AIDS, or acquired immunodeficiency syndrome, is a disease caused by the human immunodeficiency virus (HIV) that destroys the body’s natural ability to fight illness. When this virus causes a breakdown in the body’s immune system, it allows diseases such as rare cancers and pneumonias to develop. HIV is transmitted through exposure to blood, semen and vaginal secretions. No one actually dies of AIDS—it is usually one or more of the nearly 25 known AIDS-related illnesses that eventually causes death to occur. Currently, there is no known cure for AIDS.

Everyone suffers the devastation of this illness—male and female, young and old, heterosexual, bisexual and homosexual, rich and poor, and members of various ethnic or cultural backgrounds.

Reactions to an AIDS-Related Death

When someone you love has died of complications associated with AIDS, you will most likely experience many common emotions of grief. Grief is the process of adjusting to life without the presence of the person who has died.

According to grief experts, when a significant person in our life dies, we frequently experience different phases of bereavement that usually begin with the initial shock, numbness and denial of the loss. We move toward other phases that may include feelings of sadness, despair, anger and even guilt, until we eventually respond to the death with decreasing emotional pain.

People fill different roles and needs in our lives, and we will grieve for the unique relationships we have shared. The amount of time it takes to adjust to the loss varies from person to person. Although grief is a common experience, we may feel extremely isolated. We may experience depression, or a sense of being out of control. In the event of a chronic illness such as AIDS, feelings of release and relief that the person has finally died and is no longer suffering may be mixed with our grief.

When we grieve, many of us find if helpful to share our experiences with supportive individuals in our lives. Mourning, the public expression of our grief, is an important part of the grieving process. Talking, crying and expressing our pain, anger or guilt with someone who will listen can help us work through our grief. Many experts believe that when we are unable to share our grief, or are not supported by others, bereavement can be more difficult to resolve.

A death due to an AIDS-related illness may be one of the most challenging losses with which to cope. The deep stigma and fear associated with AIDS may result in additional trauma to those suffering from the disease, as well as to their significant others. Many persons with AIDS, including children, are discriminated against, subjected to ridicule and rejection and even suffer acts of physical violence. Some are abandoned by their families.

When an AIDS-related death occurs, survivors may be reluctant to disclose the cause of death. Some survivors may become “hidden grievers” because they fear rejection or discrimination. These “hidden grievers” may have been closely related to or intimately involved with the person who has died, or they may have been casual friends or coworkers. “Hidden grievers” may choose not to have or attend funeral services or to disclose the loss to others.

Some survivors of a person who has died of an AIDS-related illness may be HIV infected themselves and/or have significant others who are HIV infected. These survivors may experience what is called “anticipatory grief” over the eventual death of a spouse, life partner, friends or perhaps their own death. Not only will they mourn the current loss, but grief may begin for the losses yet to come.

There also are those who have suffered numerous deaths of friends due to AIDS-related illnesses. “Bereavement overload” occurs when we are grieving the loss of someone significant in our lives, and several other deaths rapidly follow. Most grief experts believe that when we do not adequately resolve a previous death, the grief is compounded by each additional loss. Because stress is a known factor in the onset and acceleration of certain illnesses, HIV infected persons should be especially diligent in finding healthy ways to manage the stress caused by “bereavement overload.”

Grief may become complicated by unexpressed anger and guilt. Some survivors may feel angry because of the manner in which the illness was contracted. Others may feel guilty because they unknowingly transmitted the virus. It also is common for some survivors to feel guilty because they remained healthy when their child, spouse, life partner or friend has died. Whether or not these emotions seem rational, they need to be addressed in order for the healing process to take place.

Regardless of the circumstances surrounding the death or relationship to the person who has died, the private grief experienced can become easier to manage with the support of others who listen and allow us the opportunity to express our feelings. After the death, a time to begin building this additional support is during the visitation or final services.

Funeral Arrangements

The National Funeral Directors Association (NFDA) believes that everyone, regardless of the cause of death, is entitled to complete services. The funeral director is committed to serving the varied needs of all persons and communities. Your funeral director can inform you of the various types of ceremonies and available professional services and assist you in making meaningful decisions.

Conflicts that may have existed among survivors before the death may become accentuated due to the emotional intensity of grief. In situations where there is emotional distance between survivors, your funeral director may be able to facilitate the resolution of these conflicts or refer you to a mental health professional or clergyperson who also is familiar with the issues present in an AIDS-related death.

Survivors who are initially unable to reconcile differences regarding the final services may be able to find a compromise that is acceptable to all parties. For example, survivors may choose to hold separate visitations or funeral services as a means of meeting their needs. Grief experts recommend acknowledging and including all survivors to as great an extent as possible in order to promote the healing that begins during this difficult time.

The visitation and final services often provide an opportunity to express emotions and to gather support. It is important to express your individual needs to the clergyperson or whoever will officiate. Many people view the ceremony as a time to celebrate a life that has been lived and to share how that person has touched their individual lives. Grief experts often encourage active participation in the ceremony by the survivors to help adjust to the death. Testimonials, eulogies, music, photographs and even video presentations are but a few of the ways in which those present may participate in the ceremony.

Memorializing a life can be an important part of the grieving process. Many survivors find commemorative activities helpful, such as sewing a panel for the NAMES Project AIDS Memorial Quilt, planting a tree in memory of the one who has died or establishing a memorial fund. Working through grief involves reflecting on hundreds of memories of life shared with the deceased. Sharing memories with others while participating in these or even routine activities can bring additional support and healing.

Information for Family and Friends

Inaccurate information, myths and fear have been closely associated with AIDS. Here are examples of some commonly asked questions.

Is it true anyone who dies of an AIDS-related illness must be cremated or buried in a sealed casket?

No. A person who dies of an AIDS-related illness is entitled to the same service options afforded to anyone else. The customary way to accommodate grieving survivors is in a funeral setting of their choice. If public viewing is consistent with local or personal customs, that option is encouraged.

Consulting with the funeral director of your choice prior to immediate need can help to ensure that the type of funeral services you desire can be arranged.

Can I become infected with HIV by touching the body of someone who has died of an AIDS-related illness?

No. All evidence shows that casual contact, such as touching the deceased’s face or hands is perfectly safe. However, precautions may be necessary in some cases, depending on the cause of death and the condition of the body. Ask your funeral director for information and assistance if you feel uncomfortable.

Can HIV infected persons attending the visitation or service spread the virus?

No. Touching such as handshaking, hugging and casual kissing are all safe and encouraged. Remember, people who are HIV-infected or in active stages of AIDS are grieving many losses. They need and deserve our compassion, understanding and support.

An AIDS-related death can be such a frightening and difficult experience. What should I say or do to help the survivors?

Especially after the services are over, survivors tend to need added support to help in the healing process. Spending time in the homes of these survivors can help them feel less isolated and provide companionship at a time when they may not want to be alone.

You may want to say very little, other than express your sorrow for the loss they have suffered. Listening, providing physical comfort and being available when they need you are extremely beneficial. Holidays, birthdays and the anniversary of the death may be especially difficult for the survivors. Acknowledging a significant date with a telephone call or personal note often is appreciated. Don’t be afraid to use the name of the deceased.

Resolving grief doesn’t mean forgetting people who have died; it means adjusting to life without them. Ask your funeral director for additional information about grief and suggestions for supporting others.

Additional Information and Support

While many concerns exist, there are many resources with considerable expertise in working with those individuals directly affected by AIDS. Support personnel at the local, regional and national levels are easily accessible and concerned about the many issues addressed in this brochure.

Your funeral director also may be able to provide you with information about local support groups for survivors. A growing number of funeral establishments offer aftercare programs that provide ongoing support.

Churches, hospices, other health care organizations and community agencies often sponsor seminars and support groups for the bereaved. The National Funeral Directors Association encourages you to contact your funeral director or any of the following organizations to obtain information specific to your loss or needs.

AIDS National Interfaith Network

1400 Eye St., NW, Suite 1220

Washington, DC 20005

(202) 842-0010

National Association of People with AIDS

1413 K Street, NW, Suite 700

Washington, DC 20005

(202) 898-0414

The Names Project (Quilt)

310 Townsend St. #310

San Francisco, CA 94107

(415) 882-5500

American Red Cross

Office of HIV/AIDS Education

Contact your local chapter.

Acknowledgements: This information was produced by a special cooperative effort between the National Leadership Coalition on AIDS and the National Funeral Directors Association. Both organizations wish to thank Lana Lawrence for her time, committment, and expertise in researching and writing this brochure and the many talented professionals who volunteered to review the manuscript.