Sharing Family Stories in Times of AIDS: Pilot Study Report

Introduction

“In KwaZulu Natal as elsewhere in South Africa and the rest of the continent, the number of children affected by AIDS is increasing at a rapid pace. Some children are contaminated at birth. They often die at an early age. Many others experience the trauma of having parents who live with HIV/AIDS. Sooner or later, they become orphans. According to University of Natal research fellow Chris Desmond, it is estimated that there are close to 100,000 AIDS orphans under the age of fifteen in KwaZulu-Natal alone. In the less unfortunate cases, the children remain in the custody of a family member, usually the maternal grandmother, sometimes an aunt or an uncle. Very often, the deceased person was a single parent.

The orphans suffer a double loss. They miss their mother – or, if he has been at home, their father. But they also miss the good life that was associated with the deceased parent. The quality of their lives has deteriorated. They do not go out to see relatives as they used to do. They have nowhere to go. Sometimes, they no longer go to school because the school fees are too high. Everything has become more difficult. The family battles financially. The grandmother is tired. She struggles to cope with her new parental duties. The children do not do well at school and sometimes they run away from home. With AIDS the world has turned upside down. At an age when the elderly expect support from their children, they have to bury them instead, and are forced to take responsibility for the upbringing of their grandchildren.

Clearly these families need material assistance. But they also need emotional support. The children are directly affected by the death of their mother or their father, but they do not know how to talk about it. They do not understand what has happened. The memories of the dead parent tend to fade. This creates a state of confusion which prevents them from developing to their full potential. With the parents – or only the mother in the case of female-headed households – still living but sick because of the disease, the children will urgently need emotional support. Living with a sick parent can be extremely traumatic, especially if there is nobody to tell the children why their parents are sick and what will happen to them after their parents’ death.

The role of memory in the bereavement process is widely acknowledged. Joy Johnson, an American bereavement specialist, explains how she helped a father of two whose wife was dying prepare his children for the loss of their mother :

I made a stack of books for children and one for him. I started a stack on what do to when a loved one is dying, and he very gently pushed that stack aside. I caught on. “How long do you think your wife will live?” I asked. This was Friday and John answered, “Oh... she’ll die this week-end.” I joke now that I felt that I pinned him down to the wall and yelled, “You have a lot to do!”.We talked about involving the children in her funeral and about saying goodbye, and equally importantly, we talked about a “Mommy Box”. John saved all of [his wife] Bea’s T-shirts, her jewelry,
a hat she loved, treasures that were precious to her and put them in a special box. Both children knew that they could go to Mommy Box anytime and remember Mommy. John took Bea’s watch and wedding ring off her wrist and finger when they went to say goodbye, threaded the narrow watch band through the lovely ring and put them in the box as well.

The concept of memory boxes is relevant in all cultural contexts. It has been successfully experimented with in Africa. The organisation which pioneered the concept is the National Community of Women Living with HIV/AIDS (NACWOLA) in Kampala, Uganda. They started to develop memory boxes in 1997. The importance of memory is also recognised in Tanzania. In his Manual of Psycho-social Support of Orphans, a set of guidelines based on his work with AIDS orphans in Kagera, Kurt Mädorin lists “opportunities to remember” among the caring interventions and general strategies to cope with rising numbers of orphans:

There are various ways to support children. Pictures and other things belonging to the deceased can be useful reminders. In Kagera there is a habit to give to the children a piece of cloth which used to belong to the deceased parent. Shared reminiscences in a family can also be very helpful.

In South Africa an organisation interested in the methodology of memory boxes is the Memory Box Agency which works in partnership with AIDS Counselling, Care and Training (ACCT), a support group for people living with HIV/AIDS in Soweto. The Memory Box Agency has recently moved to Cape Town.

The basic assumption of the methodology of the memory boxes is that children who remember their parents in a positive way when they become ill or when they die are in a better position to cope with the hardships of their condition. They know more about their roots and can figure out what happened to their parents. In this way they develop what psychologists call resilience. Resilience, in the words of the International Resilience Project, is “a universal capacity which allows a person, a group or community to prevent, minimize or overcome the damaging effects of adversity”.

In many, if not all, cultural contexts, adults find it difficult to speak to children about death. When AIDS is involved, the taboo becomes even stronger. Fear, shame and guilt are usually associated with the disease. Yet, the children would like to know. If we want to encourage resilience, it is crucial to break the silence around sickness and death. The memory box gives the family the opportunity to talk about these issues. The merit of the intervention is the opening up of communication within the family. Things which were never spoken about are allowed to be articulated. When the parents have died, the intervention gives the children permission to remember.

The memories of the families are kept in a “memory box”. Memory box is a metaphor. But the term also designates a physical object: a box which can be decorated with photos or drawings and contains the story of the deceased person as well as various objects pertaining to the history of the family. The members of the family, both children and adults, take an active part in the creation of the box. The more they contribute to the process of the retrieval of memory, the more they benefit from it. Creating memory boxes is a process. The fact of sharing the memories of the sick person or the deceased, of recording those memories and of storing them in a memory box helps the family members to break the silence about disease or death. The unknown becomes a little less unfamiliar. The memory boxes create the space to talk about sickness and death and in this way to cope with the loss of the loved person. It facilitates restoration within the family.

It is of course imperative to take into account the stages of development of the children concerned. Understanding of death varies according to age. A five-year-old child will not react to the death of his mother in the same way as a teenager. It is thought that children under the age of twelve are unable to fully grasp the reality of death. In all cases proper counselling is needed, which takes cognisance of the cultural context of the families. Maintaining the memory of the family helps the children to structure their identity. It enables them to adapt better to their new emotional and socioeconomic environment.