One of the best places for people with AIDS to be cared for is at home, surrounded by the people who love them. Many people living with AIDS can lead an active life for long periods of time. Most of the time, people with AIDS do not need to be in a hospital. Being at home is often cheaper, more comfortable, more familiar, and gives them more control of their life. In fact, people with AIDS-related illnesses often get better faster and with less discomfort at home with the help of their friends and loved ones.
If you are caring for someone with AIDS at home, remember that each person with AIDS is different and is affected by HIV, the virus that causes AIDS, in different ways. You should get regular updates from the person's doctor or nurse on what kind of care is needed. Many times what is needed is not medical care, but help with the normal chores of life: shopping, getting the mail, paying bills, cleaning the house, and so on.
Also remember that AIDS causes stress on both the person who is sick and on you as you care for them. Caring for someone with AIDS is a serious responsibility. You will have to work with the person with AIDS to decide what needs to be done, how much you can do, and when additional help is needed. But, by rising to the challenges of caring for someone with HIV infection and AIDS, you can share emotionally satisfying experiences, even joy, with those you love. You can also find new strengths within yourself. But you need to take care of yourself as well as the person with AIDS.
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.