Meanwhile back in Tempe….
Most people who hang out with me locally know how much I’m in love with the Tempe Town Lake Pedestrian Bridge. I fell in love with it at first sight seeing it on the news, was there a few days after they opened it, had a miracle experience on the bridge (which I will write about another time) and since then I hang out there quite a bit. Definitely I go there for special occasions or when in that kind of need.
I do this ritual each time, either by myself or with whomever I’m walking with. I think of something in my life that I’d like to transform or sometimes just simply a wish. I step on the bridge heading the North direction and as I place my foot there I close my eyes and ask that anything inside me impeding this wish to come true be washed away from me.
As I (we) turn to head back, I ask that everything be brought to me that I need to fulfill this wish. Then I invite it all in to my body as I’m walking. I’m telling you, this is a powerful ritual and one that has transformed many things in my life.
Alfonse and I stepping back last Sunday
Now with that prelude, I’m going to tell you about how just two days after being on the bridge and asking for transformation, I ended up screaming on the phone at a member of John’s
refusal to ACT Team and even dropping at least one F Bomb. This little encounter falls under the categories of “It’s About Time” and “The Last Straw”.
Let me back up a minute.
I know what you’re probably thinking, regular readers. I thought he was already out of there.
Well it wasn’t quite that easy. You see, fortunately and unfortunately, John has been on a highly regulated medication called Clozaril for months. It’s kind of a med of last resort for Schizophrenics but as his Dr. said “when it works, it’s a miracle”. In John’s case, it was that miracle. His deeply ingrained voices literally disappeared within two days after weeks of tormenting him.
The bitch though is it’s very regulated by the FDA causing him to have to have weekly blood draws to check his WBC and then it’s only dispensed a week at a time. The facility where the
terrible ACT Team resides has been handling both of these tasks.
I spent my entire afternoon that Friday before heading down to the Ranch calling different pharmacies to see if they dispense it to be hit with a big fat ZERO. Most of them just don’t want to deal with the hassle. They also have to keep records of the labs as does the Dr. I tried my own small compounding pharmacy who did go the extra mile to get on the registry for it but then the funding issue raised it’s head. They don’t deal with Medicare. I just didn’t have time to get it set up before I left the country for a week.
I finally broke down and called the
*#^@^$ ACT Team to request they float him for one more week until I got back and could figure this out. Aside from the med, I was also needing to set up the labs. John just can’t handle these kinds of tasks alone and I’m a trained nurse and…it was just something I needed to do for him.
How interesting and fortunate and bizarre that the Clinical Coordinator said to me “we’ve not even discharged John. He didn’t say clearly HE wanted to be discharged”. I had to laugh as I knew he did say that clearly. I knew it from John and I knew it from Manny who were both right there. That was the entire purpose of the meeting. I said it myself on the speaker phone!
This reinforces my belief that this team is invested in keeping names on their books (in one email forwarded to me, John was referred to by some kind of acronym like “the bhc”, not even his freaking NAME). They need to have those names to keep their funding coming in to keep their jobs but they provide next to zero services for those participants.
his name is John Monkman you assholes
Believe me once this is all settled and finished I will find a way to blow the lid off of this and expose them. I’ve written letters and filed a formal complaint but I will be taking it to another level: newspaper, legislature, something. Someone has got to say something. Think of all the other patients suffering in this highly dysfunctional program who have zero advocacy. I will be a voice for all of them. I need to bring this to some kind of completion just for myself even.
Anyway, I’m told he’s not been discharged which honestly I’m totally relieved to hear in that moment because they HAVE to provide his weekly meds while I’m gone and that’s 100% of what I’m caring about in that phone call.
I just go along with it and say we will figure out the rest when I get back, being very nice and accomodating. Knowing I’m completely using this system right now for only one reason and I’m perfectly fine with this.
Ok on to my meltdown.
Imagine me at work on Tuesday, anticipating my father’s arrival that evening, on a small break between clients. I see I’ve had a missed call from a number I sort of recognize but didn’t have listed in my contacts. The number calls me again on the break so I pick it up.
It’s Lynn, John’s “Compeer”. This means she’s a participant in the program (not ACT Team, basically the general mental health system) and is a volunteer assigned to visit and be a supportive friend to other patients. She was set up by another coordinator before ACT Team got on and I don’t even think they know of her existence. Which is good. They’d probably have tried to knock her off too as they did his counselor saying they’d provide their own, only to have a complete and total zero follow through on that. TERRIBLE!
Lynn sounded somewhat stressed and relayed a story to me of that morning having gone for her usual visit with John at 11am. They were planning to go to lunch. She found him hearing lots of voices (that’s been months) and he told her the voices were telling him to stick a knife in his throat.
Yes, take a breath. This psych patient herself arrived in to that scene.
As she said “I’ve had suicide training so I knew what to do”. She called her supervisor, called me (I was with a client) and sat with John.
Here’s where the match lit the fire in me. John told her he’d been waiting all morning for his daily “med check”. You know, the one and only service ACT Team has ever provided? The one he has never needed? The one where he’s at the mercy of their schedule, waiting between a two hour window every morning so someone can come to the house and watch him put his pills in his mouth and sign a paper? That one.
And, they never showed up. No call, no show, nothing. John later told me this was the third of fourth time that had happened. They don’t follow through on all the services they claimed were available that first day we transferred him there: finding volunteer work, voc rehab, assistance with home tasks, social activities. They have provided exactly ZERO of those services and the one and only service rendered has been the unnecessary and unreliable and disruptive “med checks”.
I’ve told them, John’s told them that he prefers to take his meds right upon waking. He feels worse in the morning and gets up early and taking his meds helps.
Well this Tuesday, he had been waiting at least five hours for those *#$#^@ to show up and no one ever did. All the while his symptoms started escalating in to voices and suicidal thoughts.
Lynn told me she’d stayed with him for an hour after he took his meds and his symptoms abated and he decided to go get a massage. She called me then saying she felt confident that he was better, that he was not going to be alone and that she knew my father was arriving in a just a few hours.
Then she threw kerosene on that smoldering flame inside me, sharing this:
She told me she’d called the ACT Team to report this, was transferred to John’s now third case manager, someone I’ve never met and told her what happened. She was obviously and understandably still upset and very worried about John (thank God someone was). And she said to this person “someone dropped the ball here”. This mental health professional barked back at her “NO ONE dropped the ball!”.
Then proceeded to hang up on her.
Another mental health patient reporting a crisis, involving a potentially suicidal participant in their program. And she was hung up on.
Ok now my waiting room is filling up with smoke coming from my ears as I said “Lynn I need to get off the phone right now and make a phone call. You handled this perfectly. Thank you for calling me and I will let you know how he’s doing” through my grinding and set jaw. My eyes filling up with blood.
I then called the ACT Team and after much shuffling around (you can rarely actually get one of them on the phone but every time I’ve been there they are all sitting around in cubicles. They certainly aren’t out servicing their clients I’ll tell you that!) I got someone. Not the case manager who hung up but another person.
And I unleashed. The words “you guys are TERRIBLE, just so TERRIBLE” were probably said about 15 times and she kept repeating back “I know, I understand”. Of course she KNOWS! She works there! Isn’t that bizarre?
pity the fool who messes with a Scorpio OR a cheetah
I told her the med checks are over. That John will be getting up in the morning and taking his medications on his own. I don’t care what they need in terms of their program, I told her. I’m swimming as fast as I can to get him extricated this week and they WILL NOT penalize my brother for their own poor performance. That I have a lawyer. That John is protected and I’m prepared to take this as far as I need to.
I told her John is UNSAFE in their care. I was just all over the map venting. I have to say, it felt good. That volcano needed to erupt. F bombs flying and all. Someone needed to hear the reality of the other side of their incompetence. Sometimes someone needs to just display that outrage!
She kept saying “do you want to talk to my supervisor? John’s case manager?” to which I replied “the time for talking has ended-everything will be in writing now. We are past a stage of talking.”. I assured her I would be getting John out of there within the next two days and if he needed his meds filled there this week if we couldn’t find another pharmacy yet then the WOULD be filling them for him. They will not allow him to walk out of there without a plan for his critical meds. And my lawyer will make sure of that.
Then I hung up on her.
Whew! That was a lot to relive right now.
Sometimes you just do have to go kicking and screaming from a relationship.
The good news is we met with the entire team yesterday (minus Lynn)–Dr. Yasinski who will be taking over, Manny Walker his advocate, me, my Dad and set up the new plan of action. Manny will be walking in to
Hell the ACT Team this week with John and making sure he gives them formal notice of his intent to be discharged clearly and likely in writing. Manny had to laugh that they didn’t think John had done that already but again it kind of did work in our favor for just one week. But still….really?
A Psych patient is more competent at monitoring my brother than this “intensive monitoring program” for the most acute patients in the system? Really?
Oh and as a final note on them. No one, not one person, ever called to check up on John after being told he was suicidal that morning. It’s just astounding, the apathy. I don’t even have a word for it.
Yes this will all be documented somewhere where it matters. These people need to be exposed. This sham of a program using the mentally ill in my community needs to have a light shined on it. This is tax payer funded! And I’m just the snappy Scorpio to do just that. My heart breaks for each and every one of their participants knowing what I know.
They are simply being used. As if they aren’t disenfranchised enough. The very system designed to help them is abandoning them and using them for financial gain. And that is exactly how I see it with no evidence to the contrary.
So I asked for anything impeding a wish to be washed away on the bridge on Sunday then this erupted two days later. Interesting huh?
someone else thinks like me on the bridge
John is doing well now. He’s happy my Dad is there indefinitely (at least until Feb sometime) and feels good about the new direction he’s headed. That we’re all headed.
We will all be going to Sedona this weekend and showing off all our hard work on the house to my Dad who’s not seen it since it was empty! I’m excited about that. And Steve’s coming along too.
I’d say we have a lot to celebrate having survived this war.
saw this blue heron on the bridge
12 thoughts on “bridging”
Absolutely disgusting Kathy! What a complete cluster-fuck of a “program”. (Pardon my language). Your fury is justified – go after them!
Oh Queen, that is my favorite cuss word of all time “cluster-fuck”. Thank you for using it. 🙂 Oh they will regret the day they ever met me. If they even care about themselves that is. I’m going the distance now. My stinger has been raised far too many times and I need to STING. You do not mess with my family, period.
Oooooohhhh Our Kathy,
First before I reply about this travesty, I want you to know that I don’t miss a day of your writing. I need to say this because sometimes I don’t send a reply.
I only wish that everyone had a ‘warrior’ like you in their court. I know that you realize your own self worth on all levels so I won’t prattle on about it (even though you deserve the acolades).
Just a little something to lighten the mood. In this post, I saw John in you – You in John (physically) for the first time. I’ve always felt that John looks like a carbon copy younger version of your Dad. I still feel that way except when he makes the ‘Fishy-Kissy’ face with you. That picture cracks me up while also moving my Heart to smile and giggle; even as I made my own version of ‘Fishy-Kissy’ face in my mirror. My FK face is a bit more dramatic looking but what can I say? If I knew how, I would attach a selfie of it. It would put everyone into uncontrolled fits of laughter.
I wish there were more people like you in the worlk. You are such a treasure Kathy.
(((((♥ ♥ ♥ ♥ ♥)))))) from Paula
Please send! I’ll make a whole post of FK faces. How about that? Heehee
And thank you- my self worth isn’t as elevated as you might think so the props mean a lot! Xo
For cripes sake, I am at a loss for words I can post here! I have my own gripes and contempt for the lack of competent mental health services and this only proves to me that we have such a long way to go in getting it recognized as being as important as our physical care. Don’t let me get on my soapbox…..
KCL, bless you for taking on another issue. My sincerest wish for John’s care to become smoother and easier for all of you.
Hey Scorpio! (I’m one too) You did good. I believe that it would be VERY effective to send a complaint letter that contains ALL of their performance failures to CMS! Who better then to their payor source that they continue to rip off as they are paid well by them BUT deliver NONE of the actual promised services to the poor patients. Medicare needs to hear this. I am not saying that you should forego exposing them in the media if you have a way to make that happen!
Kathy, I know you will fight the good fight in this awful situation. Your brother’s life is so easily sacrificed by this “intensive” program. I know how they tend to run. Wanna make a bet? One published article about the situation and many others who have been let down by the system will flock to you. You’re that kind of person.
Another Scorpio here! That’s just terrible but you’re handling this so well. Lots of good vibes for your dear brother. Have a wonderful time at Sedona!
Bravo!! You go Girl!! The world needs your kind of patient/resident advocacy. Thank you for going to bat for the many who have no voice for them. May you all find peace and serenity in Sedona. Thank you so much for your very insightful blogs. From another Scorpio! Kat
Wow, I’m a scorpio, too! I hope you nail their scamming butts to a very public excoriation! They are part of the waste and fraud that inflate the budget of medicare. I am on permanent disability and have experienced the same Crapola with other groups that are not in it to help, just to make $$. Sick. Yet again you have turned that around and made
uplifting occur, not only for Alfonse, but also for allyour readers. I too