Last Wednesday I flew down to Fresno, CA, and flew back up with an old friend who, after battling AIDS for 25 years, is losing the fight. R''s brother and a few other friends and I have been managing his care up in Seattle for the last week.
R is one of my favorite flavors of people, a skinny nervous person, smart, funny, charming, talented, and relational. He has also had OCD since I met him in 1980. The OCD, related to a bipolar diagnosis, manifested in several ways, eating disorders, an inability to get out of the house without carrying half his belongings with him (the bag-lady syndrome "what if I need something"), and extreme indecision. The OCD also carried avoidance behaviors. R. avoided conflict, asking for what he wanted, and anti-retrovirals. He would get busy controlling the minutiae of his life while avoiding the big issues. In the last few years, he would worry incessantly about his belongings in storage units, while not chasing down the health care that he needed. Several of his Seattle friends offered to fly down to help him. He couldn't accept their offers because his appearance (another obsession) wasn't up to par, his apartment wasn't clean, and he would have to take care of them (another compulsion.)
Two months ago, R got pneumonia and began to show signs of dementia. His California social worker, Frida, and I talked him through getting on an ambulance to the Emergency Room. We both thought for sure that he would be admitted, but he was cut loose with some heavy-duty antibiotics and sent home. After a few weeks of daily calls by the Seattle support group, he had managed to take his pills daily, but was obviously losing his mind. A month ago his brother flew down and took over. 10 days later his brother's boyfriend drove down to help. R. was emaciated, covered with KS, and had about 2 minutes of short term memory. He didn't know where his own bathroom was. He didn't finish a meal without constant reminders. Last week I flew down and flew up with him. He was hospitalized at the best AIDS hospital in town and will go to Bailey-Boushay, a state of the art AIDS care facility, with loving staff and loving volunteers and really good art.
My feelings are extremely mixed. My lovely, vain friend, has a wasted body and a wasted mind. He's in pain much of the time. I'm grieving. I'm sad. But we have him now, he won't die alone, and he's in the best possible care, so I'm relieved, too. I'm also, clinically, fascinated by the dementia process (when I'm not frustrated by it or laughing.) R. can remember people and activities from 30 years ago. He can charm nearly every nurse and doctor who comes in the room. He remembers, at this point, all the people who love him and whom he loves. His right brain is working pretty well. His left brain doesn't tell him where he is, anything that happened in the last 6 weeks, what day or time of day it is, or the name of the person in front of him whose name he just asked. He is often sweet and charming. The more confused he is the snarkier he gets. He is very sarcastic, especially with his long-suffering brother. R. confabulates what he doesn't know. His brain makes up stories to fill the holes in his memory. Some are quiet elaborate. I haven't seen R in 8 years, nor has he been on a plane in that time, but evidently we've been on several long trips together. His brain told him that he has an apartment in a neighborhood of Seattle, not Fresno, and he wanted me to take him out of the hospital and take him home. Much of the time he thinks he's in Fresno, despite the view of Puget Sound out the window. His friend, Joe, says, "is that Fresno out the window?" and R. replies, "Oh, we're in Seattle." R., the compulsive care-giver, asks for back and foot rubs, tells the doctors that he wants us in the room to supply information that he won't remember, and has allowed us to talk him into many medical procedures. The right brain relational trust is working, even though the left brain thought process is not. His sentences are complete. His syntax is perfect. He knows his social security number. And he doesn't know who visited him or what vile procedure they just did or that his body is wasted or that he has AIDS. The KS constantly suprises him. (Advanced Kaposi's Sarcoma looks like an archipelago of red, mountainous islands everywhere but his feet, hands, and face. Sometimes it hurts like hell, sometimes it itches, sometimes it's hot to touch.) He asks, "Why am I so weak? Why do I hurt?" "Honey, you have advanced AIDS." "When did that happen?"
Back in the 80's, I lost about a hundred friends, clients, mentors, colleagues, and neighbors to AIDS. I started the AIDS Mental Health Network, which gave free training to therapists about psychosocial issues, safe sex, dying, resources, anything we needed to know. It was before the AIDS agencies arose and we were flailing to find information and the skills we needed to take care of all these dying young men. Back then we created care committees: chosen families of caregivers that ran errands, cleaned houses, did pharmacy runs, took the person to the doctor, and generally hung out. There was no internet, so we communicated by phone, and sometimes by a log at the PWA's (person w/ AIDS) house. R. has an AIDS nursing home to go to, the Lifelong AIDS Alliance, and a group of about 5 people, including his brother, who are the support team. In the 80's, PWA's died within 16 months. R. has lived with AIDS for 25 years, at least, and is in the last stages with good medical and social support.