Fresno Psych Hospital Aftermath

Fresno pick up Aug 15 – Picking up Stu from the Pysch Ward 

Bianca calls … she’s the nurse today … need copay for the meds … are you nearby? here in Fresno? Yes, I’m picking him up this morning … just like we planned for weeks ... Of course, I’m in Fresno … gives me number to “My Meds” for co-pay for his medication 

We have been planning this for 2 weeks … assured the meds will be ok … no insulin available from the My Med pharmacy… they can order it and it will be here tomorrow, but WE will not be here tomorrow … the pharmacy was trying to get a hold of them all day yesterday with no luck… of course they were … 

They are going to do a paper prescription so I can get it filled at any pharmacy … oh wait … 

Now they are calling over to another pharmacy to see if they have it

After calling three pharmacies, they finally found it

Thought this would be smooth… What was I thinking? 

They had to call around to several pharmacies and finally find a CVS… But they ordered a vile, not the insulin pens and needles, so now we must wait for that to get prescribed by the doctor … brother cannot handle the viles as well as he can the insulin pens

I wait at CVS for them to fill the order

Then I find out that the psych med is only going to be good for seven days and we don’t see the new psychiatrist until day nine… So, Claudia, the VA caseworker, scrambles to get appointments in place and blood draws so we can get a four-day bridge on the psych med until he meets with the psychiatrist … this would’ve been a nightmare without Claudia … trying to handle brother and get all of his meds straightened out while out of town and on the fly, especially trying to celebrate his birthday the next day at the Beach … August 16

Psychiatrist appointment re-scheduled, the blood draw is successful, and we are able to get the interim psych meds in time

Now for the in-home care nurse for his feet… They sent two different nurses to take care of him … one for Friday and one for Monday … I told both of them we had a podiatrist appointment on August 29… And yet their office calls me to ask to get a wound care specialist appointment… We had already told them about the schedule several times …

This is where I beg and plead for a centralized database so that all of this information is in one spot and everyone can access it so nobody has to keep repeating themselves and there is no confusion about when someone is being picked up, what meds they need, and for how long they need it… the left hand does not know what the right hand is doing and the left foot does not know what the right foot is doing. It is such a cluster fuck.

Thursday rolls around for the new psychiatrist appointment … this day does turn into a nightmare for me …

I was running behind to pick Stu up, as the contractor I was meeting for my job was late, when we get to the property, he had not done what had been asked, so we had to have a longer conversation than we should have, had he done the job I asked him to do, three times, in the first place … sound familiar? Repeat!

This put Stu & I behind, we were going to have lunch … we stopped at a McDonald’s but the manager was being a dick (it was a woman) … we were waiting in line to get food and the staff was ignoring the line at the register … when she realized we all wanted to order, she yelled at one of her employees to help us at the kiosk … yes, we could have done that in the first place, but Stu likes to pay cash and he wanted to buy lunch … by the time we figured out we would have to order on the kiosk only, we had no time left so we had to leave or be late for the doctor’s appointment … Now I have to listen to Stu be upset about a cashless society that he will not be able to navigate. The people in line in front of us also fell into that category, not being able to navigate a digital world without help, and they were belittled by the manager who acted disgusted that she had to take time to help those that needed help with that … that is why I think she was a dick … makes me sad …

SO, needless to say, I did not get lunch, which is a dangerous proposition for me … I start to act like a dick also … there are some peanut butter pretzels I keep in the car, so at least they help curb the hunger, so I do not completely lose my shit …

We barely make it on time for the doctor’s appointment across town …

I am handed the new med list for Stu as we walk in the door. Claudia left it for me as I told her I could put the new meds in the med box. I am reviewing the list and am confused … there are a bunch of different meds on the list that we do not have. I thought we were only picking up the Clozapine and I would be putting that in the med box … not 6 other meds we do not have … this list does not match the one we received from Fresno …

We walk into the Dr. Racoma’s office, the new psychiatrist …

Stuart starts his incessant non-sensical babbling about wanting to join the PGA tour, finding a woman, wondering where the 72 million dollars went for the play list he carefully cultivated, took three years to put together, each song has 2000 followers and now where is the money?!?!

The doctor tells me he can’t control his mind it is racing so fast … and that he understands needing a woman, as he is a man … ARG …

This is where I find out the clozapine prescription needs a blood draw every week … EVERY FUCKING WEEK!!! Are you kidding me?! Stuart says it’s ok, but to organize him getting a blood draw every week it a logistical nightmare when he already has so many needs, doctors’ appointments, in home care appointments, to organize.

Dr Racoma is trying to organize the new clozapine prescription with the VA pharmacist … he doesn’t know how many days of clozapine they can give because it is a controlled medication depending on white blood cell count

I ask if we can move him to another med, but I also understand that Dr Racoma needs more time to evaluate Stuart … more than just this one visit in order to change his meds to something more reasonable … Stu is still extremely delusional on these meds … not near his former baseline, which he may never achieve again because his baseline is an ever changing target … depending on him, his chemistry, his food, the medication, the dosage, his environment, etc …

Stu refuses first generation psych meds as they can cause tardive dyskinesia which is uncontrollable shaking and may lead to Parkinson’s disease. Now there is medication for that, but that causes side effects too … more pills …

Stu tells the doctor that he knows down deep in his soul he is not crazy, and his goal is to get off the meds … Stuart is as crazy as they come … no doubt about it … without the meds he is psychotically delusional … in fact, even with them he is! Makes me question my own sanity when we have so many similarities growing up in the same house hold … I know some of his issues are from our childhood trauma as well … such a mixed bag of crazy …

This is when I ask about all the new meds on the list I was handed … will we be able to get these as well?

Since Dr Racoma is talking to the pharmacist, I am trying to get the info as to if we can get these prescriptions too, as we are going up the VA Hospital to get the clozapine prescription and ask which regimen Stu needs to be on … the old one or this new one … I am confused as I do not remember being told the meds changed … he is dismissive and tells me “Don’t worry about it” basically, you’ll figure it out when you get there …

Now my mind is racing … We have a new list of meds, half of which we do not have, a controlled med that even you, as the doctor, are having a hard time getting from the pharmacist, we have to arrange a weekly blood draw for this med, the weekend is approaching, Claudia is going on vacation next week and cannot help us get this arranged next week, the doctor is dismissing me, Stuart can’t shut up and actually parrots the doctor telling me not to worry about it, it is hot with no air circulation in his office. I have not eaten properly; I should actually be taking care of my own overloaded work instead of trying to figure out my brother’s mental health situation, I feel like my head is going to explode and that I am in hell right now … seriously … I remember feeling I was in hell … this is when I am actually very proud of myself … In a controlled tone, I tell the doctor that I would appreciate if he would not tell me to not worry about it … that I am asking a question and I would like it answered please …

He takes a minute, looks at all the prescriptions and says that Dr Sung, his general practitioner that he saw Tuesday, with Claudia, has prescribed all these new meds and this is the new regimen …

Then he is done with us … he could not get us out of his office fast enough … he said he had only an hour for each appointment as we had gone over … out, out, out … he held the door and was done talking to us …

Now even with all this bullshit … I like him and I think he will be good … he is obviously intelligent and cognizant … he needs more time with Stu … I realize psychiatrists are not warm, fuzzy people … they are more practical and that is what we need …

We head to the VA hospital which is as far north as you can go in Vegas … I live about as far south as you can go in Vegas …

We spot another McDonalds and make the move to finally get lunch; it is 4pm.

I am a little worried about time as we need to get to the VA pharmacy before they close, and we still have more north travelling to do …

I call Claudia … I leave a voice mail that she will need to redo the med box as it is more complicated than I thought it would be and would take more of my time than I have with all that is going on at my work … I have no idea at this point if we are going to get the meds we need for Stu

She calls back … she evidently had told me that Dr Sung had reconciled his meds, but I did not know what that term meant until I was staring at the new med list … she also had told the VA pharmacy that someone would come to pick up the meds, but they mailed half of them … WTF?!?!?

We get the VA pharmacy, at the VA hospital, in the northern most region of Vegas and get most of the important meds needed … Whew … including a shit load of insulin … HOWEVER, only a four-day supply of Clozapine … he needs another blood draw and a release from the state of Nevada, I believe, because it is a controlled substance, no release yet …  

Claudia frantically orders another blood draw for Stuart the next day and also tells me that he will need to be getting weekly blood draws for 6 mos. for the clozapine before he can go to biweekly blood draws and eventually once a month … we will somehow have to figure out how to get more clozapine next week in Timbuktu … in my spare time which I do not have right now …

We leave the pharmacy … I am discouraged beyond belief … I have spent half a day trying to understand and get my brother’s new meds figured out, only to find out we will be needing to jump through more hoops for a very longtime

There is so much pressure at my work right now … I do not have an assistant, I had to let her go for incompetence and attitude, so I am doing ALL the work right now, she is pursuing unemployment, the State has been calling me about it all and I need to hire a lawyer regarding all of this, I also just found out my Lawyer is retiring so I need to use someone else … this is the lawyer that gives me a lot of probate work, so now I will not have that money coming in, I owe a lot of money on the company credit card that I didn’t know about, my business partner sprung it on me this morning, money is thin right now as I have been taking care of Stuart’s shit, I have 5 A/C’s down, 5 vacancies’, owners & HOAs up my ass and someone’s fucking 2^nd pool fob isn’t working!  Yes, they have one that is working …

Claudia tells me she knows how I feel … I unfortunately turn into the dick I was referring to earlier and go off on her, this is her job, she gets paid to do this for Stu, I do not … ”No you do not know how I feel … you are not running a stressful business and getting stalker dialed by a 350 lb, 57 year old mentally ill, delusional child every few hours for months on end!!!” FUCK, FUCK, FUCK!!

I am WAY tired … exhausted from the War … the War on Mental illness … traveling and dealing with stress for weeks, I apologized to Claudia the next day … she is gracious about it all … I do not know what we would do without her …

I need to rest … God will handle the outcome … its in the God Zone … the zone where it is past human control and only God can figure out which way to go with it all …

Our dear friend Kerri is going to help us … that is a God send … she knows Stu and will be able to help with the day-to-day minutia around the house and running errands …

Aug 29 … We go to pick up this week’s supply of Clozapine and only the night dose is available … 150 mg or 3x 50 mg tablets … the morning dose is 200 mg so we could use 4 x 50 mg pills … but no … they want to give us the 200 mg tablets not 4x 50 mg. It will be available tomorrow afternoon … couple things … 1. he runs out of the morning dose tomorrow morning, and it is not available until the afternoon 2. We live 30 miles away through construction traffic … 45min – 1hr each way … we already took half a day today to do this trip with appointments … I do not have another half day to give to this …

Claudia is on vacation, so I call her temp, Candy, who arranges transportation tomorrow for Stu with Peer Support.  It almost didn’t work, because Stu is unfamiliar with this person and especially because he is a man … he says ‘no’ at first to the peer support ride, but we help change his mind to agree to the ride. I will need to arrive tomorrow eve to fill the med box with the morning doses for the next morning IF they do indeed have them …

I do not have all this spare time to take care of my brother … if we did not have the help we have, it would be disastrous …

This medication is not manageable … to take a blood draw every week and then run up to the VA hospital every week for the dose, only to be told it is not available until the next day and have him skip a dose in the mean time will not work … besides the fact that the clozapine is not working very well any way … he is still radically delusional and manic … talking all sorts of nonsense. It wears me out and hurts my head …

The whole situation is barely tolerable … only one reason I can stand it … Jesus … He keeps me steady in the midst of the storm and brings me levity and peace. I do not experience that all the time, but it is there when I reach for it

I did not experience that peace at the pharmacy window when this little gal was telling me they did not have the day dose of clozapine and that it would be available tomorrow and she didn’t care if he had to skip his morning dose because she has no idea how detrimental that would be to Stu, me, Vegas and to society in general with him on the loose unmedicated … in fact I was livid … I kept it under wraps for the most part and walked away so as not to go off on her … it is not her fault … it is the system once more fucking itself over …

We do all this work, jump through all these hoops to get Stu evened out and it could all be for naught because they can’t figure out that 4x 50 mg = 200 mg.

When I mentioned that to Candy, she said “oh maybe because they didn’t want to give him so many pills” … I am not buying that bullshit for a minute … they do not care how many pills get shoved down his throat … ‘they’ are not paying that close attention anyway … OBVIOUSLY …

Stuart is also discouraged by all of this … he can’t stand all the appointments and pills … he wants to work and have a family … which is very unlikely given his state of being … he wants a normal life like everyone else … he doesn’t realize he is like a child and cannot even take care of himself, let alone a work schedule or a family

Have you ever had to listen to psychobabble for hours on end … it WILL drive you mad … and if you were already mad to begin with, you are totally fucked!

I have hours and hours and hours of psychobabble on voicemail from Stuart, not to mention the hours and hours and hours of psychobabble I listen to while I am with him … truly maddening … and people wonder why I twitch when I walk into the room … Ha!

I am going to keep writing about all of this until it changes … until people get mad about what is happening and help me change it … I am sure we are not the only ones … I am an educated, professional woman and I can hardly navigate this whole system … and ain’t nobody got the time to be messing this much with trying to help someone who cannot help themselves …

The system is more insane than the patient … God help us!