5 Weeks in the Hospital: When a Person With Mental Illness Requires Medical Care
I parked my gold “mom van” next to our dark gray Pathfinder and made my way to our bedroom where Caleb was sitting at the end of the bed.
“How are you feeling?” I asked.
“I feel just like I did that time in Tel-Aviv when I was beaten from head to toe and left for dead. I’m serious. That is EXACTLY how I feel right now.”
“Well, let’s get going to the doctor.”
Caleb groaned, “I don’t want to go to the doctor.”
“This is your third day missing work. The County requires a doctor’s excuse.”
Over nine months, Caleb had lost almost 100 pounds and was battling severe anemia. He was seeing a G.I. specialist and a blood specialist (hematologist) but there was no diagnosis or improvement.
On this day, Caleb’s primary doctor said there was a flu going around, but considering Caleb’s overall status, he wanted some labs. Caleb managed to endure the trip to the doctor and the lab and collapsed back into bed as soon as we were home.
That evening, his doctor called to say the labs showed nothing new and he ordered something for the nausea. That was a Wednesday.
Thursday night (actually about 2:00 a.m. on Friday) while sleeping on the couch, I heard strange noises coming from our room.
I found Caleb lying sideways across the bed, on top of the covers, feet on the floor. It looked like he had tried to get up and fell back. I asked him if he was o.k. . . . he made some garbled noises. He seemed to be sleeping so I chalked it up to nightmares and returned to sleep.
A few hours later I heard more noises.
This time it was like muffled screaming and I discovered Caleb thrashing around. It was as if an invisible person was holding him down and he was desperately trying to overpower them to stand up.
Going to help him, I saw blood trickling from his mouth. He was trying to talk but couldn’t. I told him not to get up and called 9-1-1, followed by my mother-in-law. It was not even 5:00 a.m. and the girls were all sleeping. I needed her to stay with them while we went to the hospital.
The paramedics were the first to arrive (of course). Some of their questions seemed absurd.
“Is this his normal state?”
What? Is comatose his normal state? Uh, no…
Grandma arrived next and then the ambulance (yep, a mom can get there faster than an ambulance!) Our five year old had been wakened by the commotion and Grandma was holding her on the couch as Caleb exited on a stretcher.
In the sunlight one of the EMT’s commented that he looked see-through. I pulled my van behind the ambulance and waited in the middle of the street for about 20 minutes.
An EMT finally ran around to my window and said, “We’ve been starting an I.V. He’s going to be o.k. When I got the I.V. in he gave me a thumbs up and said ‘good job.’” It was hard to take too much comfort in her words, but I held on to them as we headed for the hospital.
At the E.R., Caleb was completely surrounded and I had to stand way back. After several minutes the doctor broke away to talk to me. Those words are etched into my memory.
“I’m going to do everything I can for him, but you need to understand that he is in bad shape.”
I nodded and understood, but it all seemed unreal. I just stood there watching.
At one point I heard him yell, “I don’t want to die like this!”
The doctor yelled back, “We’re not going to let you die, Mr. Lane.”
Caleb’s mom joined me after dropping the kids at school and daycare. I repeated the doctor’s words. Tears welled in her eyes as she stepped away, calling Caleb’s dad to come from work. A soft-spoken hospital employee touched my shoulder.
“Do you need me to call anyone for you?”
“I don’t know, I guess someone should call his work.” I gave him the phone number.
“I’ll take care of this. We also have a room set aside for you and your family. Would you follow me?”
I didn’t really want to, but I followed him to a private room in the waiting area. Some of Caleb’s relatives had already arrived. I updated everyone. Caleb’s co-workers started to appear.
His apologetic boss needed some document faxed that day to set up a sick bank so other County employees could donate their sick time to Caleb. I talked to my soft-spoken hospital guy who took care of it.
I was summoned for an update. He was stable, on a breathing machine, and being moved to ICU. He had been given three units of blood.
Caleb’s primary doctor arrived to take over his treatment and gave me a little more information. Caleb seemed to have aspiration pneumonia (caused by inhaling vomit) and a pulmonologist (lung doctor) would be consulting.
Finally able to sit next to Caleb, I touched his arm, kissed his cheek, and told him I was there. A nurse placing monitors opposite me asked about the scar around his index finger.
I flatly replied, “It was caught in a machine gun clip. The tip was cut off and they re-attached it. That probably won’t work very well on that finger.”
He looked at me for a few moments and finally answered, “That is not something I hear every day.”
Well, Desert Storm had just begun . . . by now he has probably heard a lot more explanations like that!
In our new ICU waiting area, one of Caleb’s co-workers handed me a sandwich from the cafeteria. Even though it was mid-afternoon, I honestly did not feel hungry. But I appreciated his kindness and ate it anyway.
When I was allowed to see Caleb, he was still unconscious. He had tubes into his lungs breathing for him and other tubes pumping out the contents of his lungs, which was a lot of blood.
The G.I. doctor determined that the blood had never been in Caleb’s stomach (so it wasn’t true aspiration pneumonia) and felt it would be up to the hematologist to figure it out.
The plan was to be on the breathing machine in ICU for about five days and then moved to another floor to investigate his underlying condition (i.e. what is this?)
The intake nurse, I’ll call her “Jennifer”, was one of the most self-righteous, unprofessional people I have ever encountered. She disparaged the medication he was taking (for pain and for mental health) and commented that they were doing such a huge favor taking care of him when he obviously was not taking care of himself. Given the nine months of perplexed specialists and unproductive tests we’d been through, I just wanted to strangle that woman! (O.K. I was also tired and stressed)
Jennifer’s attempt to “get him off all that stuff” caused him to be without his regular medications for almost five days. This, along with PTSD, caused him to go into a panic every time he started to regain consciousness (being tortured and in restraints in a strange environment…nightmare situation for him). The impatient and skittish nurses would knock him out again, usually in the middle of the night when I was not there.
I encountered some caring and compassionate nurses, but Jennifer’s disdainful attitude toward a person suffering from mental illness and chronic pain was the norm. The hospital staff often made it clear to me that they did not like my husband and caring for him was a distasteful part of their job. I hated leaving him alone in that place, and his mother and I were there as much as possible. But I also had a job to attend to as well as a two, five, and ten year old who needed a parent.
On day thirteen of his ICU confinement, Caleb finally managed an escape attempt…I am sure it was fueled by the delusion that he was being held captive, but that’s o.k. He gradually loosened the restraints by pretending they were already tight and faked sleep so they wouldn’t drug him again. Once he pulled the tubes for the breathing machine, the staff took all the credit, everyone on the unit was happy, and he was finally moved to another floor.
Good to be out of ICU, but not out of the woods yet.
His medication routine had been so disrupted that he continued to be suspicious and paranoid. Again, the hospital staff did not appreciate his behavior and treated him with disregard. One nurse, annoyed at having to deal with him, handled his IV after cleaning his bedding. She was openly contemptuous when Caleb complained about it.
As a result, on the eve of being released he was found to have sepsis. According to the doctor, “the most dangerous strain” – and back to ICU we go!
As he was recovering from sepsis, he began to swell from his arm up to his neck…now there was a blood clot! I began to despair that he would make it out of the hospital alive. I always knew there was a possibility that he would not live, but now it seemed that he just needed to get out of the quagmire of the hospital!
The idea of doing some investigation while hospitalized was abandoned. Caleb’s doctor was just as eager to get him out of that environment as we were. As soon as it was medically feasible, Caleb was released to home under the care of a visiting nurse. (Who was awesome and super nice, by the way!) He was still very ill and on IV treatment for another six weeks.
In the hospital he had received a total of five units of blood and after discharge he received another two units. There was never a medical explanation of why all this had happened, but he very nearly died three times during his five weeks in the hospital!
He was off work for about six months, going back at part-time and gradually increasing to full time after a year. He struggled for another fifteen months to continue working, but could never get his feet back under him. He had suffered some brain damage caused by the lack of oxygen and showed signs of dementia. He continued to be in poor health and was hospitalized twice more before finally, reluctantly admitting the need to retire.
As a result of Caleb’s brain damage and retirement, our family has been in a constant state of adjusting and learning for the past eight years. It’s been an education I didn’t really want, but it has definitely shaped us and I would not change a thing!