So glad he slept, mine was awake all night. He might be asleep now from what I can tell.
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I can hear him in the kitchen munching on chips, so maybe weāve turned a corner. Itāll be the first thing heās eaten since about 5 PM on Saturday.
They are a new flavor of Tostitos with Salsa Verde - I tried them last night & they were really, really good - so maybe he just couldnāt help himself.
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Mine has returned from his therapy appointment. Quiet outside so far, weāll see how the day goes. Has yours turned the corner?
I donāt think so - heās pacing, smoking and now & then heāll eat a chip.
Heās associated eating the one chip with going to sleep last night I think.
He said take him to the hospital, then he said he didnāt want to go, heād go to sleep - but he canāt remember what he says one minute to the next.
He is quiet, and calm, and moving very slow, so weāll just have to see how long it takes. He is taking his oral meds without complaint, not that theyāre going to do all that much. But, at least heās not angry or violent or doing anything else that will get the police called on him or put him in physical danger at the moment.
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What if ā¦ itās just the depot shot that does nothing for him?
The give him pills in the hospital, he does great, he gets out - they take the pills away, he does worse.
How do they know the depot works for everyone?
Itās exactly like heās gone off his meds, but heās fully compliant.
Not that i know anything about working the meds, so excuse it if its a dumb question, why do they stabilize him then change his meds?
My opinion - theyāre idiots & want to treat everyone the same way.
Their reason - they want him on the least amount of meds possible so that he is willing to take the meds & doesnāt experience any bad side effects that would make him want to stop.
(EDIT: Their other reason is that meds should only made the condition more bearable so they can keep it at low dosages & therapy should teach them how to manage their illness. Iām all for that, but you canāt do that with someone who is so sick theyāre a little paranoid about the whole program. I am guessing they think heāll get so sick that heāll want any kind of help he can get, but they donāt know how stubborn my son can be - no matter how I try to explain it. I also think they believe Iām a big part of the problem, and maybe I am.)(
Doesnāt matter now - heās back to refusing his meds & saying he doesnāt need them. Of course, that could change in another hour. Itāll be a countdown to the hospital now for sure. I counted it up & heās slept about 8 hours in the past 5 days, maybe more.
And, tomorrow makes the midpoint of the 28 days his shot is supposed to last. So, they can pretty much take their next shot & shove it. I am absolutely positive there are people walking around totally unmedicated that are doing better than him.
Weāve been with this place less than 2 years. At first just for therapy, then after his first hospitalization we moved his psychiatric visits there. We needed to move anyway because he was 27 and still seeing his pediatric psychiatrist who hung in with him since he was 17 - but as he saw him get more symptomatic suddenly, he felt heād get better services from someone who saw adults because he only keeps up with meds approved for children and he said there were lot so of new meds out there.
So, we made the switch about 8 months ago. Then, about 3 months ago, he got into this intensive program where the doctor is supposed to be very good & very aggressive with treatment.
Itās all county run & weāre used to private care. There are some things I like about it. We donāt have to wait more than a few minutes for appointments to start, they staff is very, very nice, the individual appointments are longer & more in depth & I can email in my opinions. Plus, they have a nurse right there to do the shots.
What I donāt like is that they make what I consider big changes in medication then the doctor wonāt see him again for a month. The case manager/therapist that he refuses to work with is supposed to fill in. So, right now, we have a gap. I can call, but right now no one has called me back. And, now that heās refusing meds, it doesnāt really matter anyway.
Theyāre so worried about overmedicating him that heās hit the revolving door at the hospital even when he is compliant. Itās just crazy & Iāve about had it.
The thing that keeps me hanging in is that he would get an amazing set of services if he would get well enough to take advantage of them. Services that would mean he would be OK & taken care of if anything happened to me, and I have no backup. No family I could depend on or trust, no friends like that, and it would go very badly if his dad tried to do it. Not that his dad doesnāt care - theyāre just like oil & water.
And, I look at him this way, and Iāve always been afraid that he would just walk off one day & be one of those tragic homeless people you see. Now, as Iām getting older, Iām afraid that no matter how much money I could leave him, he would still be alone - and no matter how much money there is to provide for his care, you canāt pay people to be kind to him. So, he needs this program to work for him. I need it too.
But, we also need him to be on the right medications, and to get enough of them for him to start.
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Thanks for taking the time, now I feel like I have some understanding. I can see why you want it to work with the county services, that would be a tremendous relief to your worries about his future. Its so frustrating that they stabilize him and then withdraw the meds that are working. If heās not one of the folks that can get by with minimal meds and therapy - why do they keep trying? Why canāt he have more meds and therapy?
A mid twenties woman that teaches peer to peer here is medicated to the gills - she needs a lot of meds to be able to have a day to day life and routine. At first she was pretty much laid low by the amount of meds, but she adjusted. Seems like everyoneās med needs would have to be addressed individually. You realistically canāt put everyone on the low med and therapy plan. I realize, having seen this young woman, that success with meds doesnāt always mean life back to how it was before scz. Her abilities are pretty limited, I have come to understand that for many of our children, they wonāt ever be the same as before, even if they have some relief in their 50ās.
Mine might be asleep, I will know for sure in a little while when I head outside. I havenāt heard any angry yelling since Monday night.
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Sounds very similar to my son. Even with everything he is taking he will still not sleep at times. The only thing that helps is Melatonin 15mg. That is the one thing that I can usually depend on. There are times that even that wonāt work esp. if paranoia enters the picture.
lol - I just commented on your thread.
For everyone else, my son went into the hospital tonight. I just got home from a 6-hour admission.
He took about a 2 hour nap, then after he was up for a few hours, he got really anxious & wanted me to hold his hand. He said he was just scared - of everything. So, I asked if he wanted to go to the hospital where he could be safe, and he said yes, so off we went.
They still TDOād him because he wasnāt capable of consenting & started talking about going home.
Iām anxious to find out what the new game plan will be, if there is one. He is so anti-med now that he wouldnāt even take the Ativan they offered him in the ER, and he was so anxious they had to take him through medical first because his heart rate was at a dangerous level. They didnāt mention his blood pressure, but I saw what the machine said - it was not dangerously high, but very high for him.
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That is heartbreaking that he was so scared. Iām glad that he was willing to go, at some level even though he doesnāt have insight he knows he needs help. Poor guy,
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P.S. The sad emoji looks more surprised than sad lol
Well, he had been telling me for 2 days that he was dying. No amount of reassurance would help.
And, he must have asked me 10 times during the intake process if he was dead, and was I sure we had health insurance.
If it was anyone else, Iād have joked about no need to worry about the bills AFTER youāre dead.
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lol. Gotta keep your sense of humor. Sounds so familiar. This illness has so many twists and turns.
Keep us posted? So worrisome that he was so horribly frightened.
I visited with him tonight for a couple of hours.
And, by visiting, I mean it was mostly holding his hand and doing the circuit around the ward.
Right now, heās like a shell of himself - I think heās so anxious, so fearful & so sleep deprived that heās running on autopilot & his self has retreated far, farm inside to a safe place.
He did know who I am, he was with it enough to complain about no cigarettes, but that was about it.
Itās sad that after probably $80K o $100K in medical treatment according to the insurance claims, heās not really any better than when he first went inpatient exactly 10 months ago. Heās had good periods, but he keeps coming back to this low spot.
Hang in there. Youāll find the right med and heāll be much more like his old self.
~~ hugs ~~
Iām glad you were able to see him. Any word on what their plan is?
They added back the Risperdal which is good, but thatās about it so far.
It sounded like they put him in the general unit to get him a bed in the middle of the night, then late yesterday afternoon, they moved him to the same unit he was on before which is mostly for people with psychosis as opposed to being suicidal or having drug/alcohol problems.
They said it was less stimulating, which Iām sure it is. He was pretty upset about the move & called me in the middle of it - not that he wanted to stay where he was but that he just didnāt understand what was going on and it scared him, just like everything scared him.
He did sign the release while I was there. And, he signed his right name. They had instructions that he could pretty much have anything he would take for sleep from trazadone to haldon, but I donāt know if he took anything after I left. They did say he took the Risperdal earlier.
Today, Iāll start finding out how I manage to talk to the doctor in there. Heās got the same one he had before so thatās good too.
I havenāt heard a peep out of his outpatient team, but it is a holiday week so maybe everyone I usually talk to is on vacation or something. I am a little upset that they said 1. now that we know what worked in the hospital we know what to do if he gets worse AND 2. if anything isnāt working out, just call us - and Iāve gotten nothing, other than the case manager said heād have to see him in person to help him get in the hospital easier/faster. I appreciated the offer, but my son is still paranoid about him & I donāt want him associating a TDO with them.
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Glad they added the Risperdal back in to his protocol.
Hopefully, the team will work more with your input on his meds going forward. Medical personnel often throw out those barricades on parents automatically. Knowing when to get around them and how to get around them is the tricky part.
If they are so sure that our input is part of the problem, they could take our kids home with them and see how well they handle things. They would probably be texting for advice within hours. How is a poor attitude toward parent participation different than blaming us for the illness? In the old days parents were blamed for not bonding with their child and causing autism. Archaic. One of the other things the WHO said was that we caregivers needed to be recognized as such and included in the treatment planning.
Years ago with my other sonās kidney illness, I was trying to solve insurance billing issues that he asked me to solveā¦ A social worker I asked for help, told me that my son was āfineā and I needed to let him handle his own business. I donāt get angry often, but that made me angry. I told her that āmy son is not fine, he looks like death warmed overā. THAT, she heard. She consulted with the doctor who had my son called in. The levels in his blood from one of his meds were at deadly levels. They reduced the med and he began to flourish.
I still had to solve the billing stuff, it was a big mess.
Since then, the social worker has listened to me and I have listened to her. She helped tremendously when we realized Jeb was suffering from scz.
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