Yesterday was crazy busy. I had that "family meeting" at the hospital. Walked into the lobby, let them know my son was being discharged and I was here for the meeting, got my green "Visitor" hand stamp and went up that direct to fourth floor elevator. A social worker, holding a clipboard, greeted me.....then Zack strolled up...wearing the same clothes he wore Sunday...and Friday! He said he washed everything....but the third time I see him and he's in the same clothes..that caught me off guard. He looked a mess....needs a haircut...unshaven again....and overall just sloppy.
The social worker walked us down to a private group room.....we had a 15 minute chat...during which she tried to convince Zack to participate in his TAPS group.....avoid drug use.....obey our rules at home...we are supporting him....and that "five to seven years down the road" we may be tired of "enabling him". I thought about the enabling. I had never really considered that word....but it fits. We are enabling him. We aren't helping him. And it's not five to seven years down the road....it's NOW. We are enabling him now and we are tired of it. And right in front of Zack, I let her know. The group home came up again. Two things Zack absolutely will not discuss....his substance abuse and a group home. He covers his face and shuts down.
Then.... a discharge person took us from that group room into a smaller room where she gave me instructions as far as the meds, new prescriptions to fill...info on follow up doctor appointments....and information on group homes with contacts, NAMI phone numbers, and emergency phone numbers. I haven't even looked at any of it yet...because from there I had to drop Zack off at home - he desperately wanted a smoke.....and then I ran to meet Alaina at "Family Services".
Alaina....the overworked, overtired case manager....wow I couldn't have been more wrong about her. My initial impression - when she left me the phone message last month was so negative....but she is a sweetheart. She cried with me about Zack's disease. We sat down in her office and just started a little casual background conversation. I told her what's been going on at home...and she shared with me what she sees in TAPS. She is a group leader a few hours a week and has been able to get too know Zack a little... as much as anybody really can know him these days. But she was being so kind and complimentary of him and described how she has seen glimpses of his funny personality and clever sense of humor come through unexpectedly. She said he is such a "nice kid" and so polite...and that I did a good job raising him. I saw her eyes watering....the whole situation really is so pathetic.....then mine did. Alaina continued on about how he must be a very smart kid...I know I smiled....because thinking of Zack's old personality always makes me smile ....and I agreed... he used to be. That's why this is such a painful bitter waste. And thinking about the disgrace of that waste, I cried....the grief was just right there...fresh and agonizing...and it consumed me. And she felt it...and cried. She said she's a mom, too, and although she works with these people she cannot imagine living with it. That made me cry more....because living with it is awful...and I was feeling sorry for myself at that point. And so sorry for Zack.
We also talked about the custodianship - that is so serious it's a bit frightening. It's a big deal legal process, attorney needed, go before a judge, Zack would be assigned his own attorney and could fight it....and if we go ahead with the custodianship we would be responsible for everything Zack does. I don't want to bear that weight. That sounds like something that could very easily come back to bite us in the ass. An alternative would be a power of attorney. She was leaning toward that option for us and although I haven't read everything she gave me, I tend to agree. Although she didn't come right out and say it, the power of attorney would be enough control to be able to have him hospitalized against his will if necessary.
The group home came up again. We are going to get him on a waiting list. One home has a three year waiting list...the other choice has a list with three names ahead of his. Alaina told me it could be a year....We have to start now. The local group homes do not take private insurance...that means we need to get the SSI application process going so that with time things will fall into place and we will be ready. She was awesome to even suggest that the TAPS leaders put pressure on Zack to participate in his group, and if after a while he does not, he may be hospitalized again....and with hospitalization comes that direct to group home option. We have that plan in our back pockets. The "Family Services" crew knows the group home is what Zack needs. And what we need.
She then advised me regarding the application for SSI. What a rig-a-ma-roll applying for that is going to be. Alaina told me she has a good success rate of getting it to go through on the first try. I have a thick packet of paperwork to complete...then I call her for another appointment and we'll review it together..then call the social security office to schedule a face to face interview. Once that's done, the paperwork will be sent to the state capital where it be analyzed by a panel of doctors...then they will gather more information from the doctors Zack has seen over the past few years....while we sit tight and wait a few months. Alaina let me know they do not like to give disability to a young person, but with Zack having been hospitalized five times in less than two years that should really clinch it in his favor. He is very sick.
After that visit with Alaina...and she thoughtfully tried to keep the time down to save me money...I left after 45 minutes...but "Family Services" charged me the full $70 and hour anyway.... I had to run to pick up Zack's new prescriptions. The hospital has him on the Saphris...morning and evening, and the Lexapro in the eve, but their doctor also added Wellbutrin in the morning. It is supposed to give him a little "lift". It does seem - not sure if it's my wishful magical thinking - that he is a bit more "up". I haven't really been able to test it much as I was on the go all day yesterday and he was so sick in the middle of the night and is still sleeping now...but he seemed more "with us" in the short time I was around him. I have my hopes up....not too high, but the hope is back.
I ran the girls around to their activities after the pharmacy run...but when I was home, it was a return to the status quo with the shower running in the mid afternoon, the front door opening and closing as he goes in and out for smoke breaks, he was eating everything in sight.....and leaving the kitchen a shambles. Zack is back.
To Be Continued.......
I remember sitting here, alone in WDW in 2009, waiting for the Halloween party parade to begin... My cell rang. It was Zack calling me, asking for me to schedule him a psychiatrist appointment.
I assured him I would as soon as I got home.
We knew he needed help...but it was a relief to hear he WANTED help.
That night he attempted suicide for the first time.
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