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.
13 thoughts on “signs of life”
Oh my…what a saga. I just want to give you a long hug…no one should have to endure what you have this past month. I, too, am struggling so I will go look for some crocuses. Love you my friend.
My life is quite similar to what you go through and I feel enormous empathy, Kathy. Knowing what this does to your physical health really makes me sad. I continue to keep your entire family close in my heart and prayers. Sending healing vibes to John. I hope he can return to his former calm and caring self again — very soon. ❤️
Praying for your brother and you and your family. Glad you were able to get out of the house and experience hope again.
Kim in NM
Prayers for you, your brother and Dad Kathy. Wishing you loads more blooming yellow Crocus in your future! Take care of yourself while you take care of others.
Continued prayers and love being sent to you, John, and your family during this season of your lives. I’m so glad that you got out to some fresh air, a friend, and the door has been offered for opportunity.
Hi Kathy…having had a father with schizophrenia and being a RN in a skilled nursing facility(prior in personal care) , I can only imagine what a nightmare this has been for you and your whole family. Plus adding Covid19 in the mix it is unimaginable and being so far away trying to navigate this difficult as you expressed so clearly in the blog . I also live in Pennsylvania but closer to the Philadelphia suburbs, I wish I could help you in any way. You are trying your best and hopefully your father will realize he needs help now more then ever with your brother. I am praying your brother gets back on track with his medications and that he has some medical professional out there that will intervene on his behalf that truly knows him over the years and cares(there are people out there in the medical profession). Your father has memories there and I don’t think it was a crisis he was waiting for but he also has fears at 90 and like most parents not wanting to be a “burden” on anyone. So I am praying for you of course and your situation…but remember you must first take care of yourself. You are such a kind, caring and open soul that I hope to run into you at Knoebels someday.
This was really helpful to read Patty–thank you. ❤
Praying for you and your whole family, Kathy. A small reminder for you I found when I searched for what does the Crocus mean.
Crocus Meaning and a Symbol of Hope
Traditionally crocus has been equated with joy and cheerfulness, especially yellow crocus. And because of its blooming when you need it, the crocus has also been seen by some as a symbol of hope. Winter will indeed end, spring will come again and life will go on.
Thank you for this! Even more today. 🙂
Will definitely send out a prayer for your brother , and, of course for you , the champion that you are and have been. I hope your shingle’s clear up with ease and have high hopes for the moving transition. Love you tons and look forward to an update!
My whole heart of love, compassion, listening and knowing that the universe gifted us with you!!!
Oh no Kathy, I was behind on your news! I thought everything was rolling fine toward getting them to PA. I am so sorry to hear about these huge glitches, and will keep all of you in my thoughts and prayers. The one thing I had thought about with him moving to Pennsylvania was his chorus. (Our SF Gay Men’s Chorus is huge in so many people’s lives.) This part about the choir director walking into the flower shop is amazing, and just so certainly seems like a sign! Hang on.
Kathy. Attempting to care for my hemi-paralized mom for seven years was a challenge in all aspects but I don’t remember having to go through as many trials as you have recently. How lucky I was! I’m sure the love and support you get from hubby will aid you through this, as will all your memoralizing of events. Writing does help keep the mind focused and healthy dear cuz!