Well, my brother has been out of the hospital for two days, and as of his appointment with the Outpatient Clinic he doesn’t get gets services from, and they have managed to drop the ball right out of the gate. Yep, looking straight at you Terros on Priest. I can’t say I’m surprised. At least they are consistent.
He was given a week’s worth of medication from the hospital, with a required followup within 72 hours at the clinic, which he got. However, Terros managed to let him leave the clinic yesterday without giving him any more meds, which was the sole purpose of his appointment. Gee, I wonder just how he ended up messing up his meds which caused this crisis in the first place? So, now, he’s out of meds as of Monday, and no one there seems to notice or care.
So…they told him he has to “call back tomorrow” to try and get an appt. with the nurse there to obtain his required meds. He will likely call back today and be told there are no appointments available. It all completely stressed my Dad out to the point he walked out and headed to the car and called us later extremely upset.
In addition, he has to have blood tests completed each week in order to obtain his meds. And he has no followup lab appointments. Honestly, I don’t know if they even have the balls to drop. They are just phoning it in at this point, while obtaining the funds for my brother who is on their books. It’s maddening.
On top of that, the Continuing Care Community here has still not given us the go-ahead, although they have all the required documents, and we’ve hit the marks they asked us to and yet have still not green-lit us to have the house. I expected it by Tuesday this week based on everything they’ve said to my husband and I.
Which is also not good for my Dad’s head (or mine, for that matter). I broke down and said we simply need an answer by the end of this week or we, sadly, will have to pursue something else. Another community is actively pursuing us, but it’s much farther away. It’s not fun to feel strung along, although I don’t think it’s exactly what’s happening, but how it feels. I think they are having some communication breakdown issues (which is also not confidence-building for the organization), but man, we’ve been on this for almost two months. I never thought it would be this hard to give someone that degree of money.
Once we have a solid place for them to land here, we can start a solid process of moving them, thus extricating my brother from Terros who has really been a source of danger for his stability. I’ll likely have to make some phone calls today and am contemplating requesting a new case manager, as the one he has is pretty impossible to deal with. I just can’t wait to get him out of there and in to a simpler situation here, but they hold the cards in AZ right now and it’s not at all a comfortable spot to be in. He had such stellar care in the hospital, that although we anticipated this based on years of history of their incompetence, it’s still shocking to be living it.
My Dr. appt with the sleep specialist went ok. It’s not an easy fix, which I kind of wanted. But after a lengthy, informative discussion with the Dr. about my sleep issues, I had to come to Jesus with myself and my belief systems about health and healing and realize the goal is to get myself relying on my innate systems to help me sleep. And that won’t be fast or easy, but there is a plan. In other words, I’m not going on Ambien or any meds like that.
This is going to be a real psychological as well as physical confronting the deepening rut I’ve found myself in regarding insomnia, and taking some time with it. I slept better than I anticipated last night with this plan, but I’m groggy and sluggish and just not feeling great this morning, which likely explains the tone of this post.
I hope to have better news tomorrow. I really hope we don’t have to start all over again with looking for housing for my family–my husband is very optimistic we will still get what we are hoping and planning for. I’m doing my best to jump in to his wake.
I’m just weary.
And too lazy to find and post any photos.
But the good news, is the rabbits seemed to have stopped eating all my tulips in the cutting garden.
So in this sea of limbo, I’m at least accomplishing that.
Edited to add: WE JUST GOT CONFIRMATION ON THE HOUSE!!! HALLELUJAH!
John was discharged yesterday and is happily home. He was doing great yesterday–my Dad was more anxious than him, trying to sort out his meds. I’m sure he’s suffering some form of PTSD after going through up close and personal what we all did five weeks ago.
Hopefully we hear back from the Continuing Care Community today about the house. I sent them the beautiful letter the hospital sent on my brother’s behalf, along with his med list which is amazingly simple, considering.
I dreamed about trying to find a key last night and it just being out of my grasp. Duh.
I hope to update with jubilant news in my next entry. This living in limbo is for the birds.
Speaking of birds, (loose association alert), I think my homemade rabbit repellant spray just might be working on my community cutting garden. They did nail an entire section of my tulips though. 😦 I’ll know for next year.
My neighbor loaned me her big garden owl that I plopped in the center- so today I’ll head over to obsess check again.
Oh! And one of my peony plants peeked out yesterday.
Well, we are still in a fast time of change, but things are realigning more and more and less disintegration each day.
(Not gonna lie, that was a brutal phase, though)
It’s gorgeous– still crisp and cold–but sunny here in Central PA. I took a long, winding country drive yesterday to pick up some packages of smoked cheese from a vendor I met awhile back. He smokes everything and his smoked cream cheese is just nirvana.
I’d never been out his way before, as I met him at a fair, but I welcomed the outing and the views while catching up on a bit of news. I’ve been limiting my exposure to news and things like that lately. I even took the Facebook app off my phone awhile back. I know; shocker.
Checked on my 2000 or so bulbs in my cutting garden and dammit, those rabbits are feasting on my tulip shoots. SO, I brewed up a nasty spray that will hopefully be a repellant. I put a bunch of garlic cloves, red pepper flakes and dish soap in some water and sat it in the sun. I did my first spray last night so please please please bunnies, find something else to eat. They don’t seem to like my daffodils though, so there’s that. This is at the community garden plot and a total experimental flower garden this year, so I guess this is part of the experimenting!
My brother called me yesterday and we had a 26 min. conversation about everything. Mostly the move and their new home–fingers crossed that we get it, which is looking really good.
I love his social worker at the hospital. I told her that the Community we are planning to move them to will just need to see his discharge records from this hospitalization to finalize things. So, on her own, she decided to craft a letter on his behalf along with his doctor. We should finalize things there in a few days, but I’m feeling more optimistic each day.
Sometimes I wonder if staff in these facilities are so unused to their patients having family who care so much about them–and advocate so strongly for them–that either we’re a breath of fresh air or a pain in the ass. Both, I suspect, depending on the person and the quality of care they are delivering.
I feel certain he will be discharged tomorrow and I think everyone is ready for that. Including my Dad. It will be a transition though, and a delicate time.
I’m sending him a celebratory meal tonight–so far I’ve sent pizza, then Chinese food (which he loved), so he asked me to surprise him for tonight. So….drumroll…..his going-away meal is Mexican (shhh, keep it a secret). I was literally drooling looking at their menu and all the seafood options they have. I did add a grilled shrimp taco to the order (I want that).
So…onward we go. Today is another gorgeous day out there, so I’ll be outside pruning in my home garden, then doing my Mr. McGregor thing and see if my tactics were successful.
And I’m gonna cook something today. Not sure what, but it will be delicious.
Well, things are continuing to progress forward with a spiral momentum, that sometimes pulls back to catapult ahead.
Today is an ahead-moving day.
Yesterday I got out in the rain to do some errands and decided to go look at a couple of condos in the area we are considering as a back-up plan for my family, should the Continuing Care Community we are pursuing not be an option.
I saw this cute condo with a beautiful view in the back that had been on the market awhile. I did note LOTS of cars in front of it though…hmmm. I called anyway, and didn’t get a return call until this morning. More on that in a bit.
Also saw 4 new builds in that community. The notion of just moving there here in a lateral style move–exactly how they are living now--forfeiting some support structures, but also eliminating the hoop-jumping and uncertainties–sounded appealing.
We have not broached the condo idea with my father, but are broadening our options. We just know we need to move them out here and there has to be an option. Also this being in limbo with the retirement community for over a month now, is, well, on my nerves. And I don’t have many functioning nerves left at the moment (the shingles is improving though).
So I got home and as usual, had a full processing session with my husband. I was leaning more toward the condo option and he more with the community option. We landed in the middle, that should the community give us an open door, we will walk right through it.
Later, on Facetime with my Dad, he just offered that outright without us asking–that he was hoping it would work out with this close community–that the other one we’re also in communication with is good, but “ten miles is still a lot compared to less than one mile” (distance from our home). I mean I could bike to their house easily if we get it.
We decided to stop waiting and call for information as to how they were leaning. I felt pretty discouraged when I left the last phone call, but I was generally not in an optimistic place–unusual for me–that day. I felt like our odds were about 50/50.
My husband relayed the info from his call with sales person and thought we were really pretty much a “go” with them. But still, we have no contract or have not given a deposit.
I decided to call her myself. I realized that she doesn’t exactly know either–that she was making assumptions based on that meeting we had with the CEO–but she was left with a distinctly more confident impression than I was. I finally just said “we are riding a momentum here, and we need to get them moved, so I’m going to be honest, I’m pursuing other options right now as we need something we can count on.” Assuring her I understood if John was not a fit for their community, but we just need to know.
It’s good to just tell the bald faced truth sometimes.
SO, she leapt in to action, decided to meet face to face with her CEO this morning, and boy did she not waste a minute calling me after that meeting.
She feels like “it’s a go” at this point, that they just need discharge paperwork on John once he’s out of the hospital, which I can easily obtain, and then we can move forward with the contract.
Whew! Huge relief. I can’t wait to tell my Dad. It’s definitely the best option due to one very important word : LOCATION LOCATION LOCATION.
That will just simplify so much for us.
And catch this. The realtor finally called me back this morning on that cute condo with the view. Those cars were all there yesterday at the exact moment I was passing, because they were doing a closing on it. And check this–the woman living there sold it, because she’s moving in to the same community we are getting Dad and John in to. BOOM! Even the Realtor noted the “irony” in all of this. Irony to her; serendipity to me. I was literally sitting in front of the condo as they were closing on it inside.
John is being discharged Monday–I’m glad they pushed it back a couple of days so they don’t have to traverse a weekend with no services should they need them (as skimpy as they may be).
And my John is headed out there in less than two weeks to be boots on the ground prepping for the move.
And I’ve slept (assisted, but still) the last two nights. AND got my appointment with the Sleep specialist moved up a week.
AND the sun is shining today, in beautiful–still cold–central PA.
Sprinkling in some photos of this zuchinni pasta dish I made from Stanley Tucci’s CNN show on traveling, and eating, through Italy. It was delicious! And while eating it, I looked at my bald, cute husband in his black T shirt and said “It looks like I’m even eating with Stanley!”.
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:
1.0HorribleCase 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.
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.
Well, yesterday was just one good day. One that we needed. It feels like solid ground is placing itself at our feet finally, and we are all starting to trust it.
We started our day with my generous husband handing out gifts he’d brought back from his recent trip to Sedona. He likes supporting the Native American artists at their roadside stands, so always comes back with silver and turquoise bracelets, necklaces and hair accessories for Lillian. And always crystals and healing stones. We’ve all begun sleeping with them in little pouches.
Later, after spending a couple of hours at the flower shop, and meeting the pastor of the church with the choir I mentioned earlier (with his funny husband), I popped by my two cutting garden plots to check for any action.
My tulips and double curly daffodils are peeking out! Also in this experimental garden plot are 5 garden roses and I think 6 peonies, some lilies and whatever gladiolas I didn’t manage to pull out in the summer. Maybe two thistle plants if they come up again. Fingers crossed no critters find it as it’s a lone Spring plot in the field.
On my way to the flower shop, I phoned my Dad to check in and share some feelings–about how I felt this all crumbled for a reason and that we were now gaining a new foundation–all four of us. None of us came through this tumultuous time unscathed, yet now we are reforming and forming new bonds, which will support us going forward.
I felt back to my old self and my core philosophies–that things have to fall apart before falling together sometimes.
“If the door at the one community closes, it just means it’s not what was meant for us, and we will keep looking for the open doors,” I told him.
There are two other similar assisted living communities near us, and we will approach from a completely different place if need be. I just know they will land here–the how/when questions are still floating, but they will land too.
I had my first experience with Uber Eats! It was a little different than GrubHub so I ended up making and cancelling my order three times, but the fettuccini alfredo with chicken and broccoli made it to the hospital! I bumped up her tip to about 75% as she had a hard time finding the exact building to take it to, and anyway, she said on her profile she was doing Uber to buy herself a motorcycle. Vroom vroom!
I called John forty-five minutes after he received the order. “Oh, I know I have a sister who loves me!” he opened the call with. He detailed how the restaurant had packed every element of the dish in separate containers–from the pasta to the sauce to the chicken to the mushrooms to the broccoli and how he had fun making a meal out of it. How he was too full to even touch the bread, but “it smelled so good”.
We spoke for thirty-five minutes, right up to the moment where the nurse came by and pointed him to the sign by the phone saying phone calls are to be limited to ten minutes. Oops!
He did most of the talking–about the meal, about playing basketball earlier in the day, about different movies and TV shows they watch there “Are you watching The Bachelor?” he asked.
We also reminisced about trips we’ve taken together--the wild one when we drove to Mexican beach border town and could only find this “Roach Motel” with a shower with no shower head, a cockroach in the tub and, as he reminded me “Rocky Mountain pillows” that pushed our heads in to 90 degree angles to the bed. He remembered how the band at the cantina seemed to be on top of our room, playing loudly in to the night and how I kept checking out the window to make sure my car was still there.
What a memory! When I asked him if he remembered what we did on the four-hour drive down, he said “Oh yes, I told you the whole movie of The Silence of the Lambs!”. He scared me so much in just the telling of the movie, that I pulled the car over at one point to gather myself.
He reminded me of the time we went to Sedona together–about twenty years ago, long before we had our house there–and stumbled across a Miss America pageant on TV. How I put on my bathing suit and heels and called myself “Miss Sedona” making him laugh parading in front of the TV.
“We’ll have to watch another pageant,” he said. “Hopefully Miss Sedona will show up again.” Big hearty laughs.
He talked most of those thirty-five minutes and I chimed in when I could.
Told him how glad we are were of how well he’s doing after he detailed to me all of his medications, and how he will likely be discharged pretty soon and back at home with Dad. He generally just seemed cool with the process–not anxious being there and not pushing to leave.
It’s all just chemistry, as it is with most chronic diseases. Getting the right dose of insulin for a diabetic, the right antibiotic for an infection, the right cocktail of meds to support a cardiac patient. It’s just that the mental diagnoses hold more stigma. Other than that, it’s all the same.
I slept well again last night. Not gonna lie, I’m doing a trial of my friend’s eleven-year expired Ambien which is the one thing that has given me a full night’s sleep. I’m hoping getting a few nights under me, will recalibrate my system to go back to remembering how to do it on its own. My nervous system is calming down more and more each day.
One more funny thing from yesterday that has me still laughing–I love autocorrect gaffes. Lillian and John went for a bikeride in a town about thirty miles away where they have a Wegman’s grocery store. That’s where he stops to get certain special things like my Barrett’s ginger ale and now, Jeni’s ice cream after we found out it’s Joe Biden’s favorite. This was just a funny text exchange we had that might give you a giggle.
Had a fun morning with Lillian cozied up together in this chaise I’m sitting in by the window, playing with Snapchat and watching funny videos on my phone. I can’t stop laughing at this one, a month now.
Well, that’s about it. We haven’t had this level of a hard crash as a family in I don’t remember. But all of our bonds are solidifying. We are talking more than ever. We are softening to each other more deeply and creating a new, more inclusive and healthy unit moving forward.
And, I’m learning more and more about myself through this forced rest right now. For that, I’m grateful.
Have a great Sunday everyone. Hope we all find some magic in this day today.
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.
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.