still swimming

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Happy Thursday!

I’m back after two days of utter exhaustion and a degree of depression/full on crankiness.  Pretty sure I got spun in to that state by all the head banging I did for hours on Tuesday followed by another session yesterday dealing with the mental health system for John.  I don’t want to keep going on and on but I do want to document our struggles because I intend to take it to a higher level and just want to have a chronology to rely back on.  I also know that they are reading here, at least some of them, and I hope they do (not that I think most of them care but it just feels good to know someone’s getting called out and knows it sometimes).

First of all, John is doing well right now.  Fingers crossed this continues through the holiday as we will be all together in Sedona for a significant period of time.

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I don’t know about the rest of you but something that just gets under my skin are issues around injustice.  Particularly injustice toward those who can’t defend themselves (the infirm, animals etc).  It makes me absolutely nuts.  I tend to gravitate toward using my helping in the world time around these themes.  I won’t dwell on the recent issues with Alfonse but just to say, we have a young new attorney helping out in our attorney’s office who worked in the mental health system here for years before going to law school.  So he knows the AZ system inside and out.  He spent a lot of time on the phone with me this week and I can’t forget this exchange.  I said to him “I feel sometimes like I’m getting paranoid myself thinking these people are now actually trying to sabotage my brother’s mental health status by blocking him from receiving services now–not just not providing the services but actually setting out to block him from receiving any elsewhere”.  This attorney responded (paraphrasing) “you’re not paranoid.  I suspect that’s exactly what’s happening.  I saw it time and time again.  A squeaky wheel calls them out on their incompetence and then they get sort of targeted and punished”. 

Yes, he sure did say that.  Punished.

That just makes me want to bawl.  Again, what has happened to these people?  Did they ever, at any point in their career, care about the population they are hired to help?

It was validating to hear those words and he just said “You’ve been hitting that delicate balance most advocates go through–not calling them out on their not providing what they are there to provide vs. calling them out then getting targeted”.  Either way, it’s just hideous.  I just said “they messed with the wrong family if they think I will sit back and let them neglect or worse yet, harm my brother”.

The problem is we have to keep him engaged in the public system for groups and classes that are with other mentally ill people because that is his peer group.  Completely mainstreaming John is not a smart idea.  We can’t deny he has a major mental illness and needs to be around peers who also relate.  The public system is where these people are.  I have high hopes for this clinic Wellness City where, so far, we’ve been treated with kindness and respect, they have an active community and he will enroll in there asap.  The problem is, the ACT Team removed him from the mental health system entirely, having him sign a form that says not one word about doing that but effectively accomplished that.  This is the kind of thing that I mean about punishment.  He was not clearly informed nor did he understand these ramifications.  He just thought he was removing himself from their cesspool program but lo and behold he closed his entire case through signing that paper they placed in front of him knowing that’s exactly what he would be doing.  Now they don’t have an appt. until Jan. 17 to get him back reenrolled.  It’s just all so damn frustrating and designed to keep people sick and get them sicker I believe.  There are systems, as hard as it is to believe, that are in fact designed to keep participants from getting well–some of them are called Insurance and Pharmaceutical companies but I digress, sort of.   It’s just so hard to wrap my head around but living inside this with him all these months I’m getting the clear picture of the blackness that exists out there.

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And my brother is the sweetest most deserving person you could ever meet.  I’m not, I’m a pitbull when it comes to protecting people I care about and I do have fangs that have a mind of their own sometimes and will arise in these kinds of situations, but not my brother.  He’s like an innocent child.  How do these people sleep at night?  Seriously?

Enough of that, I’m getting myself worked up again.

I fell in to a state of exhaustion the last two days triggered I’m sure from all of that head banging and also just from ….well, Christmas.

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I didn’t even realize this year was the 25th anniversary of Cindy’s death until a producer from the Ricki Lake Show told me as I breathlessly fast-walked down a sidewalk in Central Phoenix heading for the Arias courtroom last Spring.  He indicated it was part of the reason they wanted me on the show–that anniversary. I remember stopping in my tracks, doing the math and saying “you’re right, it’s 25 years”.

Not exactly something you want to call a  milestone but I guess it is.  I’ve survived 25 years since she was taken that Christmas in 1988.  We all have.  It’s kind of hard to believe.

I’ve said it before and say it again, grief is an unpredictable mistress.  It will let you slide when you most expect her visit then land on your doorstep with all of her suitcases and carryons when you think you’re just breezing along with your life.  She hit me hard this week.  I had a hard time even staying awake yesterday, in fact I took an afternoon nap and would have stayed in bed had I not had plans that evening.

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Like with the trap my brother landed in that has no clear exits, grief can just squeeze you in to itself and hold you there making you it’s own sometimes.  For as long as it wants to until you surrender.

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I tend to jump in to creative projects when I’m down like that as it’s one form of medicine that both distracts me and opens my brain in a new way and then I often end up with something I feel good about on the other end.

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Night before last I made a small tree honoring Travis Alexander and Cindy.  I have written before about the astounding similarities in the two of them–both 30 when they were murdered, both lived in the same city, both murdered by sociopaths who carefully planned and covered it up after conning them, both were killed in nearly identical ways, both left to be found by someone else and on and on….

No wonder I got so sucked in to that trial.

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I’ve gotten to know Travis’ siblings, some quite well.  So I made this little tree to send one of them which seems like something that could decorate a gravesite but it will end up wherever it lands.  It has a lot of personal meaning to me this little tree and it did make me feel a lot better after making it.  It’s sitting on my porch right now waiting to be picked up by the mail carrier.  As is the bag of my sweet spicy nuts I made ten thousand of this Christmas.  They turned out pretty good (burp!).

Last night I was invited to go over to Amy’s and make cookies with her kids.  I was driving over there, exhausted, thinking of how I was going to explain I couldn’t stay long, that we’d make this one batch then I’d have to leave. I was just that flattened, emotionally drained and physically spent.

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When I got there though, being with her girls, with Amy I perked right up and ended up staying for hours.  We exchanged all of our Christmas gifts (I got SO MANY cool things like a cactus garden and Tim Gunn’s memoir..yay!), watched Project Runway, had dinner and of course made our cookies.  It ended up being just what the Dr. ordered as I felt a whole lot better when I got home and this morning didn’t wake up with that terrible feeling of dread I’ve been fighting for a few days.  While trying to perk myself up making plans and doing fun things.  That feeling, when attached to you, is damn stubborn and wants to keep reminding you it’s still there, waiting. Waiting to be acknowledged I guess.

When I got home last night I ran in to the best article I’ve ever read about grief.  I’m going to share it here.  Here is an excerpt that really spoke to me:

If instead of pretending we are okay, we would take the time to wail, to weep, to scream, to wander the woods day after day holding hands with our sadness, loving it into remission so it doesn’t turn cold inside of us, gripping us intermittently in the icy fingers of depression. That’s not what grief is meant to do.

Grief has a way of showing you just how deep your aliveness goes. It’s a dagger shoved down your throat, its handle bulging like an Adam’s apple protruding from your neck, edges pressed against both lungs, creating a long, slow bleed in your chest that rolls down the edges of your life, and you get to handle that any fucking way you want.

If you have been sitting on old grief from your childhood, your failed relationships, the loss of a family pet when you were nine, and any other losses you were unable to honor in the past, this left-over grief will also come through the broken damn. Let it.

“Grief does not change you… It reveals you.” ~ John Green

And herein lies the gift that cannot die. It changes the course of your life forever. If you allow yourself the chance to feel it for as long as you need to — even if it is for the rest of your life — you will be guided by it. You will become someone it would have been impossible for you to be, and in this way your loved one lives on, in you.

http://www.rebellesociety.com/2013/12/18/5-lies-you-were-told-about-grief/

Read the whole thing. I want to know this woman.  She speaks a language I understand and want to speak more boldly myself.

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I’m just going to leave this post on that note so we can all ponder these thoughts together.

I’m doing ok.  I really am.  I’m looking forward to our Christmas Eve Dickens dinner party we are planning, our pizza Elf movie party this Sat. with four of our Sedona friends at our house and putting up our tree up there this weekend.  When I think about it, I think it’s a pretty damn big miracle I can look forward to anything around the holidays.  Ever.  I still don’t send out Christmas cards anymore.  That ended in 1988 and never kicked in again.

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I am sincerely looking forward to it all this year…and to my heart opening wider to my family and taking the risks that I have to take to get there too.

And I’m grieving, acutely grieving again all at the same time.

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And I’m going to take care of myself in a very deliberate way.  Extreme self care is what I told my hair stylist/friend this week.

That’s the name of the game right now and I’m gonna play it.

Now I gotta run and get to the gym and a mani/pedi.

Hope you are all feeling everything you are feeling right now and that’s the most honest wish I can offer up today.  For me and for you.

still fighting

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And the saga continues with attempting to set up Alfonse with decent services.   The bizarre nature of how hard it is for a mentally ill person to actually receive the most basic of services to help them, although on the surface they appear available, keeps getting stranger.

Just doing a quick recap here to continue to document this maze of the mental health system in AZ which, in my opinion, is designed to disallow mentally ill people from actually receiving services while taxpayer dollars go to the providers and, in some cases, like a squeaky wheel situation such as myself, patients are punished for actually trying to reach out for adequate care.

So where we stand now.  The completely dysfunctional and broken ACT Team proves over a period of months that John is just not going to get about 90% of what was promised when he was transferred there.  And what he did receive was marginal and sporadic.  Let’s not forget, the only service they ever provided were unnecessary “med checks” which were unpredictable and boiled down to 5 min. home visits to watch him take his medication.  No assessment, no continuity or relationship building, just a pop in to watch him swallow his pills, on their timing while he sits around and waits, the signing of a paper then leaving.  That is the sum total of what he received.

On John’s transfer to the ACT Team, I was with him, and we discussed how John is totally med compliant, how the last thing I worry about with him is taking his meds and needing to be observed, but how he needs socialization, meaningful volunteer work, at times some home management issues and counseling.  They forced us to let go of the Dr. who John had started counseling with promising they’d find someone else for him .  Why, I don’t know as John had already established a relationship with this Dr.  In the end they provided a BIG FAT ZERO for all those other services.  None.  Ever.  When I would ask about them, I was told his case manager would need to assess him for those things, “bring it to the team” who would then “staff it” then decide if in fact he needed those services then provide them.  The basic assessment for those services never happened.  In fact, two out of three case managers he had with ACT Team never met with him even once.  Not once.  Other than perhaps it being their day to pop in for the 5 minute med check. Do you see what we’ve been dealing with here?  A shell game.  With John waiting and waiting and waiting for nothing.  After being forced to terminate with the one person who had been helping him.  For a reason that was never explained to any of us.

This all culminated in to a day a few weeks ago where his “Recovery coach” from another system showed up to find him having waited for hours for the “med check” person to never show up or contact him (not the first time), thus he didn’t take his morning meds, thus he was hallucinating and talking about harming himself.  She watched him take his meds then watched him calm down, called his case manager at the ACT Team and reported this who then proceeded to hang up on this volunteer when she told this “Intensive Monitoring Case Manager” about one of her clients in an acute status and saying “someone dropped the ball”.   This is the level of service John received for months with this terribly dysfunctional “team” put in place to manage the sickest of the sick.  I kind of have to agree, no one dropped the ball, as no one on the ACT Team has ever held the ball in the first place.  They have never actually engaged in a relationship with my brother, over a period of months.

That was the day we decided to pull him out.

So John goes to sign the required paperwork to get discharged from the ACT TEAM only and in reality is handed a paper which closes him out entirely from the entire mental health system:  Magellan.  The system the ACT Team is contracted with.  Even though the word “Magellan” is not mentioned on that paper, that’s what they effectively did.  Obviously John didn’t understand he was relinquishing all rights to ANY services in the entire State of AZ with removing himself from this “Roach Motel” situation.  But it’s what they did, as a final parting shot.  It’s one of those “if you won’t have us, you can’t have anyone else” type of deals.  Even our lawyer, who has worked in these systems for years, agreed, at this point it’s become punitive to John.

What in the Hell is wrong with these people?  Seriously?  Did they ever care about this population?  Have they been worn down by the system?  What has happened to these people?

Let’s not forget, at Choices Enclave they boast all of these classes and groups, including support groups for family members.  No one EVER told me about those family groups (I saw them on the website), HUNDREDS of patients walk through those doors and my brother was usually the only person attending the classes there.  Sometimes he said there would be one other, the most he ever saw was 4 people.  This means one thing:  NO ONE is encouraging them to get to those groups.  No one from Choices Enclave encouraged my brother!  That was all me and his advocate getting him hooked up there.   Hundreds of participants and one person shows up regularly?  And they KICKED HIM OUT!!!  Because he wanted his private Dr. , they kicked him out of all the services.  Now they don’t have to hold those groups if their one participant doesn’t show up.  See what I mean?  It’s a complete and total sham.

So now, after lengthy talks with the Magellan Ombudsman (who seems to be wanting to help us) and our attorney, our private advocate and the director of the new facility we are trying to get him plugged in to, we are strategizing a way to get him REenrolled back in the system without too much water rippling so he can quietly slip away from that hideous ACT Team,  from Choices Enclave altogether and get transferred to a new clinic (my attorney prepared me to see ACT Team try to cut him off at the knees again but it’s his legal right to transfer).  Then get him set up in a simple system with his own private Dr. and the classes/groups/community at Wellness City.

I’m convinced, after all we’ve been through, that the Mental health system in AZ is designed to, like many insurance companies, disallow or discourage services for the population they are designed to serve. And at worst, punish them for demanding the services they are designed to provide.

And I’m not alone in this perception.  But I will keep speaking aloud about it and if nothing else, educate tax payers about what is REALLY happening with this population.

It’s not that the money isn’t there:  it’s that apathy and incompetence are ruling the day.  A lethal combination.

And I will not shut up about it.

You can read more about our attempts to navigate the mental health system breakdown in AZ here and here.

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It’s been awhile since I’ve done an update on my dear Alfonse.

It’s been a time of change lately which always or at least usually, tends to to involve some tumult.  Over a few weeks we managed to find a pharmacy who will dispense his highly regulated med, a lab to get his weekly draws, remove him from the dysfunctional, opposite of helpful ACT Team and get him set up with his new Psychiatrist, someone who can actually be there consistently for him and help him.  Whew!  Yes it’s been a lot of phone calls and managing including his professional Advocate Manny, his volunteer Compeer Lynn and of course my Dad and I.  He had a bad spell around Thanksgiving which was sliding fast toward another hospitalization but thankfully I caught it and found out he was, of no fault of his own, taking 1/3 his major med dose due to a glitch along the way and the wrong labeling on his bottle.  I’m telling you, these medical issues are never to be ignored and not stayed on top of.  Especially diagnoses as delicate as my brother’s sometimes.

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Yesterday turned out to be another roller coaster while in the middle of my work day.

I received notice from Manny that the place where the ACT Team is located, where John has been taking daily classes regularly, has decided that since he no longer sees one of their docs, he can no longer attend their classes.  It’s not surprising they torpedoed him like this.  He has received marginal at best services there, they got called out on it (by me–who is preparing to call them out in a more descriptive ordered way in an article I’m working on for a national forum dealing with these things , ala this is what your meager tax dollars are actually going to), so somehow they relied on some unbreakable policy that this Schizophrenic person can no longer avail himself to groups like “Fun and Fitness” (even with a medical Dr’s release which they have) and “Nutrition” because he doesn’t see one of their Dr’s.  They want him out of there plain and simple.  If you don’t play by our rules, we want nothing to do with you kind of thing.

Now we could fight that legally if we wanted.  But really, who wants to stay at a party where they are not wanted?  Ironically I dealt with those exact issues myself this week!  I’m just realizing that as I type!  Now that’s kinda funny to me right now.  Seriously, who wants to bang your head against a door to a club who isn’t warm and welcoming to you and in reality not good for you anyway?  We just didn’t think we had options and at the time and John was bonded with this place and the instructors.  But they apparently think it’s ok and a good thing to cut someone off “cold turkey” again.  Remember when the Clinical Coordinator thought, because they couldn’t get a billing issue squared away for John that it would be ok for him to go “cold turkey” off one of his major medications?  Yeah, this is the same group.  It’s beyond dysfunctional, it’s in my opinion outright abusive to the population they are supposed to care for and service.

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So yesterday, in the  middle of my work day, I also receive a text from Lynn, John’s “Compeer”.  She’s the gal who’s been working with him as a peer support person or “recovery coach”.  She’s also in the program.  She’s the one who discovered John in a very bad state one morning because he’d not taken his meds and the lack of ACT Team had abandoned him on his med check AGAIN and he was sitting there unmedicated waiting for them for hours.  That was the last straw for me with those people.  Ridiculous and dangerous.

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Lynn, however, was the one who handled that moment with pure class and professionalism and got him turned around out of that crisis single handedly. And now she’s calling me saying she may no longer be able to work with him because, apparently, she believed the ACT Team managed to not only get John discharged from their services but the entire Mental Health funding from the entire State of Arizona, Magellan Health Care.  The big umbrella under which they are contracted.

Now, as of writing this at this moment, I don’t know if this is true but it’s what John believed and Lynn believed yesterday.  I will get to the bottom of it today but ya know the ACT Team, the one who’s designed to be that intensive program for the fragilist of the fragile patients, they don’t really roll in to the office until 9 at the earliest I’ve been told this am when I phoned at 8:30.  Yeah, ok.

In Lynn’s message, she said she thought she could still see John but under another set if circumstances which we’d have to get him signed up under and I was to call her supervisor which I did.

This is where the clouds began to part.   First of all, this woman listened to my frustration.  I explained to her how my brother is highly motivated to attend classes and groups and is very reliable and loves it.  Which is half the battle with the mentally ill:  getting them involved and motivated.  He has his own car, he can get there and he will get there every day but now how do we find them for him?  She was understandably appalled at this other Center’s apathy as she works with the same population and immediately told me he’d be welcome to come to their center called Wellness City.

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Here’s the big bright silver lining that popped through as I sat in my car talking to her in the Trader Joe’s parking lot  yesterday.  Wellness City is a highly utilized facility and very active–they have Recovery programs as well as lots of socialization activities and lunches!  And the only glitch she said was “well he won’t get Dr. or nursing services here”.  EUREKA!  The one thing he was punished for at the other hideous clinic (Choices Enclave) –not using their Dr–is completely not an issue here as they don’t even have Dr’s there!  I immediately said “he’s totally covered in that arena–he just needs groups, classes, a community”.  And she happily and proudly replied “we have all that here”.  She also said “he’s so lucky to have someone like you advocating for him, most of our population don’t have that”.  I was a hindrance to the ACT Team but a benefit to this woman.   Clearly this is where we belong.

And get this, it’s about 8 minutes from my house (and maybe 10 from John’s).  Meaning it’s closer than that other mausoleum.  And it sounds very lively and well attended.  My only regret is I didn’t find it sooner.  The only requirement is they have to be under the Magellan umbrella which John is, at least has been unless that toxic ACT Team manipulated in to signing himself out of that somehow.  Oh they will be hearing from me this morning I guarantee. That is if any of them show up to the office anytime.  I mean it’s Friday, I’m sure they have things to do.

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Yeah you can tell I’m still pissed at them.  They are the coal in the stocking that keeps on giving right up to the bitter end.

I laid all of this out for John last night when we went out to the Nutcracker and he said “most of the time I’m the only one at those groups there anyway”.  Can you imagine?  You walk in, the place feels dead, but they have schedules and greaseboards that talk about all of their wonderful groups and classes, you see a few people sitting in the waiting room and lots of staff milling around.  I’m told each case manager in the main program, not ACT Team, has a large load of 50 or so clients.  That means this place services hundreds of mentally ill people and yet my brother is often the ONLY person attending groups there and they kicked him out.

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That means no one is invested in getting these people to attend their programs.  This is the exact experience we had with the shell game at ACT Team.  We were told of all the wonderful services they provide and all the case managers doing things like “Home Management, Transportation, Volunteer work, Voc Rehab, Counseling, ” etc etc etc and the one and only thing he ever got was daily “med checks” which he never needed, were inconsistent (meaning they often no showed on him) and forced him to wait to take his meds on their schedule, often for hours, interrupting his daily routine.  Again, that was the only service he ever received from them over a period of months, he went through two Psychiatrists and three case managers some of whom never met with him, even once.

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Anyway, all of that is to say, John meets with Lynn today who will take him to Wellness City and get him registered and on his way with that Community and I truly believe he will find his Tribe there.  People like him, with the same struggles and doing their best to maximize their lives.  Which is absolutely my dear brother John.  Who knows I told him last night, he might find himself as a Compeer Recovery Coach himself one day and be able to volunteer right with that organization.  Just like I put my trauma to use supporting crime victims’ families, maybe this will be his path as well.  Putting your own tragic story to do good in the world somehow.

I said it this weekend and I’ll say it again, sometimes you have to cut the cords of relationships that are draining and dysfunctional out of your life completely to create space for your Tribe to find you and claim you as your own.

So you see Alfonse and I are on a similar path, together, walking and supporting each other through our lives.

The miracle of this serendipity is not lost on me.

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bridging

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Meanwhile back in Tempe….

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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.

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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.

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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.

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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.

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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.

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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?

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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!

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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.

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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?

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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?

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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.

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saw this blue heron on the bridge