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.
5 thoughts on “silver lining”
Sadly, your brother’s needs are supported about as well as my brother’s have been through the years. Thankfully, both seem to have a lot going for themselves to get their needs met, and family who will be there as often as needed! I cannot imagine someone with no resources or support and how they maneuver through all the dance steps without a partner. Do keep us posted. I can’t wait to read your forum article — you have an amazing ability to put into words what so many need to have told.
Sure hope the new plan works out to be a blessing Alfonse deserves. Lynn sounds like she cares a lot about him. So glad you shared, KCL. wishing you a restful day real soon!
Noticed how you said “dance steps” lol
🙂 ….. and with two left feet that trounce on your toes if you aren’t on the ball!
So sorry to hear of these struggles you are going through to help find the right path for John. I wish I had 10% of the outpouring of support you are giving John, from my siblings. You are an Angel!