Family and Caregiver Schizophrenia Discussion Forum

Surviving the insanity of fixed delusions


#1

This is my first experience with a support group for schizophrenia.

I am reaching out for support to survive this insanity I have been living in.

My 27 year old son has been experiencing paranoid delusions for four years. He believes that law enforcement are trying to set him up for a crime he has not committed. It began when when he was living on his own. He thought his house was bugged and the police were coming in and out of his house. He thought the neighbors were in on it. His boss and co-workers were in on it. He ended up quitting his job and abandoning his house because he felt he was imminently going to be arrested.

He ended up moving in with my husband, my daughter and I. This is when he started believing that his father was helping the police with the set up.

He became very paranoid, suspicious, followed his father around the house watching everything he did. He began to believe that his father/the police were getting chemicals or drugs into his system through his skin. He actually felt his skin burning.

Anything he felt was contaminated was thrown away. Clothing, blankets etc. Then he believed his sister was also helping the police. One late night he took her on a walk in the neighborhood and confronted her, telling her she needed to confess, that he knew she was working with the FBI.

Things continued to decline from there. He wouldn’t sleep inside the house because everything was contaminated with the chemicals/drugs. He slept in a tent in the backyard. He cut off all contact with all friends to protect them from what was happening with him with the police. He could not work because every job he got, the employer and co workers were in on the set up.

He began trying to decontaminate himself and belongings with industrial strength vinegar. I was not allowed to talk about any of this inside the house or the cars because they were all bugged. I was the only one in the family left that he didn’t think was in on the set up. He became increasingly hostile and verbally aggressive especially toward his father. He was threatening his father. Life in our home became unbearable for us. It got to the point that I had to make him leave.

That was January 2015. He lived in the woods about a mile from our home in a tent. He got a job at a restaurant and this lasted 2 weeks. He said one of his co workers sprayed chemicals on him and asked the owner to pull the video tape so he would finally have proof of this conspiracy against him.

The owner didn’t pull the video and my son felt he was imminently going to be arrested so he never went back. Shortly after this he asked me to take him to a local river for him to canoe and camp on the river. So I did. On the river, every helicopter that flew over, every boat that came down the river was part of “them”. The last year has been a cycle of me picking him up from the river, taking him from hotel to hotel (all of them have been bugged or contaminated by the police), taking him back to the river, responding to his frequent calls, bringing supplies, taking him to appointments, etc.

His needs have caused me to neglect the rest of the family. I am the only one that can help him because I am the only one that he doesn’t know for sure is working with the police; however, he has his doubts about me. He recently got so weary of the struggle that he volunteered to be hospitalized, his first hospitalization. He spent 2 1/2 weeks in the hospital which ended up being court ordered to stay and was started on Abilify Maintena. He will not comply with oral meds because he has zero insight into his illness. This is all really happening and he is going to extreme lengths to prove it, videotaping everything. I purchased a house for him to live in. When he got out of the hospital, he refused to go to the house because it didn’t have a surveillance system. He wanted to go back to the river. I took him back to the river.

He has been there now less than a week and I have already had to make two trips to the river to bring supplies to him. He called last night to tell me that the helicopters and the boats were watching him. I am at the end of me. It is affecting my job. I have no personal life. I have custody of my son’s son and my husband is having to provide the majority of care for him due to our son’s constant needs.

The Abilify Maintena has not helped the delusions. He is just as sick now as he was before he went into the hospital. I feel that I cannot continue on this path, I am sinking.

Would appreciate some support from people that have experienced similar problems.


#2

Dear Flymeaway,

Your family’s situation is very difficult. While we have not experienced exactly this, our family member has experienced similar delusions and worked very hard to live with them. Our family member did ask to go live in the forest, did stop medication after a similar length hospitalization. Prior to that, when our family member lost control of behavior, family member was living out for months (nearby) while I brought food, water, and clothes.

The first resolution for us happened in January, a very cold month, when our family member asked to live in the house again. The strong wish to live in the forest happened the following December. We convinced our family member to stay in the house for awhile, again due to cold.

You care deeply and provide as many basic needs as possible. Buying a house is an incredible commitment to another person’s well being.

There is nothing like a driving paranoia. We have only experienced family member’s severe episodes for limited times (the first time about five months and the second time twelve weeks or so that paranoia dictated behavior with a number of briefer episodes interspersed). I also think the paranoia is there most of the time, but family member has coping mechanisms and makes large efforts to get along.

It sounds like you are doing everything humanly possible. Some advice might be to try to find local crisis-level social workers from the state and fill them in on the whole situation; ask their advice. Instead of involving law enforcement, maybe adult protective services could assess your son’s living situation. I understand that even this may not seem safe to him with that level of paranoia. My family member has specific exit and death by cop plans if any authorities show up and I am too frightened to call any of them.

Tell his doctors what is happening and that the medicine is not working. Document everything with a timeline in case he winds up back in the hospital so he can maybe stay long enough to get the meds working.

The following is what I allow myself to consider when I become overwhelmed:

It is okay to stop (or take a break) bringing food and giving rides and hotels. Tell him he is welcome at your home or that if he contacts you, you will leave food and water out for him (I used to hang bags of food on the back door of our house.). Also clothes. A bus pass. A way to charge his phone or get a shower. He may be too paranoid to accept. No one can do what you are doing alone for very long unless they don’t have any other commitments and responsibilities, which you do. All of us here know you love your son and want him to be safe and healthy and to know he is loved.

I do not mention the above as a form of tough love (which is not a reasonable response to illness) or as a way to alter his behavior. He has a serious medical condition, but that doesn’t make you superhuman. If you reach your limits, you do.

I am sorry this is happening to you and your family. What supports do you feel you need? What would help you stay afloat?


#3

Thank you for your thoughtful response. One of the many challenges I face is in attempting to provide for his needs, such as clothing and food, he believes it is contaminated and won’t accept it. There is always something that prevents him from being able to accept what could really help. Currently, he is on the river because he wouldn’t go to the house I purchased for him due to it not having a surveillance system. I bought him a smart phone and took it to the river for him to order it because he wouldn’t let me. He calls the next day from another phone to let me know the smart Phone doesn’t work because THEY already got to it. THEY want him to go to the house without the surveillance system.

The rest of my family including his father, brother, and sister think I need to let go of him. It is true that his illness has affected my marriage, other relationships, my job and has consumed me and it hasn’t changed anything with my son. As a mother, even though the ship is sinking, it is hard to let go. I guess I just want support from people who know what I am going through.


#4

My son was living in his own apartment on the 2nd floor, and he said the government was sending drones to spy on him thru his apartment windows. And that his car was bugged and his apartment. He would go out walking at night and sleep behind a dumpster instead of his place because he felt safer there.
He said the government while he was sleeping, went into his brain and put a small camera inside to spy on him. And at work, he would accuse workers and customers of trying to kill him even us, his parents.

You are doing so much to take care of your son, and its emotional and physically draining and your family sees that. But as the mom you want to do all you can to take care of your son because if not you, who will?

My daughters thought I was doing to much for my son but I told them that I would do the same for them if they were ill.
We are here to support you and know that your heart breaks for the pain your son is in. I hope you can contact someone soon at a mental health clinic who can give you advice and steps to take next to help your son.

Hugs to you​:sunflower::heart:️


#5

@Flymeaway

I am very sorry you are going through this with your son. All of us understand and can feel your pain. I don’t believe you’re doing to much for your son. If it was your daughter or husband, you would do the same for them. My husband and daughter are very supportive, but sometimes they think I do to much. I could never put him out because it’s not his fault that he has this disease. Mental illness is a disease. If he had cancer or heart disease would they want us to put him out then. I know that your husband and daughter are hurting too, but remind them that it’s not his fault and that you need their support. Yes, I do believe it will hurt a marriage because of the stress. Maybe you and your husband should take a break to enjoy yourselves with going out to dinner. If you was like me, I didn’t want to leave my son at home because it was all new to us. My son was 24 when he was dignosed with Scz on last year. He’s 25 on today and so far he’s stable. He was just release from the hospital 3 weeks ago on today. He was there for 2 weeks and 4 days. He’s on the Invega shot. He didn’t like the side effects, but I think the side effects is getting better. I will pray for you and your family and know that your not alone and you have come to the right website for support… Close your eyes and imagine ALL of the mothers on this site Hugging you tight! Hugs to you🙂


#6

In my area there is not much to offer him. He is court ordered to follow up with the county mental health for appointments for the next 5 months. He has already stopped taking the oral meds prescribed in the hospital. Basically, he will go there once a month for therapy and his shot.

Thank you for your support. This has been by far the most difficult thing I have had to deal with in my life, including 16 years and counting of my mothers Alzheimer’s disease.


#7

Thank you. The problem in my situation is that our son hates his father and sister because he believes they are working with the police. He has been very hostile to them and has threatened to harm his father. It is impossible for him to live with us. This is why I bought him a house to live in but so far he won’t go there.


#8

I don’t see how a mother could willingly let go of her child. The metaphor of sinking and drowning is one that comes to me often. Sometimes I think, let go or I will drown too. Sometimes I see I will never let go, even if I drop beneath the water. Maybe I will become worn out and my strength to hold will give way.

No one would question devotion to family members if they had unstigmatized illnesses like leukemia or MS.

We fully support you and choices you make in caring for your family and yourself.

I just saw your new post. If he is having this many symptoms with the court ordered treatment (minus oral meds), I guess the only hope is he shows up for an appointment and is so ill they take him back to the hospital, then for some reason he gets to stay there long enough to receive effective treatment.


#9

Hi, and welcome to our support forum. The challenges you’ve explained your son as having are pretty common from my experience - my brother had many of the same delusions and same relactions to the delusions. Only when he got on medications did the delusions go away. If one medications doesn’t work - keep working with the doctors and make sure they know it - and make sure that they try another medication.

I know how hard and stressful and difficult it is. The good news is it can get much better.

I recommend you read up and watch some videos when you can and take care of yourself. If you aren’t healthy, you can’t provide much health to your son.

Here are some great early psychosis treatment centers - they are usually free and can provide the best mix of medications and psychotherapy:

http://forum.schizophrenia.com/t/early-psychosis-treatment-centers-how-to-get-great-help-for-free/12743

I recommend you learn as much about the illness as you can, here is a good book:

and reach out to the community (e.g. http://www.NAMI.org and find your local chapter in your city or state - assuming you’re in the USA). In Canada its the Schizophrenia Society of Canada:
http://www.schizophrenia.ca/

and find out all the support resources available in your area. She’ll need therapy and medication support ongoing. Learn about Psychiatric Advanced Directives and perhaps get your mother to sign one.

http://www.nrc-pad.org/

and rally your family support system (sisters, brothers, extended family, etc.) and make plans for when she’ll get out.

Try to stay positive - things get better (and worse, and better… - there tend to be cycles with this illness).


#10

I understand. He’s paranoid and it’s the illness that makes him think like that. Hopefully, Things will get better. My son in the beginning was against my mom, sister and her children. They haven’t done anything to him, but for some reason he didn’t like them. It hurt my mom and sister so bad. He is the 1st grandchild. I explained to them that it was the illness talking not my son. When he’s on his medication, he wants to be around them, but when he’s not on any medication he don’t want to go around them. They understand now. I ordered my mom and sisters books to read on his disorder. Hugs to you!


#11

Here is a way to get better treatment for your son - see this link and make sure the doctors treat him and get his delusions addressed or hold them legally responsible for any actions he takes that could hurt others or himself:

http://www.schizophrenia.com/family/bettercare.html

From this - I recommend you also review the full list of Frequently Asked Questions and answers:
http://schizophrenia.com/family/faqindex.htm#

Also - be sure to read this “First Aid for Psychosis” writeup - on how to deal with your son’s delusions and other related issues:

http://www.schizophrenia.com/sznews/archives/005561.html


#12

So many of us can relate, what a drain this illness is on everyone involved!

Your son is certainly very ill and it is pretty obvious that the current medication is not working. I’m assuming here you have no guardianship rights, and your son does not allow you to be involved in his treatment. Your recourse here, in addition the what the Admin told you, is to get him involuntarily admitted. In my city, in order to get a mental health warrant issued, 3 people must submit affidavits supporting the need for involuntary admission. Document every unsafe behavior. Get others who have contact with him involved - there are usually people in the community who really would like to help, but don’t know how. Then do everything you can to make it clear that he will not be safe if he is discharged while unstable.

FWIW, Abilify was a terrible medication for my son as well. If something is making him worse, make certain the providers know. Even tho they may not be able to communicate with you, there is no legal limitation on you telling them what you are seeing, and making it clear to them that you are not satisfied with the current treatment.


#13

My husband was the same way with his paranoid delusions. He thought people were all working towards hurting him and his family. It’s so hard to witness the fear they go thru. If I were you, I would call the Police and tell them he threatened harm to your husband and that he is mentally ill. I know it’s a hard thing to do but you are not lying and it’s for his own good! I am sure once they talk to him, they will see that he has problems and have him evaluated. He may be so paranoid that he may just hurt someone because he thinks they are out to get him. I wish you the best of luck and am sorry you are going thru this, we all know how hard it is.


#14

Hello Flymeaway,
I was just reading this thread for the first time today and am wondering how you are getting along.
Have you made any headway with your son/family? Have you found yourself some one close by to confide in or talk to for support?
My girlfriend/life partner has bi polar and schizophrenia combined. Last summer I witnessed many similar things that you spoke about in your first comment. She shows small signs of paranoia now and then but she is doing well and life at home is fairly calm, but that is due to medication and she has a real understanding of her illness when she is well. This helps because we can talk candidly about what might be real or not real when things do come up. However, I never tell her outright she is being paranoid or unreasonable. I commend you there because it sounds like you do the same with your son, just trying to accept his thoughts as what is completely real to him.
Please know there are so many people out there that are still routing for you, waiting to support you. Please continue to reach out here for support as well.


#15

Hi Vee! Thank you for your concern. Things are better with my son right now. He is taking his medication. He is living in a house I purchased for him to live in and is actually able to do some construction work. He still has the delusions but they are not controlling his every thought like they were. I am very thankful. He is struggling right now because his 10 year old great Dane is missing and he is heartbroken. What makes it more difficult is that it was somewhat his fault because he didn’t wake up to let her back in the house. He felt like she was all he had.


#16

Hi myson,
This is my first online group discussion, so I hope I am responding in a correct manner. I was reading the posts from and to Flymeaway, and really appreciate the tone of your lovely supportive letter to Flymeaway. My heart goes out to her, too, and I intend to write her after this.

This is a bit off topic, but If I may ask, what are the side affects your son is experiencing?

My son is on Invega Sustenna, too, and his symptoms have decreases so very much during the several years he’s been on it, slowly over time. But he has chronic nausea which gets pretty bad. His psychiatrist said this is probably not due to the invega, as it is not a common side affect. He has been on the 3 month shots for about 8 months now. He prefers it over getting injected every month, as before.

with prayers and blessings for you, your son, and your family,
ILoveMySon


#17

Dear FlyMeAway,

My heart goes out to you, and I hope that something I say will benefit you in some small way. I applaud your wonderful motherly compassion and all you are doing for your son.

I have been in the trenches, so to speak, for a long time. My sister had it first, and I was heavily involved in her care, as we did not have other family. Then my son had it, and I found that what I had learned with my sister helped me with him. That is not to say it was not dreadful and terrifying, beyond words. It was. He did not get treatment for a decades and his condition deteriorated dreadfully, but he has lived with me for the past 7 years or so, and has been happy and peaceful, as have I. It is a long story and I am happy to share it with anyone who wants to know it, but I will spare you; and just share the things that I have found to be the greatest benefit.

The Nami Family-to-Family Classes - I learned a great deal from the course and also from the other parents. And it was soothing to my heart to be with others experiencing the same thing.

The Nami support group, made up of the same parents, was also a great source of information and tangible, emotional support.

The class and the other members suggested many books and I bought and devoured most of them. Absolutely great sources of information that made a tremendous difference in my ability to deal with all the many aspects of the illness, and I actually felt supported by the authors.

From all of these sources, I learned ways to approach and be with my son that were not threatening, how to communicate with him, to win his trust, and more. It is a lifelong learning. I have found that the more I understand, the less I feel overwhelmed and helpless, and the more I can be an effective advocate for my beloved son.

The newest book I am now reading is “The Complete Family Guide to Schizophrenia”, by Kim T. Mueser, PhD, and Susan Gingerich MSW. I just love this book and highly recommend it. The digital edition is $9.99 on Google Pay Books.And I just ordered “Social Skills Training for Schizophrenia, Second Edition” by Alan S. Bellack), Kim T. Mueser, Susan Gingerich, and Julie Agresta. I “looked inside” the book on Amazon, and really liked what I saw.

I think you may find help in “The 6 Steps to Handling Paranoia” under “How to Manage 5 Common Symptoms of Schizophrenia” by Dr. Peter Weiden and Dr.Leston Havens. which I found on schizophrenia.com. They may also help your husband and daughter in their communication efforts with your son. I have used these kinds of skills, and they really helped me. Here are the steps:

6 steps to handling paranoia

  1. Place yourself beside the consumer rather than face-to-face. The side-by-side position tends to deflect the paranoid fears away from you. Instead, both you and the consumer are looking out at the (hostile) world together. This positioning technique may improve the chances that you will form a working therapeutic relationship with the consumer early on. Don’t stand directly in front of the individual. That may be considered confrontational.

  2. Avoid direct eye contact. Direct eye contact often makes a paranoid individual feel even more so. Look elsewhere.

  3. Speak Indirectly. Avoid speaking directly to the consumer. Substitute pronouns such as “it”, “he”, “she” or “they” for the words “I” and “you”. Like the body positioning, the purpose is to deflect the consumer’s paranoid projections away from one-on-one interactions with the case worker. Instead, paranoid symptoms are directed towards external and more general “real world” issues.

  4. Identify with, rather than fight, the consumer. Whenever possible, your attitudes and emotional expressions should parallel the consumer’s attitudes and expressions. The goal is to help the consumer feel understood. Meet anger with reciprocal anger, frustration with frustration (i.e., you also express anger and frustration with the difficult circumstances). Your own emotional expressions should be taken up to the point of, and perhaps slightly beyond, the consumer’s own emotional expression to show your on his/her side A paranoid individual is not thinking rationally and your attempts to rationalize will not likely be successful.

  5. Don’t rationalize. Share mistrust. The intuitive approach with a paranoid person is to try to persuade him or her to be more trusting. It is often better to do the opposite; that is, for you - along with the consumer - to mistrust the world together. No attempt is made to correct or contradict the consumer, or to test reality. Temporarily, the consumer’s account of reality is accepted as reality. The assumption behind this technique is that, in the midst of a paranoid state, the consumer is overburdened and overwhelmed by a mixture of real-life stresses and distress from psychotic symptoms. While carefully avoiding collusion with the psychotic symptoms, you should attempt to find certain believable or credible aspects of the paranoid belief system. This allows you to agree with the consumer on something. You then move on to a symptom area, attempt to substitute a less paranoid, more benign (and general) explanation for the more highly personalized paranoid one. The process of exchanging more malignant to benign paranoid beliefs is best done in a step-wise fashion, where the alternate explanation is only a notch less paranoid than the previous one. The eventual goal is for the consumer to tell the case worker, “Don’t be so paranoid.” Ms. C. blames her last hospitalization on a police conspiracy to terrorize her. Rather than confront her with her own behavior that led to her being arrested, her case manager agrees that the police cannot be trusted and goes on to talk about his own outrage at the Rodney King case. By the end of the conversation, Ms. C. tells the case worker to stop treating the police so unfairly!

And lastly, if this is not too strange to say, a friend who is a minister told me that God has an especially kind ear for Mothers who pray for their children. Every day, I ask God to bring my son peace, joy, and love. I ask Him to give me strength, endurance and clarity of thought, as well as the ability to feel peace and joy with what we have, and I thank Him for the many little miracles that have occurred. And right now, I pray for this for your son, for you, and for your family.

I believe our path, as family of schizophrenics (and the path of our schizophrenics, too) though very difficult and different from the path of people not dealing with mental illness, and so lacking in much of what “normal” life is made of, is not only an important one, but one with great blessings that come from the joy of bringing our loved ones back from what can only be described as living hell. We are path makers. We are learning and others who come after will benefit from what we have learned. I believe this is not a punishment, but that we were chosen for this path because of our love. It is a very great challenge, a marathon rather than a sprint, but a challenge that can result in great rewards.

May we all be blessed.

ILoveMySon


#18

Hello @ILoveMySon, My son isn’t on the shot anymore because he was complaining about the side effects. He was feeling tired, couldn’t think clearly, sleep all day, and he was looking very flat in the face. I wished he had stayed on it because he was going really good on it. He was still delusional but it was under control. It wasn’t as bad. The racing thoughts had stopped. He’s on Rispedone 3mg and colengin at night. It worked good too, but he has gained a lot of weight and man breast. I’m happy to hear your son is doing well. Be blessed and hugs to you!


#19

Hello I love my son,
Thank you for all of the practical advice. I really appreciate the tips on how to deal with paranoia. Unfortunately, my son is decompensating again. The delusions are coming back full force. He is really struggling. I had a couple of months in which it almost seemed like he was not ill, and that was so relieving. I appreciate prayers from the group.


#20

Dear FlyMeAway,

I am so sorry to hear your son is again decompensating. That is the pits, I know. And when they are experiencing decompensation, their brain is actually being damaged more, so it is important to get them stabilized, as soon as possible.

One very important resource I forgot to mention (probably because I have not had to use it in several years) is the mental health crisis teams that are now in many cities and counties, across the nation. They can come to your son, wherever he is, and access his condition, to determine whether he is a danger to himself or others, and in many places, whether he can provide housing and food for himself. They partner with law inforcement who are also trained in how to approach and handle people with mental illness, and together they can get your son into a locked mental health facility for a 36 or 48 hour hold, while the doctors determine his condition.

In the past, I had to rely on these teams whenever my son would get really ill, to get him back into treatment. I was always very communicative with them and with the hospital staff, and with his liasons, so they would know that, for instance, my son would always say he’d taken his meds but I’d find them in the trash. The more they know, the more they can help.

It sounds like your son qualifies for getting on conservatorship, wherein he loses his rights as an adult for a period of time, usually a year, while he is made to take his medication until his condition is stabilized, usually in the hospital at first, and then in a board and care, usually, where the staff is specially trained, where his condition is monitored, and his medications given by the trained staff, and where the staff call the crisis team if he starts decompensating again. You can ask what I call the healing team – the nurses, social worker, patient liason and famiy liason about this, once he is in the hospital.

My son was put on county conservatorship, but they determined he would be best served by living with me, when he was well enough to leave the hospital, because he would have not stayed in the board and cares. But having him home was a herculean effort, and it is not for everyone. He is our only child, so I especially wanted to go that route and willingly gave up life outside of this. But there are other routes. If we had not taken him in, he would have probably stayed in the hospital much longer, until they had determined he could be trusted to stay in a board and care.

I encourage you to reach out to support in your area, like Nami groups, who can help you find the local resources you need. You can call the Nami contact person in your area to ask about crisis teams numbers, for instance. Or you can do an internet search for it, or you can call your local law enforcement or county mental hospital to request the number.

Feel free to contact me more, if you think I may be of assistance.

You and your son, and also your family, are in my heart and in my prayers.

ILoveMySon