help is on the way

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I’m sure many of you regular readers are awaiting an update on the meeting with my lawyer yesterday.

Let’s just say I walked out there feeling lighter than air as we hashed out a reasonable solution to address this dangerous situation, at least for now.  I don’t want to share much of it publicly because, well I just don’t.  But suffice to say, when I walked in and my attorney Chick walked in with all of the emails I’ve sent him over the last week in his hand telling me he’d discussed this with every other attorney in the firm, including a retired Judge he still refers to as “Your Honor” he respects him so much, I felt at the very least validated and at the most under a wing of serious protection now.

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We are proceeding with a plan which I believe will meet all of the important goals and allow me to let go and enjoy my relationship with my family under an umbrella of safety and care.

I’ve been reflecting a lot as you can imagine on sociopaths and their agendas and tactics.  I don’t want to focus too much on that right now as honestly I feel quite OD’d on the subject at the moment and it’s a very dark unending black hole of pathology when you start looking at it.  But I will say that when I look at things like our family’s tragedy; Cindy’s murder and then Travis Alexander’s and those sociopaths involved and that they were able to operate within a veil of secrecy.  They love hiding like that and working their particular forms of devious manipulations.  Michael Apelt rushing Cindy off to marry him in secret with a whole secrecy about it that he somehow managed to make sense to her.  Jodi Arias performing her most sophisticated maneuvers on Travis Alexander through private phone sex sessions and in the bedroom, comfortable hiding their relationship from others then ultimately sneaking across the country changing her hair color, sneakily purchasing gas cans to hide her whereabouts in an entire state.  Things like that.  Like the vermin they are, they like operating in the dark.  This sociopath attached to my Dad is no exception.

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Well this one now is utterly exposed.  He doesn’t know how exposed he is.  I mean EXPOSED.  And not one person who is aware of his existence and pathology and machinations is not in alignment with me and my opinions on this.  Not. one.  Including the entire set of partners in one of the most prestigious law firms in Phoenix.

Help, indeed.

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view from my lawyer’s office 16th floor conference room

Speaking of prestigious, how ironic that my lawyer angel Chick Arnold was written up in the paper yesterday on the front page of the Valley and State section!  Check it out!

http://www.azcentral.com/news/politics/articles/20140107lawsuit-arizona-care-seriously-mentally-ill-settled.html

By the way, he specializes in mental health law and elder law as well as estate planning.  Basically he’s the Kathy Monkman One Stop Shopping Attorney from God.  I tell you, I’ve been guided to some mighty amazing assistance in my life.  Angels all around.  Fierce angels.

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I told Chick “I love you” yesterday in a spontaneous utterance but I did mean it.  How inappropriate.  😉  Ask me if I care about that. 

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After hashing and rehashing solutions to this dilemna, we also got to talking about John and what’s going on there.  He was entirely unsurprised that the ACT Team and Choices Network cut him off at the knees like that in some kind of punitive fashion.  He was entirely supportive of my plan to document all of THAT debacle as well and submit it to a serious source like HuffPo or something.  We definitely have a story to tell.  I just need the time to organize it in a cohesive manner and write it.

He also acknowledged, bringing me to tears, that my life seems to be a whole lot about putting out fires all around me.  Which is true.  I need to start planning a trip back to the Ranch after all of this.  I feel like I move through my life from crisis to crisis as a bodyguard, sister, daughter, case manager, social worker.  And I have a full time job as a therapist.

I’m exhausted.

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But I’m relieved as well which is giving me energy.  Let’s just say I’ve been monitoring this precarious, escalating dangerous situation for a decade quietly and piercing the silence stirred things up but also is bringing in much needed oxygen.

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My Psychologist last night just kept shaking her head at the bizarrity of all that I’ve been dealing with and insisted on hugging me after the session with just one of those looks like….”wow”.  Let’s just say I’ll be seeing her weekly through March.

I’m following through on one of my resolutions to take better care of myself and that’s part of it.

And, coming up on another post, I joined a creativity group where I’ll writing, drawing and painting again!  I’ll be going out this weekend to get all my painting supplies!  I’m so psyched!

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Dancing and drawing and painting.…creativity is where it’s at.  That’s the world where my life rafts float.

Thanks for reading out there and sending light our way.  It’s felt and appreciated.

xoxo

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.

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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.

silver lining

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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.

cheetah1

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.

cheetah2

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?

cheetah

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

accountability

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Just getting in from going to the luxury IPIC theatre to see the movie “The Butler” with Alfonse.  Wow, what a movie.  What a tear jerker!  I’m emotionally drained from this film!  I highly recommend it.

It was nice to get out and do something fun with John.  We love that theatre because they have these “first class” comfortable reclining seats with a pillow and blanket and a great screen/sound system.  Tuesdays are “member night” so we saved $8 a seat and it’s less crowded.

It was bittersweet for me remembering the first time we went there several months ago or maybe even a year ago, when John was well and upbeat/animated exclaiming over and over how special and wonderful this place is.  Bitter because his mental status is so different now and sweet because it reminded me how high functioning he can be.

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I really don’t think he can get back to this level with this team.  And that’s ok.  They are used to dealing with the “discards” of the mental illness world.  People who’ve been abandoned by everyone else, who are so bad off that they’ve fallen in to this “ACT Team”. And for that reason, in my opinion, they are allowed to be lazy or apathetic or unmotivated without checks and balances.

Then they run in to me, likely their worst nightmare.

In thinking about this program, and observing them in the brief time I have, it seems they receive their funds via the funding provided for people like my brother.  But, what it appears, is they spend most of their time in meetings, in “staffings” , in documenting what they need to document in order to keep those funds coming in, to keep their jobs in their small cubicles.  But what it doesn’t seem they focus on is actually interacting with the people there they are mandated to serve.

I was warned about this by our attorney.  He broke it all down for me. That these programs, these workers are kind of at the end of the line.  And that’s what you get from them.  I get it.  It doesn’t excuse it but it’s clearly what is happening.  But don’t call yourself an “intensive monitoring program” and not even offer the bare minimum of “monitoring”.  I don’t like false advertising in anything, especially when it comes to the basic health and safety of my brother.

I googled ACT Team and this is what I found:  their model.

http://www.actassociation.org/actModel/

PRINCIPLES OF ACT Assertive Community Treatment services adhere to certain essential standards and the following basic principles:

  • PRIMARY PROVIDER OF SERVICES: The multidisciplinary make-up of each team (psychiatrist, nurses, social workers, rehabilitation, etc.) and the small client to staff ratio, helps the team provide most services with minimal referrals to other mental health programs or providers. The ACT team members share offices and their roles are interchangeable when providing services to ensure that services are not disrupted due to staff absence or turnover.
  • SERVICES ARE PROVIDED OUT OF OFFICE: Services are provided within community settings, such as a person’s own home and neighborhood, local restaurants, parks and nearby stores.
  • HIGHLY INDIVIDUALIZED SERVICES: Treatment plans, developed with the client, are based on individual strengths and needs, hopes and desires. The plans are modified as needed through an ongoing assessment and goal setting process.
  • ASSERTIVE APPROACH: ACT team members are pro-active with clients, assisting them to participate in and continue treatment, live independently, and recover from disability.
  • LONG-TERM SERVICES: ACT services are intended to be long-term due to the severe impairments often associated with serious and persistent mental illness. The process of recovery often takes many years.
  • EMPHASIS ON VOCATIONAL EXPECTATIONS: The team encourages all clients to participate in community employment and provides many vocational rehabilitation services directly.
  • SUBSTANCE ABUSE SERVICES: The team coordinates and provides substance abuse services.
  • PSYCHOEDUCATIONAL SERVICES: Staff work with clients and their family members to become collaborative partners in the treatment process. Clients are taught about mental illness and the skills needed to better manage their illnesses and their lives.
  • FAMILY SUPPORT AND EDUCATION: With the active involvement of the client, ACT staff work to include the client’s natural support systems (family, significant others) in treatment, educating them and including them as part of the ACT services. It is often necessary to help improve family relationships in order to reduce conflicts and increase client autonomy.
  • COMMUNITY INTEGRATION: ACT staff help clients become less socially isolated and more integrated into the community by encouraging participation in community activities and membership in organizations of their choice.
  • ATTENTION TO HEALTH CARE NEEDS: The ACT team provides health education, access, and coordination of health care services.                                                                                                

This would be funny if it wasn’t so tragic.

This is the one that just kills me:

HIGHLY INDIVIDUALIZED SERVICES: Treatment plans, developed with the client, are based on individual strengths and needs, hopes and desires. The plans are modified as needed through an ongoing assessment and goal setting process.

John has not been “assessed” by anyone in the program and there has been no plan to assess him that I can ascertain.  I can’t believe that at some point this morning I was told the sum total of what he will receive from the program are 5 min visits to watch him put his pills in his mouth and swallow. That’s it.  Anything else, he needs to “ask for” or some other smokescreened excuse for offering a sum total of zero “highly individualized services”.  Highly individualized indeed.  He was shoved like a cattle in a line in to taking his sedating bedtime meds at 5pm.  Shaking my damn head.  Frauds.

Let me just go back to the meeting this morning.  We met first with the Dr.  She asked John to describe how he’s been doing.  It would take a cursory look at him to realize he’s not doing well, that he is obviously very depressed (mornings are worst). She assessed the correct things, asking him if he was having hallucinations (yes), thoughts of harming himself (no), thoughts of harming others (no), feelings of depression (yes), etc.  She’s not horrible.  My gut tells me she’s new to this job and relies heavily on the bitchy controlling Care Coordinator for the management of this program.  Fine.

She made med changes which is really her function in the team.  Good.

She then turned to me and I outlined what happened with the Risperdone.  I watched her kind of glaze over, basically only concerned that John had gotten this med but not what it took for him to get it.  I was glad I’d documented it all and requested it be “red flagged” in his file.  I pulled out my letter in the envelope and told her I’d documented everything, that I was very concerned about the lack of care John has received in his first week with the ACT Team as well as things that, in my opinion, jeapordized his basic safety.

She then suggested bringing the Care Coordinator in.  Fine.  She walked in already with a defensive attitude as there was a little meeting outside the office before she entered. She was probably forewarned that I was “difficult” or “disgruntled”.  As I expected, she was defensive and turning things back on us such as “what are you not getting that you are expecting”.  I’m pretty sure I said something like “anything past a 5 minute med check per day, a meeting with a case manager, a plan, something”.  At some point I was told that the med check was all John would be receiving with this program like this was adequate monitoring and I was expecting too much.  Really?  WTF?

I then kept asking “why if you have all these case managers out there specializing in voc rehab, recreation, home management, etc” has John not been assessed or contacted by anyone?  How will he receive these services?  What needs to happen because he’s sitting around all day alone unless I’m pushing him to attend classes. Ohyeah, she used that as an indicator he was well managed, that he had attended classes.  They have no way of monitoring that, have not helped him create a schedule, encouraged him to go, nothing.  I reminded them both that they only reason he was doing anything with these classes was because I was spending time with him daily and creating a plan for his day.  She said “well then where is the problem?”.  “It’s not my job” I replied.  “So you think that’s OUR job?” she defensively barked back.  “Yes, it is” I said.

power struggle

Finally after this back and forth power struggle, she relented that his case manager should assess his needs (this teenage looking Justin Bieber lookalike with a backwards baseball cap who’s only question to John was “do you like to play video games?” with a laugh, clearly wishing John did, so his home visits could be entertaining for HIM).  I asked when this assessment was planning to take place as John had not been contacted by him or anyone.  She explained that Justin Bieber’s twin needs to “assess” John and if he determines John has any of these needs, then he brings it to the team, they staff it and decide if John needs these services then and only then is he assigned a case manager who, I guess, at some point will contact him.  Oh and she told me “Justin” has been on vacation since last week so that’s why he hasn’t contacted John.  I just kept saying “John has been in this program for a week, low functioning, and receiving no case management after two weeks of no services at all after he got out of the hospital”.   I guess when someone goes on vacation, everyone they are managing is just put on hold until they get back, including the Dr. herself.

Both this woman and the Dr. looked at me like I was speaking an ancient unintelligible language as I kept asking these questions.  Finally, she relented that “Justin” would be contacting John this week, seeing him every other week at his home ( sorry no video games) and the other weeks “in the community” resulting in one visit per week.  I won’t hold my breath that this will actually take place but I sure will monitor it.  Finally I got something clearly and distinctly promised to us.  If this doesn’t happen, I can hold them accountable to something specifically promised.  Sigh….having to monitor a “team” supposedly created to intensely monitor their unstable participants is exhausting and scary.  Bottom line:  I don’t trust them and don’t think I ever will.  Why would I?  Why would anyone?

As she walked out I told her that even the med checks have been inconsistent and that John waited all Sat. evening and no one showed up. She shrugged and said “ohyeah I know who that was, I’ll talk to them”.  So the one and only service John was to receive is “optional” it seems.  Again, shaking my damn head.

The Dr. however seems ok.  She made a change in John’s meds, made sure he was set up with the meds he needs and made sure he has an appointment with her next week.  Ms. Bitchy seemed shocked the Dr. wanted to see him back so soon and shot her a look of surprise but the Dr. insisted she wanted to see him that soon.  Good.  Usually the Dr. just sees them once per month.  I’m sure Bitchy was annoyed that John was being given “preferential treatment”.  I reminded them both we gave up the one person who WAS monitoring John weekly for this program for him to get no one monitoring him other than making sure he puts pills in his mouth (pills they don’t even check that they are the correct ones by the way, just the pills John, himself has placed in his med box), which by the way, HE doesn’t NEED.  “Individualized Care” , right.

By the way, Dr. Yasinski, who’s not even treating John right now, emailed me last night inquiring how he was doing.  How many signs do I need about who cares about John and who doesn’t?

compassion-KO

I really wonder what would have happened had I not shown up.  More of the same I suspect.

I did get his “med checks” changed to the morning after Ms. Bitchy reminded me repeatedly that the 5pm time is all they can offer.  “Then it needs to be changed to mornings” and the Dr. did so.  I get this feeling she would retaliate against John for the trouble I caused if not held accountable.  That’s terrifying and why I included this as the last paragraph of my letter:

I trust my voicing my concerns in no way will affect my brother’s ability to receive services from the ACT Team or Choices Enclave. I’ve also sent a copy to the medical director of Choices Network so that everyone is in the loop regarding the concerns addressed in this letter.

“Choices Network” is the entire organization and it’s a Psychiatrist, a female who runs it so I sent the letter to her.  I’m sure by now I’ve been labeled as a “red flag” myself but do I look like I give a shit?

I feel certain once I return from my vacation, we will be putting together a new team and ditching this marginally functioning pathetic program.  I just need to know that John’s basic needs are met elsewhere (meds, weekly blood draws, etc) before I yank him.  I asked him how he felt about everything as we drove home from the movie and he said “I just think they are getting away with the bare minimum”.  BOOM.

I reassured him he deserves the best.  And that I won’t give up on him, Dad won’t give up on him and we will do everything we can to get him the best care we can.  I only hope this sinks in on some deep level to feed his soul in some way.  The voices are already creeping up saying “no one cares about you, no one likes you”. Now how has the neglectful actions of this program not reinforced that?  It’s disgusting.

I’m glad I went to the appointment and glad I hand carried my letter and glad I held their feet to the fire.  It remains to be seen what they come up with once I’m gone.  Right now I’m just hoping he doesn’t land back in the hospital and if he needs hospitalization that anyone will even notice that.   I will have John document for me the visits he gets though as not only do I see a team change in his near future but a formal complaint issued right after that to the Behavioral Health Board for the State.  One thing I can do is persuasively write.  Oh and the other thing they don’t realize is that I’ve got the most influential mental health lawyer in the State on my side and we see him on Thursday.

I don’t expect to effect a change in the way this apathetic program functions but who knows?  Maybe my attorney will direct me to help effect change on a more global, political level in our State which would be a good place for me to put my energy.  Think of all the patients without an advocate that are being “monitored” by these ineffective nitwits.  It’s heartbreaking really.

Thank you all for all the support/suggestions/letter rewrites and everything else over this issue.  It was ALL helpful to me.  I took all of the ideas and formed them in to one semi bullet pointed letter. 😉

And more than anything I’m glad I got John out of the house for some fun tonite.  Even though he’s not at his full functioning mode, we did have a good time and at one point I got so emotional during this movie, I reached out to his hand on the hand rest and squeezed it.  He squeezed so hard back it hurt but I didn’t let go for a long time.

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I just hope John can feel my hand even when I’m across the country for 10 days.

fierce advocacy

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Hi guys,

I’m working up a letter to send with John tomorrow when he sees his new Psychiatrist.  Part of the reason I’m sending a letter vs. showing up is I want it to be known this is documented.  The other part is honestly I feel like I might blow my freaking stack in there then get seen as the hysterical family member.  Will you guys please review this letter and give me any feedback about it–things to remove or include?  As you can imagine I’m terrified leaving him in the care of THIS for 10 days while I’m gone.  And I’m launching this really hoping they don’t deem HIM too high maintenance (because of me) and somehow discharge him.  As I’ve said a gazillion times, if trust is broken when you are in the stage of establishing trust with someone (in this case a program), then you are really doomed in terms of ever trusting.  That’s where I stand with them right now so there needs to be some serious convincing me otherwise.

I feel like we’re headed in the direction of ditching this marginal program eventually and going in to the private sector exclusively with John but that takes time to set all of that up and I leave in just a few days.  Anyway, here’s my draft as it stands now:

                                                                                                                               Sept. 3, 3013

Dear Dr. P********,

I’m sending this note with John documenting some concerns since we’ve transferred him to the ACT Team that are deeply troubling to me.  We waited two long weeks with zero services right upon discharge from a difficult hospitalization for this “intensive” program yet what he’s received has been marginal at best and scary at worst.

The day we left after the transfer appt. (last Wed) John did not receive his Risperdone due to some “pre authorization” issue.  I spoke with the Pharmacist who said it should be ready later that afternoon.  I told him that John would be having a “med check” that day and he told me that case manager could bring it with them at that time. That didn’t happen.  John was later told that is not allowed.  But it’s what I was told directly to my face from the Pharmacist so I trusted this information—that his Risperdone would be filled that day and brought to him that evening.

The next day, John and I both called the ACT Team and left messages regarding this issue (and one other for me) and neither of us received return calls.  We were told there would be case management on call for John 24/7 but two days went by with no return call to either of us. To this day no one ever called either of us, especially John back.  He also went to the ER that day for the bladder issue he was still obsessing about.   He left a message about that too.  No one called him back regarding that either, not that it’s the concern of the ACT Team but I would hope if someone in a program “intensive” such as this, an ER visit for any reason would at least warrant a return call to check in.

John had, fortunately, two pills of Risperdone left but by Friday, he had zero.  No one followed up on the “preauthorization issue” at all.  Or contacted either of us.  Even though we were leaving messages.

I was /am also concerned about the only service John received all week from the ACT team—the nighttime med check.  He has been required to take his bedtime meds at 5pm.    He is asleep within 30-60 min after taking those heavy antipsychotics. I know this because he lives with me off and on when he’s not doing well.  I know that his needs may not fit with the “schedule” but that is totally disruptive. Who besides an elderly person would take their bedtime sedating medication at 5pm?  He couldn’t possibly have any kind of evening activities, take the Spanish class he intends, go to a movie with me, nothing if he’s in bed by 6pm to accommodate the program’s schedule.  Evenings are when he feels best and he’s getting knocked out.

He is very consistent with taking his meds. Med compliance is at the top of the ACT Team list clearly but at the bottom of mine as I know him. He’s very consistent.  I discussed this with two case managers, both of whom said it could not be changed to morning med checks because you were out of town.  If he needs to be observed, then mornings would be less disruptive.

John is also very depressed in the mornings.  He has started hearing voices again over the weekend.  He identified “Lucifer” as one of his voices.  He has had zero contact from anyone from the ACT Team during the day time since he was transferred.  He may or may not tell you this so I am sharing it. 

John hasn’t even seen anyone from the ACT Team on the days he’s gone to Choices Enclave at my urging.  Shouldn’t his or one of the case managers be working with him about plans to attend classes, ways to spend his time during the day?  He met his primary CM briefly in the hall last week who’s one question was “do you like to play video games?”.

Back to the Risperdone issue.  I finally got the Coordinator Sandra on the phone about this after calling a third time on the third day and getting transferred around.  John had not one pill for that evening and it needed resolution that day. 

She also reiterated you were on vacation, that she didn’t know how to resolve it if no preauthorization.  Isn’t there another Psychiatrist on call when you are out of town?  For a medication issue as serious as this?  I reminded her it was ordered from YOUR clinic (Dr. Ahmad) and filled by YOUR pharmacy just two weeks ago.  That he needed it today somehow.  I said the words “John can’t just go cold turkey off of this”.

Sandra said back to me “he just might have to go cold turkey if we can’t get it authorized”.

I am still appalled that I ever, for any reason, heard those words out of someone’s mouth who works with acutely mentally ill people.  He might have to go cold turkey off a major antipsychotic med over an insurance issue?  Really?  That is just dangerous.

I rarely do this but felt the need to play the “I’m a Psychiatric Nurse” card as I did work inpatient Psych as an RN for seven years as an assistant head nurse.  I do know more than the average family member.

What she said back was “well if you are, then you know we can’t give meds that aren’t authorized”.

The fact that she was willing to even consider, for a second, that it would be appropriate for my brother to go off his Risperdone “cold turkey” with no supervision, with his psychiatrist out of town is something I can’t get out of my head.

After some back and forth and me pressing on this, she agreed to go look in to it and she called back a few moments later saying it had been authorized.  When was it authorized I wonder?  Why had no one called US on this and it required me calling multiple times to check on this? It terrifies me he’d fall through a crack on something as important as this.  This could have been very dangerous to my brother’s medical status.  No Psychiatrist would ever, knowingly, allow a patient to go cold turkey off a medication such as that and it appeared to me there was no one covering for you.  No other name was mentioned as someone to contact or consult with.  If the insurance wouldn’t cover it, we would surely pay for it to get it to him before the authorization could be worked out.  Maybe he does need to go off one of the three major tranquilizers he’s on but certainly not “cold turkey”!  This concerns me for an intensive program we are throwing all of our eggs in to.

The sum total of what John received this week, aside from the transfer appt. were brief med check visits at 5pm that actually disrupted his entire rhythm.  No one showed up or called on Saturday so we figured that wouldn’t be happening on weekends then they showed up on Sunday, again at 5pm.  Even the med checks he’s setting time aside for to wait at home for are inconsistent and unreliable.

I understand we’re all just getting to know each other here.  I am a fierce advocate for my brother and I do know some things and am the best resource you have on him other than himself (who, being mentally ill, is not always the best).  I see him almost every day when he’s not living with me. 

I have expectations and I am leaving town with leaving him in your care for 10 days. Let me remind you, my brother was acutely suicidal for two solid weeks with a distinct plan to shoot himself within the last month. And he’s still depressed.  That Risperdone issue has made me feel very insecure about his basic safety in this program.

I need to know that what we’ve been promised is going to actually occur.   I would like an answer about the evening med check.  I asked that it be changed to morning because the timing of those isn’t so impactful to his day.  I’ve asked multiple people about how John is supposed to get seen by these various case managers and have not gotten an answer on that.  Is he supposed to make appointments? Does someone call him?  I also want to red flag that Risperdone issue so it never happens again.

I am writing this letter hoping that my voicing my concerns in no way affect my brother’s ability to still receive services from the ACT Team or Enclave.  This is why I’m also sending a copy to the medical director of Choices Network.

Thank you for reading,

Kathy Monkman

480-491-8224   katiecoolady@yahoo.com

Cc:  Ann M. Negri MD

       3003 North Central Ave
       Suite 300
       Phoenix, AZ 85012

 

                                                                              Any feedback appreciated!