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.