Writing historical fiction about the AIDS crisis. Looking for firsthand experiences (early 90s, informal caregiving networks)
Hi everyone. My name is David. I'm writing a novel set in rural Massachusetts in the early 1990s. The central character is a retired nurse who runs an informal, clandestine hospice out of her own home for friends and acquaintances dying of AIDS — people who had been abandoned by their families and by the formal medical system. Her neighbors know and keep silent.
I want to get this right. I'm not looking for statistics or history articles. I'm looking for what you saw, heard, and felt.
If you were there as a patient, a caregiver, a friend, a bystander, I'd be grateful for anything you're willing to share. Even something brief.
Some specific questions, answer whichever feel right:
On the body, late stage
- What did you first notice, physically, in someone arriving at end stage? Face, body, voice?
- What did breathing sound like in someone's final days?
- Were there particular smells you remember?
- What did advanced oral candidiasis or Kaposi's sarcoma look like to someone who had never seen it before?
On abandonment and informal care
- On people, whose families refused to take them in or even visit, how did those people end up finding care outside the formal system?
- Were there informal networks ...private homes, retired nurses, neighbors ? operating outside hospitals or official hospices? How did they work? How was the secrecy managed in small or close-knit communities?
On what happened when someone died outside the formal system
- How were deaths handled when someone died at home, informally, outside of official medical oversight?
On nurses specifically
- Did you know any nurse who went well beyond what her job required? I'm interested in how she moved, how she spoke, what she did that others didn't.
- If you remember a specific nurse, what stays with you about her?
- How did they change, after seeing so much death and not just physical death, but moral death. Watching so many families deny their own children. Did that leave a mark on the nurses you knew? What did that look like?
On the feasibility of my premise
- In my novel, a retired nurse runs an informal hospice inside her own home, in a small conservative religious community in early-90s Massachusetts.
On children
- Did anyone ever have to explain what was happening to a child a neighbor's kid, a nephew, a younger sibling? What did they say? What did they leave out?
Thank you so much. I'm trying to write this as close to reality as possible, and to do it in the most respectful way I can , honoring the lives of everyone involved, the ones who cared and the ones who were cared for.