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”.
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.
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.