Lessons for Parkinson's and Lewy Bodies in the ER; I should have known better!

So last night was one of those red-letter nights. Really, really red- with lights and sirens and stretchers and backboards and firemen.And today was a red-eye day, as in I haven't had any sleep yet.

Casper had several really bad days, and was tremoring so badly I requested a wheelchair a few days ago. Yesterday her teeth were chattering again. I got home late from work, and was trying to get dinner made in a hurry when Kerry heard her yelling my name and a thump from upstairs. Casper never uses my name unless I am really in trouble. We raced up the stairs to find her on the floor, holding her side, dazed and confused and hurt. She refused to allow me to call for help, and Kerry and I got her up and back into bed. Not three minutes later there was another thump. And silence.

Dinner was turned off, back up the stairs, and Casper is completely unconscious on the floor. Nothing roused her. We called 9-1-1. She didn't respond to us holding her chest to count respirations, she didn't respond to Kerry crying, she didn't hear anything. Katrina called calmed Kerry and watched Casper while I waited for the ambulance. Those times the minutes drag on like they will never get there.

Finally the truck and paramedics arrive, and I take them up to Casper, who is awake but not alert. I had her meds out for them. I tried to tell them her history enough to get an accurate report for them. I was brushed off. I remember Linda's irritation with paramedics as an ER nurse, and their rush to know everything without asking anything. They were, at times, the bane of her existence. Last night they were mine.

"She has dementia. Lewy Body Dementia. It is part of her Parkinson's Disease."

"She has Alzheimer's" was the report across the room, over Casper's wide open ears.

"No, she does not have Alzheimer's"

"You just said she does."

"No, she does not."

"Why doesn't she have Alzheimer's meds? Why is she taking pain meds?"

"She has PD. She has pain from that. She doesn't have Alzheimer's."

• Lesson for Emergencies #1- have a medical history ready at all times. Mine was in my hard drive, which had no ink for the printer. I am obsessive about that list and history. I keep it updated after every appointment.
• Lesson #2- do not run out of ink. It does not help to be obsessive if you can't print the list!
• Lesson #3- have basic PD and LBD info available in easy to read format. Basic symptoms,

They got Casper on a backboard and had to lift her down the stairs. The stress was making her tremor more and she was bound to a backboard. She had a goose egg being pressed into the backboard. I could see where this was going. Nowhere good.

I got to the ER first. It was packed. Police cars and ambulances everywhere, On a Wednesday night! They took Casper in the back. Two burly security guards told me it would be 25 minutes before I could go back, that she had to "get settled into a room first." Right. Not on my watch.

• Lesson #4- never take no for an answer. I stepped outside and called the backline for the ER, told them I was there, that Casper could not give a history, and she needed me and so did they if they wanted to know what was going on. I stepped back in to face the guards, who told me no again as a nurse was opening the door for me.

I found Casper, still on the backboard, in the hallway, under bright lights, with the paramedic who kept insisting she had Alzheimer's. Only now he decided that she had an anxiety disorder and no other medical condition. 12 weeks of classes and he could diagnose her. He kept telling anyone who would listen she was only anxious, and that if you talked to her she would "calm down." Her feet were shaking so badly the gurney was rocking, and the straps were digging into her ankles. Not a good sign. Had she not been tied down the paramedic would be in trouble.

The first ER nurse came for report. It included one fall, not two, no other medical conditions, no history. Why did she fall? He had no idea.

• Lesson #5- bring extra copies of the medical history and med list. The paramedics lost their list. Have a rationale for each med- the pain meds created a flag at the ER that we were there seeking pain meds. I had to say repeatedly we didn't want any meds. We wanted a CT to make sure Casper didn't have a bleed in her skull and X-rays of her ribs. Make sure the list says there is confusion and agitation.

We waited for what seemed like forever but was actually about 30 minutes for a bed. Casper was in agony from the backboard. It was pressing on the site of impact on her head. I tried to get the nurse's attention. She kept saying "She's alert and oriented- she can make her own decisions." When Casper was able to get out of the restraints another nurse told the treating nurse, who responded "I told her not to." Then and only then did she actually come to Casper's bedside, took the rest of the board out from under her, and said "If you had stayed on the board you would be a priority. Now you are just a number on a list. Now you have to wait." Casper looked at her, blankly. Remember, Casper is a nurse. She should have known that. But her cognition was impacted, and she really wasn't all that alert or oriented. The nurse didn't get it because she had not heard a real history. And she still was not willing to listen.

Casper tried to get up to leave. She was dizzy, confused, and uncoordinated. She started to fall again. Then there was a look of alarm on the nurse's face. "Is this what happens?" Yep- just like that. Want to see how well she falls? Or are you ready to hear it now? Just then paramedic boy walked back in, to give yet another rendition of his song for the night. Again, it was wrong. Casper tried to interrupt him and was shushed "He has other people to go pick up. You need to stop interrupting. He's telling me what happened."

Let's see- Casper was the patient. She may be disoriented, but she knows how she fell. She knows where she hurts. Be quiet- the professional is talking.

• Lesson #6- Interrupt. Stop bad information from getting into that record.

Two hours later, we were done with CT, X-rays, and exams. We saw the doctor, who came in with the information that Casper had an anxiety disorder that made her confused and fall over while getting dressed and that she fell once and never lost consciousness. The look on his face when we explained that she was turning over in bed, didn't feel herself fall, fell twice, was completely unresponsive, and had an injury that was palpable was priceless. NONE of that was in her record. He updated the records, and did a better exam. Then and only then did Casper transform into a real patient with a real illness, not a drug seeking zombie who fell down while trying to put her shoes on. (Do you think someone in their jammies would even be putting their shoes on?) (She was barefoot in the ER).

Suddenly the nurse was offering socks, the doctor was explaining that she probably had fractures he could not see on the xrays, and that she needed to be cautious when she got home. Then and only then did the nurse offer Casper any comfort measures. Three hours later. She never asked about her head because the paramedic insisted there was no contusion. There is now- it protrudes about an inch off her head. They never offered ice for the non-existent contusion that nobody palpated. Casper continued to be slow in her responses, and confused in hearing instructions. Only after three hours did the nurse, who had not spent any time with her but documented her stay in the ER, notice anything amiss.

"Is this how she is all the time?" (Finally someone whispered and made sure Casper did not hear). Yes, sometimes, but she has to have a concussion at this bpoint to add to the usual issues. This is not her even on a bad day.

"Why isn't she on PD meds?" LBD made them impossible. It creates side effects.

"This must be so hard for her. For you." The "for you" was for Casper- finally someone looked at her. Both the nurse and the doctor.

They got a wheelchair, and made her ride in it. They took time to explain why she needed it. They explained what to look for and to come back if needed- to Casper. Finally.

Lesson #7- make sure you are heard. And make sure the patient is treated as a person. Dementia does not make you stupid, or less. You deserve to be treated as an individual.

The final lesson of the night? Be grateful when the damage isn't that bad. And be prepared for the emotional fallout of realizing that the disease is moving into a new stage and new precautions are needed. Those realizations are just not okay. They are necessary. But they are not a happy moment. Holding hands and talking about them makes it sting a little less.