies.

Work with others who also care about the person

6.Do not try to do everything yourself. Ask for help.
Family members, friends and people who belong to community organizations can all help out. Some can help with planning, and others will just want to help in carrying out the plans and giving support.

Those who live in the same household or who are going to be very involved in carrying out the plans should participate in actually creating the plans and should read and understand the home care plans in this book. They will then be able to work with you and with the person you are caring for as part of a team. Also, if they have had a hand in the planning, they will be more committed to carrying out the plans.

Some people want to help, but they need to be told how. It is important to be clear with them about what you would like them to do and about the limits of what is expected of them.

7.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 feeling 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 care giving. 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 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:
8. 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" (Section 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
9. 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 care giving habits and attitudes early, before problems get out of hand.
It is especially important to begin work early on the home care plans. 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 care giving 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.

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 care giving tasks, or if you are having severe depression or anxiety symptoms, then talk to the doctor, nurse, or social worker about getting help for yourself.

10. Preventing the Spread of HIV and Other Infections

1. Understanding the Problem
Many people are concerned about the ways that HIV, the virus that causes AIDS, is spread. Caregivers need good information about the risk of acquiring HIV while helping someone who is HIV-positive or who has the disease AIDS.

Fears about the spread of HIV are usually greater than the actual degree of risk. HIV is spread through any of the following three known routes:

1. Contaminated blood and blood products
2. Sexual activity with a person who is HIV-positive
3. From an HIV-positive mother to her unborn or newborn child

The first route refers to receiving contaminated blood through a transfusion or from sharing contaminated needles that are used to inject medications such as steroids and insulin or to inject illicit drugs. There is no evidence that the AIDS virus is spread by insect bites, air, water, food, or close nonsexual contacts with a person who is HIV-positive. Caregivers of persons with HIV/AIDS are not at significant risk for becoming HIV-infected while caring for such individuals, provided that they take the proper precautions,

1. The information in this home care plan fits most situations, but yours may be different.
2. If the doctor or nurse tells you to do something else, follow what he or she says.
3. If you think there may be a medical emergency,

11. When to Get Professional Help for Yourself
Caregivers who develop symptoms similar to those of HIV/AIDS may wonder whether they have contracted the virus. Sometimes they are concerned because they have engaged in activities (such as needle sharing or unprotected sexual contact) that have put them at risk. Signs and symptoms of HIV/AIDS can be similar to those of other illnesses. Consulting a doctor or nurse can clear up any doubts.

Medical emergencies
Call a physician immediately if you have been accidentally stuck with a contaminated needle or other sharp object or if contaminated material comes in contact with an open cut or damaged skin. The physician may prescribe a medication, such as AZT (zidovudine), which may reduce the risk of becoming infected with HIV.

Symptoms that do not indicate an emergency but should be reported
Call the doctor or nurse if you have had any of the following symptoms for a month or longer:
White plaques on the roof of the mouth
If the doctor, nurse, or you are concerned that you may be HIV-infected, a simple blood test can be performed. However, unless you have engaged in behavior that has put you at risk, the chance that you will become HIV-infected while caring for someone with HIV/AIDS is extremely small.

When you call, have the answers ready to the following questions:
1. At what time(s) each day does your temperature tend to rise? What is your temperature at these times?
2. Does fatigue prevent you from working or from other everyday activities? Do you sleep well?
3. Have you lost weight? If so, how much?
4. If you have diarrhea, what are the amount, frequency, color, and consistency of the stools?
5. If you have a rash, where is it located? What does it look like, and how does it feel?
6. Do you have night sweats every night? If so, how excessive is the sweating? (For example, do you have to change bed clothes during the night?)
7. If you have swollen lymph lands, where are they located? How many are there? Are they painful?
8. How does the throat, tongue, and inner portion of the mouth look? How painful is swallowing?
9. If you have a yeast infection, have you tried any over-the-counter medications?

Here is an example of what you might say when calling for professional help:
"I am Vijay shinde, Dinesh shah caregiver. Dinesh is a patient of Dr. Joshi. Dinesh tested positive for HIV 6 months ago. Now I'm not feeling well. Each evening my temperature is 100 °F. I believe my fever breaks during the night because I sweat a great deal while I sleep and wake up exhausted each morning. I believe I may become HIV-infected myself, and would like to schedule an appointment for HIV testing."

What You Can Do To Help
Here are four steps you can take to make care giving easier and safer both for yourself and for the person you are caring for:
Prevent getting HIV yourself Keep the home environment clean and safe deal with your fears of becoming infected prevent the spread of other infections to the person with HIV/AIDS

12. Prevent getting HIV yourself

13.Deal with your fears of becoming infected
As the caregiver of a person with HIV/AIDS, you may worry that you have become infected with the virus. Such fears are usually unfounded unless:
The last two items are rarely the reason for acquiring HIV.

If any of the conditions listed above occur, you may want to be tested for HIV. The results of this blood test may ease your mind. Often persons, who have been exposed to the AIDS virus, in one way or another, may need to be tested again in 3 months. Having two negative test results over a 6-month period usually means that you have not been infected with HIV. If you are still worried that you may have contracted the virus, talk to the doctor or nurse about your concerns. About becoming infected with HIV/AIDS.

Prevent the spread of other infections to the person with HIV/AIDS
The person with HIV/AIDS has poor ability to fight off new infections because of his or her failing immune system. You, the caregiver, can help reduce the risk of exposing the person with HIV/AIDS to new infections.

If you have a cold, try to arrange for someone else to provide care.
Persons with HIV/AIDS are very susceptible to respiratory infections. If at all possible, try to arrange for someone else to provide care when you have a cold or other infection. If you cannot get someone else to provide care, be careful to avoid the person you are caring for when you are coughing, sneezing, or blowing your nose. Also, wash your hands after you cough, sneeze, or blow your nose. This will help prevent passing on the germs to him or her.

Keep other people who have infections of any type away from the person with HIV/AIDS.
Decrease the number of visitors during the flu season. Remember that children acquire infections easily from schoolmates and can transmit them just as easily to the person with HIV/AIDS. Children with infectious conditions such as colds, chickenpox, and ear infections should be kept away from the person with HIV/AIDS or should be cared for in the home of a relative until they are well.

Vaccinate against common problems.
Consider influenza and pneumococcal vaccinations for both the person you are caring for and for yourself. These vaccinations reduce the chance of catching the flu and pneumonia. (Consult with your doctor about these vaccinations because they can sometimes cause illness.)

Wash hands often.
It is important that, you both, the caregiver and the person with HIV/AIDS wash your hands frequently to prevent infections. It is especially important that you wash your hands after using the toilet, after having your hands in soil, after handling pets or their toys, and before, as well as after, preparing food. Also, keep fingernails clean and do not bite them.

Check with the doctor before having the children or adults in your home receive immunizations or booster shots.
Checks with the doctor before having a child with HIV/AIDS receive immunizations or booster shots because these can sometimes cause illness. Also, check with the doctor before children or adults who live with a person with HIV/AIDS are vaccinated because they may "shed" vaccine strains of germs that could cause illness in the person with HIV/AIDS.

Use plastic and washable toys for children with HIV/AIDS and their friends who visit.

Encourage the person with HIV/AIDS to avoid using "recreational drugs" and having unprotected sex.
Needles, pipes, and other drug equipment can spread other infections to the person with HIV/AIDS, as can unprotected sex.

Discourage the person with HIV/AIDS from eating raw, unwashed fruits and vegetables, raw and undercooked meat, poultry, and fish, and from drinking unpasteurized milk.
Bacteria found in raw and undercooked foods can cause various infections in the person with HIV/AIDS. Wash meat, poultry, and fish before cooking, and clean off surfaces that they have touched.

Have household pets cared for by persons other than the person with HIV/AIDS.
Pet droppings contain high levels of bacteria and fungi that can be easily transmitted to the person you are caring for.

14. Possible Obstacles to Care giving

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

"I can't take care of my son because I'm too afraid of getting AIDS from him." Response: The AIDS virus is not spread by caring for someone with HIV/AIDS. Most often it is sexual contact or contact with the blood of a person with HIV/AIDS that spreads the virus. However, whether or not HIV/AIDS is transmitted through saliva is still unknown. Cooking, washing, cleaning, talking, touching, or helping the person with HIV/AIDS does not usually involve contact with blood or saliva, so these fears are usually unfounded.

"We've limited visitors in our home since my daughter came down with AIDS, because I would hate for a friend or neighbor to catch AIDS because of her illness."
Response: Visitors do not need to stay away and family members do not need to live in fear of contracting AIDS by simply being in the presence of someone who is HIV-positive or has AIDS. Have them read this section so that they understand how HIV/AIDS is spread.

Think of other obstacles
Identify additional roadblocks that could keep you from following the recommendations of this home care plan.
Carrying Out and Adjusting Your Plan
Checking on results
Review this section regularly to be sure that you are doing everything you can to prevent the spread of HIV/AIDS and the spread of other infections to the person you are caring for.
What to do if your plan does not work
1. Review this section
2. If you find that you have skipped something, try it now.
3. Ask the doctor for further guidance if you continue to be worried about spreading infections or the HIV/AIDS virus.
 
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