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My son just left Home after 5 months of Hospital and Rehabiliation


#81

@CAAR2016 your journey with your son is ahead of mine, as my son is hospitalized and on meds for the first time since his diagnosis last July. My son has never been willing to take meds until he was required to last month. My son has no insight and all he wants at this time is to be out of the hospital, and to be away from his familly. He is both angry and certain that we are part of his problem. After oral Paliperidone and the Invega shots to get him to a level, he still has no insight. In fact, he told me on Friday that they gave him another “illegal injection”. His deluded beliefs are fixed and he pulled the court order page for medication from his pocket and read it…and said, “see”, I can choose “involuntarily” to take meds. I know he knew what that word meant prior to this illness…but there was no reasoning with him, so I instead encouraged him to talk with the disability rights advocate. Although the state hospital is not the best place in our case (like your son’s hospital environment), I have refused to discuss a discharge plan that includes him returning home in hopes that it creates a treatment direction that will improve his insight or his ability to be successful upon discharge for them. Ultimately, he will be back with us, and ultimately it might be that we are his plan, but I have decided to listen to the experience in this forum, and with other wise counsel (a family therapist, others that have experienced this here in our state).

Where we live, and because there is only one hospital in the entire state for mental health, they are quick to take advantage of the bed space with the parent that is willing to house their family member, and sometimes that is at the risk of creating a less than desirable clinical outcome, or not pursuing other possibilities. I think it also happens in more population dense areas due to bed availability. In order to get an order for medication with outpatient treatment, we have to petition the court for yet another hearing. The hospital can do that and will likely do that if they discharge him somewhere else.

As much as I would prefer to take my son home from the environment he is in, my son would likely go AWOL./homeless if he was discharged to me for fear of another hospitalization…especially now, as prior to the medication, he could not have executed any plan. The Invega has helped him some in that area. We can only hope that it causes them to consider treatment/medication alternatives if there is no change in the coming weeks related to his insight.

Truly, I do not know the answers…and we each do what we think might be best for our loved ones. What I don’t like is that I feel like my own decision making is like throwing a dart at a dartboard blindfolded.

I wish you the best of outcomes with your son, and all of us a week of peace, answers, and clarity in our decision making.


#82

It’s okay for him to be in the hospital. I’m sorry other patients hit him, but hospital really might be the only place that can medicate without court ordered treatment. Since he is moving out of state from the hospital, there will be no legal treatment order since these are state specific.

Fighting over meds at home til he quits taking them and runs away again, possibly commits another crime someplace where they don’t keep him out of jail… Though it is not completely safe, hospital does not have these risks.


#83

I’m late to the conversation but seraquel really really helped my son. All of the newer meds left him half psychotic, enough that he could fool anyone into thinking he wasn’t delusional, but he was. The seraquel has really made the delusions not so intense. He still has thoughts but he for now can ignore them. We just had his dosage raised. But he’s doing great on it.


#84

Glad to hear this. Hopefully it will work for my son Also.
he has been wanted also to try Ability ( apipiprazole) but his insurance would not cover. I am going to check and change his insurance.


#85

you are right. but the hospital told me that they cannot keep him for ever. They had to get a court order for him to take his meds 6 weeks ago. He promise that he will take Seroquel or Abilify. will see how it goes.


#86

jmarie1067, I agree with you. I feel he needs to me close to me in my State. being far in another state, make it harder for me to visit and ask my lawyer for help. the cost is higher if I want to seek guardianship while he is in another state.

I am going to try to get guardianship once he is in my State if he still have no insight in taking his meds. he promised that he will see a psychiatric once he gets here to change his medicine to Seroquel and he also wanted to use ABILIFY before he left to California last September.

I wish I can keep him in the hospital for another month but his team told me that they cannot keep him longer than what the doctor recommends.
Hoping things will be at peace at home and that he will follows doctor’s order.


#87

Slw, yes, I think you have a good point on this statement:
it is it is critical to have them see someone else other than you very regularly who will reinforce med compliance - it doesn’t matter if it’s peer support, a case manager, a therapist or a psychiatrist. Just someone else who will continue to talk to them about all the reasons they should take their meds. I’m still working on getting that set up for my son.

my Roommate is a physiologist and he said that he will help to enforce the meds at home and of course seeing his pdoc and being involved with group therapist very important.


#88

Our son is still in that fine balance of the hospital treatment team evaluating the risk in his discharge. Him discharging home creates less concern for them than him discharging into the community. It does for us as well…but we are leaning toward a community discharge (a couple of hours away) to see if he can be independent. We believe he is in that stage of a possible few failures on trying independence, having little insight, and being non-compliant…and the failures might need to be a part of any recovery for him. We really don’t know, but our home isn’t the best place to explore any kind of recovery other than staying safe. We are in a valley of 100 people, 70 miles from even a grocery store, isolation, no work opportunities that would be a good start for him, no case management/services…etc…and although he has expressed an interest in coming home, he only wants to come home because he views that as being the quickest possible discharge. His ultimate desire for himself is independence, and right now, that means coming home and doing whatever he chooses. At this time, he would not meet discharge plan objectives for us or the community programs (of which there is a long wait list for entry). We would be able to keep him safe, just like the hospital…but that is not the objective.

I am leaning to a community program, and having us still very involved to insure oversight in the decision making with guardianship. We may ultimately have to be the discharge because of the wait time to get in any program, but we are going to have strong stipulations in any way we might house him while we wait for such things. Is that realistic?

Many of you in the forum are seasoned in these steps, but I am under the impression…or at least it appears that the discharge plan obligations of whatever facility our loved ones are being discharged from allows more of an opportunity to secure services vs. trying to establish them otherwise independently for our loved ones? Whether it is an AOT/CTO, or proximity to case management, SSI application/completion to assist with housing, etc. It appears to me that there is some urgency in setting these things in place, or more attention spent by a social worker…especially if a discharge home is being refused, or is not readily available? Am I wrong about that?


#89

@CAAR2016, you are doing so much for your son. I hope the best for you both.


#90

Hereandhere, do I have a choice? I am afraid of what will happen next. he called me so many times today so I can come early to pick him up. I had to refuse his calls because he would not stop.
he is complaining about leg jiggling and headache and that he will be OK once he leaves the Hospital.
Now, I am getting ready for another hard period in my life.


#91

Dear CAAR2016,

Do you have any choices you can make? We’re all in different situations. Does your son have any remotely okay alternatives to living with you? I know how rare these alternatives are. I understand that you do not want your son to be homeless and far away again and that there may be no other choice.

The nonstop calls are a sign that your son is not yet stable. I really hope they can keep him in the hospital long enough for him to feel better and to treat you well.


#92

yes, you are correct. I took him out of the hospital because he was hit several times by other patient.s some patients there in Big Spring Texas have a crime background and I did not want him to be in that environment.
he is now with me and do not want to take the meds. we saw a pdoc last week to get prescription for Mood stabilizer and Seroquel and he told him that he does not need the meds and that he is not sick and he wants to get a job.
He keeps telling me that he is waiting for the meds to fade away from his body and he will ready to start applying for jobs. he agreed to go to group Therapy.
he thinks the medicine is causing him to provoke others and also causing breast enlargement and headache.
I am afraid. I have been keeping myself busy so we do not have too much communication.
he is staying at home everyday since we left the hospital March 16. he walks with me every day for 30 minutes and he not arguing except when I ask him to take his meds.

his shot is due Apri12 but he is refusing to take it. he just does not want to take meds.
He keeps on talking that Paliperidone and Invega Sustena side effects: breast enlargment and headache.

I guess, I get myself in another difficult situation and Hope things will not get worse.


#93

Dear @CAAR2016, You are doing your best in an extremely difficult situation brought about by a no-fault health condition. Neither you nor your son caused his mental illness.

I hope the best for you both and that things improve for your family.


#94

My son last had an Invega shot 234mg in March 16. he does not want the shot anymore. he thinks it will cause breast enlargment and sexual Impotence. he started taking chlorpromazine 300mg ( 100mg pill 3 times daily) and Dapokat 500mg because I threatened to commit to hospital if he does not take meds.
he has been experiencing severe headache. I took to ER twice and ER doctor gave him Benedryl and
and Ivy and 10mg of compazine. he felt good for one hour then his headache came back. while he was at ER, I told the nurse secretly what is going on with him because he would deny his condition and told the ER doctor he just had a headache. they discharged him and requested him to follow up with his Pdoc.
later, I forced him to be evaluated in the same hospital for his mental condition. they only put him on hold for 2 days and discharging him saying that he is taking his medicine and he is not psychotic,so they cannot keep him.
the nurse said that the psychosis meds does not cause headache. he has eating well and drinking well. so what is the cause of Headache?

He found a way to leave to California thinking that his headache will go away in California. of course, it did not go away!
this is irrational thinking. He is now with a friend in Calif and of course, he is not taking his medicine now.

he has been calling and told me he left due to severe headache and planning to take the greyhound again to come back home and he thinks the headache will go away after 3 days trip with greyhound.

I threaten that I would notify the police and I will try to commit him back to hospital where ever he is if he takes the greyhound. I told him to fly back. I do not want him to be taking 3 days trip. I already had a miserable experience with Greyhound back in January 2016 where is ended up in Texas & was hospitalized for 7 weeks.

What I think that his headache is coming from medicine withdrawal symptoms.
he was taking an oral pill of 6mg Paliperidone and an invega Shot of 234mg every 4 weeks while. after the hospital in Texas were informed of his headache, they stopped his Paliperdone oral pill and discharged him with instructions to take the shot monthly and Depokat 500mg daily. but he did not want to continue with Invega Shot and start taking another medicine chlorpromazine/Thorazine 300mg for one week and now it is not taking anything since he left one week ago.
I suspect that medicine withdrawal is causing the headache.

Does anyone experience headaches side effects with a family member who is taking Paliperdone or Inveha Sustena Shot ?


#95

My son experienced headaches as somatic symptoms. They were part of his psychosis. Not sure if this is what is going on with your son, but I had my son in the ER 3-4 times with headaches, and one time, he ultimately ended up having a MRI.

My son is on the Invega shots as well, but he hasn’t had the headaches since he opted to take the medication.


#96

My son took himself to the ER after suffering from a headache that he said lasted for 10 hours and was extremely severe. He does’t take psych meds, it was part of his psychosis. Sometimes he wears bandages around body parts that he says are in severe pain. Not unusual to see him with some sort of support bandage around an elbow and another around a knee. I think my really feels pain, but I don’t think the pain is real.


#97

[quote=“hope, post:96, topic:2696”]
after suffering from a headache that he said lasted for 10 hours and was
[/quote

Hope, is he headache done now? and how was the headache controlled?
so you are thinking the psychosis is making feel that he is in pain then. did you confirm this with Pdoc?


#98

do you mean he is on Invega shots now and since he is taking the shots, his headache is better.


#99

jmarie1067, how long your son been taking Invega shots?


#100

Hope, how is your son doing without psych meds? is he functional?