Getting Started

A few things to consider before beginning to care for someone with HIV.

Each caregiving situation is different, but here are some things everyone should consider when preparing to care for a loved one with HIV.

  • Take a course in home care, if possible. Learn the skills you need to take care of someone at home and how to manage special situations. You find a home care course through your local Red Cross chapter, Visiting Nurses Association, State health department, or HIV/AIDS service organization.
  • Talk with your loved one. Find out what he or she needs. If you’re nervous about the situation, tell your loved one. Always ask permission to talk to his or her doctor, nurse, social worker, case manager, and/or lawyer beforehand. Together you can work out what is the best for both of you.
  • Talk with the health care workers who are also providing care for your loved one. Health care professionals may need to get your loved one’s permission, to speak with you, but you need to talk to these people to find out how you can help. Work with health care professionals and your loved one to develop a specific care plan.
  • Get clear, written information about medicines and other medical matters from professionals. Find out what each drug does and potential side effects.
  • Ask the doctor about changes in your loved one’s health or behavior. For example, a cough, fever, diarrhea, or confusion may indicate a problem that requires immediate medical attention.
  • Make a list of doctors, nurses, and other people you might need to talk to quickly, write down their phone numbers and keep them by the phone.
  • Talk to a lawyer and/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’re going to help file insurance claims, apply for government aid, pay bills, or handle other business, you may need a power of attorney.
  • Consider joining a support group or talking to a counselor. Taking care of someone who is infected with HIV can be emotionally and physically demanding. Talking with other caregivers can help you. You can learn how others cope and realize that you’re not alone.
  • Take care of yourself. You can’t take care of someone else if you’re sick or upset. Get the rest and exercise you need to keep healthy. Do some things that you enjoy, such as visiting friends and relatives. Many AIDS service organizations can help provide “respite care” for your loved one while you get out of the house for a while.

© Copyright FamilyCare America, Inc. All Rights Reserved.

Adapted from Caring for Someone with AIDS at Home: A Guide, ACTIS Publication No. D817, United States Department of Health and Human Services, AIDS Clinical Trial Information Service.

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