Caring for Yourself or Others with HIV/AIDS

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• Symptoms of HIV/AIDS
• Treatment Side Effects
• Opportunistic Infections (OIs)
• Nutrition
• Emotional Issues
• Additional Information on Caring for Yourself or Others with HIV/AIDS

If you have HIV/AIDS or you're caring for someone who does, there are a lot of different aspects of disease management to think about — below are just some issues to consider:

Symptoms of HIV/AIDS

Many people have no symptoms when they first get HIV — some even have no symptoms for years. However, some people with HIV get symptoms such as being very tired, quick weight loss, frequent low-grade fevers, swollen lymph nodes, and night sweats. Some health problems common in people with AIDS include coughing and shortness of breath, lack of coordination, and fever.

Treatment Side Effects

There is no cure for AIDS, but there are treatments that slow down the disease. This way, it will take more time for HIV to progress into AIDS. Despite the beneficial effects of treatment, there are side effects. Some include nausea, vomiting, diarrhea, weakness, dizziness, headache, and rash. Lipodystrophy is a very common side effect as well. Also called fat redistribution, lipodystrophy creates a problem in the way your body produces, uses, and stores fat. Project Inform offers more information about side effects.

Opportunistic Infections (OIs)

With a weakened immune system, people with HIV/AIDS can suffer from opportunistic infections (OIs). These are health problems that usually don't make a healthy person sick. You can learn more about OIs under "Living with HIV/AIDS."

Nutrition

Eating the right foods and preparing them safely is especially important for someone with HIV/AIDS. A healthy diet can help you stay strong, keep a healthy weight, help the treatment work better, keep your immune system strong, and help you get better faster after being sick. If you're having problems like a sore mouth, diarrhea, nausea, or vomiting — or maybe one of the drugs you're taking has affected your sense of taste or your appetite — eating right might be tough. Learn more about ways to have a healthy diet while living with HIV from the Food and Agriculture Organization of the U.N.

Emotional Issues

Women living with HIV/AIDS have to deal with many stressful decisions and challenges — and feelings that are hard to cope with. Some of these include dealing with the stigma of HIV; finding support; not feeling good about oneself; anger; grief and sadness; and depression. Caregivers of people living with HIV/AIDS also face a lot of stress and emotional problems. Caregiving involves a great commitment of time and energy, and can be an emotional roller coaster. It can be hard to focus on your own health and the needs of other family members.

How you feel emotionally is just as important as your physical health. To cope with these issues, it might help to talk to other people with HIV or other caregivers who can share information and ideas on how to deal with challenges. A support network can help you deal with the stresses of having HIV or caring with someone who does. Listed below are some ways to find support.

• Contact a local AIDS organization. A local AIDS organization can offer emotional support, direct you to support groups, and connect you to providers, services, medicines, and information.

• Call the CDC National AIDS Hotline at 800-CDC-INFO (232-4636). They can connect you with resources in your area.

• Find out if your health plan, including Medicaid, would pay for counseling.

• Talk to a case manager. A case manager can help you with things like paying for medicine, finding providers, directing you to housing and transportation programs, and getting childcare. You can find a case manager through your health insurance organization or at an AIDS clinic or hospital.

You may face these and many other issues with HIV/AIDS. But there is information to help you learn what you can do. The resources below will help you take the steps to prepare for these challenges and cope with them if they happen.

Additional Information on Caring for Yourself or Others with HIV/AIDS:

Publications

1.   Caring for Someone with AIDS at Home - This publication provides information on HIV/AIDS, what it is, pointers on taking care of AIDS patients, referral sources, providing support, and guarding against infections.

   http://www.cdc.gov/hiv/resources/brochures/careathome/index.htm

2.   Food Safety for Persons with AIDS - This publication from the USDA outlines the special attention that people with AIDS should give to certain foods and food preparation because of their vulnerability to illnesses.

   http://www.fsis.usda.gov/Fact_Sheets/Food_Safety_for_Persons_with_AIDS/index.asp

3.   Living With HIV/AIDS - This booklet is for people who are infected with the human immunodeficiency virus (HIV). HIV is the virus that causes the disease acquired immunodeficiency syndrome (AIDS). You might also want to share this booklet with your friends and family. It will help you, and them, understand more about HIV.

   http://www.cdc.gov/hiv/pubs/brochure/livingwithhiv.htm

4. Adherence: Keeping up with Your Meds (Copyright © Project Inform) - This publication advises HIV patients that they can keep up with their therapy by planning ahead, establishing a support network, and being committed to their therapy.

   http://www.projectinform.org/info/adherence/index.shtml

5. HIV: Coping With the Diagnosis (Copyright © AAFP) - This fact sheet provides information on how to cope with being diagnosed with HIV and the ways you can take care of yourself.

   http://familydoctor.org/online/famdocen/home/common/sexinfections/hiv/038.html

6.   Lend a Caring Hand: Tips for Home Health Care (Copyright © UNINSTRAW) - This easy to read booklet offers tips for women who are caring for someone with HIV, such as a family member or themselves. It discusses how to limit HIV transmission, the symptoms of opportunistic infections, and offers nutritional advice.

   http://www.un-instraw.org/en/docs/publications/Lend_a%20Caring_Hand-INSTRAW.pdf

Organizations

1.   AIDSInfo
2.   CDC-INFO
3.   Division of HIV/AIDS Prevention, NCHSTP, CDC, OPHS, HHS
4.   HIV/AIDS Bureau, HRSA, HHS
5. AIDS InfoNet
6. Family Caregiver Alliance
7. Hospice Foundation of America
8. National Family Caregivers Association
9. Project Inform

= Indicates Federal Resources

Content last updated January 25, 2008.