I wake before dawn dreaming about Drs. Warren Zeigler and Grace Healy and the Futures Invention project. I am shutting down the project, wrapping up loose ends and filing final reports but I give up because I know that nobody will ever read the reports, ever know there was a project, ever know there was me.
Fill a bucket with water. Put your hand in and whirl it around. Pull your hand out. The hole that remains is a measure of how much you will be missed.
I do not press the call bell but instead get up myself, use the toilet and go back to bed. I lay in the dark, wearing my BiPAP mask, breathing hard from the exertion of moving.
A nurse comes into the room and starts loudly demanding to know if I want my medication. It is around 6:00 a.m.; the medicine is not due till 7:00 a.m. I do not want it, so I do not open my eyes or answer her. She grabs my arm and starts shaking it. You are not allowed to do that—use physical aggression against a patient.
She is still demanding to know if I want my medication. Clearly, I do not—any moron can figure that out—but she does not care. She has come to administer medication whether I like it or not. She pulls one of the straps off my BiPAP mask.
I am here to die. My Health Care Proxy and my MOLST clearly state that I am refusing IV fluids, intubation, CPR and other things but my BiPAP is to remain in place as long as I live.
And the nurse is taking it off during the night. I won’t be able to breath.
I start swinging my arms defensively, trying to get rid of this woman who is cutting off my air. She yells at me not to hit her. So I kick her. She backs off and snaps, “You’re not getting any medication.”
My medication is liquid and comes in an oral syringe. I believe it was the nurse’s intent to force it into the corner of my mouth, push the bulb, and medicate me against my will. I was lying in bed and she was standing over me, so why not? She had the health and strength to do it. The medication that she was trying to forcibly give me she has now announced she is going to withhold because she is angry at me. It’s what she can do, so she does it.
Shortly thereafter, another woman enters the room and starts calling my name. She probably is either the nurse from the other side, or a nursing supervisor or director. She calls my name at least seven times. It is offensive to have someone keep yelling at me. A cashier wouldn’t do it; a waitress wouldn’t do it; why does a nurse do it? When did civility stop? I think there is some regulation that you only can offer medication three times. She offers it twice but keeps yelling at me. After the first few times, she gets an edge in her voice. The edge gets thicker and sharper as she goes on. Then she goes out in the hall and starts giggling with the first nurse.
I think about that for a long time. Why would a nurse go from an angry edge with a patient to giggling about a patient?
I lay there without speaking or opening my eyes for a long time, then Kim, the aide comes in. I recognize her by her cough. She goes in the bathroom, then there is the sound of something being dragged across the floor. She calls my name three times. I think she has dragged the wheelchair out of the bathroom and is ready to take me to the dining room. I am unresponsive.
I have disconnected from this whole scene. I am in my own place. Am I just too tired to connect?
What I learned decades ago was that a well-rested body wants to get up. You take a nap, wake up, lay there and let your mind wander. Maybe you should get up and do thus-and-so, but you drift off to consider kangaroos and why they don’t live in North America, not to mention whether or not he will call you today, and what is making that odd noise.
And then you discover yourself standing by your bed hunting for your slippers. Your conscious mind made no decision to get out of bed; your body jumped up because that’s what bodies do. So maybe the reason I am laying here not getting up is because I am tired to death. How long would I have to lay here to feel the spark of life? Would it ever come again?
The weekend day nurse—probably Raj—comes in and offers my morning medication. He offers two or three times, then leaves. I drift in and out of sleep.
I will lay here and not drink. I will dehydrate into a coma. What happened the last time I tried to do this? Peter the palliative care nurse practitioner came into my room and sat down. He sat down. He wasn’t there to do a task; he was there to be with me. Peter asked me questions and when I didn’t answer them, he made a few statements and then just sat quietly with me. Finally, I opened my eyes—and the pitcher of ice water was on the tray table right in front of my eyes. And Peter kept pushing it closer to me. He didn’t know he was doing it; he was just trying to make room for his feet. I gave in to my thirst, drank and drank and drank, and returned to life.
Because Peter sat down.