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Just beginning to learn..sharing my story


#1

As I write this, my sweet son is finally settled down and laying on the sofa across from me. I am beginning to learn about my son what he might have since he started living with me this past 6 months ago. He lived with his dad since the divorce (8yrs ago) and my other two children lived with me. My ex told me in the past that he had Asperger and that is the reason why his behavior was odd sometimes. So, whenever he was with me, I assumed that it was due to his Asperger. During his living with his dad, he had difficulty in school and eventually, he was unable to complete his final yr of high school but he successfully obtained his GED. I have learned that during the years when he was living with his dad, he did not include much of outside activities so he became more isolated from the outside and spent majority indoors and was introduced to cyber community and his only friends were in cyber community. He had no responsibilities because his dad took care of it for him.

In 2015, all seemed to change for my son. I wish, I had it known sooner. His dad was seeing someone and started leaving him by himself extended periods. In January 2016, when he visited me and his older brother to celebrate his 21st birthday, he was so excited and was having so much fun, he seemed very happy. In March 2016, is when I believe it was his first breakdown. At the time, I was so clueless. I vividly remember answering my son’s call. His frantic and scared voice telling me that he is feeling so cold and his feet and hands were about to fall off. I managed to reach his sister living nearby to take him to the hospital ER. When I drove 2 hrs to get to the hospital, my son’s eyes were not my boy I knew. He was discharged from the emergency saying that nothing was wrong with him and advised to get some rest. My son told me that he was not able to get some sleep for the longest time and have not been eating for several days. At the time, I assumed it was due to lack of rest and nutrition. Second, it was June 2016, a call from hospital. Looking back, I wish, I had known better. August 2016, his father abandoned him at the house I owned in town where my son was.

In Oct 2016, I packed up from the city and relocated back to be with my son. At the time, I was still thinking that my son had a highly functional Asperger (from what my ex told me). So, I had a goal to come back and teach him a life skills so he can be independent on his own. We made a list of task for him to do and also made a goal for him. He was doing so well. He alone applied and got a job working at local fast food. He was so happy and loving it. I was so proud of him. Then all of sudden, in March 2017, things start to change. He was having hard time sleeping. I’ve asked him numerous time if something was stressing him but he did not vocalize. He tends to keep it inward, I’ve noticed. Due to lack of performance at the job, he was let go in April. His father was constantly harassing him about wanting his car back. I’ve noticed my son not getting out of the bed. spent most of the days in his room lying. I don’t know if there was too much stress which triggered his breakdown. In May, I started noticing his behavior change. Started pacing a lot and from what I can tell, he was talking to himself. When I asked him, he said that he had a special power of telepathy and was able to talk to people from other part of the world. As day went by, it got worse. It was to the point where I was frightened that he could harm himself. I did not know what to do so I’ve reached out to his former psychologist whom my son saw during his teen year briefly. As soon as Dr saw him, he advised me to admit him. Since he was no longer minor, I was not able to force him to go but thank god that he agreed to go willingly. He was too busy pacing and talking to voices in his head. I don’t know what they gave him at the hospital but he seemed to be doing better whenever I went to visit him. My son was discharged from the hospital after 4 days. He was prescribed Benztropine and Zyprexa for 14 days until his follow-up appt. When he got home, medication he was given was making him worse. He did not want to take it but I encouraged him to take it. After being on one week, he stopped taking it and he seems to be doing better. Then when he saw the doctor on Monday, he prescribed him Prozac. My son did not start Prozac until yesterday, and today, him hearing voices came back and he started pacing again. His doctor advised me to stop Prozac and have my son come see him on Tuesday. If he gets worse during the weekend, admit him to hospital.

As a mother, I feel like I have failed my duty as mother. I have been wondering if he lived with me, could things have been different. Since he is no longer minor, what are things I can do to help him? I’ve been doing lot of research trying to understand mental illness. Reading up on articles, studies, and medications, etc. As a mother, it hurts to see your son hurting (and he does not know). I hope and pray that I have the strength and patience to stand strong and help my son to find out what is causing him all these. Thank you for reading my post. This was great help for me internally. To let it out.


#2

So sorry to hear that your son is unwell. It is very scary to see your child like that and the feelings of helplessness can be overwhelming. I am curious as to why the Dr’s prescribed antidepressants and no antipsychotics. Did they say that he has psychosis?

As his mother and caregiver, it’s important that you get some support. If you live in an area where it exists, check out NAMI. They’re a great resource. I hope that things get better.


#3

We all do this.

What did I do wrong? If I had done X, Y or Z, would this have happened? Or, if I hadn’t done X, Y & Z, could I have prevented this?

It’s no use torturing yourself now because 1. you’ll never know and 2. it most likely wouldn’t have mattered.

I say that, but I blame myself in a million ways & always will. The best I can do is not let the guilt eat me up. I need that energy for other things.


#4

Update: This morning he woke up and took a shower and I was hoping he is better today but he is not. My son is constantly pacing and is talking to himself. Should I be concerned and take him in or wait until Tuesday to see the doctor who prescribed him Prozac? I feel so lost.


#5

@hoping I don’t think you failed as a mother at all. I think we all play the devil’s advocate, what should I have done, what didn’t I do? I’ve come to learn after a long time that thinking is useless and detrimental to our own sanity. And we need our sanity to get through this. My daughter kept saying she saw a man in her room at night a lot when she was only 3 or 4 years old. I told her doctor that I thought this was more than childhood imagination and I was very concerned. I could not get any doctor to take this seriously. When she was 11 she had the first psychosis and again at 12. Diagnosis was severe depression with psychotic features. Doctor’s are really hesitant to diagnose sz in child and teen years. She saw a psychiatrist and therapist off and on until she was 18. People would ask me if I thought about getting her help during these years. They did not understand she was getting help. From 18 to around 30 there was no doctors, no medications. She was an adult and could handle this herself, so she told me. When she around 30, she went back to a doctor on her own and begged for help saying she could not live this way anymore. She was referred to the community clinic where without ever seeing a doctor, a nurse practitioner diagnosed her as bipolar and put on medication that really messed her mind up. Finally, she volunteered for a case study and got a really good psychiatrist and a several tests where run and she was diagnoses with sz at 32. She was put on the medication and has had several adjustments and for the first time is showing remarkable improvement. She talks about remembering the man in her room when she was 3 - 4 as a shadow. I think that was the first sign something was wrong and doctors missed the real diagnosis for almost 20 years. I get angry when I think of the years she could have been getting real help. I does go to show, you can be very proactive in your child’s mental health care and things like this can still happen. When your son was living with his father, it was almost impossible for you to know the extent of the help he needed. Please don’t beat yourself up and feel you failed him. Hugs and love to you and your son. Please keep us all updated on what is going on in your lives.


#6

Your son’s experience sounds very similar to what my son has gone through, and with a similar timeline. First of all, good for you for sharing your full story, and just getting it out. This is a safe and supportive place to discuss such things.

First of all, many in our family thought my son was also high-functioning aspergers and also ADHD. There are many similarities in personality/behaviors.

After his first psychotic break (that I know of) at age 24, my son was just released from an 8 day stay in a mental health recovery center. He hasn’t been officially diagnosed but the doctor mentioned some type of schizophrenia spectrum disorder and possibly delusional disorder - all of which were exacerbated by cannabis use which is legal in our state.

He is on xyprexa and doing well so far. He has had one day of intensive outpatient therapy and will go back next week after the holiday weekend. He seems happy and willing to work on building a future for himself but he will need a LOT of help. After the outpatient therapy ends I am hoping he gets into a first psychosis intervention program which will help him not only with meds and mental health care but also life coaching. It is not easy to get into the program though, as it isn’t yet clear if he has had a break before or if it was all caused by drug use. His pdoc does not think it is all drugs. He doesn’t perfectly meet the criteria so I’m really thinking positive about this. On his own, he will not be capable of having much of a life. Even before his break, I pretty much knew this.

Everything that is going on for my son sounds like what your son also needs. A hospital stay to stabilize him, followed by intensive outpatient therapy, followed by a more long term program to help him build his life. Sounds to me like he isn’t getting the proper meds to help him stabilize. When he is delusional or psychotic, take him to the ER. In the case of my son, they were able to hold him because he hadn’t been eating and it was clear he could not care for himself. So they kept him and he ended up in excellent inpatient care. ( He had just been evicted from a housing situation, after also losing a job he’d held for two years.)

I wish you all the best. This has been the hardest thing I’ve ever had to face in my life but somehow, I’m getting through it. I take it one day at a time now. Remember, you are your son’s best advocate right now


#7

I’d be concerned, but if he’s not wandering off or doing anything to put himself or anyone else in danger, I’d just hold on until Tuesday.

If they want to admit him, it’s a holiday weekend & beds will be in short supply - if they can find one at all.

I may be holding on until Tuesday myself.


#8

Hoping, Do you think he will go in with you to the hospital to talk to someone?


#9

My son’s psychologist contacted me today to check up on my son how he was doing. He said he’ll make time to see him tomorrow to talk to him if he is willing to come. My son has high respect for him so hopefully, he’ll agree to go and talk to him tomorrow. He is still unstable. He has not slept all last night.


#10

My son finally went into his room and turned off the light. I’m hoping and praying that he is getting much needed sleep. He has been up since yesterday, constantly pacing and talking to voices in his head. I am feeling exhausted. I could not believe that it has to become where I started locking the deadbolt locks in the house at night and hiding keys to prevent him from running off in the street aimlessly in the middle of the night. Am I being paranoid? I have been journaling his behavior daily and now, I’m thinking about setting wakeup-alarm throughout the night to check up on him to see if he is sleeping. Am I starting to go overboard here?


#11

If you’re going overboard, so am I.

I’m not locking the house because he hasn’t ran off yet, but I started getting up to see if my son is sleeping last night.
I think he finally slept about 4 hours, but don’t think he slept any the previous 2 nights.

Just a month and a half ago, he went to the hospital. He had slept less than 16 hours in 8 days.
I know, because I journal daily too.


#12

I’m so glad I have found this site. Although, it has been just few days on this site, it has been a tremendous help to me by reading through all the posts. I’m so happy to hear @slw that your son got some sleep. My son has been coming in and out of his bedroom just now when I thought he was getting some sleep. It has been past 5 mins now since he went back to his room. So, hopefully, he is sleeping.


#13

Hoping, I think journaling is the one thing we can do that is helpful. I wouldn’t set the alarm to get up because you need your sleep too and you’ll likely hear him if he gets up. Plus opening their door in the night would scare my son. But if the light is on I might turn it off when I get up to pee.

Some advice I would like to give to try not to worry about the what ifs. You’ll stop living your life and that doesn’t help. God bless you and your son.


#14

My heart is heavy right now. This Memorial weekend felt like I was living in a Twilight Zone. Yesterday, I had to take my son to local Mental Clinic but they were full so I took him to ER. By this time, he was going without a sleep 4 days, which that I know of. Could be longer. He finally got physical with me and I was so frightened. It was like a nightmare. What happened to my sweet boy. My entire Memorial day was spent in ER.

They didn’t give anything at the hospital other than something to calm him down but he was still talking to voices. After all the blood and urine work (routine stuff), they decided to transfer him to clinic that is 2 hrs drive from the city. This was only place they had available bed and accepted. So he got transported to out-of-town clinic this morning around 12:00 am. It was hardest thing I had to endure my boy leaving. This is so all new to me, I wish there were a class 101 for caregivers step by step what to expect and steps to get things done.

I called the clinic where he got transferred to this morning and ask them if I can come and see him and they say no without his PIN number. What in the world is the pin number. They say, he has to give it to me. I pleaded saying that he is a special need adult and he may not even aware what that is and also, no clue as to where he is. They had no mercy for me.
I’m at lost. I am going to drive up there and see what I can do to somehow to see my son.

This is such a nightmare.


#15

Not that this will help, but we have exactly the same thing going on.

My son didn’t hit me, but he tried to block me from leaving the situation, then physically held me so I couldn’t leave. It was scary.

I chose not to take him to the hospital because I knew what it would be like. And, going through intake on an emergency involuntary hold is never fast or fun on the best days. I can only imagine what it was like for you.

So far, I haven’t ran into the PIN thing with a mental hospital, but I have had to have one for other people I knew in the regular hospital. At one hospital my son goes to, I have to know his patient number to get any information, but it’s always the same & I practically have it memorized. Plus, they kind of know me now.

At the other one, he needs to sign the forms for me to talk to them, but I can visit as long as I know his name & his unit. He has to refuse to see me for them to not let me go in.

I only have experience with 2 so far, but it seems each one is a little different. I’d be frustrated too.

If I were you, I’d call again and ask for his case manager. If you can’t get that, ask for the patient advocate. If you drive up, that’s who you would ask for too. Also, his outpatient doctor can get information if you can get him or her to do it - that’s called coordination of care. Maybe even a nurse in the office can get some information for you.


#16

@slw thank you so much for the information. I will try that and see what I am able to get. I need to get myself together and try to be strong here. I’m a wreck thinking of him and just starts to cry. Thank god that I found this forum 'cause right now, this is the place where I can come to and get some comfort.


#17

Well, I hope it works.

That was the advice I was given by different people when my son first went inpatient.

I could at least visit him because I had his patient number, but he wouldn’t sign the HIPAA paperwork when he first went in so they could talk to me - I was visiting though.

Then, within a few days, he wanted to sign the paperwork, but he wasn’t really capable of asking for it himself, and they had given me the wrong case worker’s name, so I was calling the wrong person. As soon as I found the right person, it went very smoothly.

The people on the phone have to follow the rules they’re given. But, the case manager is going to want to ask you questions, and they’re going to want to know if he’s being discharged back to your home. They can also get him on the phone with you if he’s not calling you himself and he wants to talk to you.

If he can remember your number to call, he’ll be calling you soon enough anyway. Mine did anyway - sometimes every 5 minutes.

I never had to go to the patient advocate, but I’m guessing all hospitals have one since it’s listed in the patient guide and I’ve seen signs posted.


#18

Hi,

My family member’s pin # at one place was their birthday. The other was random.

Go and ask nicely and politely at the desk when you can see your son, then wait around and see if anyone else comes to visit their loved one. Maybe they will give you the formula, if there is one, for the pin #. If it is as simple as the first place my family member was, you will be in. If it’s random, your son will need to call you, so carry your phone around.

Also, leave a paper letter for your son with all of your phone numbers and try to get the staff to tell you how and when your son can use the phone so you can include that information. Also, give him some phone numbers of other friends and family members he might want to contact.

We went through almost fourteen days of no communication because my family member was too psychotic to figure out the phone and computer system where they were.

Maybe you can get an emergency, temporary guardianship?


#19

Thank you @Hereandhere for the info. I am so new to all this, it is so helpful all the information I am getting from this forum. It definitely is a heaven sent. Thank you all again for all the helpful infos!


#20

My daughter, now 31, has autism and was dx with schizophrenia 2 years ago. She had been living semi- independently when she became paranoid and had a psychotic break. She would go for 4-5 days without sleep, couldn’t eat, paced, and screamed that she couldn’t live like this. She didnt have a psychiatrist at this point and the ER wouldn’t admit her since she denied hallucinations. She didn’t realize she was hallucinating, and had to learn to recognize the symptoms. The second time I took her to the ER, she said she wanted to hurt herself because she could not handle the pain. Like you, I felt responsible, didn’t sleep out of the fear of what might happen. We spent 4 hours in an overcrowded ER in chairs next to the nurse’s station, as there wasn’t an examination room available. The lights, noise, and activity were absolute torture for her. She kept begging me to help her, and I was in tears, as I felt helpless. Finally, she was able to go into an exam room where she could lie down and cover her eyes with a sheet. She was admitted after a 5 1/2 hour wait. Then a patient with a criminal history touched her breast and made sexual advances, while on the mental ward. A similar incident, un known to me at the time, had happened in her apartment building and was the trigger for her initial psychosis. She was terrified, as this monster’s room was next to hers. I felt horrible. I had brought her there for help, and had reassured her that she would be safe. After I raised hell, they moved the man into another room and warned him that if he came near her again he’d be locked up.
She was finally released and has had a time getting meds adjusted. She has been hospitalized twice now, and the second event was terrifying, as she had walked to a mall while I was at work, become disoriented, and accepted help from 3 men she didn’t know. Thank God they were angels and took her to the ER. Anyone could have taken advantage of her. It kills me to think of what could have happened.
It took several months for things to return to the new normal, but she seems to be doing okay now. Getting the right meds is key, and finding a psychiatrist and therapist she trusts. I am retiring early so I can stay home and take care of her. I can’t afford not to work at all, so I need to find a part-time job.
This is a hard way to live, and often I feel alone and so very inadequate. I do what I can to help her and pray that the proposed cuts in service won’t affect us too much. I have non-Hodgkin’s Lymphoma, diabetes, and 2 rare eye diseases that threaten my sight. I am trying to get things arranged for when I am no longer here. I have 2 wonderful son’s nearby and withot them, I wouldn’t be able to survive. But they have their own families, and big problems of their own, and I hate to ask for their help. My ex-husband is totally useless, never paid a dime in child support, and is 3,000 miles away. It’s frightening at times, and I truly relate to your situation with your son. You’ll get through this and you have shown that you are stronger than you know. I’ll be thinking good thoughts for you and your son.