My mom did really well today. She ate and drank quite a bit (encouraged by the blueberry pie, hot garlic potato pizza, ginger beer, and baklava contraband I got her); she took all her meds; she let herself be turned and cleaned with no fuss; and she not only sat up at the edge of her bed, but she also got into a normal wheelchair (as opposed to the upright bed on wheels) and let her sitter and me take her out to the patio for a bit of fresh air.
Then suddenly at about 10:00 p.m., about five minutes after taking her nightly medications, my mom had a psychotic break: She started talking about how the curtains had a stash of medications in them; how the pillows had a stash of medications in them; how the place she was holding her hand mid-air was in fact a stash of medications; and how the hospital was trying to keep all of this hush-hush, as part of the secret plot to kill both of us.
The look in her eyes and the sound of her speech changed markedly as well. Though it was the same body, an altered personality was inhabiting it. I tried assuring my mother that she was simply hallucinating from the medications; that there was no grand hospital plot; that she was safe. But it simply pissed her off that, as she put it, I thought she was crazy.
I plan on writing a separate post on the issue of dealing with my mom’s mental instability during this entire period. On the one hand, it has been a profound and sacred learning experience to witness the many layers of my mother’s consciousness: Where is a person made up of mind, spirit, body, personality?
On the other hand, it has been an incredibly unnerving and distressing experience, mostly because I am scared: Will I get my full mother back? Or will it just be pieces of my mother — her voice, her face, the occasional spark of her spirit?
At any rate, I summoned the nurse, expressing my serious concern. The hallucinations couldn’t be the result of the medications, she asserted, because the medications would not be absorbed for about an hour. I nonetheless asked if there may have been a mixup in the medications — i.e., if my mother may have been given the wrong drug. That’s when the nurse said she would call the doctor to speak with me.
On the one hand, I recognize the validity and usefulness of sticking to the idea of expected outcomes — i.e., X medication is known to cause Y behavior on Z timeline, but A medication never causes B behavior, certainly not on C timeline. On the other hand, I know for a fact that human experience trumps theoretical outcome; that body trumps data; and that outliers potentially exist for each and every statistic.
In other words, I wish that medical professionals would stop saying that something “is not possible.” Everything is fucking possible. It may not be probable; it may be extremely unlikely; but it is still possible. And I think that when medical professionals speak in language that eliminates the existence of a certain possibility, they may miss key information about a particular individual’s case — which can be a life-and-death oversight.
I say this not because I necessarily believe that my mother’s sudden change was directly related to taking her medications; but because we need to allow for the possibility that it was. Over the years, I have had immediate response to medications that were supposed to take time. I have had no response to medications that have been “proven” to work. And I have had a crazy response to medications that had normal outcomes for other people.
Regardless, the doctor arrived on the scene about 10 minutes later. I recognized her from an interaction two weeks earlier — when a nurse had thrown my mother’s leg pads on the floor, then put them back on her legs, despite my protest. I had paged the doctor at that time, to express my concern. The doctor — this same one — had validated the choice of the nurse, saying that the hospital “keeps the floors clean,” explaining that “the rooms are mopped thoroughly after each patient.”
Yup. Hospital floors so clean you can eat off of them.
Anyhoo, tonight the doctor’s demeanor was, shall we say, not particularly friendly. I asked if we could step out into the hallway, then explained what happened. “My mother was very lucid today,” I started off saying. “Not according to the exit notes I read,” the doctor interrupted, with a tone implying she knew the real deal and that I was off base. “The report I read said that she was very confused.”
I shared with the doctor that I was able to have numerous logical conversations with my mother, and that in these conversations, my mother was able to pick up on and laugh at subtle nuances drawing from past experiences. I shared that the conversations in particular and my mother’s behavior in general were the closest to normal that they have been in a long time.
Aside from which, a daughter’s knowledge of her mother is more comprehensive than a nurse’s notes on her patient.
The doctor shared her thinking that my mother might be suffering from “sundowner” syndrome, in which a hospital patient — especially an elderly one — gets confused and disoriented after dark. I acknowledged that possibility, but just to be sure, asked the doctor if my mother accidentally may have been given the wrong medications. “It’s highly improbable,” the doctor replied. “The pharmacy is very strict; the nurses check the patients’ wrist bands, and they triple check the medications.”
Nobody checked my mom’s wrist band, but whatever. When I then expressed that I’d been following my mother’s medications; that she seemed to get less than usual tonight; and that I’d like to go over what she was taking, the doctor proceeded to talk at length about how the day team was the best to speak with.
She then told me, her irritation unmasked, that visiting hours had a reason — that the change of nurses was quite chaotic (although, as she failed to mention, the change takes place within visiting hours, not outside of them, so I’m not sure how it’s relevant) and that she’s in the trauma department and therefore has lots of cases (ie, more important things) to deal with.
I felt put on the defensive, and I began justifying why I was there: My mother was freaked out yesterday; I flew in from Southern California specifically to take care of her; and I was doing an intensive, round-the-clock visit. The doctor seemed unimpressed and continued to rattle on about how it would be far more appropriate for me to speak with the day team.
I informed the nurse that I had in fact been there all day long. Furthermore, I added, I’d simply been telling the nurse about the situation; it was she who had called the doctor. “Fair enough,” the doctor responded, then went off to prepare me a list of meds.
Not only had I been at the hospital all day long, but there had been no incident to discuss with the day team; because the situation had not happened until the late night hours. And thank goodness that I was there at night to notice the radical change in behavior, because — given what I’ve seen at the hospital — it’s quite possible that nobody else would have.
Aside from which, what the fuck is up with chiding a daughter for caring enough about her mother to be by her side and watch over her? I felt shamed for being there, for saying something, for intervening. And as I went back to sit next to my mother, who was then asleep, I began crying.
It had been an especially weird interaction because the doctor was a young woman — even younger than I. Honestly, I expect more from a female peer.
When she came to give me the medication chart, the doctor said, “You look worried.” Um, yeah. But mostly I’m crying because I’m exhausted from the battle of constantly having to step outside my comfort zone — figuring out what questions to ask about what’s going on; figuring out what is being done that shouldn’t be done and what is not being done that should be done; making sure that basic practices like hygiene are maintained…
And having to deal with people directly or implicitly berating me for caring enough to take this all on.
To her credit, the doctor printed out a comprehensive list of medications my mom is taking — a list the likes of which I have not seen even once in the past three weeks. She also wrote, as per my request, an explanation of what each medication is for. Still, despite my medical booty, the experience left a bitter taste in my mouth.