My Mom’s Psychotic Break and the Doctor’s Bedside Manner

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 7th, 2008 • Patient AdvocacyPrint Print

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.



Comments

cathy January 16th, 2009

I am going through a similar situation with my mother. I think the hospital staff is horrendous. She is now in rehab with a mending hip. She stopped taking perkoset for the pain and I hope she comes out of her hospital psychosis. She is 82 and my father, died about 6 months ago. I can’t be there every minute but we hired aides to help out. She hates everyone right now and is blaming me for some reason. Its best to try to step away for a while and regain your mental health.

As far as the hospitals and doctors go,…just forget it. They are in it for the money only. Just pray alot and maybe God will help out. Its better than asking the Doctors, they will just be more trouble than you can imagine. The nurses and hospital staff are horrible and I always wonder why they want to be nurses. They really don’t help when it comes to end of life issues.

Hope you mom gets better and I hope my mom gets better. Its all a matter of fate. Don’t go down the tubes with her. Just do all you can do, so you never have regrets and let it go.

Cathy

Joan Carthan February 3rd, 2009

I can’t begin to count the times my doctors or psychiatrist told me it’s not possible for the medication to cause whatever side effect I was experiencing at the time. Then as time goes by guess what FDA takes the exact same med. off the market or there are a mass of lawsuits suing the manufacturer. I’m am so furious with those who should know better shrugging off the very people they should be taking seriously. I’ve learned, I am not crazy. Neither are you. I’m grateful your mother has such a loving and caring daughter. Always trust your instincts!

Angela July 30th, 2009

I swear this is my mother’s situation.  Sunday, went to hospital with a badley broken knee.  Started to see a change in behavior on Tuesday night.  She could describe what she wanted done.  She is bed bound awaiting for clearance for surgery as of tonight.  Anyway, on Weds., I go up to hospital at 10:30 a.m. and she is drugged, sound asleep.  Lunch comes and she opens eyes stares at ceiling, closes eye.  I speak loudly to her to rouse her and begin to complain to staff.  Apparently, during the previous evening she had a rough night and they gave the Dilaudin every 3 to 4 hours upon request.  Doctor order to give upon patient request every 3 to 4 hours.  So, Wed. morning, lovely nurse give her another dose of 2mg of this stuff to keep her from pain when she went for chest cat scan.  Mom started to come around at night, but was definitely still drugged.  She awoke saying she thinks she had a stroke because she is having difficulty speaking correctly and expressing herself using the right words.  So they sent for a scan of brain.  Today, I go up to see her and she has pigtails…..  She was much more coherent, but still having some difficulty expressing herself with correct words.  She did recognize family.  So, I skip out of hospital thinking all is well for 2 hours.  Go back tonight and she is unable to have a coherent conversation.  Very agitated and uncomfortable.  Nurse mentioned Sundown Syndrome and mom seems to be classic.  This happens in a matter of 4 days from a healthy woman?  So I am searching the net and found your posting.  I am convinced it is the drugs.  I ordered doctors, no more Dilaudid, Percoset is ok, because she has used it in the past, but now I am checking on this one.  I don’t know this woman who has regressed to a little girl…..I just don’t know where to turn.

Angela

lucy sometimes September 9th, 2010

I left town with my younger sister for a few days. I’d noticed a change in my mom’s behavior on the day I left. and well a fewdays before I left, she was not sleeping. I thought it was a reaction to going off of her ant-depressants and then going back on them again. I thought she would probably become cranky with my dad, then finally fall asleep and feel better once she woke up. I could not be more wrong!
My sister and I were on our way back from our road trip when I’d decided to call and let them know. My mom answered the phone. She knew who I was but began to talk as if she was having a conversation with someone else at the same time. She mentioned a guy that she’d had an affair with. And then she would change from that emotion to anger and hang up the phone.  I called again and the conversation was so strange and incoherent that I reacted with anger this time. Finally my dad calls me back and tells me how, over the weekend, she had began acting strange and saying things that made no since. While he was trying to explain these things to me, I could hear her in the background repeating everything he said. It sounded insane. It sounded unbelievable. I thought it was a joke right away. then I thought she was acting like this on purpose to get attention but knew instantly that no one could possibly do that like she did.  My dad had been dealing with it for two days, but I didn’t understand how he could deal with it for two minutes without calling an ambulance. It seriously sounded to me as if she’d maybe somehow managed to bust her head and she was talking nonstop incoherently. I was so angry with him for not calling a doctor. He’d “emailed” her psychiatrist her symptoms. But her psychiatrist could not see her til Tuesday. I finally arrived in town, not knowing what to expect. Her behavoir was the most impossible thing I imagined. I had no idea a person could go that far out of their head. It was like her brain was sleeping and she was speaking every thought she had. I waited for her voice to give out….. I couldn’t see how it did not. I couldn’t understand how her brain didn’t rupture from constantly reeling. She had all this energy and you could see the sort of “loop” in her brain playing over and over. It is very difficult to explain all this and frustrating because you can’t explain it really. I have filmed her with my camera but am so freaked out by it that I can’t even watch it. Online, the only symptoms that came close was a “psychotic break”. But I still haven’t found anything that is exactly what she was doing. 

Anyway, It’s Thursday now and she is “better” after we gave her the anti-psychotic called “geodon” and she finally fell asleep for longer than two or three hours. I can’t believe how difficult it was to find anyone caring or sympathetic when it came to trying to get some medical help. And when it came to admitting her into a Charter Vista here, she had to sign a paper but she flat out refused. The only logical thing she could do was refuse to sign the damn paper that said that we could get her inpatient care for three days so they can check her medication intake, etc. So here my father is, who is worried out of his mind, about to have a stroke and needs to go back to work so we can keep our house, here he is trying to figure out how to get legal guardianship over my mom so we can sign for her.  I guess my question is, IS this what people mean when they non-chalantly say “I had a mental breakdown the other day…” Or “my mom is going through a nervous breakdown” ?! I will never toss the word “crazy” around in a joking manner after this experience. Has anyone ever gone through this or known anyone that has acted this way?? Please let me know because I am having so much trouble trying to find information about it and what to do to make it better. She must be so frightened right now….

Dave July 27th, 2011

My Mother in Law was diagnosed with sarcoma less than a year ago in her knee. It metasticized to her lungs in the spring. She refused to consider chemo but agreed to move into our home so my wife could help care for her. In general her health was good no pain or other symptoms other than she said she was more fatigued than usual. She left our home and flew back to hers to wrap up some loose ends and get her clothes etc… to move back in with us. Trip was to take 2 weeks. In the interim she had seen a doctor at her home and he prescribed xanax. She took 32 of them in less than a week. She was hospitalized when we arrived to get her she was paranoid and delusional. The internalist agreed to release her to us. Suggested that she stay off of anti depressants and see if her mood and behavior returned to normal.
 
It hasn’t she has become increasing paranoid and delusional. She talks to the walls, think our house is bugged. She constantly says they are coming to get her today. Claims that smoke enters her room at night and puts a spell on her. We have had to install deadbolts that key lock from the inside as she wanders out the door with a packed bag. Any way you get the picture.
 
We are taking her to her oncologist today hopefully he can prescribe something. He thinks it is a psychotic break and classic bipolar disorder. We are very fearful that the drugs will be strong and have their own side effects. Just 3 1/2 weeks ago this woman was as sane as anyone now she is just flipped out delusional, halucinating, she is constantly confessing her sins to the wall in our spare bedroom. Afraid to shower because they have emptied our hot water tanks and put something else in them.
 
Help.

Lucy Sometimes August 2nd, 2014

you all seem to have the luxury of being able to simply place your mom  into a hospital to get immediate attention. You are blessed. I’ve been barricaded with my mom when she goes through her month long bouts of psychotic activity. It’s been annual now. I can rely on it every August. What’s funny is the third time, I decided to let her have her way and not force her to take meds to get better. She recovered a lot faster this time. I feel I am an expert when it comes to “psychotic breaks” as I am going through the fifth one now. it has become second nature to think of it as someone “sleep talking” and for you to keep your temper while she rants and raves for a month straight.i am realizing that crazy people are not interesting at all as everyone around me always says, but boring, annoying and are a front seat show to how easy it is for your brain to go stupid

Leave a Reply

©2017 Loolwa Khazzoom. All rights reserved. No portion of this content may be copied without author's permission. Sitemap