Sunday, May 29, 2005


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.

Friday, May 20, 2005

Blessed Relief

Friday rolls around and the relief of two days free of caring for others is like a weight lifted, believe me. Today I was pushed to the edges of my patience with several patients, and I practiced compassionate listening even as I felt my impatient self wanting to scream in frustation, "Why the fuck can't you understand these simple instructions? Don't you get it???" Thank Goddess for self-control and restraint.

When one sees learned helplessness in action, it is difficult to just sit there smiling and say, "Y'know, I understand how you feel. Now let's talk about it". Instead, one wants to talk like you might talk to a recalcitrant child, threaten to take away priviledges, no sweets after dinner, no TV before bed. Instead, we plead, we cajole, we try good cop/bad cop techniques, we throw up our hands and decide to try again next week.

The diabetic patient who knows she should eat a small snack every few hours but only eats an enormous meal once a day and then has super-low blood sugars 12 hours later should know better--she just can't change her patterns of behavior. The woman with advanced AIDS who continuously buys Xanax on the street should know better, but her life of unbelievable trauma precludes such clearheadedness. The other patient with advanced respiratory disease should be able to stop smoking, since she constantly complains of not being able to breathe. But she can't. Her AIDS is fully controlled but the smoking will be her death. Can I change it? Probably not. Am I frustrated with her? Hell, yes.

I have a love/hate relationship with this work. I love the people, their humanity, their damaged selves. I love the ones who are self-sufficient and disciplined. I love the ones who are helpless victims of trauma. I've loved many who have died---the city is speckled with their memory as I make my rounds along the streets. I love many who will die, often due to their own inability to act conscientiously, and memories of them will also roam the streets and the corridors of my mind. I ask myself honestly if I am addicted to being a helper. Do I gain alot from being in this role? I'm sure I do, and only I can decide when the role no longer serves me (or them, for that matter).

Monday, May 16, 2005

A Gentle Monday

A thankfully gentle Monday greeted the opening of my week. A morning work-out, a patient hospital visit, some clinic visits, and lots of desk-oriented work and calls. Today was a day when the work I do made sense:

-I spoke with a doctor about a patient who needs better diabetic care. We came up with a plan and I called the VNA to initiate the change.

-I visited a patient in the hospital, wrote a note in her chart, and later received a call from the hospital physician about the discharge plans.

-Later I sat in on a visit one of my patients had with his primary doctor. A great deal of useful information was exchanged and now I can follow up.

-Another patient didn't show for his appointment with his doc. I checked the computer and saw that he'd been in the ER. I printed out the notes and labs and will discuss them with his primary and initiate timely follow-up.

Just for a day, everything made sense and I could just do my work.

My colleague, meanwhile, was struggling with a patient who has a not-quite-broken arm which needs orthopedic attention. Unfortunately, none of the local ortho docs want to see a Medicaid patient if the patient's arm isn't actually fractured, so the patient languishes in pain. Another patient needs emergency oral surgery but no oral surgeons in the area accept Medicaid. We can load her up on narcotics but she needs surgery. What to do? Luckily, this was not my battle to wage today, but there for the grace of God go I......

Coming home, the dogs wag their greeting and we head to town for a book-reading at the local dog-friendly collective bookstore (see link to Food for Thought Books). The reading was cancelled, but we hung out with the friendly bookstore workers, the dogs soaking up the proffered love. We then wandered through the sunlit town, eating cookies and looking at flowers. The dogs only seemed interested in flowers that other dogs had peed on. What's up with that?

I give thanks tonight for a gentle day, a lifted depression, the peepers making their nightly appearance in the nearby swamps, and the knowledge that my love is on her way home.

May your days be gentle, fair Reader.