My son..five years on


#1

My son aged 20 is 4 months into his 3rd hospitalisation…he is now being detained in a medium secure unit for assessment; he assaulted a psychiatrist ( for the second time). He is very paranoid and believes that his family and others are conspiring to kill him. He was managing to use drugs even when in hospital,mainly weed but also methedrone and mdma. They are changing his medication from risperidone (injectable) to oral olanzapine and aripriprazole ( not sure of spelling). He hasn’t been able to get hold of street drugs since March but there is little improvement…he told me that he wishes they would hurry up and kill him. He doesn’t believe I’m his mother and has said he needs not see me for a while. I have always been the one he trusts no matter what. I know it’s the illness talking but I feel him slipping further and further away. It’s heartbreaking. I know there’s no quick fix but 5 fxxxing years and getting worse.


#2

If it is any consolation, I was very sick and now am very well. My memory is clouded, but it does seem to me that for awhile my Mother was not my Mother.

Actually, I have gotten so well that I have tried to help others. Therefore, I know first hand what it feels like to be so powerless in the face of someone else’s disease.

Jayster


#3

Thanks jayster I’m trying hard to stay positive and I know it’s the schizophrenia talking, not him. I’ve been reading the forums for a long time and seeing how you can recover helps a lot I just want him to have some respite from the paranoia. I can’t imagine how draining it is to not trust anyone or to be constantly fearing for your life. He’s only been this bad before when he’s been taking street drugs and I was hoping some time away from them would help. tonight he made an accusation that a male care worker has been making sexual advances towards him so now he’s not allowed to be alone with any staff member. He’s getting more agitated by the day and not sleeping in case ‘they’ get him. I just want him to have some peace of mind. Don’t know how he or anyone with this condition finds the strength to keep fighting. Thank you for replying.


#4

I am so sorry. I know how you are feeling. I`m wondering what kind of meds they are giving him. Usually when my son was in the hospital, he would sleep for hours on end. Are they giving him anything to help relax him?
Hang tough–from here, he has to get better…


#5

Telling a parent there’s hope seems so futile sometimes. But I’ve survived 35 years with this disease. And my case was SEVERE for a couple of years, 1980-81. And my relapse while I was in my active crack addiction 8 years later was pretty unbearable. But I survived and I had some very good productive years, working, going to community college, attending 5 or 6 AA, CA or NA meetings a week, socializing with my friend, socializing with my family and their spouses and friends. When I lived in the Board & Care home from 1990-95 I got myself up at 6:30 am, 5 days a week, walked to the bus stop, took two buses for 1 1/2 hours to my job unloading trucks at Sears and after work I caught two buses home. Two days a week I took the bus across town to take two classes at a time at college. From 1986 to 1990 I smoked crack heavily but I got clean in 1990.
That’s just the tip of the iceberg. I did LOTS of other stuff.
In 1981 I was hospitalized for 8 months and suffered pretty badly. I had no idea I would get better. I just kind of went with the flow. I wish you and your son good luck. From what I’ve read often it is actually common for people with schizophrenia to show some improvement.


#6

Meds are olanzapine and ariprirazole and clonazepam…he likes the meds ending in ‘pam’ :slight_smile: so I think they are limiting those as much as possible. Some days I think I get a glimpse of him then he’s gone again. This forum has helped me a lot so thank you all for sharing. I keep telling him to take it a day at a time, think I need to take my own advice. Thanks again.


#7

Thanks 77nick77…sometimes the only hope I’ve had is from reading these forums and especially reading the posts of those who are living with this illness every day. I have so much respect for you all. I don’t think any of you realise how much it helps family and friends and keeps us going through the darkest times.


#8

During my son’s last hospitalization he thought I was trying to kill him… I actually had a nurse question me why he thought that. My son is 20 and has had 6 hospitalization in just over 3 years and has addiction issues. He also likes meds that end with ‘pam’. I took steps to get him off of clonazepam. I find these types of meds just tempt him to want more and more of them until he is practically comatose. The hospital got to see this with Valium/Diazepam. They had to wean him off it as he could hardly talk but still wanted more. I have seen my son on these types of meds and off them and he does much better off them. We recently tried him with Adderall for ADHD and that triggered psychosis. My son can’t take stimulants. My theory is his brain already produces to much dopamine so drugs that are agonists or increase dopamine trigger psychosis for him.

Aripiprazole/Abilify can sometimes makes psychosis worse. It’s a partial dopamine agonist.
http://whatmeds.stanford.edu/medications/abilify.html
I know my son didn’t like it and both myself and his pdoc at the time didn’t try to stop him from going off it. I know my son has been on Olanzapine in the past but he wasn’t living with me at the time.

I think my son may also have tried mdma while inpatient once. A girl gave it to him…

I know it can take time for meds to work however it does not sound like what he is currently taking is helping him. May in fact be making his paranoia worse. Has your son ever been tried on Risperdal or Invega? My son has been on these in the past but with drug use they didn’t work well. Now that he is relatively clean (occasional use) the Invega seems to be making a difference.

My son’s last full break was in September. Thought he was a vampire etc. Was inpatient for 3 weeks. In June-July he relapsed due to Adderall. Managed to keep him out of hospital. Less the 3 weeks ago we switched him from Risperdal to Invega and he is now stable again and getting better.

I know it’s a roller-coaster ride and sometimes it feels like all you can do is hold on. We are fighting a sometimes broken system, doctors who are trying drugs they ‘hope’ will work without intimate knowledge of our children, the disease itself which comes with anosognosia or lack of insight and at times our children themselves due to symptoms.

Don’t give up. The right medications can make a big difference. Have hope that it can and will happen. Don’t be afraid to tell the doctors that you don’t think a medication is working or seems to be making him worse. While inpatient that is the best time to do a med change as they can monitor him on higher doses instead of slowly titrating up or down.


#9

When I was hospitalized I did not want anyone to visit me until I was well enough to have the energy for visits. It took about two months in hospital before my mom got to visit me. She was the one getting me out of there too. I was in hospital for 6 months straight. Then I lived with my mom for 5 months before I was ready to move back home to husband and kids. At that time I had been away from home more than a year. I ran away from home because I thought I’d kill my son or that he would kill me in my sleep.

It takes time to get back on track. I believe it will get better now that he’s off drugs. The longer he is off drugs and on medication the better he will do.

Also, I have very little memories from my time in hospital. I don’t remember ppl I met and talked to, like social workers. It’s like a whole year is missing. Psychosis can do that.


#10

Hi BarbieF

Thanks for reply, I have read a lot of your posts on this forum and have looked at your blog :). I recognise a lot of your sons behaviour/traits in mine; particularly the oppositional stuff…my son has been in and out of hospital for over 2 years now. When he was taking drugs this time around he was in a local community setting and able to have a lot of leave, I often had to take him back to the ward barely able to stand, this ultimately led to the assault on the psychiatrist (he had his leave stopped for using). He has never liked rules or authority. This time around they decided that he was too high risk to remain in a community setting hence the medium secure unit. He was having resperidone injection fortnightly whilst in the community (due to non-compliance) and fought to have the meds changed because he didn’t feel they were having any impact, personally I think this was more to do with the enforcement of the meds than the affect. He has informed staff that they are not to discuss any aspect of his care with us his family and they are adhering to this, because he is deemed to have capacity. I know my son and I can see the agitation rising and i’m really worried he will do something that can’t be undone. When well and off drugs he is lovely,bright and caring, the sort of person who brings home 3 legged dogs :). I am reading everything I can and regularly look on this forum. Mainly I want him to have some peace. He told me once that the street drugs are the only thing that stops the madness even if only for a while. I wish I could take his pain and fear away from him. I wish he would stop being so oppositional. I wish he was home. I wish a lot of things but mainly I wish him some peace. I have been advised by professionals that I need to back off and let them do their jobs, easier said than done. Like you and your son we were not able to live together for a long time (bad divorce) and the regrets I have are huge, we always maintained a close relationship but I know being separated from me had a massive impact on him. Like I keep saying this forum and being able to read about other peoples experiences has helped me in my darkest hour (usually about 2 in the morning :slight_smile: ). I will keep reading and try to keep the faith. Thanks so much.


#11

@Comatose…I know it drains him physically an mentally when he sees me or his family and I will back off if it makes it easier for him. Part of me hopes he doesn’t remember any of this when he well again, he is in so much pain. Like I’ve said the respect I have for all of you who are living with this every day is immense…I’m not sure I could do it. Take care and thanks.


#12

This jumped out at me… because that is such sneaky brained thinking for me… I remember whole heartedly believing that street drugs was the ONLY way because it took so long for the AP’s to kick in… plus they kick in more subtly then a heavy hit of MDMA.

It took me AGES to get off that circus ride. When I finally did… I’m not going back. I’m sorry you have to be pulled through it to. It’s not easy on anyone. Your doing all you can do… which is hanging in there.

I hope he makes that drugs = hospital connection soon. I wish it would have happened sooner for me. I’m 29 now, I feel like I’m just NOW getting my act together.

Good luck and I’m rooting for you all.


#13

You may find this link of interest.

http://forum.schizophrenia.com/t/oppositional-defiant-disorder-odd-and-ad-hd/8922?u=barbiebf

I’m currently struggling somewhat with backing off. My son wants to move out on his own yet he doesn’t realize how much he depends on me for everything. His own defiance gets in the way of seeing that I’m the one fighting for him the most. I tell myself ‘baby steps momma’ :smiley: Let go of the past we all do the best that we can with what we have.


#14

Hi… Your son sounds so ill. And confused. Very confused. Can anyone try talking to him? I don’t know if I would have listened. But no one ever really tried talking to me. Every time I was in psychosis, no one would say “Hey, remember, you have schizophrenia… these things aren’t real. It’s symptoms of an illness, not real.” People yelled at me. Fought with me. No one tried rationalizing and I wish they had. I don’t know if it will work but try. And maybe he needs to be in a home for a while until he learns the value in medicine? My mom said if I didn’t take my meds, she was going to put me in a home. It hurt and it hurts that she said it today. But I took them. Take him down to a home and show him what it’s like and explain that he needs to be med compliant for his own sake.

He’s getting angry because no one is listening to him. He’s severely confused. That’s the worst thing to be. But he think he’s right and everyone else is against him.

Medicine saved my life. It took 2 straight months. My mom came over my apartment every single day, twice a day, and made me take my meds in front of her. Every time I quit my meds, she called the cops and had me taken to the hospital. And then she said I would go to a home if I didn’t take them. She was so forceful and consistent that I finally did become compliant.

Be strong. You are doing well. You are doing so well. :slight_smile: <3


#15

I see the confusion and the fear, he’s very ill and very scared. I listen to him and I try my hardest to rationalise his thoughts and feelings. I strongly believe that he has and is suffering trauma from his beliefs and paranoia. He believes it so it’s real for him. I’ll always be there and I’m happy you’re doing so well. It gives me hope for me and mine. Thank you for your support and keep well.


#16

There was always ‘something’ wrong but no one could ever quite figure it. When you start looking at this it just seems so obvious.
And…just when I think I’ve let go of the past it comes back and bites me on the bum :).


#17

So much of what I’ve seen on here is familiar to me and mirrors mine and my family experiences…I know we’re not alone with the struggle and if my son is able to come through this and live as well as you and others on here do I will be extremely happy. Thanks for the support it is much appreciated.


#18

Don’t rush it. Healing from a psychotic episode takes time. I was somewhat back in business two years later. Back to work. Part time, but still. I had something meaningful to do during the week. Now it is 4 years later. I work full time. But I still hear voices and struggle with my sleep…or rather lack of it.

Meds make all the differance! I’ve tried to quit, almost ended up in ER again. Meds are my life line.


#19

Medicine is the only way I gained insight. They can show on a catscan the areas of the brain that light up when people have insight. Only 50% have insight. It’s part of his symptoms. So try to have understanding.

And yes, those delusions and hallucinations can be so traumatic for him. I would try to get him on meds, consistent, for 2 months, but be sure it’s not one that causes weight gain.


#20

Does it ever. It takes me so long to get back on track… and to get that confusion and guilt out of my head and figure everything out again. I always dread asking my family how bad it got.

My family is supportive and as long as I was trying to get better, they would be understanding… but I still hate asking them anyway.