How to Get Ready to Take Care of Someone at Home

Every situation is different, but here are some tips to get you started. First, read this guide. Have the person living with HIV or AIDS read it. Have other people living in the same house as the person with AIDS read it. The information in this brochure is for both people with diagnosed AIDS and people with HIV infection who are sick and need care. If you have trouble understanding any of the words, see the glossary section. Words in the glossary are in bold print the first time they are used in this guide.

Take a home care course, if possible. Learn the skills you need to take care of someone at home and how to manage special situations. Your local Red Cross chapter, Visiting Nurses Association, State health department, or HIV/AIDS service organization can help you find a home care course. See the "Places to Call for Help" section for more information.

  Talk with the person you will be caring for. Ask them what they need. If you are nervous about caring for them, say so. Ask if it is OK for you to talk to their doctor, nurse, social worker, case manager, other health care professional, or lawyer when you need to. Together you can work out what is best for both of you.

  Talk with the doctor, nurse, social worker, case manager, and other health care workers who are also providing care. They may need the patient's permission, sometimes in writing, to talk to you, but you need to talk to these people to find out how you can help. Work with them and the person you are caring for to develop a plan for who does what. Get clear, written information about medicines and other care you'll give. Ask what each drug does and what side effects to look out for. Ask the doctor or nurse what changes in the person's health or behavior to watch for. For example, a cough, fever, diarrhea, or confusion may mean an infection or problem that needs a new medicine or even putting the person in the hospital. You also need to know whom to call for help or information and when to call them. Make a list of doctors, nurses, and other people you might need to talk to quickly, their phone numbers, and when they are available. Keep this list by the phone.

  Talk to a lawyer or AIDS support organization. For some medical care or life support decisions, you may need to be legally named as the care coordinator. If you are going to help file insurance claims, apply for government aid, pay bills, or handle other business for the person with AIDS, you may also need a power of attorney. There are many sources of help for people with AIDS, and you can help the person with AIDS get what they are entitled to.

  Think about joining a support group or talking to a counselor. Taking care of someone who is sick can be hard emotionally as well as physically. Talking about it with people with the same kind of worries helps sometimes. You can learn how other people cope and realize that you are not alone. Take care of yourself. You can't take care of someone else if you are sick or upset. Get the rest and exercise you need to keep going. You also need to do some things you enjoy, such as visit your friends and relatives. Many AIDS service organizations can help with "respite care" and send someone to be with the person you're caring for while you get out of the house for awhile.

  Signs of HIV infection are like those of many other common illnesses, such as swollen glands, tiring easily, losing weight, fever, or diarrhea. Different people have different symptoms. HIV is in people's blood, semen, vaginal fluid, and breast milk. The only way to tell if someone is infected with HIV is with a blood test. There is no vaccine to prevent HIV infection and no cure for AIDS. There are treatments that can keep infected people healthy longer and prevent diseases that people with AIDS often get. Research is ongoing. HIV slowly makes an infected person sicker and sicker. Diseases and infections will cause serious illness, but people often get better -- until the next illness. Sometimes, HIV can damage the brain and cause changes in feelings and moods, even make it hard to think clearly. Someone with 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.