pivot

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alfonse1

I know I’ve not written much about Alfonse lately.  I’ve been worried about him.  He’s been quite depressed for a couple of months now.  Finally we had a heart to heart talk in Sedona weekend before last–tears for both of us–addressing this.

I spoke very directly with him about the depression as I see it.  He was sitting for hours on end in the same recliner or laying on his bed, not watching TV or listening to music.  Just laying there, awake, staring in to space.  That’s just part of it.

Thankfully the psychotic symptoms are still gone (thank you Clozaril) but this depression is debilitating in it’s own way.

I convinced him that he really needed to get out of that dysfunctional ACT Team and we needed to do whatever it takes to get him under the full care of Dr. Yasinski.  The one medical professional who I believe has the skills to pull him out of this.

We talked about how he’s worth it, the fee, everything.  He was worried that our Dad would be mad we had to pay for him.  Sigh…

So he’s going in today to advocate for himself with the lame, ridiculously inadequate ACT Team, accompanied by his excellent advocate Manny Walker and he’s going to tell them he’s leaving.  Manny said he needs to say that first.  He needs to tell them he’s going with his own private Dr. and then Manny can help him navigate the rest of the appointment.

Alfonse is now on his third case manager in this program in, what, 3 months?  He’s on his second Psychiatrist.  They “lost” his records, his entire medical history.  They “lost” his signed waivers for release of information (Manny is so good, he requested copies and gave them to me).

By now we’d been promised assistance with finding a volunteer job, getting out in the community with social activities, help with house chores if he needed it (he does) but we’ve gotten a big fat zero in those categories.  Big promises, little delivery.   He’s gotten way worse while in this program and they haven’t noticed.

The one and only service in three months that John has gotten from this ridiculous shell of a program is “med monitoring”.  Meaning one of their staff people randomly comes to his home daily, at a time between 8 and 10 am to watch him put his pills in his mouth.  John wakes up around 6am so he has to wait for this to take his meds and he only feels good during his day after he takes these meds.  This is like torture for him.  Oh and did I mention he doesn’t even need med monitoring?  He’s completely compliant.  They don’t care.  This is the one thing they offer.  And advertise themselves as an “Intensive Program”.

hivpills

Oh and this “med monitoring” visit is supposed to evaluate him too. So in these 5 minute visits they apparently haven’t noticed his house keeping skills, grooming, affect and energy have gone way downhill.  Or they don’t care.  Dr. Yasinski sure did on his last visit.  I just can’t wait to get him on board.  We are so overdue.  Everything in it’s own time I guess.

What they do “intensively” is rake in the monies they get from having my brother in their program and offer the minimum of services they can get away with.  It’s so disappointing.  We are so fortunate we can afford actual care for Alfonse.  Just so fortunate.

But we’re done with them.  Back to the open/closed doors thing.  We are slamming this one shut.  Today is his last day.  He starts with Dr. Yasinski next Tuesday.  Manny will be with him today and this is his territory.  He will help John find out what services he can still receive at that facility while disengaging from the (lackof)ACT Team.  He gets weekly blood draws there, his meds filled and takes daily classes.  Manny will make sure they can’t punish him for taking this step and make the whole facility unavailable to him.  Manny knows the law.

You can see how little I trust them.  I  was thinking of going but I’m not for several reasons.  Not the least of which I really might lose it if I went there.  Seriously.

“You should be ashamed of yourselves” comes to mind.

fingershake

this illustrates both my finger shake then my strut out the door 😉

I’m afraid they will try to manipulate him to stay and he is malleable.  I spoke with Manny about this last night and he said “that’s what I’m there for”.  I made it very clear we’ve made this decision and there’s no going back.  He has his first appt. for Dr. Yasinski to take over next Tuesday and that’s not changing.  It’s way past overdue.

Please think a thought of strength for my dear brother today at 1pm Mountain time.  I think it will be very healthy for him to stand up for himself and set this boundary then ask for what he does need.

I’ll be very proud of him and am taking him out to celebrate this move tonite.

I feel very optimistic about his future and to quote the text I got from Dr. Y this week :

“Looking forward to taking over John’s care and giving you some peace of mind that he is well looked after :)”

Yes, with the smile.  🙂

So onward and upward we go!  I told John I’m going to expect that he is MUCH better by Christmas and he said “me too”.  It’s good to have a goal.

Please send him any love and positive energy you can muster.  I think he will do great.

alfonse

19 thoughts on “pivot

  1. Stacy (IfIMay)

    Lots of love, prayers and good wishes for dear Alphonse. I’m so happy to hear that he will finally get the level of care he fully deserves. And you will get that elusive peace of mind about his care. Good things around the corner for all the “cool” people!

  2. Definitely sending my absolute best thoughts and wishes. I have thought of John frequently in the last little while, wondered how he is doing. Thanks for the update. He is so lucky to have you looking out for him, I know it is a huge responsibility, but you do it so well, with such love. Hugs to you 🙂

  3. NancyB

    Big love & supportive energy sent pronto to you both. Wonderful news that he’s telling them tody that he’s done with their phoney baloney “intensive” program! You had to nearly move heaven & earth just to get those jerks to arrange for the mandatory med monitoring scheduled for AM hours, which anyways, is a useless service to John. So much for their highly touted “individualized” care. New plan sounds very solid and exciting to finally have highly competent and trustworthy medical support. Xmas is a very realistic goal for him to be free of the hugely debilitating depression that’s grip on him is paralyzing. This is wonderful news and so glad you shared this update. Healing vibes to dearest John!

    • Thank you for remembering that detail Nancy. Yes I’ve had to fight for the basics and for the most part, gotten nothing. They promised helping him find a volunteer job, counseling, getting out in social groups, etc. etc. NOTHING. She said “the case manager needs to bring the need back to the team then we staff it and decide if/how to accomplish it”. He’s not even MET his new case manager. And the other ones I think met with him twice between the two of them. THey clearly spend their time “staffing” and “documenting” while not providing actual services. Bringing in funds from the people who are too sick and uncared for to advocate for themselves. I need to find a way to get this shell game out in the public in some kind of loud way…once we’re out of it completely. It’s just horrific!

      • Stacy (IfIMay)

        So glad that nightmare is in your rear view mirror! Bless you for trying so hard to get them to do the right thing. I feel for the patients there that do not have a “Coolady” in their corner. ((hugs!))

  4. Adding my support and special thoughts for Alfonse. Ths is a big moment, and i know he can take charge to make the move happen. I am very proud of all he accomplishes on his own behalf, and wish him a much more positive path with Dr. Y .

    You go, Alfonse! Sending lots of hugs and support to you!

  5. Kiminnm

    Good thoughts for Alphonse ..better days ahead…glad you are able to shut that door and move forward! Many blessings to you and your family!

  6. Hi Kathy –   BIG hugs and kisses to John!  And to you!    Wanted to share with you guys something that helped me get out of a deep depression I fell into around 7 years ago.  I have clinical depression and a few other issues like PTSD (long story) and all of a sudden I just shut out everything pretty much, was also staring into space, not reading, no tv, nothing. Poor hubby was freaking out, didn’t know what to do with me. But then, and this will sound really simplistic but it helped me enormously, I started playing computer games at Pogo.com.  If you’re not familiar with Pogo they have Scrabble, tons of solitaire variations and lots of challenging games to make you think, too many to try to list!  And you can interact with other players or not (I don’t), you earn/accumulate tokens as you play (I’m up to 10 million tokens ytd, lol) and you have an avatar to outfit and have fun with.  I know this probably sounds crazy but Pogo got me out of my fog and interested in finally doing something besides sleep and vegetate. And I started following a few trials again and now politics has me fired up.  But maybe John will find something he enjoys at Pogo or another site?    And I just love your blog, I call it The Adventures of Superwoman!  Because you are!    You two take care, look forward to your next post! ~ ❤   Nancy Deakins  Pueblo, CO   Twitter: @kateetak_  [variation of my mom's name 🙂 ]    

  7. P.S.  I’m sure all went well today for John, it’s a big positive move from that other place… it just sucks having to go through trial & error to find the right fit. I went through something like that trying to find the right meds for depression. Oy! Have a great night! Nancy

  8. Prayers for strength, courage and purpose for John (and you). The depression that he is experiencing is (at least) not so bad that you can’t talk with him. The fact that he has agreed to leave this program, even though its his comfort zone at this point, is a positive thing. I believe that with a practitioner that is caring and knowledgeable, he will show marked improvement in relatively short order. I think about you often and will send prayers up right now.
    Tess

  9. Dear Kathy and John,

    Prayers, Blessings and good thoughts always for both of you.
    I’m so looking toward your goal John. You are so worthy of GOOD medical care.

    Love & Healing Hugs,
    Paula ♥ ♥ ♥

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