Family and Caregiver Schizophrenia Discussion Forum

It's killing me to watch my child suffer like this!


#1

Hi everyone, I’m new to this site. My son is 26, and has been suffering with mental illness for many many years. 5 yrs ago, my son survived an extremely violent suicide attempt, he leapt in front of a car, was hit at 45mph, and was left with traumatic brain injury in addition to what we then thought was bipolar disorder.

The past 5 yrs have been fraught with many many psychiatric hospitalizations, and much pain and suffering by not only my dear son, but by the entire family. We thought in the past year things were finally beginning to settle down, my son had housing in a disabled mentally ill apartment complex, was on disability and received food stamps. He had not been able to work at a ‘real’ job for several years, but has always tried to do something such as mowing lawns, yard work, etc…

2 months ago he was picked up by the police completely psychotic, and hospitalized. Apparently he had abused adderall and had become psychotic. He has used pot, and many many other drugs, including heroin over the last 5 yrs. he was released from hospital after only 5 days, and without an antipsychotic, because according to them, his psychosis was caused by the adderall.

He has not improved at all. He is still delusional, and terribly paranoid. His private doc has tried to get him on an antipsychotic, Abilify, but he will not take it consistently, and is now stopping it altogether, as he blames it for making him psychotic. Since I can not talk to the doc, I do not know what all is going on, but my son tells me she ‘thinks’ he is schizophrenic. Everything fits, and schizophrenia has been the DX that I have suspected for many years.

He holds his head, and screams in agony. He can not sleep. He believes he is receiving messages thru his phone telling him that danger lurks everywhere. He now believes that all the people in his apt complex hate him, and are out to get him. (This is so sad, because they actually love him so much!) he believes the police are going to kill him. He believes drug dealers are everywhere and are going to kill him. He believes he lives in an alternate universe. He will not join our family if all of us are under one roof, because he believes something terrible will happen if we are all under one roof at the same time. He believes he knows everything, all the secrets of the universe. He sometimes speaks in word salad.

He has given up his EBT card, because he believes the govt uses it to track his movements. He wants to leave his apt and travel.

We have always been close, and I have been the only one he has ever completely confided in, but now he has decided he hates me, and I am the cause of all of his problems.

Much more to say, but this is all I have time for today.

My heart is so very broken that I can not help him.


#2

You are proving the ultimate service to him. You are there for him and he feels like he can confide in you. My Mom has always been there for me.

I know it’s hard but I think (based on what you have said) that he doesn’t really hate you. It’s just the illness. Lots of times we seem to turn on the people we love most and try to distance ourselves as fast as we can. Romantic partners (mostly girlfriends and boyfriends who are very committed) come on here seeking help for their loved one and that’s one we see a lot. Especially if they smoke weed. It just makes us go further down the rabbit hole for whatever reason. Care gives are saints it seems like sometimes. I’m doing very well at the moment and I have a boyfriend. We are very attached to each other but every once in a while my brain will start up with nonsense like “he’s cheating on you. He doesn’t really love you. He just wants you to support him.” ect.

Some medications are available in the form of injections once monthly so if he is really bad about taking his meds that might be an option. Or he might not be taking them because they aren’t working. I used to be on one that wasn’t working and I forgot to take it all the time (not “forgot” I actually never could remember) because I was so out of my head. Have you seen him with other anti psychotics or just the same ones? I had a bad doctor once who refused to change my meds when they stopped working and I just went out of my head. I didn’t come back till I got on some other stuff. I’m not saying you have a bad doctor. I’m just saying that’s something that has happened to me.


#3

Very sorry to hear about the painful situation your family is going through. I think most of us here have similar stories so you’ll get a lot of empathy here.

Your doctor may not talk to you - but many doctors will listen to you. We have a section on the site about this and how to work with the confidentiality rules in the west that prevent you from knowing what is going on with your son (very frustrating).

Here is that information:

http://schizophrenia.com/family/FAQgen.htm#law

Also - with regards to his medication - it sounds that he absolutely needs to get on something that helps him. There are 1 and 3 month injectable drugs that would eliminate the problem of him forgetting to take his medication regularly. Talk to his doctor about all the symptoms you are seeing at home, and request him to consider putting your son on those longer release medications.

Please let us know how things progress. People here have a lot of good ideas and many have gone through the same issues you have, and we also get participation from many people here who have schizophrenia who also have very good ideas and can help.

Here is some information about the long acting medications / 1 and 3 month injectable medications:

http://www.currentpsychiatry.com/home/article/when-and-how-to-use-long-acting-injectable-antipsychotics/9fdbc7e6161fadeb424d732fb3625823.html

http://www.psychiatrictimes.com/articles/injectable-atypical-antipsychotics-recommended


#4

BY being supportive and non judgemental, you are helping him. A schizophrenic needs support and for people to be non judgemental. I hope things improve for you and your son.


#5

One other resource on injectable antipsychotics - this is a very good one:

http://www.rcpsych.ac.uk/healthadvice/treatmentswellbeing/depotmedication.aspx


#6

I copied this from bfbarbie (her name isn’t coming of up for whatever reason). It’s stuff from the LEAP institute. She also has a sz child and she says she finds this stuff very helpful.

Please look at these sites:
http://www.leapinstitute.org/5 - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.
http://dramador.com/1 - Dr. Xavier Amador is a clinical psychologist whose brother had schizophrenia. He is the founder of the LEAP Institute. Wrote the book: I’m Not Sick I Don’t Need Help! Can buy from his website.
Search Xavier Amador and LEAP on youtube.com and you should find some long videos
http://www.treatmentadvocacycenter.org/index.php - under problems you will see anosognosia
Anosognosia looks like denial but is different.
http://lesswrong.com/lw/e25/bayes_for_schizophrenics_reasoning_in_delusional/1 - helped my understand delusions
http://www.nami.org/ - National Alliance on Mental Illness.
http://www.schizophrenia.ca/ - Schizophrenia Society of Canada
Can also find some very useful information here:
http://schizophrenia.com/


#7

Thank you all for your responses! A year ago my son had been on regime of Lamictal, lexapro, and Latuda, which did seem to help, but he stopped the Latuda due to akathesia, and never went back on another antipsychotic. 6 months ago, he stopped all meds completely without anyone’s knowledge. Then the episode with the adderall. The adderall pushed him over the edge. He has told me things in the last month, that do lead me to believe that he has been suffering far far longer than I ever imagined, way back into childhood.

I thInk if he could tolerate a depot injection, that that would the best possible treatment, however I do have grave concerns about the safety of an injectable with my son, because he seems to always have an extreme sensitivity to meds, and has Experienced some potentially deadly side effects in the past, the most dangerous having been hyperammonanemia. These dangerous side effects have him terrified of meds, and he believes them to be poison now. And, I can’t say that I blame him. However, I know that if something isn’t done soon enough to alleviate some of his distress, I fear he will attempt suicide again.

He also believes he has brain cancer, he believes his blood is too thick, and so he takes aspirin constantly to ‘thin his blood’ and I know he must have an ulcer by now because he is always complaining of his stomach hurting. I am so terrified for him.


#8

I recommend you really push for this type of testing - given your son’s problems with medications in the past. Its widely available in the US and Canada I believe:


#9

Make sure this concern is conveyed to his doctor / medical team both by phone and in writing (certified mail so that you know they’ve signed for it and you have a legal document then proving that they signed for and got the letter. This will help “motivate” them to make sure they know they have to act and not avoid or dismiss your concerns.


#10

Karl, I try so so hard not to be judgemental, but whenever I try to suggest something that maybe helpful, he goes berserk and screams at the to “get out of his f-I got life and leave him the f-ck alone!” But then just hours later will come back to me crying in agony.

What can I say or do?


#11

Wow, that is awesome! I will definitely check into that! Thanks so much.


#12

Some meds are the same but they are just in inject able form. It’s a chance and you have to weigh whether or not he is suffering enough to take that chance. But whenever I had been on meds my dr usually scales them up. He starts with a very low dose then dials it up slowly until either we get the proper results or it becomes apparent it isn’t working for me. This is all in pill form though. At the same time I’ve never had a good dr just say- here this is the strength we are going for. Start with the full dose.

Pharmacists are good people to talk to about interactions and side effects. They might be able to give you a clearer picture than I can as I have only had pills. Plus they are free! I always just go to the pharmacist that I get my meds from.


#13

Thanks for the links onceapoet, believe it or not, I am a NAMI member, advocate, and Family to Family instructor. Have been for years, but still find it difficult to deal with my own son.
The LEAP method is wonderful, and my husband and I ordered the DVD’s and are trying so hard to use the LEAP method of communication.


#14

By the way - be sure to to through your entire house and remove all the obvious possible suicide tools - so as to make it more difficult, if you are concerned about suicide. Things like long ropes, big knives, guns, poisons, etc. - that he might use in desperation. I lost my brother to suicide - and its a common problem - so take it seriously.


#15

Wow… your story is all of our stories… very hard to watch our children suffer with this illness. My son has finally gotten releif with the injectable drug Invega Sustenna…has been on it since April after I called the Crisis Intervention Team who detremined he could not be released sent him to a 10 day psych hospital. I know this drug is not a one size fits all or for everyone… I see a lot of people that have been diagnosed complain of bad side effects but this drug has given me my son back and we take baby steps… (began working a seasonal job) .My son believed all of his delusions, … very similar to your boys and thought he was fine…in fact while at the psychiatric hospital, he believed he was there for something physical… Most of the side effects of Invega Sustenna can be controlled… I have read a lot on this medication and side effects (internal anxiety… pacing) and have tweaked it with the support of his psychiatrist… … After a few days my son said “thanks mom,… I feel like myself again”… this, I felt was the beginning of being hopeful for the future… I pray that you and your son can find relief so that he no longer suffers the pain of this disease…Sending prayers and comfort…


#16

I hope things turn around for the better for you and all your family.


#17

I am so sorry. I know how you feel. I hope we all find some answers. My daughter was recently arrested and she just doesn’t see that she needs help. I am so broken hearted also. I just try to stay positive but I always feel scared of what might happen to her. Just know your not alone and good thoughts and prayers are heading your way.


#18

at least you care :heart:
take care :alien:


#19

Hi Luvmyson,

Any updates on your son? I hope you have some good news for us:)


#20

Yes! I do have good news! Oh thank God!

My son has now been on Invega for a little over 2 weeks, (had the oral Invega first, then the first shot that lasted a week, and then just had his second shot yesterday that is supposed to last for 3 weeks) and has already had a remarkable decrease in his paranoia. However, he has had a very flat affect, has been extremely tired, seems to be experiencing a little bit of akathesia, and is eating more than I have seen him eat in Several years. Of course I am worried about all these side effects, but I think the positive benefit outweighs the negative at this point. He has not seemed concerned about any of the other side effects I have mentioned, but he has mentioned a side effect that he says he can not tell me about, so I’m assuming that is a sexual side effect. He did say his doc told him that most of these things will subside as his body adjusts to the med. Lets hope that all will continue to go well.
He seems much much more at peace now. And once reason I know he is doing better is that he has agreed to go on a 10 day trip and a family reunion with my husband and I. This will be the first trip he has done with us in 5 years.