Report from Pillville: The neurologist, the hospice nurse, and matters of the heart

Things to do while you're on hospice

The hospice nurse comes on Tuesdays. She wears elaborate blue eyeliner and perky pastel scrubs. Somehow this makes me feel all is right with the world. This past visit she noted that my mom's pulse/ox was quite a bit lower than usual and that her handwriting had degraded to an illegible scrawl. This news did not strike panic in my heart. There have been five hospitalizations during the three years that my mom has lived with me. During two I considered summoning the family. There have been eight trips to the ER, two outpatient surgeries, and a myriad of medication changes. I've been at the end of my rope so many times that there's not enough rope left to hang myself--which is to say that I'm ready for whatever comes next. Or that's what I tell myself.

Right now, I'm sitting at the kitchen island in the dark with a glass of wine, listening to my mom moan and shout in her sleep. I don't feel particularly worried about anything, and when I go to bed I will drop into the deep well of sleep only coming to the surface if it's absolutely needed.

On Wednesday I took my mom to the neurologist. She's on hospice now, I told him. She has a new lung tumor. Off most of her meds. She's not in any pain. He asked her if anything was bothering her. She said she was thirsty. He brought her a paper cup of water. He gave me his usual ultimatum. You must have two full days off every week, he said. You can come back to the house to sleep, but you must not see her during these days. You must do this so I do not get a new patient. This speech, delivered in his thick Chinese accent, sounds grave. No nonsense. You must, you must, he says.  I smile and tell him about going to the gym in the mornings. Two full days, he counters. He tells my mom she should enjoy every day, live each one like it's her last. He says that's what he does. He tells us that he's almost met death three times. I know from past conversations that he lost his house and everything in it during a fire and that he barely escaped. I know that he fell in the shower and split open the back of his skull. The scar is impressive. I don't know the story of his third encounter with death. But I believe him when he says he lives every day like it's his last. His eyes meet my eyes. His eyes meet my mother's eyes. He hold us there, reading us. Being sure we understand him. Waiting for us to speak. You can live for months or even years he tells my mom. She tells him that every day she hopes that she'll die in her sleep. He tells her no, that thought is a waste of her time. Just live. At the end of the visit he shakes our hands. Don't come back, he says. Just call me, and I'll write the prescriptions.

In the beginning of our lives in Pillville, there was a podiatrist, a pulmonologist, a cardiologist, a gastroenterologist, a vascular surgeon, a geriatric specialist, an ear, nose, and throat doctor, a dermatologist, and for a brief while, an orthopedist. We are pretty much done with doctors. I think the only one we may see again is the vascular surgeon. If you are sighing sadly right now, please reconsider. Each trip out of the house is a fall risk. That risk includes me. Steadying a wobbly person, even just to get from to car to wheel chair and back again is harder than it looks.

Today I needed to have my mother sign a form. Her signature was perfect. Maybe she could get a job teaching penmanship if there was such a job anymore. But tonight she's shouting nonsense. Our lives here in Pillville are like a yo-yo. Sometimes tightly elegant loops and tricks. Sometimes a limp and tangled failure. At any moment the string can break.

My mom is talking in her sleep again. This time what she said was perfectly clear. "How in the hell are you going to cook a turkey?" I've got that down, Mom, really I do. Of course I don't know that she was talking to me.

In the bathroom at my favorite coffee shop, there is a wetsuit and a towel. I like to imagine that someone runs across the street to surf on their lunch hour. I'd say that's making the most of today.