Family and Caregiver Schizophrenia Discussion Forum

Somebody help us!


#1

I have a 21 year old son who has diagnosed with schizophrenia last year. We probably started noticing the onset when he was 15/16. He has been back and forth between his biological mothers care and me and his dad during this time. The times he left were our lowest moments and we didn’t understand this illness at all. Things would become hostile and eventually our son would be do angry and irrational that he would leave and end up back with his mother. Of course things never worked out and he always ended up back with us 6 months later. This has been our “normal” for 6 years now. It’s only in the last 17 months that we have sought help through our local hospital and admitted our son to get help. On two seperated occasions he was admitted for threatening suicide and ontwo other occasions when he was living with his biological mom. We realize he does not have a stable environment and that’s why we can’t properly help him. When the going gets tough and he is at a low point we pay for it. We have a 3 year old that I worry about and our other 2 kids (who are on their own now) have had their fare share if encounters with their brothers violent and irrational episodes.
I worry he may one day hurt somebody or himself. I just don’t know what else to do for him. He never stays long enough at our house to go for counselling or accept our advice about seeking help through the local agencies. And we can’t drive him to every appt but that’s his excuse for not going at all. It’s been a vicious cycle. His dad frustrated. I admit I feel so much resentment towards this illness and am content when he is not at home. But I also feel horrible when I know he has nowhere to go and has pushed the limits at where ever he stays and ends up back home with us. Until another incident… Can anyone else sympathize with our son and our family?? Unfortunately my husband and I have decided to seperate. I am hoping to still try help him as much as possible if he wishes . But it’s definately been a struggle. I hope he can one day find some peace in his mind so that he can thrive and be independent.
Sad, step-mother


#2

I have nothing I can say, I am diagnosed, not a caregiver. I don’t have any clue anyways.

I just wanted to comment to say that I hope things get better. I have a jelly bean hug for you.
-0-

and a fat jelly bean hug. Because those are always better.

-O-


#3

Well, lots of people do get better. My diagnosis is paranoid schizophrenia and I’ve had my ups and downs with this disease over the course of 34 years. I had nothing for a few years when I first got sick. Mine started when i was 15 or 16 too though the difference between me and your son is that no one suspected my problems were a mental illness until I was 19 years old. I got diagnosed at that age in 1980. Like I said I had nothing for about 4 years after I got diagnosed. I was in and out of hospitals. I had no money, no car, no sanity. Nothing. Then I got addicted to crack. A long story but after some bad times with drugs for four years I got help in AA, CA, and NA and I’ve been clean since January of 1990. But anyway after living in supported housing and a group home until 1995 I moved out on my own. I have now been independent since then and have worked almost steadily albeit, mostly part time. I’ve been at my janitor job for 5 years, I own a car, take online college classes and live by myself. But I couldn’t have done it without help. My family refused to give up on me during my worst times. But I’ve got a little bit for myself now. But it took years of suffering and serious symptoms to get to this stage at age 53. I still have bad symptoms but I expect that more good things will happen to me along with the bad. There’s hope but it’s a crap shoot as to who gets better and who doesn’t. My families help has been invaluable to my life.


#4

Thank you!! You are brave and I appreciate your response


#5

I also thank you for sharing your experience as somebody who is schizophrenic. Believe me when I say, I wish I had the resources to help my son I would. But as you said the diagnosis came so much later as a young adult by then the behaviours, habits and thought patterns had already manifested itself.
So now is struggle seeing himself struggle at daily life. It is heart breaking and sometimes (I won’t lie) unbearable as a caregiver. You feel so helpless.
I don’t know what the future holds right now. I hope only good things will eventually come his way. But I am glad to hear you are succeeding and successful in your life. Thank you


#6

No, I think that any of the caregivers out there are much braver than I am. I have no choice. I am like this. I am going to be like this until I die.

But you do have a choice.

You (caregivers as a whole) could choose to run. You could turn you back, turn away, or just deny the situation even exists. You don’t have to be here with us. There are no laws forcing you to stay. There aren’t even any social standards that would require you to. Plenty of people, even those who haven’t even seen what you have to deal with, wouldn’t say a thing if you told us to leave and never come back. There are commercials for depression on tv. There are radio spots talking about how to recognize autism in children so that they can get help. It might seem as though the commercials don’t matter. That people don’t know as much as doctors and doctors should know enough to select the right drug.

I agree. Advertising drugs on tv gives people the false illusion that they can understand as much as a doctor without any medical training what so ever. But at the same time it is important. No one talks about our condition openly. Depression, anxiety, even erectile dysfunction can be shown on the television with pictures insinuating that it will get better. That you can just take this pill and it will take care of your problem. Pure greed driven marketing. But we are so misunderstood and demonized that even the drug companies, who shamelessly vie for patients don’t speak to us openly. No one talks about the signs of schizophrenia. I had no idea that I was starting to develop it until a therapist I was seeing referred me to a doctor.

Not only are you doing your best to care for someone with schizophrenia you are trying to care for someone who doesn’t want help. You are still trying to make their lives better and help them understand that they are, indeed, sick.

You are the brave one.


#7

**Hi Ella—
I know you are separating from your husband, but you can still try to help!
Give any info. you can gather on this illness to him. Guide him to this site!
Is your step-son on any medication and seeing a doctor for this? It would be hard to stay on a program if he is going back and forth.
From my own experience-Your step-son is going to need all the support he can get from all parties. I hope all of you can stick together on this. It will lighten the load a little and you will also be able to care for your other children. Share the work. **


#8

Welcome to the forum @Ellabravas

I can certainly empathize with your story. My son is 20 diagnosed at 17. Currently living with me however used to live with his Dad or Nana. When things get tough he wants to run back to Nana. Thankfully I’m in Ontario and Dad/Nana are in BC so that makes running to them a lot harder. I think it’s part of what is called the fight or flight response that seems to kick into overdrive. The stress of dealing with my son helped push my hubby into being on Ciprelax for anxiety. I made the decision to stay off of work so that I stay home with my son. Thankfully my hubby’s job can support us for now.

I’m sorry that you and your husband have decided to separate. Is this something that can be worked out?

Also these sites may help:
http://www.leapinstitute.org/ - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.
http://dramador.com/ - 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/ - helped my understand delusions


#9

You might try putting your son in a group home. He will have the option of leaving if he isn’t court committed. Maybe you need to court commit him. At a group home people can monitor him and encourage him to stay on his med’s. Maybe if you keep him there he will stabilize on his med’s and become well enough to leave and function independently.


#10

Bridget, I will do what I can to help him. I have always had his best interest at heart. I’ve helped raise him for 14 years so he is my son. He is on meds but does not see his doctor/counsellor or attend any kind of support groups. We have tried to get him involved and It’s difficult when you are also struggling with personal things (work, home, the other kids, spouses) and can’t devote 24-7 to the persons needs, like driving them somewhere or just getting them up in the morning to go. It gets to a point where you feel like giving up. Like I said this cycle has gone on for years. It’s normal for us. Just last night he came home again after being gone for two months and I’m sure we will follow the same path. It’s hard! And takes it’s toll. The thing is his dad works out of town and isn’t able to devote the time to him that he wants. And our sons doctors won’t give me any information or even speak to me about his situation because I’m not his “real” mom and now that he’s an adult, forget it!! It’s pointless to try get things like AISH/Social services to even listen to what I have to say. It’s been like this and yet his dad and I are the only ones who have tried to get him support. It’s makes no sense!!
Thank you for your responses! I will direct my son to this site


#11

Crumby I have never heard of this before. It sounds so harsh. We beat ourselves up so many times for admitting him to the hospital. It was hard but it was harder for his dad!! I think that’s why our son has the ideas that we are just a crash pad. Which we are but I just don’t know anymore. I’m afraid he will fall thru the cracks once his dad and I seperate.


#12

Thank you Barbie. I will look into these sites. And unfortunately no there will be no reconciliation between me and my husband.


#13

Just wanted to add that this site will be VERY helpful for your husband.


#14

The group homes I speak of are not bad places. I am addressing you from one now. That’s where I live. The quality of group homes varies,so you would want to shop around. Putting your son in a group home may be the safest, most stable alternative. Granted, your son might hate it and decide to live on the street, but if you court committed him you could have him placed back in one when he decides to leave. Your son might also decide to live on the street when he is with you. It’s your decision what you want to do for your son, but I think this is one of the best alternatives.


#15

How do you even go about doing this? If he is in between homes, what kind of “power” do we really have over him? Does this have to go thru his psychologist? Or is it a petition through the courts that we apply? I don’t understand the process at all. If you could elaborate or direct me to a starting point, I would greatly appreciate it.


#16

I would look for a psychologist who is amenable to committing your son. Make it plain that you are reaching the end of your resources in dealing with him, and you can’t seem to give him the stability he needs. The wishes of the family would have to weigh a lot. Since your son is 21 he is no longer a minor and you are no longer legally obligated to support him. Your son would not have to stay at the group home unless he is legally committed or if you are his legal guardian. I think you have done everything you can possible do for him. Let somebody else try to help him.


#17

When I was committed to a group home it was after a long history of involuntary commitments. You would want to get your son on disability to pay for his care at a group home. You may have to get a lawyer to do this. Make it plain that your son has exhausted your resources in trying to care for him, and there is no way he can cope with a job or the normal responsibilities of an adult. Once you get him on disability and in a group home you will get a lot of pressure taken off you. You will have done your best for him and provided him with the best situation he can get.


#18

The important thing is to get a lawyer and get him put on disability. This shouldn’t cost too much. From there he will be put on medicaid. That will pay for his medical treatment. It might be cheaper than paying for a lawyer if he does something criminal. Then try to become the legal guardian for your son. If you do that you will have the power to make him stay in a group home. If you don’t he will have the right to walk away any time he wants to. This might be a process that takes a while. Start urging commitments for your son. Create a history of forced commitments.


#19

Ellabravas, is there any way that you can speak to him mom? Maybe all of you can reach out to help him?

I wish to tell you something…

I have an adult son who is also living with his stepmom and dad in another state. I wish to god that someone there would include me in his care and any info! His dad and I don’t speak to eachother well at all, although I do try, but he is very noncommunicative toward me. And getting any info from sons doctor is next to impossible with me living in another state and my son being an adult.

As I said, I wish that someone would give me info on how my son is doing. I do see my son but it’s only when I have vacations from work here usually. Not long enough for me!


#20

This thread has scared me a bit, so many thoughts to sort out that I would like to express, I will definitely getting back to you all on this one.