By Strength for Caring

A diagnosis of HIV can cause significant stress and change for your loved one and for you as a caregiver. With dramatic breakthroughs seen in HIV/AIDS research in recent years, many people with HIV are enjoying long and productive lives. Often, it is the person involved in the support and care of a loved one with HIV who plays a major role in the overall well-being and quality of life of their loved ones.

Understanding and learning about a loved one’s disease state can help you feel better prepared to support your loved one. For many people, fearing the unknown can be crippling. Worrying about a disease state with no knowledge about it can use up a lot of energy that could be better spent helping your loved one. Therefore it is important to know the fundamentals of HIV, including how it is transmitted and some symptoms.

AIDS (Acquired Immunodeficiency Syndrome) is caused by HIV (Human Immunodeficiency Virus). People infected with HIV can look and feel healthy and may not know for years that they are infected. However, they can still infect other people. HIV slowly wipes out parts of the body’s immune system. The HIV-infected person gets sick because the body can’t fight off diseases.

The most common ways HIV is spread are:

• Through unprotected anal, vaginal, or oral sex with someone infected with HIV
• Through sharing needles or syringes (“works”) with someone who is infected with HIV
• From mothers to their babies before the baby is born, during birth, or while breastfeeding. Taking certain medicines during pregnancy can reduce the chances of infecting the baby but will not always prevent babies from becoming infected with HIV.

How HIV is not spread:

• You don’t get HIV from the air, food, water, insects, animals, dishes, knives, forks, toilet seats, or anything else that does not involve blood, semen, vaginal fluids, or breast milk
• You don’t get HIV from feces, nasal fluid, saliva, sweat, tears, urine, or vomit unless these have blood mixed in them
• You can help people with HIV get dressed, eat, and even bathe, without becoming infected yourself. You do get other germs from many of the other things listed above, so use common sense.

Symptoms of HIV

Signs of HIV infection are like those of many other common illnesses such as:

• Swollen Glands
• Tiring Easily
• Losing Weight
• Diarrhea

But the only way to know for sure is with a positive HIV test.

If your loved one has been diagnosed with HIV, it is important to know that HIV slowly makes an infected person sicker and sicker. Although diseases and infections will cause serious illnesses, people often get better…until the next illness.

Sometimes, HIV can damage the brain and cause changes in feelings and moods, even making it hard to think clearly. Someone with HIV or AIDS can feel fine in the morning and be very sick in the afternoon. It can seem like riding a roller coaster, slowly climbing up to feeling good, then plunging down into another illness.

Treatment for HIV

There is no vaccine to prevent HIV infection and no cure for AIDS. However, there are treatments that can keep infected people healthy longer and prevent diseases that people with AIDS often get. Research is ongoing.

Once you become more knowledgeable about HIV/AIDS, you can work with your loved one’s doctor to find the appropriate treatment plan, and learn about various medications and potential side effects. Learning about treatments, and any specific requirements, will help you support your loved one.

Nutrition and HIV

Proper nutrition can be a problem for people with HIV.  In order to fight the infection, the body requires more energy, which means your loved one will need to eat more than normal. This is compounded by the fact that your loved one may feel sick and may not want to eat. Additionally, any calories consumed should be consumed for energy and health. Poor nutrition, including not eating or not eating well, can lead to what is known as “wasting.” Wasting can diminish a person’s ability to carry out daily activities, and can increase the severity of the illness. This can increase the risk of death from HIV.

As a caregiver of a person with HIV, it is important that you help your loved one eat healthfully, and that you pay careful attention to whether your loved one is losing weight. Losing more than 5% of the total body weight can be a sign of wasting. In the event that wasting or rapid weight loss occurs, a healthcare professional should be consulted immediately. Please see our article on Nutrition & Wellness for a Loved One with HIV/AIDS for information about specific food recommendations and ideas.

Diarrhea and HIV

If diarrhea occurs, valuable nutrients cannot be absorbed and are literally flushed out of the body. If the discomfort of diarrhea makes the person you are caring for afraid to eat, try foods such as applesauce, potatoes without the skin, hot cereal, rice, bananas, and crackers. Caffeine-free liquids such as broth, fruit juice, sports drinks, and ice chips or water are recommended to replace fluid losses.

Exercise and HIV

Encouraging an exercise program can help your loved one with HIV live a stronger, more productive life and can help manage the side effects of this illness. As a caregiver, you may need to help your loved one get started with an exercise regimen. As always, be sure to contact your doctor and your loved one’s doctor to get the green light before engaging in any exercise program.

With the permission of your healthcare professionals, you may wish to consider long walks with your loved one as a way to get outdoors, and get some exercise.

Fatigue is a common symptom in patients with HIV/AIDS. There are many different causes of fatigue, including pain, infection, fever, lung or breathing abnormalities, hormonal or nutritional problems, depression, anxiety, anemia, sleep disturbances, and even too much inactivity or rest.

As a caregiver for a loved one with HIV, it is important to identify patterns of fatigue associated with infection and treatment. Try to encourage a balance between activity and rest.

Please see our article on Nutrition & Wellness for a Loved One with HIV/AIDS for more information on exercise for a loved one with HIV.

Pain Management

The key to pain management in individuals with HIV is communication with a healthcare professional about the pain. The duration of pain, severity of pain, and the possible causes of pain are important factors. If your loved one is unwilling to share this information with a healthcare professional, perhaps he or she will open up to you, and you can communicate the pain symptoms to their healthcare professionals.

Psychological and Emotional Issues

People with HIV and those who are close to them may experience many things that can affect their mental health. Fear and anxiety are common reactions to the initial diagnosis of HIV/AIDS. In addition, stressful and confusing healthcare programs, the thought of complicated treatment, and the sadness and grief of possibly living a shorter life can all contribute to a decline in mental health.

Coping with stress, anxiety, and feelings of depression through the course of HIV disease can be overwhelming for your loved one. As a person caring for someone with HIV, it is important to provide both social and emotional support.   However, it can become overwhelming for you, too, so make sure you have a support system in place for yourself.  In addition to friends and family, the organizations below have wonderful resources.

Educational, Advocacy and Service Resources

AIDS Alliance for Children, Youth, and Families

AIDS Action

Elton John AIDS Foundation

Gay Mens Health Crisis

National Minority AIDS Council

National Association of People With AIDS

Project Inform

The Body

POZ magazine

AIDS Education Global Information System

Aids.org

Medscape HIV/AIDS

AIDS Treatment Data Network

AIDSMeds.com

National AIDS Treatment Advocacy Project

National Institute of Health AIDS Information

HIVInfo.US