Family and Caregiver Schizophrenia Discussion Forum

I cannot stop crying, and is there an average time in the hospital?


#1

My son has been in a psychosis since July 25th. We live in Panama and I could not afford to bring him back to the States until the first of the month. The second I was able we flew in and had him immediately hospitalized. We truly hoped in that first month that he would simply get better, which has happened in the past. However, he progressively got worse and worse. To the point I had to physically cut his food and feed it to him, help him bathe (dad got that job!) he slept next to me under a different blanket holding my hand because anytime I went away from him he would just stand in the hallway or try to follow me out of the door and cry. It was horrific. Now he has been in the hospital 2 1/2 weeks and is showing just the barest hint of improvement. He eats by himself, though he was eating honey mustard with nothing the other day. He has no memory of where he lives or what his siblings/puppy’s names are, nothing. It’s as though he is just blank. And yet he played checkers for about five minutes tonight, then he went away again.

Today was the first time they have definitively told me that they are diagnosing him with schizophrenia- he is only 17, he will be 18 in a month and is terrified. He thought we were going to kick him out at 18 and we reassured him that he will always have us in his life, as long as we are on this earth. He’s still staring, pacing, repeating/echoing, all the stuff he’s been doing for weeks now. He’s currently on Injectable and oral Invega, though they have lowered his dose they felt it may have been too high, they also have him on Artane, and on Klonopin 1mg 4x’s a day, which seems like an awful lot! I think I’d be feeling little pain or feeling little of anything if someone gave me that much Klonopin!

I cannot stop crying. Whenever I have to say the word schizophrenia and my son in the same sentence I find myself just falling deeply into depression. I’m not blaming myself for his condition but I’m so sad for him. And scared. He’s not even an adult yet and he’s been settled with this and he’s so vulnerable and I am so lost. I want to do what is right for him and I have a tremendous amount of guilt about the fact that I live in Panama and he has lived there with me/us. He had been happy as well, on and off, his last hospitalization was in April for jumping out of a moving car and in Jan/feb for ending up on life support after a very serious OD. Having gone thru all of this I am so overwhelmed and scared. I want him to have a successful life, whatever that looks like to HIM. Which I understand may be different for me. But it’s his happiness I’m concerned with. He wants to go back to Panama with us when he’s released, and we will take him. But right now, at this age I feel like I’m already losing my child, which I am, as he becomes an adult. But with this disease he is less of an adult then he should be and I’m terrified. I know I keep saying that and I’m sorry, I just don’t have other worlds in my lexicon to describe how frightened and sad and overwhelmed I am. The dr’s don’t have any idea of when he may go home, I have been asking them if perhaps they need to consider a different cocktail to make things work and have not had luck. I will take any advice anyone can give. We also did not realize he was not on disability so his check is going to stop until he is formally approved for disability as an adult which is going to have a huge financial impact on our household and the ability to get him the care he needs. Does anyone know of any organizations that can help out for that in between time> Or if there is a way to expedite thing with SSI? And I haven’t even discussed Guardianship yet, which I believe I need. We have been dealing with mental health issues his entire life. It’s just never gotten this bad. Help please. Even just moral support would be welcome at this point, I feel so incredibly alone right now.


#2

I’m sorry you and your son are going through this. It’s awful.

The excess of medication will continue until he’s more stable, it happened to me too. I’m also on Invega shots, it took awhile for them to work but eventually they did and I’m doing great now, going back to school and my delusions and hallucinations are gone.

I don’t live in the US but maybe @notmoses can help you with the organizations that can help out.

Best of luck!


#3

Or @barbiebf or @SzAdmin

Unfortunately if it is schizophrenia… it’s not going to pass quickly… in fact it might never.

Every human is highly adaptable… through therapy and with the help of medication he can regain functionality and personality. The illness does change people, just like a lot of things in life do.

It might be odd to hear… but if you move forward with vigilance and provide a lot of positive encouragement and understanding for your son. You may look back on this one day and see it all in a better light.

Developing Sz eventually got me off all drugs aside from coffee. I live on my own now. I’ll get getting back int school within a year… It’s taken between 2 and 3 years to get to this point.

Be patient and hopeful… this illness isn’t fatal. In some cases it’s an eye opener. Make sure he knows he’s safe and loved. Help reconnect him to his interests. It will bring him comfort and provide the grounds for a hopeful future.

Good luck. I’m sorry this has happened. I’ve heard it said once or twice “This only happens to the best of us, to test us.” (Conceit, but it wasn’t me who said it!)


#4

I think that you will go through a grieving period. It takes time to accept. Know though that he can recover from this if it’s catatonic sz. It takes time for medications to start working. Whenever my son is inpatient it takes at least 3 weeks for the medications to start making any significant difference. It can seem like a lot of medications especially to us however sometimes higher doses are better in the beginning. The best I can understand the pain my son may feel at times is that it is more neurological not physical. Give the doctor’s some time. Switching meds are hard on the body and the mind and switching them without giving them a chance to see if they will work is not usually the best thing to do. If you notice a med making him worse withing 24 hrs to a week then yes ask for a med change.

My son is 21. Currently he’s not in a good way. He has certainly been worse but not good either. He doesn’t take care of his own hygiene anymore without assistance. Sadly though my son insists on bringing marijuana into the picture which takes away his coping and functioning skills. His first break was catatonic in 2011. Since that though he has reached a point of stability where he was symptom free, attending some schooling and learning to enjoy live and a quieter mind. I had my son back… Don’t give up hope. Find counselling and support groups for yourself so that you can better cope.


#5

@expatmom

Hello,

I’m sorry your family has to go through this. It is heartbreaking watching someone you love fight through this. I do hope you read some of the recovery section of the forum, there are people who have this illness and have over come it and gone on to start business, get married, have kids, and live content lives.

My oldest brother is the on in our family who is living with Sz. He was also diagnosed when he was 17. I was very young, but I do remember a lot of cycling between getting better and getting worse.

With my brother pot and alcohol made it worse. It made is so his meds didn’t work well, so he’d give up taking them. If your son doesn’t take drugs and get treatment early, he has a good chance of getting his life back on track much easier then my brother did.

Some of the thing you mentioned I remember my brother doing. His concentration was very short when he wasn’t doing well. He’d get up and walk away from card games, he’d forget what he was doing, or he’d forget what we were playing.

He did get better. Mom took care of the doctors and meds so I don’t remember everything he was on, but it did seem like a lot. It took some time, but his memory did come back little by little.

Another thing that helped my brother was therapy. After he stabilized, there were therapies that helped him get coping skills back.

www.nami.org
helped my family a lot with information and support and knowledge and resources. If your in the states for now, you will probably find a chapter near you.

I hope things get better for your son soon.

Thank you for letting me post.


#6

I’m so sorry for your family. It is a devastating illness but also treatable. With time, support and treatment your son will feel better. Know that you are not alone. Check out Understanding Schizophrenia, Bring Change 2 Mind, and NAMI…all on facebook. …great thing to have technology. …it brings our world a bit closer.


#7

Your son is lucky to have such a wonderful, dedicated mother. The med’s should start to work in time. When I was put on disability I just had to apply once, which is exceptional. Most people have to apply twice. I don’t know how long an average stay in the hospital is where you are, but they seem to be going with shorter stays in most places. Give the med’s time to work. He should come around.


#8

This is a little bit of my story. I was diagnosed with paranoid schizophrenia in 1980 at age 19 but my illness really started manifesting itself a couple of years before that. You said a little moral support might help. This story may give you a little hope for you, for your son. I posted this on here about a week ago.

                                                        Schizophrenia

Hey, when I first got sick, I was REALLY sick. Now I have a semblance of a normal life. But when I was psychotic my first two years of my illness when I was 19-21, I had no idea or clue if I would EVER get better. I remember in the middle of my suffering that I read about “seeing the light at the end of the tunnel”. And I remember getting home in my psychosis and realizing that I saw no light at the end of the tunnel. I saw no indication that me suffering would ever stop. I didn’t even plan for the future because my paranoid schizophrenia consumed me. It was my whole focus. it was what my life was about.

Well, when I was 21 years old my parents arranged for me to live in a locked psychiatric hospital. It had a hundred other very sick people. I don’t know how I survived. I got put on medication but I suffered the entire time I was there with terrible symptoms. I almost got beat up a few times and I was ALWAYS right on the edge of going stark raving mad. Well after 8 months my parents (again) arranged for me to move into a nice residential treatment home. It was very heavily structured. Through a series of small steps I got a job 9 months later, I stayed there four years.

I a few years later I enrolled myself in college while living in semi-independent living. This was around 1984. Unfortunately around that time I got addicted to crack, but I later got clean in 1990.

Anyway, I just want to say that anyone who saw me in 1980-82 would have though my case was hopeless. I sure thought so. But I have now worked for the last 30-odd years. I need only four more classes for my degree. I have lived on my own since 1995 and I take care of myself. It hasn’t been close to easy but it has it’s rewards and perks.

This morning I got up and drove to the store and bought some sodas. Yesterday, I was in the depths of despair. but that’s how life works. One day you’re up and the next day you’re down. You can’t predict your future. Just take your medication, let people help you and do what you can. I hope you get something from my story, good luck.


#9

Thank you everyone for sharing what you did, it was supportive and I am feeling somewhat less alone. I guess it’s also hard because there are so few people I can bluntly talk about this with and that makes things even more difficult. I agree, Barbiebf that there is a mourning/grieving period, I think I am firmly in it right now. And because I struggle with anxiety and depression it doesn’t help. This has become quickly overwhelming. I’m just so sad. And for the 6th day in a row they said there has been no visible change in him. Yet they called to find out what we wanted to see before we would take him home with us. Which blew my mind because he is NO WHERE near being able to go home!! He can’t continue his train of thought and won’t talk to the dr during their visits. I had an episode where the nurse said that he was staring and it was Creepy" and I told her very nicely that I found the word “creepy” offensive and that I felt “disconcerting” was a better word. Semantics count when we are describing people. She now uses the word disconcerting but laughs, I guess that’s ok, because it’s better then being really negative and calling it creepy. It just bugs me. I guess because I don’t see his staring at me as creepy I see it as needy, because it feels like he is staring for reassurance, something I can only try to give him. He is terrified that something will happen physically to my husband and I and is afraid of us dying. Which I guess makes sense since we are his only true support people. It’s just so sad. And I’m angry too. I should probably do more research on grieving because I can tell I’m going thru the different stages, bouncing everywhere, but going thru them. It’s easier for me to ignore my stuff and focus on his.


#10

Don’t be afraid to get extra help for your own anxiety and depression. A little while ago I started taking a small dose of antidepressant and honestly I love them.

Here are some old posts/links that may help throughout your journey:

http://forum.schizophrenia.com/t/grieving-mental-illness-the-mental-illness-education-project-inc/2748

http://forum.schizophrenia.com/t/questions-to-ask-the-psychiatrist/2695?u=barbiebf

http://forum.schizophrenia.com/t/8-ways-to-help-someone-live-well-with-schizophrenia/10496

http://forum.schizophrenia.com/t/hipaa-at-a-glance-us/2298

http://forum.schizophrenia.com/t/the-caregiver-space/10783

http://forum.schizophrenia.com/t/anosognosia-article/12157

http://forum.schizophrenia.com/t/creating-a-crisis-plan/3224

http://forum.schizophrenia.com/t/the-leap-institute-living-with-schizophrenia-youtube/18441

Sorry I know that was a lot… There are also blogs and Facebook pages of other parents if interested. This is one:

http://forum.schizophrenia.com/t/understanding-schizophrenia-a-facebook-page/2098

My blog and Facebook can be found in my profile.


#11

No, this wasn’t a lot, it’s immensely helpful and I’ve been spending some time bouncing around and taking notes. I think in situations like this it’s better to have too much information then not enough. I especially found the questions helpful and wrote the ones down that I think I most need to ask. Thank you so much!


#12

I’m sorry your family and your son are going through this. There is life when one comes out of the fog of sz. I suffered for years with no relief from medication. My doctor finally recommended ECT treatments, I’m not saying your son should receive these I’m just saying that for me they were what I needed. For the first time since getting sick I had relief. I was able to start going to school again. This past August I graduated Summa Cum Laude with my BS. This past Christmas my boyfriend gave me a promise ring. We already know we’re getting married some day. There is life after sz. Sometimes it takes years to get back on track, some people it takes less time.

I don’t know what it’s like to be on the outside of this illness and watch a loved one go through it. When you’re experiencing it it is hell. I never understood people not taking medication because I would do anything to make it stop.

I have had a lot of experience with hospitals. From my experience they only keep you until your safe. Unfortunately the insurance companies don’t want to pay for long stays even if it’s needed. One thing that will help is once he is discharged the hospital will probably recommend a partial care program. It’s partial hospitalization where he would go during the day and receive therapy and attend different kinds of groups.

I wish you the best of luck. Just remember there is life after this. :sunny:


#13

SunGirl,

Just reading about your success is a reason to feel better. Unfortunately no one has seen any change in my son still. He has been treatment resistant in the past and had to be transferred to a different hospital, however, we have had issues with that hospital because we were assertive in trying to get his needs met and they were not thrilled. It seems most hospitals just want parents to agree with everything and take their kids home regardless of the circumstances. I am so sad when I go see him, I know that isn’t his fault, my sadness, it’s just so hard not to be. I know from him, because we talk and we are close, how much he wants from life and how scared he is right now. Yes, I want to save him, and I know I cannot, I just wish I could, which I think most parents could relate to. I will let him do what he needs to for his benefit, but still wish I could wave that magic wand.


#14

Sorry you go through this. My psychotic episode started with paranoia. Fear of sleeping and death. Did not understand it was voices, thought I heared people’s minds. I ended up in apathy. It was all to much so I stopped eating, sleeping and interacting with my surroundings.

I was hospitalized for almost 6 months. Trying out different meds. Finally my mom forced them to let me go. I went to her place and lived there for 4 months before I returned home to husband and kids. I was away from home for a year.


#15

I can’t stop crying either. My son is 27 and was diagnosed with paranoid schizophrenia two years ago. He was hospitalized and is currently on injectable Invega Sustenna which helps him a lot. There is schizophrenia and other mental illness in my family (my mother’s side) but anyway. . . even though he is doing pretty well, he is very flat, has no friends of his own (his sister’s friends are his friends and they like him and understand) he doesn’t work, has no hobbies (he used to write and draw and was really into skateboarding) In other words, he isn’t the same person. And I feel your loneliness and sadness. Nobody understands what it feels like to be the parent of a schizophrenic, except another parent . . . I cry so much! I just feel like my son is gone for the most part. He lives with his father and sister and I live just outside of town in the country with my fiancé. My son used to drive and he would come visit us. He doesn’t drive anymore because of too many fender benders and sometimes would just leave the car and start walking. As I say, I live with my fiancé. And I have a brother and a sister, both of whom I am very close, but I am withdrawn from everyone, except for my fiancé, but I try not to burden him too much with all this emotion. I fear for his future, my son. I was unable to express the feeling for a long time, I knew I was very sad . . . but then a friend of mine, whose son is also schizophrenic, said, “It feels like a death.” And that’s exactly what it is. I am grieving! And I don’t know how to get over this. I read books on the topic and I’m online all the time, researching and trying to find out why? why? why? So I do feel for you. You are not alone in your feelings for your child.


#16

All of your accomplishments, even the fact that you are on a website, reading and writing about your illness, seem so unbelievable to me right now! I can’t even imagine my son doing these things. I am glad you are doing well, though, and it gives me a small measure of hope.


#17

I had a major fall and lost a lot. But my sisters are going to help me get back on my feet.


#18

Why don’t you show him this forum? He might make new friends here. Maybe not in real life but online.

To come back from a psychotic episode takes time and effort. I lost a lot of abilities, like cooking or doing bills. I had to relearn everything.

It’s been 5 years for me now. I still have moments when I stop function, get paranoid and feel connection to my guardian angel. But that can be helped by medicine adjustments.

I have one wish to you. Please make spaces in your text. Many of us anen’t able to read walls of text. I am not able to focus enogh to remember where I was so the sentances become mumbo jumbo.


#19

Hello, I’m sorry you and your family are going through this.

I felt some of the deepest grief of my life when my family member was put in the hospital against his will. I feel even more deeply grateful he is alive.

I attend NAMI family support group. Though my views are not 100% in line with NAMI, the group is helpful. People are committed to their family members’ well being and to supporting one another. There might be a chapter in your area.

The why? is not fully known; the debilitating aspects are an illness just like any other. Scientists have not figured out the exact etiology, but they seem to be testing lots of hypotheses.

I also withdrew from almost everyone because most people are not well informed. I wasn’t.

I hope everything goes really well for your family.


#20

Things will improve for you. Sz comes in cycles. It ebbs and flows. Things will pick up pfor you. Just try another anti psychotic. Id recommends abilify or Seroquel. They have helped me on the way to recovery.