After having been at Hillcrest Commons Nursing home for three months and having a meeting about my progress I was feeling devastated. I had just found out that my parents were kicking me out of the house because I too was sick and that unless I found a way to get rid of my GJ feeding tube my port-a-cath, my oxygen (that I used overnight and occasionally during the day), to stop using catheters, and got out of my wheelchair than I would not be allowed home. According to the top specialist in the world on my condition, I was just going to continue getting sicker and I would never be able to eat by mouth again, would continue to lose mobility, would never be able to urinate on my own again, and would need oxygen more and more as my disease progressed. This meant I would never be allowed to live at home again., That was a forceful blow on me.
I asked to get put in bed early. Then I just sat there with both Buttercup and Haley and my laptop. My intention was to write, but I was in so much emotional overload that I couldn’t manage even that.
I did notice that the nurses were checking on me more often, but they didn’t say anything to me, just poked their heads in, said, “you okay?” and then left.
The longer I just sat there staring at the computer screen the more upset I got.
How could they do this to me? How could they just kick me out like that after taking care of me for 24 years. My mom had been through everything with me, she had heard everything the doctors had said, how could a few words from Jillian sway her so much that she was just going to kick me out of the house?
Most of all I was mad at Jillian. Why couldn’t she call my doctors? Why couldn’t she do a little research into my condition and my personal history?
Before I had been brought back to my room Jillian and my “care” team had added in a few more stipulations because I had been “harassing” my mother by begging her to help me advocate for myself to get more medically appropriate care from Jillian. I had wanted her to contact my outpatient team and get them communicating with the nursing home to get a better care plan going. My mom kept refusing. The new rule was that my mom could only visit once a week and I could only call my mom three times a week and I couldn’t bring up anything health-related. If they found out I was calling my mom more than three times a week or discussing anything my parents deemed inappropriate my parents would be notified and my parents would take my phone away.
I felt like I was being punished for trying to stay alive. I felt like my parents were drinking Jillian’s Kool-aid down in huge gulps only I was the one that was going to be absorbing the cult-like poison.
After about two hours of just sitting there, practically comatose, staring at my blank computer screen with all sorts of questions and worries and anger and regrets running through my head and me with no one left to call because my illness had stranded me from everyone, I just started crying.
Once I started crying, it was all over, I cried hysterically for a good fifteen or twenty minutes with no let-up before the nurse and Tanya came in to talk to me.
“What’s going on?” they both asked me.
“The only person that I thought I had left in the world to care about me just basically completely abandoned me so that she can go on dates with my dad.” I managed to spit out through my hysterical tears. “I give up, I just give up. Just tell Jillian she can stop as much treatment as she wants, I just don’t care anymore.”
“Do you feel like you want to hurt yourself?” Tanya asked me.
Oh, that famous question they ask you to see if they need to send you to the hospital. Honestly, I didn’t care what they did to me at that point. At that point, I didn’t care much about anything. All I wanted was to reverse time, go back to before I was sick before I was an adult that could be kicked out of the house, snuggle up with my mom and have her read me a nice bedtime story and cuddle in her lap.
“I don’t feel like I want to hurt myself, I just wish I could go to sleep and never wake up,” I answered as truthfully as I could through my sobbing. “Jillian wants to stop my IV fluids, I know for a fact that that will kill me, and I’m not even going to fight it anymore.”
As Tanya and the nurse stood there I just hugged Haley and Buttercup and continued to cry deep throbbing sobs.
Finally, Tanya spoke again.
“Can you page Jillian,” she said to the nurse.
“I understand you’re going through quite a rough time right now.” She told me. “But we will figure out something for you, a liveable, workable solution. Someday you will look back on this as just another really tough time in your life. We just need to get you through tonight. How can we get you through tonight?”
“I just need to go home,” I insisted.
“Well that can’t happen, so we need a different solution. Are you trying to do something on your computer?” she asked me.
I couldn’t get words out when I opened my mouth to speak. Just sobs poured out.
I thought my mom loved me. Now I knew the truth, she loves my dad more.
Then Jillian came powering into the room. She paused at the door sizing up the situation.
“This is not ok,” Jillian said. “She needs a psych crisis evaluation. The meeting was too much for her.” She said to Tanya and the nurse who had followed her into the room.
Then Jillian turned to me.
“We can’t have you this upset, it’s a safety concern. I’m going to have you go to the hospital to talk to someone from the psychiatric crisis team to see if they can help you calm down and see if you need anything else. We may need to move you from this unit to the behavioral health unit if we can’t help you more here. We need to help you.”
“I don’t want to go to the hospital,” I told her, feeling panic welling up inside of me, I knew my mental health was not the biggest concern at this point and that I didn’t belong on this nursing home’s mental health unit with all the older adults that actively hallucinated and floridly responded to these crazy hallucinations, acted out, and drooled all over themselves while screaming curse words at everyone.
“Well you can’t safely be here in this state so you’re going, We’re going to disconnect you from your tube feed and IV fluid before you go so that they can put you in the crisis area for an evaluation,” she told me, and then walked out.
I felt like I was going to puke and then just cried harder. My night was getting worse and worse.
The nurse hit the stop button on my IV fluids, disconnected the fluids from my port, flushed the port with a saline flush and then a heparin flush, and then put a green protective cap on the end of the line. Then she turned off my feeding pump, disconnected me from the tubing, and flushed my GJ tube with a 60 ml cath tip syringe.
The ambulance arrived about half an hour later. I was already starting to feel a little light-headed from low blood sugar, but everyone was refusing to test me. The only thing that I was still hooked up to was my G tube drainage bag and oxygen. Jillian had tried to get them to take the oxygen off of me, but when the EMTs had arrived and checked my vitals my oxygen level was only 86% so they told her I needed it and put me on their oxygen. They told her that she needed to be checking my oxygen levels more frequently if she was going to be taking me off oxygen for any length of time. She just kind of stammered in response and then shut up when the older male with the grizzly beard shot her a look.
I had never been to Berkshire Medical Center before, but that was the local hospital in Pittsfield and the EMTs told me that that’s where they were bringing me.
The EMTs were very kind and gentle. I told them how Jillian had disconnected both my continuous J tube feeds and IV fluids and how I was starting to feel light-headed and a little off, so the one in back with me checked my blood sugar and it was only 59. He expressed his concern to me over the fact that Jillian had attempted to take me off oxygen and had taken me off of the IVs and tube feed and didn’t think any of these moves showed appropriate clinical judgment. He off the record told me that I should probably ask to speak to a social worker or case manager at the emergency room and tell them about these things as they could result in serious even deadly damage to my health.
After doing his full assessment on the way to the hospital he called in his report and mentioned my low blood sugar and previously low oxygen level, which had since stabilized now that I was on 2 L of oxygen.
Once we arrived at the hospital they didn’t take me straight back to the psych crisis area like Jillian had said they would. First, they put me in a regular medical cubicle. The nurse came in immediately. The EMTs put me on the stretcher and gave the nurse report. On my first visit to BMC (Berkshire Medical Center), everyone was very kind and sweet to me and gave me wonderful care (that would not last over the years).
The nurse hooked me up to the oxygen on the wall and hooked me up to an oxygen and heart monitor. Then the doctor came in and ordered D10 and some bloodwork and medical clearance tests so they could see if I was medically stable enough to be evaluated by psych crisis in the psych crisis area.
Before giving me the D10 through my port the nurse rechecked my blood sugar. It was now 49. She immediately pushed the D10.
“You drop fast,” she commented.
“I’m supposed to be on continuous tube feeds and IV fluids with potassium and dextrose in them,” I explained. My provider at the nursing home stopped them to send me here.”
“Why would she do that?” the nurse asked me.
“So that I could be evaluated by psych crisis without relying on my medical devices as a crutch,” I explained.
“Well, that’s one of the most ridiculous things I’ve heard in a while. I mean you obviously need them,” The nurse laughed.
“I agree,” I laughed a little for the first time all day.
When the doctor came back in about an hour later he told me that my potassium and blood sugar were pretty low and that my inflammation labs like my sedimentation rate and C-reactive protein, were all sky high.
I explained to him how Jillian had stopped my fluids before sending me out which was why my labs were low, but how they were only just barely starting to drop.
“Give them another hour and they’ll be flushing themselves down the toilet,” I explained. “My inflammation labs are always through the roof because of my Autonomic SFN.”
The doctor ordered me a whole bunch of 5% IV Dextrose with IV potassium and half normal saline, and then when they finished he kept me on the oxygen, but medically cleared me to go over to the psych crisis area of the ER.