hope renewed

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. 😀

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.

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.

Photo by Andrea Piacquadio on Pexels.com

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.

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.

release

Photo by Bekzat Tasmagambetov on Pexels.com

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.

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:

1.0Horrible Case 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.

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.

signs of life

It’s been a rough month. One of the most challenging as far back as I can recall. Decades maybe.

Navigating one family crisis after another is simply no way to have a life, not a sustainable one anyway.

All of this is forcing me to look at my roles–my savior roles, my caretaker roles, my martyr roles, and I’m sure many more roles that have not and do not serve me well. Yet at the same time, I’m too tired to look, and definitely too tired to come up with any more plans right now.

So now is a time to stop. To rest, to go within and above.

My brother fell apart again after over seven years of stability. We don’t know exactly why. I suspect part medication ball-dropping (he’s very poorly managed by the people being paid to manage him and I’ve not been able to get out there for over a year now due to Covid) combined with a scary incident after my father received his first Covid vaccine, that resolved quickly, but was traumatic. Part of the reason I can’t figure out about his medication–is his agency, Terros–the one I got him involved with when I first moved him to Arizona, neglected to inform any of us that their “release of information” forms expire after one year. So John’s expired God knows how many years ago, and they refuse to talk to me. Due to their negligence. They are supposed to get their clients to re-up them each year–that is literally their job–and they never did it with my brother, and we are suffering the consequences.

I spent two straight sleepless nights and days trying to get him help– hospitalized, medicated, evaluated, anything–from across the country as his symptoms quickly escalated. My father, who had turned 90 two days before, was powerless. He couldn’t get him to get to a hospital, to take any meds, to do anything. It was careening out of control. I know how fast it can happen, I’ve lived it with him.

I had been strategizing, cajoling, researching, stopping short of begging my father and brother to move here to a perfect Assisted Living Facility three minutes away from our house, for months.

“Dad, I don’t want to have to make this move in the middle of a crisis,” I finally said to my father who agreed this move was necessary for them both, but he was just not ready.

“John can wake up some morning and find you dead in your bed and be there all alone,” the sad potential reality shot from my lips.

“You’re pressuring me,” he said.

So I would just slyly slip it in to other conversations like “see if you lived here, you could try these donuts we love,” things like that. He was not biting.

Until the crisis. Until we eventually landed on the police being called after his untrained, very young case manager came out to see him at his worst and the only thing she could say was “this is not the John I know!”, then she left. Doing nothing. Telling us we would have to wait until Monday for her to do anything further. It was Friday.

The Crisis team called next. “We can’t speak to him as he’s not being coherent, so we can’t determine if he’s a danger to himself or others.”. Then they left. They left my family in the middle of a crisis, after doing nothing, recommending nothing, as my brother got worse and worse.

This, to me, was like a person in a diabetic coma, unable to speak, and the professionals deemed to help them, decide not to, because the patient due to their condition can’t give consent.

So, my dear, very sick brother, was ultimately handcuffed on the sidewalk in front of their home by the police, taken first to a regular hospital Emergency Department for twenty four hours with no medication, no medical history, no information. I was relieved to get him out of the house for help, any way that it took. My father let the police know the medications he was on regularly (missing the most critical one for someone with schizophrenia that no one has been able to explain to me–like a diabetic being on their pain meds but missing their insulin). They simply said they were waiting for a bed in a Psychiatric facility and he would be transferred there soon.

Twenty-four hours later was “soon” and things dropped off a cliff.

I had no idea that places like this existed anywhere, much less Arizona. I guess this place has been around for awhile. Community Bridges it’s called. They call themselves a triage facility, a place for psychiatric patients to go temporarily while awaiting placement in a real hospital. Patients are supposed to be there no longer than twenty-four hours.

My brother spent three days in that Hellscape. There are no rooms for patients and no beds. There is one giant room that houses at least fifty acute psychiatric patients, drug addicts going through detox and suicidal people with their only person space being a recliner. A recliner.

I called every day, sometimes multiple times per day for updates, a chance to speak with him, for him to hear my voice. I was met with the most frightening levels of incompetence I’ve seen and having navigated the mental health system in Arizona, I’ve seen plenty.

He was being given no medications whatsoever, I was told the first night he got there. “No, nothing has been ordered,” the clinician relayed to me, looking at his chart. He had been there since very early morning. The list my father had written out when the police took him got lost along the way. Not only was he not being medicated with any psychotropic medication to treat the immediate crisis of symptoms, but he was without his blood pressure or blood sugar medication and they claimed they had no information of him needing any of that. And he had been seen by a doctor– a psychiatrist apparently.

I found a friend to rush over, nearly at midnight, to bring all the vials of his medications, as the person I was speaking with said they would have no other way to verify his medications. And his regular “program” who held all this information was closed for the weekend, so no way to obtain it from them.

To this day, I don’t know if he was ever given any of his regular medications for anything at that terrifying Cuckoo’s Nest as I began referring to it.

The day he was transferred–or the evening before, this whole time period is a blur–I spoke with the “clinician” I was always transferred to to speak with, and she said he was “calm, much calmer than most of the other patients there–he’s ok, he’s doing ok,” she said. This made me very suspicious, especially considering she told me they had tried to take his blood pressure and he put his hands over his face, stiff and they couldn’t complete the task. She read this to me right off the chart.

I asked her to get him so I could try and speak with him. At times he could recognize my voice; I wanted him to consistently know I was out here doing my best to get him help. To give him any kind of reassurance at all from someone who loves him.

(I will add at this point, that due to Covid and my severely suppressed immune system related to my own medical issues prohibited me from flying out–not that being there in person would have made any big difference anyway–no visitors at either of these places).

The clinician came back to the phone and let me know it would be impossible to talk to him as “he’s just blank, he’s like not even there, he’s sitting there stiff and staring in to space,” she said.

“That is catatonia,” I educated her. The person steering the ship at this “Urgent Care Facility for Psychiatric Patients” did not know what she was seeing. Catatonia can be life threatening. I had to break it all down on the phone for her. “Ohhh, you must be right,” she validated.

(Their Quality Assurance department--or whatever it’s called–tracked down my number and phoned me after seeing a scathing Facebook post I made mentioning this horrific treatment — if you can even call it that–that my brother received there. I relayed all I’m writing here–and more– and assured her I would not be removing my Facebook comment, and I would be actually detailing this traumatic event further on my well-read blog, then hung up–you guys who know me, you know me. It’s just taken awhile. I’ve been busy)

He was finally transferred shortly after that to a legitimate Psychiatric hospital, and had to be immediately treated for the catatonia for several days. Where he remains.

My father relented to the move, realizing he had no ability or skills to manage this crisis on his own, and simultaneously realizing he’s been relying on my brother for so many basic things, that he also needs more assistance that would be offered at…an assisted living community.

I immediately snapped in to action, picking out the perfect unit for them, sending and filling out paperwork, filling my garage with furniture so it would be ready when they came, as most of theirs wouldn’t be worth the price of a moving truck. As my own system slid further and further from the tenuous balance it had been trying to attain for months after another adrenal collapse last Fall. My worst symptom this time around has been unrelenting insomnia. I’m not exaggerating when I say I have had less than five full nights’ sleep in around eight months.

Meanwhile, we had to testify in a virtual court hearing to keep my brother receiving treatment, and from not walking out of the hospital voluntarily.

And then I got the call. The CEO of the Assisted Living Community here wanted to speak with me. They needed more information on my brother, to make sure they are equipped to handle his needs. It’s a valid question.

Oh wait, how did I forget this part in this “every day another tidal wave has hit me” story? We (my husband and I) decided to file for emergency guardianship of my brother in the midst of this. So much of the trauma all of us went through trying to get him help could have been mitigated if we (or anyone) had guardianship. An old family friend who is a social worker expressed shock this had not been done sooner.

He was right. In hindsight, I should have stepped in way sooner and way more aggressively on his behalf.

Court filings prepared, retainers requested, online trainings completed.

And then my poor brother’s paranoia directed its arrow straight at me. The only second time this has happened in the thirty years I’ve been intervening on his behalf. And the last (and only) time this occurred, I was still able to get him to go to the hospital with me voluntarily. On some level he has always trusted me even through the paranoia. But not now. He’s fired his first (excellent Psychiatrist) since being in the hospital and now has another one. I’ve had to start over and over and over talking to people who he has refused to let speak with me. And I’m the one person who holds the most knowledge and information of his history over three decades.

What I’ve learned is, that if people can’t speak to you, out of a release of information issue, they can listen to you. So I have given years and years of history about what medications have worked, and other relevant data that they may find useful as they work with him. I’m doing this completely in the dark, hoping it lands somewhere that is useful as it is a one-sided converation. I think it is; useful. They are still working with him to convince him to sign the ROI for me. Let me tell you, trying to convince someone, that someone’s paranoid thoughts, no matter how convincing they may seem with zero history of the relationship, who is simultaneously seeking emergency guardianship, is a tightrope of barbed wire. I ultimately just emailed her a bunch of photos of my brother and I in better days over the years. Clearly a close bond and her response indicated she got it. Just absolutely none of this has been easy, not one thing. Not for one minute. It’s actually been one vicious bitch, to put it plainly.

So, we wait. The plan to move them here may be slipping through my fingers as I type this. I sincerely don’t know. I gave the CEO my best argument for John, once stable again, to be an excellent fit for their community (which I believe). I can’t fathom the notion that he would be alone and untethered anywhere in the world as we age, after our father dies.

Before this episode, he was totally excited about moving here. My father was the one with the hesitation, waiting for something. For something I feared: a motivating crisis. Which may have actually sabotaged this entire plan. My brother was a high functioning disabled person six months ago, hell six weeks ago. It would have been a very different transition then.

This is not a happy post. I don’t have much solid ground at this moment. There are cracks everywhere I look and very little to hang on to right now. I had two hours of sleep last night.

Oh, and forgot to mention, right in the middle of this, two weeks ago, I came down with “one of the worst cases” of Shingles my practitioner has seen. Four nerves involved–literally 1/4 of my body affected from the waist down. I’m not surprised. So, I’ve not even been able to soothe myself in my hot tub, which is one of my main stress relievers. Not a fan of Shingles; will get the vaccine. But it is clearing up and made a turn yesterday in terms of the pain. Maybe I’ll make another post about that detour, as I do have some helpful information on how to get through it, after many trials and errors.

Anyway, yesterday I had three hopeful moments.

Between the needing to be near a phone fielding crisis calls literally from morning to night for days on end, having no energy and then the Shingles, I had not left the house in well over a week. I had plenty of groceries, we have good Grub Hub service here for a small area and my husband did a couple of store runs. I’ve lost myself in a few good binge-watches and movies.

Yesterday was a beautiful day and my friend Susie who I’ve been assisting with her brand new flower shop and floral business (my happy place) once again invited me to come over. Once again I resisted, not feeling well enough to even drive the 12 minutes there. I had been going most days for the last couple of months, before all of this.

“I don’t think I should be around any humans today,” I texted her, after the disappointing phone call with the CEO, left on a “let’s wait and see” note about the house (where I cried a couple of times–it was just that day that as hard as I tried to maintain composure, those tears were just going to come–which I felt awful about and embarrassed).

“It’s a beautiful sunny day, you need sunshine and fresh air! And besides, I’m not just any human, I’m your human,” she replied. I’m lucky to have made that kind of friend in the short time I’ve lived here.

In tears, I got myself showered and dressed, and as I left, noticed in my front garden that dozens of my bulbs are already peeking out. I was missing this, being cooped up inside for these weeks. I have even one fully blooming yellow crocus out there.

Once I got to the shop, some of my despondency had started to lift. Seeing her smiling face helped. A flower shop is just a happy place no matter how you look at it, and especially hers which I’ve been a part of from the ground-up.

As we caught up on all her new gift items and displays, a man entered the store to pay her for a previous order. The chitchat was light and breezy and he had just come back from vacation from, of all places, sunny Sedona AZ. My husband had just returned days before on a week long trip to help out my Dad and they went to Sedona. They were there at the same time as this man. You know me, I pay attention to coincidences like this. They are my stepping stones; my life rafts.

I learned so much about him, but the gift I needed from the Universe, even more than my crocuses, came after he left.

“His husband’s name is ______ (I don’t remember the name), and he is the head of a large choir at one of the big churches here,” Susie filled me in.

Regular readers of my blog here, and my journey with my dear brother, will know exactly where this hit me.

A gay man in this extremely rural central PA small town who runs a choir.

There is a place for my brother in this community. My brother who spent two years singing, wearing tuxedos and costumes, on some of Phoenix’s most prestigious stages with the Phoenix Gay Men’s Chorus. I had already been thinking and futurizing about finding him another place to sing, and thought maybe a church choir might be an option. And this landed in my lap yesterday.

I have a glimmer of hope now. I have absolutely no idea how/when/where all of us will land. I am still so tired and so traumatized myself over these events, that I know I’m operating on minimal brain power. I am doing my best to keep major decisions at a minimum and even with that, I’m making poor ones.

But my heart is still pumping and feeling and can recognize a sign of life when it comes my way.

So this is what I’m hanging on to today as I continue my quest to breathe my own oxygen, so I can of any benefit and value at all to my family.

Thanks for taking the time to read. I’ll keep you all updated, hopefully with some, any good news, soon. And if you’re a praying person of any persuasion, any good words sent up for my brother are greatly appreciated.

fa la la la la

We have firm concert dates!

Just found out today that the Phoenix Metropolitan Men’s Chorus Holiday concert dates are December 13, 14, 15. Friday, Saturday and Sunday. The Friday and Saturday concerts will be evening and the Sunday will be a matinee at 2pm. He’s doing fantastic and this is turning out very very well for him I’m very pleased to say!

Of course I will be perched front and center at all 3 shows. 😀

If you are out there reading and local and would like a ticket, please let me know–I’ll arrange one for you (they are running $25 for adults with discounts for seniors and kids) and we can all go together! And you can meet my famous, singing brother! 😀

Proud sister!

baritone

My brother will be performing on some of Phoenix’s most prestigious stages in the Baritone section of the Phoenix Metropolitan Men’s Chorus with rehearsals starting September 24th.

MAY I JUST SCREAM FOR ONE SECOND???

I knew he had a good voice. And I knew it was still a long shot. This is a big men’s chorus in town but of course not anyone can just come sing because they want to. You have to audition and audition my brother did.

Tonite at 5pm we set out in a crazy storm toward North Phoenix where the auditions were being held. Without a doubt I was more nervous than he was. We were singing in the car the whole way. We were told however that he didn’t need to have any kind of song prepared; he would be tested on range, voice matching and the ability to hold a note.

We arrived drenched in uncharacteristic Phoenix rain while leaving my umbrella in the car.

My brother was filling out the initial form with water droplets all over his glasses.

The President of the organization, Capone, met us cheerfully. He’s the guy we’d been corresponding with for a period of months setting all of this up. What a nice cordial fella.

he’s in the back row third from the left

We visited for a bit then the chorus Director, Mark, arrived and very quickly whisked John in to a small anteroom for the audition.

I was doing my best to play it cool conversing with Capone but I could hear through the door and they were doing scales and Alfonse was hitting every single dang note. Even Capone remarked “Wow he’s doing a lot better than I did at my audition”. He shared about how nervous he was waiting for days to hear if he’d made it and how utterly thrilled he was to hear he got in. “It changed my life” he said. He shared about how warm and welcoming this community is. “John will be welcomed with open arms and he will be taken by the hand every step of the way”.

Music to my weary ~~worn down by the mental health system~~ ears.

They emerged from that side room in a matter of minutes and I overheard Alfonse saying as they walked out “I’m in a program for people with mental illness”. Uhoh I thought. I’m sure they asked him what he did for a living and that’s what he answered. He didn’t skirt it but just owned it and put it out there. Ok, well there it is.

Mark swiftly slapped the paper right down on the table saying one word, loudly and crisply, “Baritone”.

I wasn’t quite sure what that meant so tried to play it cool just going along as I noted he wrote something else on the paper. He pointed it out as I said that John had lots of flexibility in his schedule and is very prompt and reliable so can be a great asset like that (still thinking I was selling it). He then directed the writing on the paper to Capone “see, volunteer” in a section of the paper reserved for special skills.

I thought “oh maybe they are designating him as volunteer” which actually would be ok.

We talked a bit more, I heard something about an orientation being discussed and then something about introducing John to the leader of the Baritone section but didn’t say anything for fear of being ~~pushy~~ presumptuous.

I shortly then said “ok what’s the procedure now? When will we know if he’s in the chorus?”.

Capone smiled this huge romantic smile and said “oh he’s in”.

I gasped! Chills ran all over my body and tears sprung to my eyes.

“Oh I’m sorry that wasn’t clear. Yes, he’s in. He will start rehearsals in September but you’re welcome to stay tonite and watch our rehearsal for the September show”.

OMG OMG OMG

He made it! Right then and there! HE MADE IT!!!!

Deep breath.

There was about a 40 min. break until rehearsal started so we decided to go celebrate and went for some amazing Mexican food at Ajo Al’s and margaritas. OMG HE MADE IT!

My brother’s life is getting ready to change big time.

Now the September performance is at the historic Orpheum Theatre in downtown Phoenix. This is a HUGE theatre. One where I saw Bobby Caldwell and the Jersey Boys touring show. I also saw Riverdance there once. It’s a big stage that gets big names. They said something about Susan Boyle performing after them (are they opening for her maybe?).

OMG OMG OMG HE MADE IT!

We came back after dinner and watched rehearsal. When we walked in the Director stopped for a moment and introduced us and all of the members applauded. OMG!

I asked and right now they have about 60 members but it can go up to around 100. They are doing constant auditions this month for the upcoming season. I went back to Facebook and looked at my original post–I’ve been reaching out to this organization since last April.

We heard them rehearse a very complex song that was so interesting and haunting…like mystical and angelic.

They took a little break and many of the men came up and introduced themselves to us…what a friendly group.

The leader of the Baritone section, also named John was super friendly and said to my Alfonse “Mark told me you have some amazing note matching skills”. Alfonse was so humble about it as usual and said “well I can hit the lower notes”.

OMG!

I’m still so overwhelmed. We left at the break and most of the men waved goodbye to us…such a friendly, healthy environment.

My schizophrenic brother is the next baritone in the prestigious Phoenix Men’s Metropolitan Chorus. He led with his voice and his voice carried the day.

Now doesn’t that just make you feel something?

silver lining

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.

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.

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.

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.

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.

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.

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.

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.

bridging

Meanwhile back in Tempe….

Most people who hang out with me locally know how much I’m in love with the Tempe Town Lake Pedestrian Bridge. I fell in love with it at first sight seeing it on the news, was there a few days after they opened it, had a miracle experience on the bridge (which I will write about another time) and since then I hang out there quite a bit. Definitely I go there for special occasions or when in that kind of need.

I do this ritual each time, either by myself or with whomever I’m walking with. I think of something in my life that I’d like to transform or sometimes just simply a wish. I step on the bridge heading the North direction and as I place my foot there I close my eyes and ask that anything inside me impeding this wish to come true be washed away from me.

As I (we) turn to head back, I ask that everything be brought to me that I need to fulfill this wish. Then I invite it all in to my body as I’m walking. I’m telling you, this is a powerful ritual and one that has transformed many things in my life.

Alfonse and I stepping back last Sunday

Now with that prelude, I’m going to tell you about how just two days after being on the bridge and asking for transformation, I ended up screaming on the phone at a member of John’s ~~refusal to~~ ACT Team and even dropping at least one F Bomb. This little encounter falls under the categories of “It’s About Time” and “The Last Straw”.

Let me back up a minute.

I know what you’re probably thinking, regular readers. I thought he was already out of there.

Well it wasn’t quite that easy. You see, fortunately and unfortunately, John has been on a highly regulated medication called Clozaril for months. It’s kind of a med of last resort for Schizophrenics but as his Dr. said “when it works, it’s a miracle”. In John’s case, it was that miracle. His deeply ingrained voices literally disappeared within two days after weeks of tormenting him.

The bitch though is it’s very regulated by the FDA causing him to have to have weekly blood draws to check his WBC and then it’s only dispensed a week at a time. The facility where the ~~terrible~~ ACT Team resides has been handling both of these tasks.

I spent my entire afternoon that Friday before heading down to the Ranch calling different pharmacies to see if they dispense it to be hit with a big fat ZERO. Most of them just don’t want to deal with the hassle. They also have to keep records of the labs as does the Dr. I tried my own small compounding pharmacy who did go the extra mile to get on the registry for it but then the funding issue raised it’s head. They don’t deal with Medicare. I just didn’t have time to get it set up before I left the country for a week.

I finally broke down and called the *#^@^$ ACT Team to request they float him for one more week until I got back and could figure this out. Aside from the med, I was also needing to set up the labs. John just can’t handle these kinds of tasks alone and I’m a trained nurse and…it was just something I needed to do for him.

How interesting and fortunate and bizarre that the Clinical Coordinator said to me “we’ve not even discharged John. He didn’t say clearly HE wanted to be discharged”. I had to laugh as I knew he did say that clearly. I knew it from John and I knew it from Manny who were both right there. That was the entire purpose of the meeting. I said it myself on the speaker phone!

This reinforces my belief that this team is invested in keeping names on their books (in one email forwarded to me, John was referred to by some kind of acronym like “the bhc”, not even his freaking NAME). They need to have those names to keep their funding coming in to keep their jobs but they provide next to zero services for those participants.

his name is John Monkman you assholes

Believe me once this is all settled and finished I will find a way to blow the lid off of this and expose them. I’ve written letters and filed a formal complaint but I will be taking it to another level: newspaper, legislature, something. Someone has got to say something. Think of all the other patients suffering in this highly dysfunctional program who have zero advocacy. I will be a voice for all of them. I need to bring this to some kind of completion just for myself even.

Anyway, I’m told he’s not been discharged which honestly I’m totally relieved to hear in that moment because they HAVE to provide his weekly meds while I’m gone and that’s 100% of what I’m caring about in that phone call.

I just go along with it and say we will figure out the rest when I get back, being very nice and accomodating. Knowing I’m completely using this system right now for only one reason and I’m perfectly fine with this.

Ok on to my meltdown.

Imagine me at work on Tuesday, anticipating my father’s arrival that evening, on a small break between clients. I see I’ve had a missed call from a number I sort of recognize but didn’t have listed in my contacts. The number calls me again on the break so I pick it up.

It’s Lynn, John’s “Compeer”. This means she’s a participant in the program (not ACT Team, basically the general mental health system) and is a volunteer assigned to visit and be a supportive friend to other patients. She was set up by another coordinator before ACT Team got on and I don’t even think they know of her existence. Which is good. They’d probably have tried to knock her off too as they did his counselor saying they’d provide their own, only to have a complete and total zero follow through on that. TERRIBLE!

Lynn sounded somewhat stressed and relayed a story to me of that morning having gone for her usual visit with John at 11am. They were planning to go to lunch. She found him hearing lots of voices (that’s been months) and he told her the voices were telling him to stick a knife in his throat.

Yes, take a breath. This psych patient herself arrived in to that scene.

As she said “I’ve had suicide training so I knew what to do”. She called her supervisor, called me (I was with a client) and sat with John.

Here’s where the match lit the fire in me. John told her he’d been waiting all morning for his daily “med check”. You know, the one and only service ACT Team has ever provided? The one he has never needed? The one where he’s at the mercy of their schedule, waiting between a two hour window every morning so someone can come to the house and watch him put his pills in his mouth and sign a paper? That one.

And, they never showed up. No call, no show, nothing. John later told me this was the third of fourth time that had happened. They don’t follow through on all the services they claimed were available that first day we transferred him there: finding volunteer work, voc rehab, assistance with home tasks, social activities. They have provided exactly ZERO of those services and the one and only service rendered has been the unnecessary and unreliable and disruptive “med checks”.

I’ve told them, John’s told them that he prefers to take his meds right upon waking. He feels worse in the morning and gets up early and taking his meds helps.

Well this Tuesday, he had been waiting at least five hours for those *#$#^@ to show up and no one ever did. All the while his symptoms started escalating in to voices and suicidal thoughts.

Lynn told me she’d stayed with him for an hour after he took his meds and his symptoms abated and he decided to go get a massage. She called me then saying she felt confident that he was better, that he was not going to be alone and that she knew my father was arriving in a just a few hours.

Then she threw kerosene on that smoldering flame inside me, sharing this:

She told me she’d called the ACT Team to report this, was transferred to John’s now third case manager, someone I’ve never met and told her what happened. She was obviously and understandably still upset and very worried about John (thank God someone was). And she said to this person “someone dropped the ball here”. This mental health professional barked back at her “NO ONE dropped the ball!”.

Then proceeded to hang up on her.

Another mental health patient reporting a crisis, involving a potentially suicidal participant in their program. And she was hung up on.

Ok now my waiting room is filling up with smoke coming from my ears as I said “Lynn I need to get off the phone right now and make a phone call. You handled this perfectly. Thank you for calling me and I will let you know how he’s doing” through my grinding and set jaw. My eyes filling up with blood.

I then called the ACT Team and after much shuffling around (you can rarely actually get one of them on the phone but every time I’ve been there they are all sitting around in cubicles. They certainly aren’t out servicing their clients I’ll tell you that!) I got someone. Not the case manager who hung up but another person.

And I unleashed. The words “you guys are TERRIBLE, just so TERRIBLE” were probably said about 15 times and she kept repeating back “I know, I understand”. Of course she KNOWS! She works there! Isn’t that bizarre?

pity the fool who messes with a Scorpio OR a cheetah

I told her the med checks are over. That John will be getting up in the morning and taking his medications on his own. I don’t care what they need in terms of their program, I told her. I’m swimming as fast as I can to get him extricated this week and they WILL NOT penalize my brother for their own poor performance. That I have a lawyer. That John is protected and I’m prepared to take this as far as I need to.

I told her John is UNSAFE in their care. I was just all over the map venting. I have to say, it felt good. That volcano needed to erupt. F bombs flying and all. Someone needed to hear the reality of the other side of their incompetence. Sometimes someone needs to just display that outrage!

She kept saying “do you want to talk to my supervisor? John’s case manager?” to which I replied “the time for talking has ended-everything will be in writing now. We are past a stage of talking.”. I assured her I would be getting John out of there within the next two days and if he needed his meds filled there this week if we couldn’t find another pharmacy yet then the WOULD be filling them for him. They will not allow him to walk out of there without a plan for his critical meds. And my lawyer will make sure of that.

Then I hung up on her.

Whew! That was a lot to relive right now.

Sometimes you just do have to go kicking and screaming from a relationship.

The good news is we met with the entire team yesterday (minus Lynn)–Dr. Yasinski who will be taking over, Manny Walker his advocate, me, my Dad and set up the new plan of action. Manny will be walking in to ~~Hell~~ the ACT Team this week with John and making sure he gives them formal notice of his intent to be discharged clearly and likely in writing. Manny had to laugh that they didn’t think John had done that already but again it kind of did work in our favor for just one week. But still….really?

A Psych patient is more competent at monitoring my brother than this “intensive monitoring program” for the most acute patients in the system? Really?

Oh and as a final note on them. No one, not one person, ever called to check up on John after being told he was suicidal that morning. It’s just astounding, the apathy. I don’t even have a word for it.

Yes this will all be documented somewhere where it matters. These people need to be exposed. This sham of a program using the mentally ill in my community needs to have a light shined on it. This is tax payer funded! And I’m just the snappy Scorpio to do just that. My heart breaks for each and every one of their participants knowing what I know.

They are simply being used. As if they aren’t disenfranchised enough. The very system designed to help them is abandoning them and using them for financial gain. And that is exactly how I see it with no evidence to the contrary.

So I asked for anything impeding a wish to be washed away on the bridge on Sunday then this erupted two days later. Interesting huh?

someone else thinks like me on the bridge

John is doing well now. He’s happy my Dad is there indefinitely (at least until Feb sometime) and feels good about the new direction he’s headed. That we’re all headed.

We will all be going to Sedona this weekend and showing off all our hard work on the house to my Dad who’s not seen it since it was empty! I’m excited about that. And Steve’s coming along too.

I’d say we have a lot to celebrate having survived this war.

saw this blue heron on the bridge

together

I’m dedicating this post to this comment by my dear Peepers McPeep:

Katie, such a lovely poem.
You’ve given John a great gift.
That of Hope..
His is a new beginning, learning to walk again with confidence.
You, as his guide, lighting the way.
Give yourself permission to rest along his journey,
There are days when he will carry you.
You will find what you seek,
Cradled tightly as you listen to the heartbeat of your love.
That will be your Destiny.

She left that yesterday responding to my post about Faith.

I can’t tell you how close John was to being hospitalized again over the last 24 hours. It was as bad as it gets. Both of the programs he participates in were responding in crisis mode. I moved him here indefinitely. His case manager met with me twice today very concerned about Alfonse and problem solving how to keep him out of the hospital. He said to me “you know you are the reason John is alive”.

I thought about that comment later and thought, no, I am a big part of the reason he’s done as well as he has over the last year, truly a miracle in comparison to the last 20 years. But what’s kept him alive is far and above me. He’s been in so many dangerous situations, taking his hands off the wheel of his car when voices told him “it’s time to go to heaven” on a major highway, etc. I don’t want to revisit these. But something, someone far beyond me has kept John alive all these years, that’s for sure.

As I left John at the program, I gave him a big hug and told him I loved him and the nurse he was visiting with said “You have a good sister” as I walked out and he said “yes I do” in that flat distracted way he gets when he’s bombarded by voices and paranoia. I am so aware when I go there just how rare it is that mentally ill patients have support. I often feel like a unicorn when I’m in there as so often patients are sitting there alone. Just like John was for so many years before he moved out to Arizona. It just breaks my heart thinking of it then, seeing it now.

I came home, with thankfully almost a full day off, and crashed hard. I barely got off the couch all day, laying there dozing on a heating pad. I have to say I was in some pretty extreme pain all day so I just rested and did my best to rest and breathe and wait it out. Gallstones make their presence known on their way out, I’ll just say that. They don’t let go that easily. They like to make a grand exit.

I had no idea what I’d get around 2:30 when the shuttle dropped John off. He was really pretty bad when I left him at the program this morning. I didn’t know if I’d have another night of acute psychosis and how I’d deal with that not feeling great myself.

On first look, he was already more connected when he walked in the door. I think the hardest thing about mental illness is the way it hijacks someone’s personality. It’s like John disappears behind a wall of that. And that is so far from his sweet charming little personality, it’s just depressing. It’s almost like a death in itself.

So he came in and went straight out to smoke. I asked him to do some sweeping for me so he didn’t track in the palm debris when he came in and out smoking and he did so readily. He’s usually very cooperative and doesn’t complain when I ask him to do things. He doesn’t often initiate but that’s ok. He cooperates.

He saw the heating pad by the couch and asked if I was in pain. I told him that my back and stomach were killing me all day and I’d been working on it. He said “Oh I’m sorry you’re not feeling well” then stood up from the couch.

He walked over to his suitcase , opened it, pulled out a bag and in it was a medication vial. He handed it to me and said “I have these ibuprofen tablets from the hospital and I think it will help you. Why don’t you take one?”. I sat there, stunned that he was initiating this help to me. I just said “ok that’s a great idea, I hadn’t even thought of that”. He instructed me not to take another one for 8 hours and no more than 3 over a 24 hour period. Like a good little nurse.

How sweet was that? And you know what? It worked!

I leaned down to hug him as I left to work for a bit and he hugged me back so tight saying “I love you my dear Sister”. I thanked him for helping me with his ibuprofen and told him it was really helping, because it was.

I made it in to treat my client and back home again pain free after a day of misery.

As I walked in the door, I saw John on the phone and stepped right in to these words “Why don’t you call me next week? I’m staying at my sister’s for awhile. She’s not feeling well so I’m staying here to take care of her”.

Ok, if that just didn’t bust up my paradigm right there. I love being proven wrong in cases like this. He thinks he’s staying here to take care of me.

And so I’m going to let him.

We had a lovely dinner together undistracted by the voices that consumed him just this morning. And now he’s resting quietly over on the couch stretched out watching The Next Food Network Star. The key word of that sentence is quietly.

Alfonse and I will get through this life together, extending a hand, hopscotching ourselves over each threshold we encounter. Together. Hand in hand.

Protected.

(took this photo the first step we took in to our Sedona home last February)

enchantment

When John came out to Arizona for a mental health program in the summer of 2012, he told me he would only move to Arizona permanently if he didn’t have to live in Phoenix during the summer. I can’t blame him, the summers here are brutal. I didn’t know how I would make good of that promise as there was no way I wanted him to return to the life he’d had in Illinois where he’d become so unstable. Even for a day much less a summer.

One month after he’d arrived, I took him to Sedona for the 4th of July. I’ll never forget the look on his face as we turned that corner and he saw the red rock view and he kept exclaiming “Kathy, I love Sedona…I love the red rocks…I love Sedona” over and over. It was like a magic spell was washing over him. We stopped for lunch at the swankiest resort in town–Enchantment. We had a drink and a snack and on the inside I was marveling not just at the view but the fact that I was sitting here in this environment, with my brother, simply dining, chatting and taking in the view. Without his being consumed with symptoms. It was at this place that I realized we were really out of the weeds with his illness.

Fast forward a few months to January 2013. We find ourselves back in the same restaurant eating lunch. I took this photo of him that day. Our Dad had told us some months before that he wanted to purchase another vacation type property for our family. After much thought, we landed on Sedona for many reasons but the look on John’s face that July day was certainly in my mind. Sedona would be a perfect location. He could get away for the summer but not be too far. I have spent years working and training in Sedona so it was just perfect.

By this day in January, I’d been looking online for properties for a couple of months. We went up there for other reasons but John and I decided to have lunch, then go roaming neighborhoods to see what we could see. Just a little recon expedition.

We drove in to a condo neighborhood that I’d seen online with just one property up for sale. We stopped by that location, John got out and grabbed the flyer in the For Sale sign then looked ahead and said “hey there’s another For Sale sign up there”.

We drove up to that property, he got out and grabbed the flyer again and to our surprise it was a brand new property, never lived in! So we got out and peeked in all the windows and liked what we saw. On a whim I just called the number of the realtor on the paper and she picked right up. She asked me where we were, I answered “right in the driveway” and she said “give me five minutes, I’ll come right over”.

She showed John and I that home that day and by the end of our tour, my brother was showing me where we could put the Christmas tree. Every window had an amazing view, upstairs and downstairs. Three bedrooms, three bathroom, perfect for us.

We convinced our Dad to take a look the next day and let’s just go ahead and say, my father bought that house two days after the day John saw that sign. It’s our new house!

John has not seen it since the day we toured it. He spent a month in the hospital with a drug reaction this winter so missed the trip I took up there to accept a furniture delivery. When I was up there by myself, I realized the builder had left one item behind that they had “staged” the property with. It was left in Alfonse’s bedroom.

Life isn’t about waiting

for the storm to pass…

It’s about learning to

Dance in the Rain

When I saw this proudly hanging on the wall facing his new bed, I felt like I was seeing that cane by the fireplace in the movie “Miracle on 34th Street”.

Tomorrow we head up together to accept a delivery of all of his furniture/furnishings from his apartment that’s been closed up in Illinois, finally.

For some reason, Alfonse had been accumulating new furniture, new dishes, new flatware, glassware, linens, etc over the last year. Funny how everything has a “Sedona” vibe in earth tones and “Santa Fe” style. It’s almost as if he predicted this home purchase.

And finally he will be reunited with all his personal belongings he’s been without for a year now.

And I’m sure I’ll take him back to the Enchantment Resort for a little celebration while we’re up there.

Enchantment, indeed.

I’ll be back in four days or so. With more stories. 🙂

valid

I look at this photo of Cindy, Buddha and I on the porch steps of our family’s Maine summer cottage, just moments before we were taking off to head back home in the summer of 1988 and remember how carefree we all were then. I remember how Cindy and I went out one day shopping and bought those hats together. I remember showing them off to my Dad who said “Kathy, that hat is you” and how Cindy kind of wistfully replied “I want a ‘you hat too’ “.

I remember that year she just wasn’t usual confident chipper self. She was just weeks shy of turning 30. She decided when we got home that she needed to work on some things so she joined a self esteem group. She had been enrolled in that group just a week or two when she met Michael Apelt and everything started spiraling downward, unbeknownst to any of us. None of us navigated our childhood unscathed. I’d been in counseling for a few years at that point having suffered a severe anxiety disorder in my twenties so I whole heartedly supported her reaching out for help.

One of the assignments given in that group was they were to ask someone, a loved one, to write a list for them of all the things they loved about them. Cindy asked me of course. I wrote this crazy list of deep and superficial things extending in to all the margins in a green marker type pen. Her therapist, who had to testify at the trial of Cindy’s killers, told me that she’d had them all read their lists out loud in the group. That Cindy was crying so hard she could barely get through it but the therapist kept encouraging her to read it and she did.

Can you possibly know how precious her sharing that with me was? And is now? That she was given that assignment and chose me to participate leaving me behind knowing she knew all of the ways I loved her before she died? In writing no less.

I look at that picture of those steps and it also conjures up a more recent memory having to do with John. In the Fall of 2011 I made my annual trek to Maine to the family cottage. My Dad had of course flown John in from Illinois where he was still living to join us. Having John on vacations, until recently, was a mixed bag for all of us. Sometimes he would function, much of the time he was completely consumed with symptoms and disruptive. I remember saying to my father before coming that year that I’d like for John to only be there for half of my trip that “I’d like a vacation not consumed with mental illness” for my own sanity. Now, with all that’s happened, I can’t imagine feeling that way as so much has changed in a short time, but it was the truth in 2011.

That year John was particularly symptomatic. That means he heard voices constantly, was totally paranoid, couldn’t engage in converation much and mostly sat and talked to his voices and chain smoked. Where his “smoking section” is is at the base of the steps in that photo. That vacation he had escalated so dramatically, yelling at us and filled with what’s called “religiosity” talking the Devil, Hell, etc., that my father and I took him to the Psychiatric Emergency room for a shot of Haldol. We talked about hospitalizing him. On our vacation. This is the reality of what we lived with for many years with John. What he lived with with himself.

I hit some kind of wall that year. I borrowed one of John’s cigarettes (well, I wasn’t intending to give it back) and went and sat on the front steps facing the ocean and decided to have a cigarette with Cindy. I sat there, by myself, smoking that cigarette and literally talked to her out loud. This was a huge breakthrough for me because even thinking of her at the cottage was excruciating even all those years later. The last place we were all together. It’s somehow easier to think of making new memories instead of resurrecting the old ones. At least it was then.

We smoked and we talked and I simply asked for her help dealing with John. That I was lost and I needed her to help me. I couldn’t do it alone and I saw no light at the end of the tunnel. I saw a future of care taking both him and our Dad as they both aged and had more needs. And I just never had anyone at my back. At least that’s how I felt being single and managing my own life alone for so long. I was born a middle child. I wasn’t supposed to be on the front lines.

I have to say I felt somewhat better after that smoke break.

Shortly thereafter I went looking for my Dad and walked out the back steps of the cottage, those steps we are sitting on in the photo, past John who was sitting on the landing smoking, talking to himself as usual. What happened when I walked past him again is where the stars started to align and where I got my first sign.

I noticed John sitting there turning something over and over in his hands. I sat down in the chair next to him and asked him “what’s that?”. What he was holding was a small decopauge plaque. One that Cindy had made in the 70’s, this being our “summer craft” that year. He showed it to me and what it said on the front that she had burned in to the wood with my Dad’s wood burning tool. Emblazoned in this plaque were the words “Take the Valid Choice” with a tiny flower burned next to the words. It had a sand dollar and shells glued to the front. Her initials and date was burned on the back. John kept repeating that phrase over and over “‘take the valid choice’, Kathy, isn’t that funny? Remember how she always used to say that?”.

Now this phrase had become a bit of a joke in our family. Our Dad, a Psychologist, would always turn decisions back on you when you asked for advice and ask questions back like “which do you think is the valid choice?”. It drove us nuts as we wanted him to just make a decision and tell us which way to go and he just never did that. So, probably Cindy, at one point blew out with exasperation something like “can you please just make the valid choice for me?”. It was hilarious so turned in to a family joke.

I asked John where he got that plaque and he replied “from that shelf above the kitchen door”. Now that shelf is high. It’s not something that would normally catch your eye. It’s something you’d have to be looking up to see. Moments after my smoke break with Cindy, John was drawn to look up to that shelf, reach up and take that plaque off and go outside with it and show it to me as I passed by.

I knew then and there that Cindy was in the equation. That she was with us. That she was going to help me. Help us.

Less than a year from that moment by John’s 50th birthday, he had disappeared, literally disappeared for weeks on end, not once but twice. Missing Person reports, police tracking him down and the whole nine yards. This was new behavior. Things were just getting worse.

After the second time I broke down on the phone with my father, bawling, telling him I just couldn’t handle it. I didn’t know how to manage him, how to deal with this and have my own life at the same time.

And what my father replied truly shocked me. He told me I was entitled to my own life and that he thought I needed to let my brother go. That he could see the pain this was causing me and that John had to wind his way through this life and if this was the way it was happening for him, I had permission to detach. To let him go.

I just broke down that night. Tears in to my sleep.

And woke up the next morning and called my Dad and said “thank you for the permission Dad but it’s me we’re talking about here. I can’t do that”.

And then the world opened up for Alfonse. I got the instructions of what to do and followed them. He was escorted back in to life by a team of angels who guided me and my decisions/actions every step of the way, who gave him his life back. I listened. I took the “valid choice” which really was the only choice and have been guided by them, by Cindy, by our mother, ever since. More of that story to come later.

Just say that John is beating all the odds and is recovering from Schizophrenia in some kind of “waking up from a coma” sort of way.

And anyone witnessing it is fortunate to know that miracles truly are available on this planet. And when I say anyone, I mean, especially me.

	Cathy Kjos on foul-weather friendship
	Kim in NM on foul-weather friendship
	Susan Baker on fyi
	katiecoolady on fyi
	pilcherje on fyi

two innocents

(to innocence)

schizophrenia