hope renewed

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We got the house for real!

I dropped the check off yesterday, got the contract, just waiting on the last wire transfer and we will have the keys! We bought a bottle of Veuve Cliquot a few months ago, that we still have sitting in our wine frig. I do see us popping it over there in the empty kitchen. ūüėÄ

Also! My sleep is definitely improving. The Dr. definitely got my attention when he used some word like “psycho-physiology” describing how my insomnia got so deeply ingrained. He listened long enough and educated me well enough that I left there trusting him, which is honestly rare for me when it comes to doctors.

This morning I was reflecting on how familiar this felt to me–but on the other side of the paperwork.

During my thirty-year practice as a bodyworker, I realized I had a secret weapon.

I could get people to trust me very quickly. I don’t know if that’s just my normal personality, or a skill set I developed in that role, but I took my time, listening to every word they said, writing it all down and asking lots of questions in the intital appointment. I didn’t rush it and insured them their participation and input was valuable to me (which it was).

I then displayed (because I possessed) a deep, calm confidence that I could help them (if I did which was the vast majority of the time). AND that their body also possessed a deep well of information that would be our guide, which I would trust, to help them get back on track.

I always started the relationship with that confidence and that respect right out of the gate and something about that combination allowed my clients to trust me, and the process I was guiding them in to.

Most of the time when they found me, they were pretty desperate and in a lot of long term chronic pain. Had been through many things that had not been helpful. They were understandably skeptical.

But I knew that their trusting me was going to allow their guard to drop, and the magic would begin.

I always–every single time– coached them on not seeking improvement, but seeking change. That we were simply looking to break up the patterns of dysfunction, so their innate body-wisdom could sneak back in through those cracks and start taking over.

I’m glad I’m writing this all out, as I rarely think about my prior life as a therapist. But this process is exactly what is occurring for me now.

I may not have fully felt confident in trying this non habit-forming medication (for a relatively short time–my goal is to get back to sleeping and get off all medication) as I tried two doses before, didn’t sleep and felt like death in the morning.

But I did leave feeling like I trusted this doctor and I would submit to his expertise. He runs a damn Sleep Center for God’s sake–how can I rationalize not trusting him?

Cute little macrame I got hanging over where I’m sitting right now, enjoying a cool breeze

Since I made the decision to trust his guidance, do exactly what he said, and know that what’s happening is as much a deep psychological problem as chemical (not saying you can just decide to change these kinds of unconscious patterns by just deciding to–you have to let go and let your mind decide on its own to shift) I have started sleeping better.

He said the morning grogginess would start fading in about three days and I woke up today feeling pretty chipper.

I guess what I’m saying is it’s all about trust. And all about just letting myself be steered, then the magic starts happening. I’m stubborn. This is big.

The very first time I took this med a couple weeks ago (prescribed by my wonderful nurse practitioner), I lay wide awake tossing and turning for five hours then was a zombie the next day. The next night, basically the same thing. I gave right up on it.

But now, I’m sleeping 2-3 hours at a time and getting pretty easily back to sleep. It’s changing and getting better. I’m feeling hopeful.

Those are the great ends of the spectrum.

Some of my daffodils!

The tail that’s dragging though is the care my brother is receiving which is abysmal.

He got up yesterday and right away called his case manager, leaving a message on her voicemail that he needed an appt. with the nurse in order to obtain his meds. I know he did this because I was on the phone with my Dad and heard him in the background leaving that message.

He went all day not hearing back.

I wrote his social worker from the hospital basically detailing how her discharge plan fell off the rails with Terros right out of the gate, really just to let her know and to document it. I ended my email saying I did not expect a response, this was just to inform her.

She wrote me back, appalled, sent my email to the director of the whole shebang and gave me a number for the Clinical Director of John’s entire clinic. Oops! That lady did not end up liking that one bit.

I called the Director who let me know she would get right on it, make sure he had his appointments and the best way to get the information to him. I asked her to email me as John has a new phone and is hard to reach. I would make sure he got the info.

Mind you, he runs out of meds on Monday. It was Thursday and they are closed on the weekend. We have one day to get him in there–Friday. She assured me it would be settled by the end of the day.

The end of the day came and you guessed it–nothing.

I called her cell phone again and could hear she was driving. She was annoyed. Asked for an update and she said she had punted it to the terrible, incompetent case manager. I let her know John had called her and heard nothing. I reiterated he went in the hospital for five weeks because he went off his meds and here he was set to run out of them.

She said they were on it. I had a few choice words about the case manager like “incompetent” “terrible employee” etc. and the phone call ended abruptly. I’ve simply had it with these people. I left that thinking it all trickles down from the top. Even the Clinical Director doesn’t care about the patients there. I get it.

So I ended up calling back to the clinic to get anyone, absolutely anyone in the building who could facilitate my brother picking up his meds the next day.

I finally got likely the one and only competent person in the facility, who looked him up and saw he indeed has an appointment on the books for Friday at 10:30.

But no one told us that. And it was the next morning. They went to the trouble to schedule the appointment, but not tell the patient.

How did they expect John to be at that appt. when they never informed him of it? Look at all the great lengths I went to to simply get that one nugget of information.

The case manager kept saying in the heated staffing on John while he was in the hospital “well he didn’t show up for his appointments!” as the reason his medication got messed up.

I get it now. She does the bare minimum on paper, to prove those billable hours, then no follow-through with the actual patient. She scheduled the appointment, but never told us about it. So when he doesn’t show up, he gets marked as a no-show and no one questions it. Ya know, these unreliable mentally ill people.

I want to scream.

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I got super sad yesterday thinking of all the other people under her who she’s playing this game with, who are getting sicker, not getting services, because they don’t have someone like me hounding her to do the basics of her own damn job. And even her boss at the highest level doesn’t care. It’s a very dangerous trap.

We have about a month to navigate this I think before getting him here. I spoke with John yesterday and we both agreed he can and needs to ask for a new case manager for just that month. This woman is unsafe.

So he will be doing that today when he goes in to get his meds. Even if he gets a similarly incompetent person (as I said to my Dad, I truly can’t imagine anyone being worse than her), it sends a message.

And when this is all over, my Psychologist husband is doing something called “red-lining” this facility. I think the social worker at the hospital is engaged in something similar. At least we will be out of there, but in all good conscience for the rest of their vulnerable population, we have to speak out.

Ok, with that all being said (much of the reason I document on here is also to keep a written record), this is a gorgeous day here. I’m so happy and relieved we can start moving them here in a concrete way now.

I have so many thoughts of my Dad sitting on my patio, enjoying my flowers doing his crossword puzzle. Inviting my brother over for TV watching and pizza. Country drives showing them all these views I’ve grown to love. Simple pleasures like that.

Knowing my Dad will get to live out his life in this kind of comfort is such a relief to us all.

And when I thanked my husband the other day for so much help he’s giving my family he responded “our family”.

You see his parents died so young (both were gone by the time he was fifteen), he never got to experience an aging parent situation. He considers this a gift. He’s a true gem of a human. Of all the disastrous choices I made in dating–which were admittedly about 99% of them–I just needed one good choice and I nailed it.

And he came with this cutie

He heads back there in a little over a week and will handle most of the logistics they need on their end. Then we will fly my brother (and likely their cat) out here, and my husband is going to drive my brother’s car out here, taking a cross country road trip with my Dad. They are both really looking forward to it.

Thanks for coming along for the ride everyone. It’s been a circus, fun-house, roller coaster and glorious ferris wheel all wrapped up in to one.

And my shingles are almost entirely improved. Hooray for no long-term effects.

Have a great Friday out there.

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More good news!

We attended a staffing on John yesterday and he will be heading home on Friday!

He’s continued to stabilize and has been basically back to his old self for about a week now I think, so he’s ready to get outta there.

Of course we’re concerned about any follow-up “care” with his program Terros, who has messed up in almost every single way they can with him. Both my husband and I let the “case manager” (yes I put this in quotes because there is very little management going on and what happens is mostly mismanagement) exactly what we thought. Words like “I’m a Psychologist and appalled” and “step aside Allison, you are not telling the truth” were uttered.

I was furious at how she tried blaming John AND my Dad for her failure in her job. She claimed John wasn’t showing up for appointments and not answering his phone, therefore that’s how his meds got messed up. Um, if you have a patient in the program that was disconnected and unreachable, you just leave them out there dangling for months? Their office is in the same town that John lives in–about a 15 min. drive in traffic. That’s if what she said was true, which I don’t believe. She’s backpedaling, poorly.

She claimed my Dad told her that day she came out during the crisis and did a sum total of nothing, that John had been off his meds since June or July. That is a bald faced lie. I was on the phone with my Dad the whole time she was there, and the opposite–he reviewed with her the meds John was taking–including two psychotropics prescribed by their rotating, inconsistent cycle of Psychiatrists– and noted the main one needed was not included in his regime. We will never know how/when/why that got dropped off, but a clinician blaming the patient AND his father is unconscionable. Trust me, if my brother had been off all of his meds for eight months, there would have been a crisis point hit long before.

I’m a typical Scorpio. I hate liars.

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I let her know that John wasn’t stable for nearly 8 full years by being non-compliant with his meds as she claimed, and that somehow he was making it to all of his other programs–the ones that were open during the pandemic–seamlessly, but only seemed to be “missing” appointments at their office? Bull. When my brother is plugged in to a routine, you can set a watch by him. He will be there and be on time. And he takes his meds daily. They just messed up which ones he was to be taking. When I say they, I’m really referring to the inept case (mis)manager specifically.

Still, even if you take her on face value, it’s pure negligence. I just can’t wait to get him unplugged from that dysfunctional system (if you can call it that too). It’s just pure chaos there. Trust me, there will be reports filed once we get John fully disconnected.

BUT we have to rely on them to fill John’s meds in the immediate (meaning for this weekend after he’s discharged), and the interim time, before we can move them here, as well as necessary bloodwork he needs. He can’t get his meds without the blood draws and we are the mercy of that nitwit to schedule those lab appointments. We are approaching it assuming she will screw it up, so trying to cover as many bases as we can with the excellent social worker at the hospital, before he’s thrown in to that abyss again.

Do I sound bitter? More like exhausted and having zero f*cks left to give over those people, who count on their mentally ill people to not be advocated for by family or other people who care about them, so they can bring in the revenue off their illness while failing to provide services. Most reviews on Glassdoor/Indeed by former employees state that and I believe them 100% by my own experience.

Here is one example:

1.0HorribleCase Manager¬†(Former Employee)¬†–¬†Tempe, AZ¬†–¬†May 7, 2020Terros management at priest is terrible and it all starts with the ceo and trickles down. The company only cares about money and it shows in all aspects. Clients suffer and so do employees. You will burn out within a month on the job and there will be no support or help. There is literally not one good thing about this company. Clients and prospective employees should find a company with morals

Anyway, that’s my John update. It’s looking up in spite of my rant right there. I just had to get that out.

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My sleeping issues persist (God I got less than two hours sleep last night–it’s really pretty maddening). If I sound cranky, that’s why. I was able to get a referral to a sleep specialist near me in a couple weeks which should be interesting. I gotta do something here–this is ridiculous.

And we’re still not sure if the Continuing Care Community will accept our family here yet, but we’re exploring other options as well. We will get them here one way or another. There will be a place for them to belong and be near us, even if it isn’t what we originally thought.

Ok, gonna head back to bed here to see if I can catch a few more Zzzzzz’s.

Have a great Wednesday out there.

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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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