How do single parents do it?

 How does anyone do this without a partnership? Seriously !!! A took time off to care for R and feels insecure about pulling her weight. Her other tasks involve coordinating care and benefits and that is a full-time job in itself. 

I can't imagine working my jobs and doing that on the side. No way. Endless phone calls that go round and round, waiting and waiting on hold or for an important callback. It's a pejorative term, but it's babysitting. Babysitting people into empathy, or even, in some cases, into competence. 

I've often said it's like the flip of a coin, you get someone willing to help and has the knowledge to do so, or you don't. It's the latter that takes all of your time. I still remember that one doctor from the trauma ward who gave us such a hard time. Everyone else was the best. But for her, we were an inconvenience she wanted gone. I can't really fault her too much because when you call in for customer service, or even support, these days you get a microcosm of that. Why? 

I have some thoughts, but they lead to profits over expenses. Training and manning the phone lines costs money and can be an afterthought. Sometimes, it's just plan laziness and they just want you off the phone as quick as possible. I think about this when I do my own jobs as I don't want anyone to think of me that way. We gotta do better out there. Some people really need help and shouldn't be turned away because it's too hard or complicated. Take the time to understand and help especially if you have a vital service like healthcare of any type of other vital services.

I remember A calling to sign up our son for  important services and being denied twice. His care team didn't understand why and neither could we. We even obtained a lawyer to help us navigate the application process. Then, A decided to try one more time and got a representative that took the time to walk her through the application properly and voila! we got 'em . . . finally !!! Such a relief and it feels good until you realize that it should be this way always, for everyone. 

Leaving the hospital. . . finally !!!

This wasn't the Level 1, psychiatric facility. Not this time. It was the bonafide main medical campus adjacent to the ER, trauma center and ICU. Our "home" for nearly 3 weeks. 

I'll never forget the day, yet, sadly, I don't remember the exact date. Part of the retrograde journaling effort unfortunately. 

On this day,  I realized the healthcare support system was ultimately unsupportive for patients and family outside the building. So many things went wrong and we had nowhere to turn except ourselves. 

First, an actually foremost, the physical therapist recommended the wrong transfer board. Thank goodness A and the medical supply person, insisted we buy the 60 inch. Anything shorter would have been disastrous. No disrespect as the PTs were nice and accommodating, but everything recommended to us was wrong as we discovered in the end.

We brought our van around to the already crowded patient loading area and wheeled R to the passenger side so we could lead with his bad leg. He freaked out, understandably so, yet tried as best as he could. He begged for "medical transport" which was an option we didn't know much about, but tried to find out quickly.

No one could helps us. We called the wing where we "lived" for 3 weeks, the case manager, the nursing staff and nada. Someone said they would be down to help momentarily, but no one came. We inquired about the PTs helping us, but could not reach them. I think someone else mentioned a liability issue. We were on our own. 

Even other patients and their families felt sorry for us. A strong man offered to lift R into the vehicle, but his pelvis was too fragile. The case manager suggested Uber or Lyft and I spent close to an hour setting up my accounts only to find out that wheelchair accessibility support only existed in larger cities like L.A. (sigh). We tried to get van through a taxi service and took another 2 hours. If anyone is keeping track, that's 4 hours since R was dischanged and we circled the lobby looking for ideas. The taxi service was especially torturous since we were transferred several times and given confirmation numbers only to be lost in the system. Upon waiting past the expected time with no one coming, we called back only for the confirmation to be useless and had to start all over again. 

In the end, nearly 5 hours, we decided and convinced R to try again. A had the idea to use the driver side of our van instead. We performed the exact opposite of what the PTs told us. R led with his body, the strong side, instead of his damaged leg and funny enough, he made it into the van. We would end up using and perfecting this technique over the next month as we shuttled him around to various follow-up appointments. To this day, I can't believe this was our experience and I'm glad we have each other. 

Minimal meds lead to maximal psych symptoms

So my son has the best insurance. He even has a great psych team in his corner. But the breakdown happened on a holiday weekend. 

He's in our first choice hospital and they are good to him. Let him pace, he sleeps in the main room, where he's comfortable.

His usual dose of meds is 5 mg. But they're giving him 2, 1 at night and 1 in the morning for 4 days. He's not well and the days are long. We've asked them if they can increase to 4 mg total to help control his psychosis, but they're waiting for the staff psychiatrist. 

I've reminded them that his prescribing psychiatrist is actually one floor above and has left all of her notes and directions for them to read. They still can't provide more, hence another . . . . 

Breakdown

First Post, Third Breakdown

I actually wanted to call this site Mental Illness in AZ, but the URL looked confusing as "mentalillnessinAZ.blogspot"

Breakdown is pretty clear though. Google defines it as:

a sudden collapse in someone's mental health

But breakdown could also stand for:

a failure of a relationship or system

in terms of how a patient, or perspective patient, navigates the Behavioral Health system.

 We have some of the best insurance in the state. Our son has both biological parents, who love him dearly, active in his life, but still our story is difficult. 

More to come . . . 

 

Back at the beginning, Dec 20th

R Home

Our kid happily resting on the new sofa while we wait. And for what, the police to call back, Crisis Response team (CRT) to come calling since we lost them the night before. We honestly don't know what to do, but we're trying to stay normal. At least, we got out of the cold and got some much needed sleep. I was groggy, but so so happy to be in our familiar setting. We're real homebodies at heart.

I received a text from an officer that he was in the area and ready to come by and pickup Ren. He asked to call me to verify what needed to happen. I consulted with Anjelina and we agreed this was still the best course of action and waited with bated breath. The officer arrived and introduced his two fellow offices. They asked us the usual: weapons, resistance, etc. and explained how it would go. Poor R was still sleeping on the sofa, completely unaware. 

They woke him up. Can you imagine coming out of your slumber and seeing three cops hovering over you? It was brutal. The lead explained what was going to happen. R pleaded with him and offered to take his meds, but it was too late for that. Consequences, right.

So now, R was standing up, not fully resisting and getting the silver bracelets put on. We followed the vehicles on our way to CRC. Sadly, we knew the way.  

Nana's 104th Bday hanging with the Crisis Team

Oman, what a day. I never would've guessed what would come next. I suppose that's pretty much the theme for this entire new life. Is it good that I'm getting used to it?

The day started with me going to Job 1. It had been a few days, perhaps even a week, that R started behaving erratically. I slept on our new sofa just to keep a closer eye on him.  But all that was pre Level-1. This is now. 

R just wasn't coming out of his state of psychosis. He acted so erratic that A finally called the local Crisis Response Team (CRT). We differ on that course of action. They came during one of R's previous episodes, yet didn't offer much in the way of help other than validation. Also, our insurance got a huge bill, but we didn't. Still scary nonetheless. 

Two older gentlemen arrived, sat on our sofa and observed R pace back and forth. He complained about the bot in his head, but we all convinced him to travel with us to the Center and get his Invega injection. The question was, would he accept it? So, the CRT team asked if we'd like an escort to the center, and we declined. We thought R might feel better if they weren't hanging on and we were overconfident.

R was spiraling and we felt the Invega injection would be the breakthrough we need. But we didn't know what we know now and had no idea the injection wasn't fast acting. In fact, the first couple of injections are rather slow acting until they build up in his system. Upon arriving at the center, we checked R in and waited patiently for the the Medical Assistant to call us back. R's peer counselor and doctor were on hand for support.  But R wouldn't go in the room. Once he realized what was about to happen, second thoughts arose and he flinched, badly. 

He paced around the back office and wouldn't listen to reason. Everyone tried to get him to comply, blocked his way and tried to get him to listen, but he wanted none of it.  Word to the wise. I didn't know the injection was so pricey and once it's in the syringe, it has 40 mins before it's expired and insurance may not pay for it. Yikes. Sadly, that was my main concern at the time. Thinking back, maybe I was being punished for being so petty when I see where we are now. 

At the Center's request, we took R outside to walk around the building while we figured what to do. It was best for everyone's nerves, including R's. We took turns and must have walked at least 50 laps around.  Finally, Dr. G came out and told us he didn't think R was coming out of it a and we needed intervention. So, the CRT was called once again. 

We convened in the main meeting room upstairs let the two young ladies go to work.  R agreed to work with one of them while his case manager and I talked to the other. I remember telling the story about his dog Brewski, who is so loved and how he now wanted to get rid of him. Huge Red Flag! The CM said she could fast track him to the Center's Level 1 facility without having to go through the Crisis Response Center (CRC), a place he hates; a necessary evil, but the lowest rung of stabilization. I'm not trying to dump on them. I know it's a tough job, it just needs more support. 

Now here's the sad part. We have to get him there and he's not willing. That's an odd thing to remember, but I can't forget. It took the entire center staff to guide him to the elevator. CRT informed us we may have to lay hands on him, gently, but also firmly. Boy, that was the truth. It was like a wicked game of Red Rover where we all linked hands to block off any exits. 20 minutes to get him into the elevator, then onto the car was even worse. At least an hour if not more. He wanted to run, to where I have not idea, but rational thought never figured into the equation. We actually tried shoving him into the van without hurting him. We reasoned it was for his own good, but he couldn't hear. I took the position of being inside the van on the other seat to pull R in, but damn!

It finally happened and A and I had to stand guard on either side to make sure he didn't bolt. So how can we drive safely. We tried, but then realized it would be too dangerous, plus, how would we get him from the car to the other building. So then, the long an futile wait for the police began.

Another tip from the BranMan. Learn how to set you child safety latches on your vehicle doors. We were not in a position to investigate how to do so and had to stand guard on either side of R. He wanted to bolt, where would he go, I don't know, but he wanted out !

If we had only known. That's a theme I'll be sharing though out this story so please keep an eye out for it. In this case, if we had only known we'd be waiting for the cops to show, we would have brought sweaters. Gadzooks we waited. CRT waited with us and called 911 repeatedly to get some priority. They had us do the same and the dispatchers did what they could, but we just waited and R fretted and wailed. It was just sad.

Finally, after 3 hours, we made the decision to do something. We let the CRT know we wanted to wait at home and our last call to 911, we asked as such. Of course, we get the standard "you know what's best for your family, but we recommend you wait" line. But they also know we've been waiting 3+ hours right along with us. They even as asked to drive and take a potty break nearby. Remember, the Center was closed and dark. So, they suggested we perhaps try the ER across the street.

We followed them them and then they told us we had to travel elsewhere, but nearby. During the trip, we authentically lost them at a traffic light. Moreover, we didn't know where we were headed. So we made sure R was going to be good and we headed home. On the way home, I asked R to please take his medication. That was the big solution to keep him home and not involve the authorities. He heartily agreed multiple times.

We got home and let the 911 dispatcher know. R refused to take his meds.