Family and Caregiver Schizophrenia Discussion Forum

Struggling with my sister's illness


#1

I just signed up for this site, I was looking for some support because the situation with my sister has me really upset and I wanted to talk to other people who are going through similar situations with loved ones. My sister is 39, and hasn’t officially been diagnosed with paranoid schizophrenia, but she was hospitalized recently and they said that there has to be a longer period of her symptoms for her to be diagnosed with paranoid schizophrenia (they diagnosed her with psychosis nos). I’m not really close to my sister, but I care very much for her and she is a part of my life. I have a pretty busy life with 3 kids, my youngest is 2, and I’m in school full time. I have depression myself and my husband is depressed and was recently suicidal, so times have been difficult. I’ve done what I can for my sister but last night was so difficult.
She started getting bad after she got fired (which was due to her symptoms) in December. She thought that her coworkers were conspiring against her, then she thought they were getting into her car, then she thought that they were watching her at home, it got progressively worse. Then she thought that they were getting into her apartment and changing things around. She was withdrawing more and more and stopped talking to her friends and stopped coming over to see me, but was in denial of any problem with herself. It started getting to the point where she thought that her ex-boyfriend (who she still lives with) was an imposter who was made to look like him but wasn’t actually him. Then everyone else was an imposter, nobody was who they said they were. She said her house was bugged, her phone was hacked, her facebook was hacked, the neighbors were spying on her and talking about her (she said she can hear them through the walls but her ex said he doesn’t hear them) etc. I signed her up for medicaid but she was convinced it was a scam. I tried to get her an appointment for mental health services but she refused to go. She still takes care of herself so to speak, I mean she eats and isn’t doing anything dangerous to herself or others, so getting her committed is very difficult. The police did get involved because she called the police stating that her ex was an imposter and she wanted him to leave and he wouldn’t. After a while of this happening it finally got the point where she was in the hospital but they were only able to keep her for 6 days. I spoke with the people at the hospital but they said there wasn’t enough to go off of to get her committed.
I guess I just feel so helpless and sad. I feel like I’ve lost my sister. She won’t take medication, she won’t admit she has a problem, she thinks I’m some kind of imposter. Last night she came over and asked for money, and we got into a very long intense conversation and it was emotionally wretching for me (I’m a pretty sensitive person). She wanted to know what I did with her sister, I tried to assure her that I was who I said I was but nothing I said convinced her and she started crying and saying I was an imposter and wanted to know where her sister is. Then she said her nephews and niece are imposters too. This is the first time she missed my son’s birthday party last month and it was so hard to tell my son that my sister is sick, and it’s the kind of sick that lasts a long time. She wouldn’t even come into my house, she stayed in the car with sunglasses on and wouldn’t look at me. It’s so hard, my sister was so different before this all started. She was outgoing, had a lot of friends, was always busy doing things and keeping active. Now she’s a completely different person and there is nothing I can do to get her back. I’ve tried everything that I can think of. I guess I wanted to talk to others to get advice/support and feedback, as I feel so very down and depressed about this and don’t really have anyone to talk to. Thank you for reading this if you made it this far.

Brianna


#2

Welcome to the forum Briana~
I know this is hard to watch a loved one go through this.
Surprising that the police saw this behavior and the hospital didnt keep her! From my own experience, there is nothing you can do until she does something that will cause her to be picked up by the police. It would probably be a good idea to talk to someone at the hospital and explain the situation-also talk to the police ( hopefully they have a crisis intervention team) and let them also know for when this happens. It also helped me to have these things set up so that if you do have to call, they will know whats going on. the police will call you when they get there, and you can accompany your sister to the ER and give them the info. they need.
Sometimes a person has to be very sick before they will admit them.
Check out NAMI.org. You and your family need support also. maybe get your family on board with this too.
There is a lot of info. on this site and everyone here has been a great support for me.
The more you learn, and the more support-the better you will feel. Things wont seem so fearful, and youll know you are doing everything you can.


#3

I have a son who is diagnosed with schizophrenia, different variations along the way including paranoid, schizoaffective, bipolar with psychotic tendencies and the best one was that he was a sociopath, which was from a case manager so it doesn’t count. I remember the early years very well. I struggled as it sounds like you are doing. After 12 years it has calmed down and he is somewhat stable. In my experiences I found that I had to be very calm with any professionals, I was told that my son was fine and I was a hysterical mother. With law enforcement I found they will only do so much and only for so long - I really hope that is not the case where you are! But through it all I have found that my staying loving and accepting of my son has worked the best. When I couldn’t get anyone to hospitalize him even when he was suicidal I would think, “I have to do something, I have to fix this.” I have accepted that I can’t fix this. That was a long time coming. Now I try what I can, do all that I can and then let go. I know that I can’t make things happen but only do what I can and be ready to support my son when it is finally over. And kind of start over again. But, one light of hope, my son has calmed down and even realizes he has an illness. This is the best thing ever. This might all change tomorrow, but as I get older I realize I get slower and that gives me the time to step back, not react and take action slowly and with specific intent. That has helped. So has getting into counseling myself when it all gets to be too much. You need to go at it with a full store of energy or you won’t be able to help, so put yourself first. It will probably take a while, but think about not trying to get your sister to admit she has a problem. Maybe just try to build a safe environment for her when you can. When my son is down or going through a horrible, painful episode, I sit back and offer to help if he asks, but just watch for severe behaviors that will harm him or others, then take calm action. Hope this helps! Oh, also, when your sister is in the hospital, think of it as your respite time. You get to relax and not worry because you know she is safe. Take that time without guilt. This is the time to relax and build your strength. And talk to others going through similar things - and use humor like I have my Robbie Stories I share that are funny things he does. Laughter is the best stress reliever, so never feel disrespectful or guilty for using it as a coping skill.


#4

I’m sorry for your pain. Many family members just shun their loved one with the illness. I hope my younger daughters have the same care and compassion for their older sister that you do. Learn as much as you can about the illness. And face it head on.
Family-to-Family


#5

You are partially correct.She will probably never again be the person she once was. It’s sad but true. But she is still a sister, and a human. It will be hard but you will have to accept her; it may be damn near impossible but she got dealt some bad cards just like me and everybody else on this site. And we have to make the best of it and survive.What else can we do?

Another sad fact is that we cause are families so much grief. We may not be doing it on purpose but schizophrenia is not only the worst mental illness there is but it is one of the top 10 disabling diseases in the world. No one asked for it of course.

I got diagnosed with paranoid schizophrenia in 1980 at age 19. In the beginning my case was severe and I caused my parents much heartache, probably more than I’ll ever know. But they stuck by me. My first year with schizophrenia was spent in a group home for schizophrenics. I barely survived.After I got kicked out of there I spent 8 months in a locked psychiatric hospital. I didn’t know at the time if I would ever get out. I suffered horribly. But I got out and I was accepted in a Residential Treatment House. I lived the a year and near the end I got a job. Now 30 years later I have been at my current job for 5 years, I take online college classes, I drive my own car and live by myself in a nice studio apartment.

My life is good sometimes. No one could have predicted I would get this far. But if it weren’t for my parents and my two sisters helping me I probably would have nothing. Family support is invaluable, for me and others with this terrible disease. I don’t have any concrete answers for you and your sister but my humble message is that sometimes we recover. Things change.

It’s always worse in the beginning. It may be years before your sister gets better. But she is still in there somewhere even though she is suffering. But miracles happen sometimes, she may pull out of it later in life I wish you and her good luck. Hopefully someone else can give you some concrete solutions. But I just thought I would tell you a little of my experience.


#6

Please look at these sites:
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 on YouTube for more videos

http://ourhealthyminds.com/family-handbook/communication/Building-a-collaborative-relationship-leap.html
Building A Collaborative Relationship “LEAP”

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

(May 26, 2010) Professor Robert Sapolsky finishes his lecture on language and then dives into his discussion about schizophrenia. He discusses environmental factors as well as genetic characteristics that could apply to people who are affected. He describes schizophrenia as a disease of thought disorder and inappropriate emotional attributes.

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/

Early Psychosis Treatment center information in these two links
http://www.schizophrenia.com/earlypsychosis.htm
http://www.raiseetp.org/sites/
http://psychosisprevention.org/get-involved/education-center/finding-treatment/

Psychiatric Treatment Centers affiliated with Medical Schools in the USA
http://www.schizophrenia.com/psychcenters.htm


#7

Keep up being supportive. You seem a nice person, your support will mean a lot. Your sister will bounce back. She just need the right medication. But I wouldn’t be forceful with her in this regard. Keep being a friend.


#8

I don’t know if this’ll help at all, but I’ve read into symptoms similar to those of your sister before, where the person affected believes that people in their lives are being replaced by impostors.

It’s called Capgras syndrome. I don’t really have any information on hand I can give you but maybe having a look into it might give you a better insight into her condition?

Hope this helps.


#9

Bobby starts talking about schiz at about :24. Loose associations are thought by some trauma (as in PTSD) researchers to be expressions of “splitting” or “fragmentation” traceable to the repeated, overwhelming “shocks” that “blew” the patient’s mind “apart.”

In non-schiz PTSD, the fragmentation is usually displayed as inability to recall specific visual, aural, tactile and/or emotional memories… and as a result, inability to make sense of the experience sufficiently to be able to “process” and “let go” of the “un-digested” material.

In schiz PTSD, the fragmentation is thought to be so extreme and so “fractured” into bits and pieces – and the fragmented memories so affectively (roughly “emotionally”) overwhelming or overloading to the emotion-processing center in the mid-brain (the “limbic” system) – that the patient can no longer associate those memory fragments “tightly.”

(The experts think this because they so often see this in the “pro-dromal” period that usually precedes the onset of classic or obvious symptoms.)

The trauma theorists also theorize that hallucinations are visual, aural and verbal symbols of the trauma.


#10

Bobby’s comments relative to “hidden blessings” are more accurate than inaccurate, but those who directly observe schiz pts a lot do see the logic of Laing’s and other’s argument from the point of view of behaviorism’s “functional assessment of behavior.”

However, while they see the ego-defending, protection-seeking function, most agree it’s way too extreme… and in the end, not ego protective at all. (The unmedicated, truly schiz ego is fractured, fragmented and dis-associated to the max.)

Most experts I know agree with Dr. S. that older pts move away from positive toward negative affects… or away from more manic or at least active expressions toward behavior that is very subdued, “compressed” and even catatonic. Some theorize based on various forms of scanning that the synaptic junctions (or neural linkages) in the limbic system just “wear out” from over-activity. Others think (with good reason) that long-term, medicinal dopamine suppression is the causal agent.


#11

Dr. S.‘s (and many others’) notion that schizophrenia occurs in odd-thinking young people people who are then over-stressed and “tipped over” into complete inability to “tightly associate” does hold water to those who have observed a lot of pts…

BUT… Those who’ve observed a lot of the parents and/or family dynamics around the identified pts also tend to argue for adoption of “strange logic” modeled by those parents or other significant players in the family system.

This notion goes waaaaaaay, waaaaaaay back (to at least Freud), though most of the original observers had to be very careful about how they expressed this view. By the late 1940s, however, authors like Theodore Lidz were all over it… and the Big Controversy began raging. Laing was among those who weighed in, along with Aaron Esterson, Donald D. Jackson, Gregory Bateson, Paul Watslawick, Virginia Satir and Jules Henry (in the first wave).


#12

Then, however, came the invention of chlorpromazine (Thorazine brand in the US), and the hard selling of schiz as purely genetic… because it responded “well” to the medication (albeit with nasty side effects for the next 30 years during the era of the “typical” anti-Ps).

The belief – and it was just that – that schiz was entirely (as opposed to partially, and often even minimally) genetic became predominant. (Big Pharma gots Big Money, ya know.)

Which is a shame to people like me who have experienced directly and observed first-hand what combinations of appropriate medication AND psychotherapy can do to help many schiz pts lead far better lives than they do on medication alone.

Okay. Off my soapbox.


#13

I,too, am going through this. I am now trying to get help for my third sibling with schizophrenia. My parents had given up on giving him help. His illness did not present itself until he was 36. It has been devastating to watch my brother and family go through this. I too get so depressed by this at times. Be strong. I have one child that is going to graduate high school and another teenager as well. The best advice I can give is to educate yourself and seek advocates. An advocate can be ANY one in your community. I was advised "if you had any pull within the community, use it. My parents tried to get him acceptable help for five years. I am a nurse and I can not believe the broken system in my state. You can always request a meeting with his physician. By law, they cannot tell you anything about their treatment, most of the time they will listen to what you have to say. The further I proceed, the further I realize that I have to go to court to see that he gets treatment and continues to. I must reach out the most I can to members of the community. I plan to become my brother’s guardian as soon as I can get the funds to do so. I have called NAMI about 15 times in the five months trying to understand what my options are at helping my brother. I have hit many barriers, all of which I grieve over. You only have to reach that one person that will listen. I have found that it has been involving a wonderful physician whom has treated virtually ALL of them at one time. I started to take control in this endeavor because my parents had given up and my brother just sat their in his own hell. His illness prevents him from seeking help. As, I continue I will be posting my progress on this forum. I also received help from one of our local prosecutors. I gave the name of the prosecutor to the physician and was able to get something in the way of a court-order for him to be forced to seek care. The laws on Mental Illness in your state weigh heavily on your options. It is a very tuff road. I would suggest someone be their guardian. This way the court and state agencies HAVE to allow you access to their medical care. A guardian can help. This is what I am currently seeking right now. I found the guardianship website in my state and it was very helpful. I wish you luck. Remember to take time for yourself in all of this. Be patient. It is a process.


#14

I’m sorry I didn’t respond earlier, it’s been a whirlwind here. My daughter got sick then my husband then I did, my husband and I are still sick he went into urgent care yesterday they said it’s bronchitis.

As far as my sister goes… that has been very hard. She has been missing for over 2 days now and nobody knows where she is. I’m very scared and sad, and I don’;t know what to do. I do want to thank everyone for their replies, it’s helpful to know that I’m not alone and that there is support here.

I don’t know how to find my sister, where she’s gone to and what to do. She won’t return anyones calls or texts and her ex boyfriend (that she lives with) has no idea where she went. She’s disappeared before but never for more than 1 night. She’s been gone since 5am Saturday.


#15

Thank you for giving me the name Capgas syndrome, I am looking up more information about it. She does have other delusions but this seems to be the most prominent one.