I want my son out of the house

[JARCA2016]

rosyd,
Clozapine is starting to work and he has been taking it ( 200mg) for more than one month now daily. he is less aggressive & calmer & sleeping better but still talking to himself-not as much.
the weekly blood draw is very hard. he took the blood twice since August 5 and now he is saying he has anxiety and does not want to to get blood draw anymore!.

I do have extra clozapine pills from prior hospitalization last December and I can continue giving it to him but I am afraid to continue without the blood draw.
I will be seeing his doctor next week and I may have to change Clozapine to something else. Too bad, he can get better on higher Clozapine dose but impossible to continue without blood draw.
I am also afraid that he will refuse to take the Invega shot in October 2… so I will have to force him to go to Emergency for Invega Injection.

as you see, it is hard to manage the treatment. my son was suppose to get a blood draw yesterday but he left the home early because he knew I am coming to pickup him for his appointment. This is so frustrating. I thought I figured it out !!

Yes, clozapine requires a weekly blood draw to be able to check neutrophil count (ANC) to be within certain range. Both the doctor & the pharmacy have to be registered on Clozapine Website. The pharmacy has to submit a report with doctor prescription and blood draw result to clozapine REM website and get approved to be able to dispense the medicine to the patient.

It is the only medicine that works for some people. I know a friend in Florida who told me that Clozapine is the only medicine that worked for her son. he has been taking it for 27 years and he has been a lot better.
my Brother is Lebanon has been taking it for 30+ years and he is better. no voice hearing and no hallucination he able to help my sisters with house chores and socialize with some family members.

it may work for your son. it is worth a try!

In terms of monthly Invega Injection, I have been taking my Son to Emergency for the past 4 months when he refuses to take it at Outpatient clinic and he would end up staying several weeks. yes they administer the Injection in both the Emergency and The hospital.
so far he took the injection only once in outpatient on 09/02.
I was hoping that clozapine can help him more but he needs to be on higher dose!.

Well, I will have to keep trying until he is better.

Keep us in your prayers and will keep you in my prayers as well.

[JARCA2016]

Tom,

treat it specifically. It is NOT covered by insurance & NOT inexpensive ($4-5,000 for scan & then follow ups). If they can do imaging why can’t hospitals?? Instead of playing the guessing game.

you have good point in here.
are you referring to Electroconvulsive Therapy (ECT) or something else!

hope your daughter gets better.

[rosyd]

Better safe than sorry. I have a pepper spray under the pillow! I’ve read of others with the baseball bat close by.

[rosyd]

JARCA2016,

Foremost thank you for your reply. How unfortunate and frustrating it is seeing our loved ones improve just to see them down spiraling almost right after; we go through the same experience with our son; Abilify Mantena 400mg has been working fine for him, he was given the oral 10 mg first at the State hospital for about 4 months, the social worker persuaded him to be on the injection to get out sooner and he got 2 injections there but once he was released he got only 2 more and refused them after that.

I’ve seen with my son that it’s hard to upper the dosage once he gets better with the initial dose; this time the last Abilify injection was almost 3 months ago, he’s not doing well either and I’d like to have his injection be administered to him but he leaves early and comes back late at night.

We know that meds work, they might not be the cure but they help, your brother has been on Clozapine for 30+ and your friend’s son for 27 years; my son refuses even a vitamin.
When he was at the State hospital I asked the social worker if he could be put on Clozapine but probably they saw that he was not going to cooperate with the blood draws.

Does your friend’s son and your brother still have to have those blood draw tests every month?

How is it that if your son refuses his injection you can take him to the hospital and he can get it there?
You do what you have to do, and it helps that they administer his shot right there and then.
I really hope that he gets it one way or another.

Couple of times our son has refused the shot and he goes to the hospital by the ambulance, I follow with the injection but they don’t administer it to him there, they say they don’t do it because he’s supposed to get to the outpatient clinic. Frustrating!

I’ll keep you and your son in my prayers, for him to accept his shot and for you to be able to endure this moment in life.

Take care.

[JARCA2016]

rosyd,
yes, I know the anosognosia that comes with this illness. it is a terrible illness.
if you are your son’s guardian, you can take him to the Emergency Are you saying that the Emergency hospital in your area cannot administer the shot?

Maybe you can try to make a promise to treat him like his favorite food like a Steak house or something else that you know he likes so much and see if he can agree to take the shot in an outpatient clinic.
so your son will not take a pill instead of a shot?
does he take any mood stabilizer and/or anti-anxiety medicine?

My brother in Lebanon has not gotten a blood draw for 15+ years because it is not required in Lebanon.
my friend’s son still getting a monthly blood draw since it is required in the US. mt friend’s son takes about 800mg of Clozapine and I think this is really a high dose.

for my Son, the Monthly injection is not enough after 17 days of taking the injection, he starts to go down. This is why I am requesting an additional medicine like Clozapine. but will need to change clozapine to maybe Zyprexa and keep him on Monthly Injection. My son is talking more to himself now.

will see his doctor on Tuesday to change clozapine to another medicine.

he will be getting a shot on October 2. I am praying about it.

How old is your son? I think I heard that this illness gets more manageable with time and they will not have as many relapses. Let us hope that times will reduce the intensity of this illness and they may get better with little medicine.

Keeping you and your family in my prayers.

never give up hope.

Take care.

[JARCA2016]

I had threatened my son with pepper spray in the past when he was really aggressive and he told me that you cannot use this weapon and he will call the police on me. I said to be my guest and call the police. LOL

[rosyd]

JARCA2016,
Since at the 17th day it seems that the monthly injection starts wearing off on your son it might be necessary to have him on the shot twice a month if it’s possible but it’s hard to have it monthly twice a month near impossible.

At this moment things are getting to the point that it’ll be necessary for the involuntary forcing of the injection.
I’m his legal guardian but in our area they don’t administer his injection in the ER; he, himself has called 911 to avoid his injection and he has been taken by the ambulance to the hospital but they don’t administer the shot to him, wouldn’t it be easier to administer it to him since he is there?
I definitely don’t trust him on pills, he doesn’t take them, he pretends very well that he does. He used to take them, not anymore
We have tried to bribe him offering him to pay for a night staying at his favorite hotel but he doesn’t ‘buy it’! He doesn’t want even any vitamin at all.
He’s 49, he’s been many times at the hospital, even 4 times at the State hospital.
This last time his last shot was on June, 3 months ago and this has been another frustrating chain of events due to lack of unforeseen outcomes as you can imagine, ie: he bought a bike he didn’t really like, he wanted one like his friend’s and he was so unhappy that for his bday his dad ordered one just like his friend’s, it was stolen because he didn’t chain it, he borrowed his friend’s bike and instead of returning it right after he left it at one hotel and was stolen also!!! The thing is he lied to his dad, he lied to his friend also and that very same day he knocked down his brother’s mailbox when he was walking to go out. It’s madness!
This illness is sometimes unbearable; I’m grateful if he lets me sleep; he sleeps very little and he spends a lot of time in the bathroom here at home or wherever he is at: the library or the Mall.

I have the pepper spray under my pillow, I don’t tell him about it, if necessary I’ll use it; he’s not afraid of the cops, he’s very disrespectful towards them or any professional, ;everyone is a corrupt this or that for him.

I have to measure my words, and I try not to get into the ‘dance’ with him, he’s very astute.

Our patience is required and sometimes mine goes thin.
There’s hope and miracles happen in God’s time and will.
I have not given up yet.

I keep you and your family in my prayers, the journey is challenging; I pray that your son accepts the injection on October 2.

Take care.

[JARCA2016]

rosyd,
it would be hard to give him 2 shots a months. if I can give 2 shots a month then I would rather put him on clozapine because it is more effective.

I see. your family are going with challenging times. God bless you all. prayers help
where do you live?
if you do involuntary enforcement where would he goes to what Hospital? to state Hospital?
if you take him to county hospital, what would they do?
may be you can call 911 and ask them to take him to Outpatient clinic to get the shot!

does he listens to any of his friends. I hope you can find someone that he listens to and start being compliant.

my son has been also hospitalized many times in various states: between California, Virginia, Texas,
Las Vegas. He has been homeless in California and Las Vegas and Houston,TX.
I probably spent so far at least 10k on travel expenses between to all these places to go and get him and sometimes, I would pay for my brother or other friends to meet at these places to help.
at times, I would not know where he is and would pray so much about it and finally found him after I lost hope of locating him. it happened like twice in California.
he has lost his cell phone numerous time and now, I pay apple like $12 a month to cover lost and Theft…
strange, he was telling me the other day that he does not want a cell phone anymore and would settle for a flip phone? I think the clozapine had an impact on him!
I wish I can continue with Clozapine

he has been to State Hospital here in my State once at the beginning of his illness and he escape from my home and flew to London. then stayed at a terminal for 10 days in Chicago. I think I will write a book about his mental illness events…

Now, I am glad that he is with me and safe.

my son is about 30 years of age and I have a long way to go as you see.
My brother who is in California keeps on telling to move to California because they have lots of resources for mental illness ( more money is being allocated to mental disorder) much more than other states… I may do that in 2 years after my retirement and live in a modest home.

I will miss my friends here but I need support like my Brother and some relatives there.

well, I can go on and on. I have been dealing with my son illness for 8 years now and I know it will continue for another decade minimum or more.

we all need lots prayers and miracles to hold strong through this journey with out loved ones.

I will be keeping you and your family and your son in my prayers.

take care,

[rosyd]

JARCA2016,
Definitely you love your son and have had a lot to deal with in those 8 years, bless your heart, my hat off to you!! I’ve learned about others disappearing from one coast to the other far end but your son takes the prize for getting as far as another country!!! I’m sure that when the time comes to search for our love ones we don’t really count how much we spend, in your case looking for your son and travel expenses for your brother or friends to help you find him and seeing him again it’s worth the bill. I have not gone through that, I however know about my son throwing away the phone so many times because of paranoia, then calling me from various places in winter time to pick him up when the buses have stopped running for the day; many times before, during Winter months and frigid temps, he used to venture to the neighbor State of IA, then he called me to pick him up at a certain place to get there and he had moved from the spot he said he was! so I’m driving for hours back and forth looking for a needle, then I have to call my husband to help me and here we are both looking for him in the middle of the night until we find him; what do we get? Not a thank you but a lot cussing because we didn’t find him fast!!!
This illness is everything and plus because it’s certainly expensive one way or another.
As you, I spend a lot of time praying, once he steps out the door I leave him to God because I can’t be after him; he’s been banned to ride the public transportation bus, he has a bike but he doesn’t use it so he walks a lot and that’s fine, he can burn some energy there; he’s had a car before but he ‘thinks’ he is a mechanical engineer and he has messed up the cars.
I never tried to call 911 and have him to be taken to the outpatient clinic for his shot, since he had been referred to be seen there after being discharged from the hospital so many times and he doesn’t go he is not in their system and he has to go through the process of being registered there. When he does something stupid, like a misdemeanor, he has to be in jail first and then he’d be transferred to the State hospital. Lately the services at the local mental health hospital have been limited so only the ones that are psychotic or in danger to themselves or others are admitted.
Our loved ones need our support but so do we the caregivers, especially family support and I see you are blessed with a brother and friends who understand the challenges of the situation.
I knew that having the shot for your son twice a month was kind of out of the question, I really hope that his doctor finds a good substitute for the clozapine or that he can try to up the dosage without any objection of your son; my son used to have the shot twice a month, I don’t remember what was the medication at that time but that gave us a break for couple of years but as he was doing better he’d stop getting his shot again, he used to last couple of years unmedicated until he was back to the same unwanted symptoms. With time he takes the meds only while he was in the hospital and couple of times not even there.
He blames me for being ‘disabled’, I put him in the hospital and the psychotropic meds messed up his brain; other times he says he doesn’t have a mental problem, we are the problem! Lol! I think we have plenty of company in this regard.

I’d be happy to read the book you’ll write.
I hope we have the strength to endure this test to the end. God knows the end from the beginning and I have you, your son and all the caregivers in my prayers.

Take care.

[rosyd]

I hope you’re doing well. I’m also wondering if your son willingly got his shot that was due yesterday.

I put you and your son in the prayer’s list of the Temple.

Take care.

[JARCA2016]

Hello my Dear Friend Rosyd, I know we are on this shaky road and tolerating everyday challenges with our loved ones and their mental illness. it is not really their fault. we brought them to this world and we must help and endures. we love them and will take care of them until the end of time,
I hope i will long to see some light in my son’s life.
I see how caring you are with your husband and family. keep it this way. your son deserves your attention since he can be totally lost and without his father. God bless all of you.
My son took the shot and the doctor changed the medicine from clozapine to Zyprexa because he is not been compliant with a blood test. no Major improvement, actually he lives similarly to your son. he leaves home like noon and does not come back home until 10 \pm and sometimes Midnight.
I am like you, I have to trust the Lord to protect him when his walking during evening hours.
as I indicated, Clozapine helped him more, he was calmer and less aggressive and I can see that he is getting aggressive with me when I question him about what he does and where he goes. He has been spending like $45 a day and sometimes more on average. he also started to blame me for the way his life turned out to be. he thinks I am the cause because he was admitted involuntarily in many hospitals.
His doctor thinks he needs a second injection like Haldol, this way he will be on 2 monthly shots but I am not sure if he will grees to the 2nd shot.
I have been very busy at work … working sometimes until midnight from home.
I will write to you more next week.
Take care for now and may God strengthen you in caring for your son.

Until later.

[rosyd]

Dear JARCA2016, I hope Zypreza works for him, at least he’s on something. Unfortunately those blood tests are required and not so accepted by many of our loved ones; I watched a little bit of a program from the curesz foundation and the director, Bethany Yeiser, has been on Clozapine for about 16 years herself after a few years of struggle even homeless, one of the doctors offered his testimony and couple of other people assured that their mind is clear, I hope your son can notice the difference and choose Clozapine on his own. Hopefully he doesn’t mind to take the next shot next month.

We don’t give up though it’s really unpleasant at times; we know of them blaming us for their lot, we know it’s not true, that’s how the illness is; and we know they can get aggressive, we’re trying to stay in control of ourselves but when it comes to being safe we also have to do what we must.

Take care friend, may the Lord keep you strong and accomplish the time for your retirement so you can move close to your brothers and friends to help you and your son.

We only have one day at a time and appreciate the small moments of quietness.

I still keep you in my thoughts and prayers.

Until next time

[C11]

My son just added another medicine that.helps.sleep. mirtzapine…with olanzaoine, teintillex, oxcarbazepine…but for first time he remebered and took his medicine dose…he is 26 and got at 16…so this was a first in 10 years, praying he can remember

[Tippy]

my son is also on mirtazapine. He says it does help with his sleep. No way he should have a problem sleeping after drinking energy drinks and sodas all day! I hope that your son will continue taking his meds the way that he is supposed to. It is a daily struggle in my house. Sometimes he does, most times he does not.

[rosyd]

Yay for the seemed little things that are a huge accomplishment for everyone concerned and help to make their lives a little easier. Praise him anyway you can.
My thoughts and prayers are with you, your son and every caregiver experiencing the battle with MI.

Take care.

[rosyd]

How’s it going with your son? Is Ziprexa working for him? What happened with the plan of a second shot, he should have gotten it by now if he agreed to it.

I’ve observed that Abilify works for my son, he was on it for 6 mo doing so well but he refused to continue with it stating that it makes him feel so tired so couple of months have been rough in here; the bathroom seems to be a major trigger and since he sleeps very little he gets up to take a shower and the ‘party’ begins with his lewd yelling believing that his father molests him there; I had to call 911 since he was taking a second shower; I just couldn’t bear his tormenting/unpeaceful mind any longer, he’d been off reality big time.

Take care friend. I have you and your son in my thoughts and prayers.

[Tippy]

So sorry that you are having these episodes. My son has not had a psychotic episode in over a month!! He is still not someone I want to be around as he has these “looks” that make me feel uncomfortable. He also is hardly ever out of his room. So my living arrangement is a bit more tolerable right now. I still would like to find a more permanent solution for him, cuz I need to get him ready for when I am no longer around.
Praying for all of us to find some peace!

[rosyd]

Tippy, I have the same concern for my son: who will look after him? We’re aging fast! Talking about messes, my son leaves the shower doors open and lots of water comes out, the trashcan has water, the floor is wet, his sheets on his bed are not there, couple of pillows in the dumpster outside; my husband walked a little bit across the street and he found a cut piece of the bedsheet, food scattered out in the yard, etc. It seems like he gets up to make all this annoying little messes everywhere and he turns on all the lights even in the garage. I can deal some of it but his feeling of being molested and being harassed by the police is absolutely concerning; since he leaves early and comes back late between 9pm-2am we can breathe, I know when he’s out I just put him in God’s hands but the worry it’s always there.

I’m hanging in there as many of us here, and this is a great forum to visit often when overwhelmed.

*You can check the Lutheran Social Services, I called them once, there’s a waiting list, their goal is to teach them to be independent and work. I’m still considering that possibility. Did your son was approved to receive help yet or his case is still undecided?

Take care. My prayers are with you and all the caregivers on this difficult journey.

[Tippy]

rosyd, We are still waiting to hear from disability, almost 2 years now!! I have had him on COBRA and that is about to run out. I will check with Lutheran Social Services again. I was not able to get anywhere the last time I reached out, so thank you for the suggestion. My son also is a mess. Walking through my house is like walking into a dirty movie theater. My shoes will stick to the floor from all of the stuff he spills! He does not clean up after himself at all. Bathroom yuck!
You take care. My prayers are with us all that are going through this!

[rosyd]

My best wishes for you and your son; we practically were where you are now: having our son under COBRA coverage until it ran out. As of last week I had to call 911 and he stayed there for 4 days let’s say and he agreed somehow to switch to the oral Invega lowest dosage since on the 23 of the current month he had the Abilify injection after 4 months. As of today he even asked me for the pill. This experience is certainly trying and discouraging at times.
I pray that a miracle happens for your son and that not only he gets the right medication but also the assistance he needs to make everyone’s life a little better.

Since you’re in CA don’t they have licenced prescribers for Clozapine? I watched a program from Curesz about Clozapine and it has helped so many people, we’re in IL and there’s no prescribers in this area, we’re not far from IA and I asked a person about that, I’m considering that route myself, the drawback is the blood samples they have to provide every so often when on that medication.

We’re praying for each other.
Hugs.