We arrived at the ER to find Ben semi-non-responsive--not talking, eating, or drinking. He showed little response to things in his environment or to the needs of his own body. Immediately the need to find him a higher level of care was apparent and acknowledged by us, hospital staff, and his treatment team at Davis Behavioral Health. But that process couldn't even start until he was examined by a member of the Crisis management team. Meanwhile, nothing could be done or would be done to treat his schizophrenia or the catatonia. It was a frustrating wait for the crisis worker.
The crisis worker arrived around 2:00---if you can describe "arriving" when a staff member rolls a computer screen into the room for our virtual therapy assessment. I assumed that the use of the teletherapy was due to Covid as crisis workers would need to be in many places in a hospital and meet with a variety of people so I had tolerated it the day before. However, I learned that it wasn't due to Covid, but a cost-cutting method to have crisis workers centrally located and available to "work" at a number of hospitals. I was not a fan on that Thursday. Ben was totally unresponsive and without a "human" present to try to establish rapport, it was an impossible situation. She couldn't get Ben to say it was okay to talk to us (hello, catatonia). I said, "You might not be able to talk to us, but I can talk to you without written permission," so in that way was able to update her related to Ben's current situation (beyond what she could see herself--that's what having a MS in social worker prepares you to manage.) At the end of it all, she indicated that she supported the need for a higher level of care and would begin looking for a spot for him but because he hadn't given her permission to talk to us, she wouldn't be able to tell us where they moved him. Only he could. I reminded her that he was under commitment with DBH and he could not be moved without their permission and they(DBH) would keep us informed. It turned out that beds were hard to find and the crisis team was equally as hard to find--both for us and for the ER itself.
Gary and I made a plan to each spend a couple of hours Thursday evening to finish our remarks for the funeral--Gary took 7:00-9:00 pm and then I took 9:00-11:00 pm, and then I picked up Gary and headed home for some sleep. We had informed the ER staff about our situation and indicated that we would be back after the graveside service, but to please keep us informed about him being moved. We had hoped that Ben would be asleep by the time Gary had to leave, but it was not the case and Ben was distressed which made it hard for Gary to leave.
We checked with the ER in the morning before heading to the viewing (The ER could talk to us) and Ben had not slept the entire night again, but he had eaten a sandwich. The ER had no news about moving Ben to another place.
DBH told us that they had heard that no beds were available at the preferred hospitals, but that crisis was still "looking." Friday afternoon after the graveside service, I was told that Ben would be moving to a hospital in Salt Lake, but a few hours later the ER was told that move was off.....and so our ER stay continued.
It was a terrible situation. Each evening, we talked to a crisis worker who didn't know what the previous one had done, who never called us or the ER back, and never updated the incoming worker. Apparently there were no beds which would take someone so sick, and that was confirmed by Ben's DBH psychiatrist who was also trying to work to find him a bed. Meanwhile, no treatment was being done for Ben. ER docs are not set up to provide mental health treatment, just mental health crisis management. Therefore they did not give him medications that he had been taking even though they had the list "because they don't do treatment." I had to insist on medications and then they were asking me what dose and how often and other medical questions. I was emailing his doctor and she was giving me directions on what to do and what dosing, etc.
ERs are noisy and chaotic places frequently and being in a small room with no windows is very disorienting even in the best of times. For Ben, it was a nightmare. Caught up in his psychosis and catatonic state, he was unable to eat or sleep or to understand what was happening around him. Staff trying to help him or encourage him to drink or give him an IV panicked him. When he began talking, his psychosis became loud and demanding--also not the best thing in an ER with other patients.
Gary and I stayed at the hospital almost all of the time because we didn't feel that he was in a place that could care for him and his needs and he was getting worse. Gary took some time on Saturday to spend with Jena, Scott, and Tosha and her family at Lagoon but then came and sat in the hall of the ER when Ben was too distressed to have us both in the room. Most of the time we were just trying to ground him and reassure him that everything was okay while trying to fix this issue for him. Sometimes holding his hand was all we could do.
Saturday morning, finally someone from the hospital's psych unit came down and assessed him, saying that his needs could not be met in their unit (which we agreed as Ben had a bad experience there in the past.) but he did order some medications to be resumed for Ben to begin treating some of his symptoms. Unfortunately I had to still ask for the medication because ERs are not set up to treat people and give medications on a regular basis.
And crisis management continued to be a comedy of errors.....
We thought there was a place for him in Utah county and a move was to be made at 10:00 pm Saturday night---then that was stopped and we were back to nowhere land again. Finally someone said to us that moves won't happen on the weekend so it will be Monday before a bed will be available. That was scary to know but also good, because we certainly didn't start this process thinking Ben would be in a small ER room until Monday. So we waited with Ben and tried to help him the best we could in an impossible situation.
The problems with that ER stay were huge and will probably require some official complaining and advocating on my end in behalf of Ben and others like him......
BUT like I mentioned about my mother-in-laws passing, what stands out is the kindness and concern of others. The ER staff--doctors, nurses, security, and CNAs were so kind to us and to Ben--even at his most difficult. They were almost more frustrated and angry about the situation than we were. They started calling their supervisors and their bosses to manage the situation. They brought us sandwiches and water and were frequently checking in with us to see how we were doing. They sat with Ben when we had to leave to catch some sleep or attend the funeral. When I asked for something for Ben, medication, IVs, ice, whatever, they tried to make it happen as soon as possible. Every doctor who spoke to us directly apologized for the situation and expressed their support. Every nurse who came back on shift and saw us still there expressed their concern. They thanked us for the care we gave Ben. One night the desk clerk helped me walk in the hallway to get Ben out of the room. She had formerly worked at the State Hospital and was especially incensed that Ben was still in the ER.
Ben's psychiatrist was amazing. She continued to reach out to me over the weekend when she was "off" to check on Ben and to continue to advocate for him. A staff member came over to see Ben and when he discovered that Ben didn't have any clothes and his keys were lost, went and bought him some underwear and dropped them off. In the middle of Saturday night when Ben was in crisis and I was trying to restrict the medication they were planning to give him (due to adverse reactions) I called the CRU and spoke to the nurse there. She was so supportive and calming. She has known Ben a long time and she immediately reassured me that my insistence about certain medications was appropriate and gave me some alternatives to suggest to the doctor.
I left the hospital about 3:00 am Monday morning even though Ben was still awake so that I could see Tosha and her family as they left for Washington at 4:30 a.m. It was only the second time that I saw the grandchildren that entire weekend and only Niki was awake. Tosha said that Ava would wandering around our house saying "Grandma" over and over looking for Gary or I. She said it was really sad...and it made me feel sad as well.
Gary had told me that I could not return to the hospital for 7 hours so I didn't head back until about 9:30 to find that they were going to move him upstairs to the hospital's in-patient unit. After conferring again with his psychiatrist, we decided to allow that move even though it took us off the lists for possible beds in more desirable places, some which were to come available that afternoon. We couldn't risk it as Ben needed to get out of there. It was frustrating as we believe that they took him because of the legal risk of having him in the ER without suitable treatment, not because they believed they were the right placement. They first said that I could not go with him or speak to anyone on the unit because of Covid--but the ER administrators were not in the mood for me to not get what I wanted and they took me upstairs and forced the issue.
A week later (last Monday) he was moved back to the CRU where he wanted to be and felt more comfortable. He is still struggling but is eating and drinking and talking some. Unfortunately, he is back on the medication that caused all of his health problems so we are back to square one. We had to cancel his CT scans and appointments with the kidney doctor to allow him to stabilize so we are back to a longer wait to get some treatment ideas for his liver. And poor Ben--he has been through it with his illness over the past several weeks. This has not been easy for Gary and I and our family, but Ben has to keep on fighting while we can step away from it to sleep or do other things.
And underlying all of this, we still have not been able to tell Ben that his grandmother has passed away. That breaks my heart for him! He will also be heartbroken--both for the loss of his grandmother but also that his illness took away his opportunity to be there with us and the extended family--to mourn and to help us.
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