It may seem strange on World AIDS Day to focus on the dead when we can feel the gathering momentum of greater access to treatment for HIV. But we have recently experienced the benefits of taking time to reflect and mourn the passing of loved ones right here at Hesperian.
Toward the end of October, we constructed a Day of the Dead altar here at Hesperian’s office. Several staff had parents die this year, and many of us had lost parents earlier, or siblings, dear friends, or close colleagues. Especially with Hesperian’s earliest organizational roots in Latin America, and staff who have lived where this Day of the Dead tradition (or Dia de los muertos) is widely practiced, it felt like a helpful response to the grief and desire to provide support many of us felt.
People brought in photos, small objects connected with the dead person, and foods the person liked. We decorated some temporarily-cleared shelves with cloth, flowers, candles, and hung paper banners designed to catch the air and welcome visiting spirits. In this tradition, the separation between the worlds of the living and the dead becomes more passable in November 1 and 2. One day around then after work, many of us gathered and talked about who each person was and what the different objects and foods had to do with them.
During this same time of losses and altar-building, we have also been finishing a draft chapter on helping children through death and grief, for our book in development, Helping Children Affected by HIV. Sadly, while there have been many hopeful and encouraging developments in HIV care and treatment, children are still very vulnerable to death, disability and traumatic loss from HIV. And young children are so utterly dependent on others for their care. Caregivers need to know how to help children stay alive and grow well in the context of HIV. Yet many caregivers lack key pieces of information for this and especially feel they do not know how to talk to or otherwise help children dealing with death in their families.
We at Hesperian know that practical information, simply presented and with the needs and abilities of caregivers in mind, can make a big difference. Sample draft materials, including a chapter entitled Communicating with Children and talking about HIV and an activity, How to Make and Use Memory Boxes, help people understand how a child’s ability to communicate develops, how children understand illness and death at different ages, how difficult behavior can also be a form of communication, and what are some simple ways to foster communication with children, including how to talk with them about HIV, illness, and death and why doing this is important. The chapter on helping children through death and grief uses the memory box, and other activities, as a way to help children remember and feel close to the spirit of a parent who has died. These are only 2 out of a dozen chapters, designed to cover the physical and psychosocial health needs of children affected by HIV.
Death is a part of life. On this World AIDS Day, while we work to help all people with HIV stay alive and thrive, we must also help each other care well for those who are dying, and participate in traditions that help us remember those we love who have died.
For more information, please look at our preview materials for Helping Children Live with HIV.