POSTOPERATIVE DELIRIUM AND PSYCHOSIS: SO THIS IS WHAT IT'S LIKE

What follows is only that which I can recall after having a total knee replacement some months back.

My physician marks his initials on the knee to be replaced while another man in scrubs asks me if I've ever had any trouble with anesthesia. I tell him yes, fentanyl and Versed (midazolam), and remind him that it should be on my admission interview with the nurse. He asks me what happens, so I tell him it makes me crazy, crying, and paranoid, and it lasts several days. Only propofol has not caused me any problems. He says for me not to worry, "We'll take good care of you."

My next awareness is being wheeled into this strange hospital ward area that doesn't look familiar. I tell them that I'm not supposed to be here. "Yes you are dear, you're in the hospital." I feel confused and scared. Why am I here? "You had surgery on your knee." I did? They wheel me into a room that looks very old, maybe a little dirty, and I don't want to be there. My knee doesn't hurt, so why is everyone constantly pressuring me about pain and why is there a morphine pump in my arm?

I have to go to the bathroom, and I'm a nurse, so without thought I bring the morphine pump with me. But almost immediately, all these people are running in asking me what do I think I'm doing. "I'm going to the f***ng bathroom, what does it look like?" I mean, really, they can see me sitting on the toilet and hear the sound of urine. They sternly tell me that's not allowed anymore, that they must accompany me. I see they want my urine as if it belongs to them, but it's mine. Every time I try to get up, it's as if there's an alarm under my sheets that goes off to tell them I'm trying to escape, even if it's only to escape to the bathroom.

A nursing colleague and friend, Linda, comes and brings me a basket of "goodies." As it's close to Halloween, there are black cats, pumpkins, witches, and the like, in the basket. Linda tells me, "They only want to make sure you don't fall when you get up, so just push the button and let them help you, it'll be all right." But I don't want their help, I want their absence.

After Linda leaves, the black cats, pumpkins, and witch cutouts in her gift basket start circling the room on the wall, all around me. They even wrap around the corners of the room on their circling journey. I'm hallucinating, but I'm not scared. I know I'm hallucinating, and it's fun! Somehow Linda has arranged this for my entertainment. Is that cool or what?? But I know not to tell anyone this great secret; otherwise, they would try and give me medicine to stop my fun. I tell the cat and the witch that I must sleep.

My orthopedist and nurse practitioner (NP) unwrap my knee and look disturbed. I can see the knee cap is red and swollen. Maybe it hurts, I'm not sure. They want an MRI and x-ray; something must be wrong. I still believe they care for me, as a person, so I do as they ask. They return to tell me I have a blood clot under my knee cap and I have to go back to surgery to put in a drain asap.

Another nurse friend, Marietta, is in my room for just a few moments. I think, when the "anesthesia types" come to the room and without asking my permission begin to drag me out of the room. Marietta tells them not to forget I can't take fentanyl, and I say "only propofol, please." One of the "anesthesia types" waves her arm at us as if to blow us off. I was in a whirlwind of activity, completely confused. I don't remember that anyone noticed or cared. I just felt pushed around, literally.

After this second surgery, I start urinating in the bed, a complete incontinence that I never feel until the urine seeps up between my legs and warms them. The nurses are very angry at me. The irony of their wanting my urine earlier and now having it forced on them makes me smile. Still, I'm deeply humiliated.

That evening, the NP tells me that they want another MRI of my lungs and a CT scan of my head to make sure I didn't have any blood clot problems there. But this doesn't seem right, and I don't want to do it. I want him to arrange for my release. He refuses. I remind him I'm not a prisoner, which he seems to find amusing. Now I'm certain-I've been taken prisoner. Somewhat aggressively I remind him that I have rights and that I can leave AMA any time I want. When I repeat this to my significant other, Will, he says there is no way he'll help me do that, and that he won't be around if I'm going to pressure him into doing something he knows is wrong. Apparently, I have powers over him that he won't be able to resist if he sees me in person. I see they've gotten to him as well. Linda and Marietta convince me that it's the right thing to do and why. It makes some sense, but more importantly, I want to be free, so I agree to the tests. As I predicted, there was nothing wrong. But I know what they're up to, they're trying to keep me prisoner. If I can't trust Will, I can't trust anyone in my family; they'll all be trying to make sure I maintain my prisoner status.

Now I'm being summoned to a discharge planning meeting that is going on about me! I walked there alone, without assistance, but quickly see a police woman is standing close to my shoulder. I watched them all talk about me, but they never asked me anything. Linda was there saying that I could go home with her. The 20 people or so in the room nodded their heads in agreement, as did my NP who was giving me a strange look, as if I shouldn't be there.

Getting back to my room, my nurse brings me two Percocet (endocet) tablets. I take one, but the other sticks to my tongue so I put it back in the cup until I swallow the first one. But I hear 3 "taps" on the 2-way mirror between my bed and the bathroom. They must think I'm hoarding drugs and are keeping track. I stare at the mirror and take the second pill so she can see. It's the nursing student I saw in the hall; I'd noticed she'd snuck into my bathroom some time earlier.

My NP came into my room to discuss what he thought was my "disorientation," perhaps even a little psychosis. I angrily reminded him that I was completely sane and that my discharge was being planned at the meeting we both attended. He tried to tell me such a meeting never happened. And, everyone else confirms this, even Linda. But to this day I can see that meeting as clearly as I see the computer I'm typing this essay on. It was palpably real. I recall what everyone was wearing, where they were sitting in the room. Ultimately, I just have to tell him to leave my room and stay away from me. This seems justified to me as he only has a master's degree and I have a PhD. I deserve more respect.

Finally, Linda comes to get me and take me to her home where I'll be safe from everyone including my family. I'm still sure that someone is hiding in my bathroom to keep an eye on me, so Linda checks out the bathroom and reassures me that no one is there and that there is no 2-way mirror. I ask her several times to be sure, and she patiently reassures me each time.

I hold my head down and tightly grip Linda's hand while we walk down the hall toward the outside door, as I'm completely certain that if my primary adversarial nurse sees me, she'll try to take me prisoner again. Linda tells me no one will take me that she has me now, everything will be OK. So that everything stays OK, I refuse to return any calls from Will or any of my family members to let them know where I am. I'm safe only with Linda.

Slowly, I came to understand that I really had been disoriented and psychotic. It was 4 more days until I felt I could talk to Will and safely go home. And, it was at least 6 more months before I really felt myself.

Epilogue ... I have wondered and wondered how I survived this ordeal. How had my nurses become my enemy, and why did they not seem to care if I felt that way. Looking back, I think they just thought of me as that "crazy lady with the knee." Why was a nurse, not on their staff, the only nurse who did advocate for me? Linda took my disorientation and psychosis right in stride; she did not endorse it, but she tried to answer my disorientation with facts in ways that allowed me to maintain my sense of independence and at the same time come to understand that I really was having a reaction that some people have after surgery. I could be totally crazy with Linda, but I always felt safe in following her direction. Much later when I was able to get copies of my medical record, I found that they gave me fentanyl in both the first and second surgical procedures. Then, it all made sense to me.

I hope my story serves as a cautionary tale of how much real nursing presence in a patient's life means. Although I now know that Linda met with a discharge planner, there were no nurses present, nor my physician or NP. If I had not had such a wonderful friend as Linda, and her extraordinary extended family, what would have happened to me upon my release from the hospital? No one knows, not even me.

Clearly, nursing must consider the period following hospitalization as critically as we view actual hospitalization itself. In this day of oversight by Medicare, insurance companies, and The Joint Commission, rehospitalization has important monetary and accreditation consequences for hospitals and therefore for nurses. Were it not for Linda and my other nurse friends, for me, rehospitalization would have been likely.

I remember when I was an undergraduate student, a nursing instructor asked us to write a paper about what the future of nursing could look like, from any perspective we wanted, anything was fair game. I wrote my paper on the notion of the "neighborhood nurse." I argued that if every neighborhood had a professional nurse, in the private practice of nursing (not necessarily an NP), operating at the top of the practice act in her state, she could conceptualize her neighborhood as her "patient." She would live in the neighborhood and know the health problems of her neighborhood overall but, more importantly, know what was going on with individuals within the neighborhood. If I had a neighborhood nurse, she would have known I'd just had a difficult surgery and could check in with me-as a neighbor and as a nurse. Visiting nurses, community health nurses, and home health aides just would not be the same as "our" neighborhood nurse.

I am sure my idea may now seem naive. But I'm reminded of the great nursing instructor who gave me an assignment that has stuck with me all these years. My hope is that this special issue of Advances in Nursing Science will include new ideas and innovations that will address post-hospital nursing. As my story suggests, a reconceptualization of post-hospital nursing is essential for patients and for the future of nursing itself.

-M. Katherine Maeve, PhD, RN

Guest Editor