While waiting for death, women caregivers need more help from the church

This year’s theme of the Commission on the Status of Women http://www.un.org/womenwatch/daw/csw/53sess.htm was caregiving in the context of AIDS. This subject is not well understood in international policy, and incredibly unequal because women are almost always the ones who care for the sick. UNFPA estimates women do 90% of care globally.

One of the most moving presentations I heard was from Fulata Moyo from Malawi and the World Council of Churches. She talked about caring for her sister as she died from AIDS and her husband as he suffered with liver cancer. Her testimony was powerful for me because I lost my father to liver cancer, but our experiences were very different. I went to a sterile hospital everyday where doctors cared for my father, and we sat by his bed feeling powerless. Fulata did all the nursing herself in her home as visitors and family members streamed through the door.

In her remarks, Fulata talked about the lack of care for the caregiver, and the impossible multi-tasking of both nursing someone who is ill, playing hostess to family members and neighbors, and going through the motions of daily life when you have a giant pit of fear and grief in your stomach. What impressed me is that after her husband's death, she went around and spoke to pastors about how to better care for women caregivers. This shows incredible strength after such loss.

"When people from the church came to visit me they only said that God would heal my husband. The church told me over and over that God will heal him. I did not want to tamper with that so I prayed day and night and did not sleep. I was giving care to my husband but I also needed care. Some Christian fundementalists visited the bedside and told me there were symbols on my outfit that were demonic. They told me I should burn the outfit so I burned it. I loved that outfit.

After he died the church people told me that God was my husband. But after 6 months I had physical needs. These are issues women face and they will not talk about it. I asked my pastor, so God is my husband, what can I do? Our male pastors do not know what pastoral care for women is. Most women do not talk about this but I do because I am one of the crazy ones. If I had had daughters they would not have gone to school during this time because you also have to care for all the visitors that come to see the patient. Praying was seen as the only way to be supportive, if the spirit was OK then the body was OK. But I needed someone to cook the food.

After he died I went around and talked to churches in the region and shared my experience and called for a greater commitment to pastoral counseling. My advice to people who are with someone who is dying: 'if you don’t have wisdom keep quiet, and don’t talk to a widow about being a husband of god.’ "

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