This is a work-related post about a patient with AIDS with whom I work.
Rose has had AIDS for about ten years. We've never treated her with antiretrovirals (the drugs used to stop the virus from replicating) because her mental illness, anxiety disorder, and predilection for Xanax and other drugs has precluded us having a clear shot at success. She has had relatively few life-threatening infections or complications but she is wasting away and we know it. A killer infection is only around the corner. With her itinerant lifestyle and inability to stay in one place and on task for more than a few days, she has been a poor candidate for treatment. Her Hepatitis C is also a worry, but the treatment for that can cause such intense emotional distress and suicidality that she would never withstand it. Her seizure disorder is another issue altogether.
Since I "inherited" her from another nurse almost two years ago, it's been an ongoing struggle to figure out exactly what to do with her. She has dropped out of our program several times and left the clinic entirely, always looking for a doctor who'll keep her supplied with Xanax. Now she's back with me for six months, and I feel like I am battling time.
I have successfully introduced visiting nurse services and Rose now has a daily visit from the visiting nurse whom she loves. By offering her home delivery of methadone (rather than going to the clinic every day), we are assured that she'll be home waiting for her daily dose. Now that this relationship is established, the thought is that we can now introduce further treatment.
Rose is now living in a three-story walk-up, with several of her daughters living upstairs. The electricity for all three apartments is in her name only, so I have had to intervene several times to keep the electric company from turning off the lights due to a bill over $1000. Rose spends most of her days in a messy double bed in the middle of the living room, with the TV on throughout the day. The sparse furniture is old and in poor repair, the apartment almost empty except for a shower seat in the middle of the dining room and some nasty leftovers or other detritus in the kitchen. No cooking happens in the apartment. Her daughter brings her food once or twice a day, at best, and Rose spends the majority of the day smoking. Cigarette burns dot the unwashed bed linens and I know it's only a matter of time before she goes up in flames with the rest of the building. Until recently, Rose's four-year-old granddaughter was living with her in this apartment, ostensibly abandoned by her mother, Rose's daughter. The other daughter who is the most responsible of Rose's children has taken custody of the four-year-old. The Department of Social Services has been called on the family numerous times.
Last week I felt forced to call Protective Services for the Disabled about Rose. I hated to do it, but I felt it was the only way to possibly get other agencies involved and consider taking legal action to put Rose in a nursing home, at least until we can get her stabilized. Although I don't think Rose's daughters are necessarily neglecting their mom per se, Rose's living conditions are abhorrent and are like what you might see in a movie or TV drama. Life imitating art? At best, Rose is self-neglecting, and that is enough to call Protective Services and report her as a risk to herself.
My goal is to introduce antiretrovirals as soon as I can, give Rose some immune protection against deadly infections, and watch as she gains weight and loses some of the dementia that has begun to set in. Whether some of this neurological damage is permanent from the vicissitudes of untreated HIV infection and years of IV drug use, it's hard to say. Perhaps if she stabilizes enough, we can send her to detox and break her Xanax habit. I am not overly optimistic, but I'm determined to at least give a very sincere attempt at suppressing her virus and perhaps prolonging her life, simultaneously putting into place services that might improve her daily plight.
As I sit in my lovely screened-in porch, listening to the many birds in the surrounding trees, the dogs snoring on the rug, a cold beer beside me, a warm meal in my belly, I think about Rose. I think about her life which is what it is, continuing throughout the weekend when my work is on hold and I go about my personal life. It's profound to witness such suffering up close, and it's also profound to realize that that particularly reality is not my own, at least not in this life, anyway. On Tuesday, I'll continue the struggle and see what the next step will be for her, as well as for dozens of others, most much better off than her, several somewhat worse. I take a deep breath of the flower-scented air here in my home reality, and I feel grateful beyond words.