Tips on Caring for a Loved One with Advanced HIV/AIDS

September 2011 | Renata Gelman, RN, BSN, Clinical Manager for Partners in Care

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Caring for a partner or loved one with advanced HIV/AIDS can be difficult for both patient and caregiver. Here are some tips to ease the difficulty. 

Caring for a partner or loved one with advanced HIV/AIDS can be a very difficult time for both the patient and the caregiver.  It is important to give both the love and support that they need without making them feel as if they have lost their freedom and independence. Partners in Care, the premier private home health care agency in the New York Metropolitan area, offers the following important tips to help guide caregivers of those with HIV/AIDS.

  1. Become a Knowledgeable Caregiver. Take time to research the disease that your loved one has. The more you understand about what they are going through, the better ability you will have to understand their needs. But don’t force them to try every “miracle cure” or new trial you research. Realize they are learning about the disease too, so there is no need to inundate them with additional information.
  1. Honor their Independence. Patients with advanced HIV/AIDS can often get depressed thinking that they are losing their independence. If they feel up to it, let your loved ones keep as much privacy and independence as possible.  Enable them to control their own schedule; don’t feel as if you need to regulate what they are and aren’t capable of.
  1. Understand their Fatigue. Patients with advanced HIV/AIDS often undergo extreme exhaustion. This might make it difficult for them to perform activities of daily living (ADLs) such as bathing, cleaning, dressing and undressing. Enlisting help from a home health aide (HHA) to help could be useful or become a necessity. The support of an HHA may also ease the feeling of burden and guilt that individuals often experience when only receiving care from loved ones.
  1. Manage their Medications. To keep them from acquiring additional infections, advanced HIV/AIDS patients are on a strict regimen of medication.  It can sometimes be complicated to keep straight and administer this “cocktail” of medications. If you don’t feel comfortable helping out or you feel that your loved one might get their various medications confused, having a nurse come in specifically to administer the medication might help comfort your loved one and ease the pain.
  1. Encourage them to Stay Social. Having any serious illness can cause a person to be upset, feel alone or become depressed. Try to stay close with friends and find new outlets of support.  Connect with support groups for people in similar situations. If you’re having trouble finding a group or individual to connect with, a social worker can help give encouragement and offer plenty of resources to help.

A caregiver’s role is not an easy one. The demands, life changes and emotions can be overwhelming. Balancing your responsibilities for your loved one as well as your own needs is difficult, but critical. Partners in Care certified home health aides, skilled nurses, and social workers have the most extensive training, supervision, screening, and language offerings of any the industry and are available to support you and your loved ones through such challenging times. For more information on Partners in Care, or to arrange a caregiver for yourself or loved one, visit or call 1-888-9-GET-HELP (1-888-735-8913).

Renata Gelman, RN, BSN, is Clinical Manager for Partners in Care, a subsidiary division of The Visiting Nurse Service of New York. She coordinates and manages a multi-disciplinary team of field nursing professionals in the clinical area of a private care division. Prior to Partners in Care, Renata was the Regional Director of Patient Care Services at the Essex Valley Nursing Association. She has over 15 years of nursing experience.