I have taken some time to process this experience because I feel like it is important and needs to be shared. Having a person in your family with a mental illness is difficult, but it seems like help is so far away, even though so many places preach to contact them if you need it. Southern Oregon has been one of those frustrating places for me. I have been told from the time I moved here that the only mental health facility is Options and they are the go-to for care. With all of the lip service, I have never been able to get help from anyone in my immediate area, without having to pay thousands of out pocket. My only option was to find services in Medford, a 40-45 minute drive away.
Recently, my family had an experience with a mental health emergency where the only option we had left was literally to fly my father in law back to Utah in a psychotic state because it was so incredibly difficult to get him help here. Bare with me for a minute while I set the scene for how this all transpired. It is important to understand what got us to our breaking point.
We first saw the signs of a problem in November. It is not something that we haven’t been through before with Bob. At first it started with a panicked phone call at 5:30 in the morning demanding for me to take him to the doctor for a rash. It was irritating, but I took him to Urgent Care where the doctor diagnosed him with Eczema and gave him some stuff, recommended a lotion and sent us on our way. That day he did have a legitimate skin irritation. I wouldn’t say rash, but definitely an irritation. It was when the hallucinations about the rash took over him to the point he began fixating on it and crying about it daily that we started to realize we had a problem.
At first we thought it was because we told him were were going out of town for Christmas. To us, it meant one day that he would miss coming to our house, even though he lived in an independent living center where other adults would be celebrating without their families as well. It was not a big deal because he has been coming over and sitting on our couch, watching tv for the past ten years for every holiday. To him, it meant that we were abandoning him. Never coming back.
Bob has always been extremely codependent on anyone around him. He has latched onto anyone that he could get to do any little thing for him. It wasn’t unusual for him to overreact to any situation. We thought for sure that his theatrics during this event was to make us feel guilty for going to visit family in Utah, which we have not got to celebrate the holidays with for five years. We had many conversations with him before Christmas, explaining that in reality it would be one day, not any different than us going out of town for the summer. But things began to escalate and we got to a point where there was no reasoning with him at all.
A week after the first Urgent Care visit, Bob called in a panic demanding we take him to the ER because the rash has now spread over his whole body. While I knew that this was not true, I couldn’t get him to calm down about it, so I took him to the ER. At this point he explained that the rash was from a chemical that he got on him while spraying his new cherry tree. The chemical was a chemical free copper spray. He was sure that this spray was what caused the rash and that it has overtaken his body, but also that he was now smelling the chemical in his room.
At the ER, they looked at his body. The only thing that resembled a rash was a small area on his chest. The irritation that was present the week before was gone, resembling more of a tan after a sunburn. I told the ER that he was starting to smell chemicals again (which had happened about ten years prior when his father passed away). I told them that something was going on mentally because this wasn’t normal. They dismissed what I was telling them and sent us on our way with a different cream and a benadryl type medication to help the itching sensation while also help treat his anxiety to calm down a bit. Guess what? That didn’t work. Hmm…weird. Could it be because there was something definitely wrong with something in his brain?
I told him that I would not be taking him back to the ER for a rash or for the chemicals as they were not going to help him. He began freaking out about the contamination in his room. I told him to wash his sheets and the clothes he thought were contaminated with the chemical. His response wasn’t quite what I had expected. He stated had tried to wash them but the chemicals wouldn’t come out so he threw his clothes and bedding away. Clearly, something wasn’t right. He had lost all sense of reason. I bought him new bedding and I told him if he feels like the chemicals and rash is bad enough, he could call 911. Maybe someone would see that he was losing his mind. So, two days later, he called 911.
His story at this visit changed. Instead of the chemicals being released by the copper spray, it was because he used Febreze to cover up the chemical smell and by spraying the Febreze, the two chemicals mixed together to create a stronger small, like two demons trying to fight for more power. The hospital did the necessary testing to make sure he didn’t have a UTI or a brain bleed. Physically, he was fine.
At this point it was becoming clear that mentally, he was escalating. The hospital contacted us to let us know he was there and there was nothing wrong and they were releasing him. I told the nurse the situation and advised her he had been there two days before. I asked her if they could do a psych eval. She told me that because he didn’t say the correct buzz words “I want to kill myself” or “I want to kill someone else”, they couldn’t even call anyone over to assess him. WHAT! This is a man, clearly in distress who was hallucinating and delusional but because he didn’t say the right words or run into the street naked and brought in by the cops, their hands were tied and they couldn’t do anything for him. They gave me a number of a guy who was supposed to help me get him resources as well as a couple other options, mentioning to me that it might be time for him to go to assisted living,
I had a week before our trip to work on this mess. I contacted his doctor for the ER follow up. I called the independent care center to get an idea on what needs to happen for him to move to assisted living. The doctor gave him additional medication to help take his anxiety and itch…a smaller dose of the medication he got in the ER on his first visit. I advised his doctor on the situation and my speculation. We agreed to try this and get through the holiday, while also trying to find him a psychiatrist or counselor (even though I knew counseling wouldn’t work at this stage because…been there…done that).
What he really needed was to get medication to stabilize this mental condition and his doctor wasn’t able to write him a prescription for what he would require. He brought in the behavior coordinator at the office, who went to work trying to figure out who to refer him out to. Another problem presents itself here because he has a Medicare Advantage plan and only two practitioners in our area accept Medicare. I called the assisted living facility who referred me to another person who could assess him. That person never called me back.
We went on our trip with strict instructions to Bob that if he had a true problem, he could call me and I would relay any messages, but he was not to call my husband. My husband would call him. At this point we knew that something needed to be done, but figured things would balance out when we got back from our trip and from there we could get him the help that he needed. Again, we thought this was a show meant to make us feel guilty enough to keep us from going on our trip.
For anyone who has not had to directly deal with someone mentally ill, it is very draining. My husband and I have been dealing with this every day for the past 11+ years. It can be very frustrating when added to all of life’s other stresses. We needed a break. We drew our boundaries and took our break. Guess what! He didn’t call. There were no emergency room visits. He survived the week. We called him on Christmas to the usual and expected whining. Although, this is when we found out that he took chicken from the dining area to place around his room to cover the smell of the chemicals. He was scared and felt abandoned.
When we got home, instead of getting a little better, things got worse and they got worse quick! He was now sleeping with the windows open and heater off to air out the smell. The temperature was dipping into the 20’s at night, he was freezing, but terrified of turning on the heater or closing the window for fear the temperature would create the chemicals to explode. He slept ready to dash out the door because he knew the chemicals in his room were going to blow up the building and he wanted to be able to get out of there when that happened. He had to sit right by the air conditioner/heater to control the temperature.
I went over to investigate the chemical smell. Obviously, there wasn’t a smell. His heater was set to fan on always, so I switched it to auto, gave him a benadryl and some anxiety medication to knock him out so we could all get some sleep. I was hoping that some sleep would be enough to reboot him. It wasn’t.
I ended up taking him to Options, the local mental health provider, for an intake assessment. He told his whole tale, hallucinations and delusions included. He told them he had tried to wash the chemicals out of his clothes, but when he set them on his bed, a cloud of powder got into his mouth. He uses Tide Pods. There was no powder. The intake assessor agreed that he desperately needed medication and she would do her best to get him a practitioner on an emergency basis.
This place makes you go to a counselor and then the counselor will decide if you need to be referred to a psychiatrist for meds. When we went to make that appointment, hoping to get into someone sooner than later, we were told the soonest appointment with a provider that accepted Medicare was two and a half weeks out JUST TO SEE THE COUNSELOR! You are looking at another two to three weeks to get medicated. There would have been an opening a few days later, but their policy is that the patient had to wait at least five days before they are able see a provider.
My brain was exploding at this point!!! It was clear that he needed help, but he couldn’t get in earlier because of his insurance type and office wait time policy. This did not make sense to me at all! We did not have that kind of time, but I made the appointment and hoped I could keep him afloat until I could find somewhere he could go.
I tried another route and made him an appointment for the next day to go back to his Primary Care Provider to at least give him anxiety medication to get him by. He didn’t even make it through the night without another massive panic attack.
He called me that night pleading for help. He told me he had went upstairs to the main sitting area to get away from his apartment because the chemicals were making it hard for him to breath. The febreze he used to cover the smell, had now contaminated his carpet. In his mind, the carpet was so hot, that it melted the inside of his shoes. He decided that was why the inside of his shoe had folded up. He could not reason that it could have been because he was pulling his foot out of his shoe without untying it.
I told him to sit in his facility living room area if he couldn’t go back into his room but if he couldn’t breathe he could have the facility call 911, because maybe someone will listen and help him. Maybe someone would notice the pattern of ER visits with concerns of hallucinations being expressed. Maybe we could get him admitted and on some kind of medication to stabilize him so I could get him placed into an assisted living facility, preferably in Utah. He ended up having the front desk call 911 and I met him at the ER. What happened next at the hospital was what makes me the angriest about this whole situation.
When I got to the ER, Bob was sitting in a wheelchair in the waiting area with a note on his wheelchair stating he was there because he spilled laundry detergent on the floor and inhaled it. WHAT! I was so mad. I went and demanded to talk to the intake nurse because this is clearly not what he is here for. Why would anyone call 911 because they spilled soap and they were upset about it? After explaining the situation and why he really was there, they changed his status to Psychiatric and within about 20 minutes he was placed in one of their psych holding rooms.
The ER ran their variety of tests, including the urine and blood work that they had done twice already the past week. No problem. Confirm that he is still physically fine. The ER doc agreed that maybe he needed to be put in-patient to be stabilized so he called in the Crisis Response Team, hosted by Options. I thought…oh this will be good. They can see the notes from the morning’s assessment and maybe we can get somewhere. Never have I been so wrong.
The lady that was sent was the most condescending, unprofessional person I have ever met! If I had her name written on any of the paperwork I would be blasting her right here because she has no business working in the mental health industry, let alone in a Crisis Response setting.
She began asking Bob questions. At this point Bob has told his story at least five times that day. Most of the details stayed the same, the only thing changing was the source of the chemical smell. He is without a doubt hallucinating. He is completely delusional, not making sense at all. He tells her about the heat, the demons, the inability to sleep, the chemicals, the carpet burning his shoes..ALL OF IT! She asked him when the last time he was able to sleep was. He told her it was the night I came over to adjust the thermostat (remember that I only put it on auto and I gave him meds).
She proceeds to ask him where he was going to sleep tonight. He told her he was not going to sleep in apartment. He wasn’t going to go back in there. He pleaded with her not to make him go back. He said he would just sleep on the floor outside of his apartment. She told him that he can’t do that because his landlord wouldn’t allow it. She asked if there was anywhere else he could sleep and then she looked at me.
I told her that he wasn’t staying at my house for many reasons. My house has too many obstacles and he is unsteady, I can’t take care of him, and I have a special needs child and any interruption in our day can wreak havoc. She asked me if he could go to a hotel. I asked her if she was serious! She wanted me to take a person who is hallucinating , scared, and paranoid to a hotel where he would be all alone?
She asked him why he able to sleep the night I came over. He told her that I had adjusted the thermometer and he slept in his chair (remember the explanation above). She told him to go home and take his medicine that they were going to give him and put the thermostat at 69 degrees and he needed to go to sleep in his chair. He picked up on the stupidity of her comments and asked her if she was joking. He is not the type of person to pick up on sarcasm. She left to see the doctor and comes back with his release/ safety plan form. She told me the form was a formality and he doesn’t really need one. I asked her what we should do if the Lorazepam they were giving him doesn’t work. She gave him a paper with tiny writing that had the crisis phone line on it and that he could call them. In front of her I rewrote the number and told Bob to call that number all night long and maybe they will listen to him then. She half assed the safety form and then sent us on our way. I couldn’t believe how someone who was supposed to be in the business of helping could be so mean.
The next morning I was at my wits end. How do you help someone who can’t help themselves and are blocked from the professionals who could help. We decided it was time to send him back to Utah where he wouldn’t be turned away.
I called the crisis line in Utah to see if they could help. Their response was so much different than the response we got here. The lady I spoke with on the crisis hotline gave me a variety of options. She told me about their mobile crisis response team who would come and meet us anywhere, even a public library or a hotel. She also gave me a list of other resources if we wanted to explore those instead. Ultimately, she left the decision up to us, but told me they would be willing to help and we just needed to call and let them know when we got him to Utah.
The next morning, Rob took his dad to Utah in the middle of his psychotic episode. Within hours of landing, the crisis team met them at a local hotel. After a half hour conversation, they told us we needed to get him to UNI, the University of Utah Neuropsych Institute. He needed to be admitted so they could get him balanced out and get the hallucinations under control. They were shocked that he wasn’t admitted in Oregon because it was clear that he needed help.
University of Utah happened to go into a trauma only center for a period of time, so the crisis team called another hospital to see if they had anyone who could get him assessed right away. They didn’t turn their back on him and send us on another wild goose chase for help. They found a hospital that was able to get him right in, let the crisis team at that hospital know he was on his way and directed that we take him straight the ER where he was taken back right away. They did a complete assessment and found a location with a geriatric psych bed where he could go inpatient. Within 12 hours of landing in Utah, he was receiving the care he should have been able to receive in Oregon. He was committed in-patient for a week.
There was a successful end to this story, but only because we had the means to get Bob back to Utah. If he had nowhere else to go, we would still be waiting for our appointment with a counselor, hoping for psychiatric access. He would be sleeping on the floor in the hall, scared and alone. Nobody should have to live like that, not even him. The lady who was representing the Crisis Response Team should be very ashamed of herself. She is very lucky that nothing happened that night and he didn’t end up harming himself because of the overwhelming need to stop the hallucinations. I have since filed a formal complaint against her and the response of the Crisis Response Center.
There is a huge problem with mental health care in our area. I have always been told there are just not enough providers or services here. I have seen it when trying to get my son help. I have seen it with the students I taught and their families. I have seen it with the homeless population in our community.
I understand that there is not much funding for mental health. I understand that providers don’t get paid as much if they take Medicare. It is much easier to push the problems onto the next person instead of actually try to help someone. We as a community are in crisis. We let insurance companies and large healthcare companies come in and dominate the healthcare industry, often making it impossible for smaller practices to sustain themselves. It is time to let our voices be heard. We need to share our stories so we can figure out a solution. This problem isn’t going away. It will multiply itself causing more pain and wreaking havoc in the communities which we live.
I have since found out that there is a backdoor to getting help here for anyone at any age. It is not something that is advertised or offered. First, a patient must be admitted to the hospital for 72 hours before CRC will admit them to any facility. The only way to get a person admitted for the family to demand that it happen. Asante has two dedicated rooms for this type of situation. They will not tell you about it or offer it as a possible solution. It is hidden away unless you know how to get things done. I asked multiple times if there was an inpatient facility where we could go get him assessed and checked in. Each time I was told there wasn’t anywhere like that here. Turns out, there is a behavior unit at a hospital in Medford. That, likely, would have been our next stop.
If you or anyone you love is in need of mental health support, please find a way to go wherever you need to go to get the help that you need. Advocate for your loved one, especially because they will not usually be in a state of mind to advocate for themselves.