Family and Caregiver Schizophrenia Discussion Forum

New to this nightmare


#1

Hello, I am new to this… My sister’s nightmare just begun within the past month. A PHD student life has been dramatically altered… we had our second episode a few days ago which landed her in a mental hospital here in New Mexico. I have begun my research on this disease which led me here. I just want my little sister back. I hope to find comfort here with families who can relate. Is there hope for a future with this disease? Will she be capable of living on her own again?


#2

@Sharen welcome. I am so sorry that you and your family have to deal with this illness of schizophrenia. There is always a possibility of your sister regaining her stability and being able to live on her own again but you and she are very likely a little ways off from deciding that yet. Everyone is different and every situation is unique. First things first though–getting a good doctor for her that will work closely with her on a good medicine protocol is first, then it will take some time to for her and you to process the changes and differences this illness entails. There is seldom any quick fix. Your sister is lucky to have you in her corner. So long as you have a good doctor working to find the best medicine that works for your sister and so long as she can be as compliant as possible, there is always a great deal of hope for remission of symptoms. An important factor to consider with this illness is stress is an enemy. So some lifestyle changes might possibly be needed down the line to ensure the least stress that is possible and still live as normally as she can. Support is key for both of you individually to stay strong and focused. This forum has a wealth of stories and information that you might find helpful and/or enlightening. I am glad you found it. Best wishes to you and your sister.


#3

Thank you so much. The exact words I was hoping for. She just called me and seems very upset… The facility she is in makes it almost impossible to talk to her. Luckily she calls us. She is irritated you can hear it in her voice and indicated that not even a therapist has spoken to here since her arrival two days ago. They administered medication and she nor we the family know what was administered. We live in New Mexico and I have been googling and searching for a facility that would benefit her needs primarily, however everything surrounding us is more for substance abuse patients. She even indicated that the people she has met there are all there for substance abuse. So my biggest fear is that they are simply sedating her and not helping focusing on the problem at hand. She is unaware of why she’s there. Her confusion is what is upsetting her I assume. I just feel helpless they allow visitation for one hour a day and the facility is two hours away. Another issue is getting power of attorney over her to get her a better doctor. We had to hire an attorney who can’t see us until tomorrow (Friday) and with out the power of attorney we are unable to request any information move her to a better facility. That’s the obstacle we face today.


#4

The beginning is the hardest…it is only (hopefully) uphill from here. I hope you find the right place and the right doctor for your sister. Keep us posted. You might want to check out this web site. —> http://nami.org/# Hopefully there is a location in or near your area, They are a wealth of resources and information as well as free education and support.


#5

Sharon, I’m sorry that you are going through this but I’m glad you found this forum. I have found it to be very strengthening and comforting knowing other people are getting through this and I’m not alone and neither are you. Your sister has every chance of recovery and it is slow in the beginning and it just simply takes time. It takes time to accept this diagnosis. it takes time to find the right doctor and therapist and try to do both and realize that not everyone in this profession have the patient’s best interest at heart. We have found a few good doctors who have made a difference.

I would definitely get your sister to sign the power of attorney to let you talk to the doctors in her best interest and that will help you be able to chart a course and get information to help your sister. The hardest part for me was realizing I can’t do anything for him that he’s not willing to do for himself. It’s a different situation I’m sure from your sisters and they really are all different and individual. Learn as much as you can and check in with us.

Often I will find good advice here and someone who’s gone before me at every turn. God bless your journey and know that it is meaningful work and it will test your resolve and teach you the true meaning of unconditional love for another human being.


#6

Hi Sharen,

You are lucky she was admitted, my brother was never hospitalized and my nightmare is that he can lie and get out of any evaluation. While shes in there, you have to do your research, call NAMI ask for psychiatrist and therapy (CBT) recommendations. You want the best person for the job. You need to get your sister to sign any and ALL authorization forms for you to work on her behalf, a power of attorney is perfect and worth every penny (I didnt get one because i found out too late about it and my brother doesnt trust me anymore). You should learn about the disease by googling Xavier Amador or youtube he has great lectures. This hospitalization will open the door for her to be eligible for outpatient programs in your area.


#7

Hi Sharon,

I think that recovery is very dependent on each person’s ability and willingness to both accept help/treatment and to do the work that’s required to get better.

I say ability because this disease affects the brain, and some people lose the ability to see that they’re sick and need help. That’s when it gets really hard, but it’s still not impossible to help people.

You sound like you’ll do a great job helping her find the right help.


#8

Thank you everyone for your help and kind words. It truly eased the stress and self blame and helped me sleep last night. We have another dilemma. The facility that she is at will not allow us to see her they told my father she is not making sense when she is talking and that they can’t get her to have conversation. Which she has been calling us and making sense to us as a family so I find it hard to believe. They then indicated that she would have to sign paperwork in order for us to see her. My dad argued “How could she sign papers upon her best interest if she is incoherent?!” The argument ended in him leaving upset. We have an appointment to see a lawyer today. and the facility told my father not to speak to one. What place can tell someone not to speak to a lawyer.? Its upsetting every time we try to call her they are unable to let us speak to her luckily she calls us. Praying I get a phone call from her today. I’m so upset. We are finding her a better facility and getting her proper help from individuals willing to cooperate with family for her best interest.


#9

My son is like that - he’ll be coherent with us, even if it is all about his delusions - then he gets so nervous around new/strange people, you can’t even understand what he says.

However, they’ve let me visit even when he was so out of it all he did was pace the visiting room like a track & mumble about his current delusion - even when he would not sign a consent to speak to me paper.

In my experience, if they want to be able to have you involved, they’ll let them sign the papers no matter how sick they are. And, I’ve been very lucky that everyone has wanted me involved so far.

Someone here gave me some good advice. Find out if they have a patient advocate or if he has a case manager there. Ask them to ask her daily if she will sign the consent paper so you can talk to them. Also, explain the difference you see when she talks to you & that you are afraid they will do more harm than good if she has bad social anxiety.

However, all things considered, I would be getting that lawyer too. It’s always best to be prepared. If nothing else, they could help you go to court and get appointed as her legal guardian or whatever you need so that the hospital has to talk to you.

Good luck with it!

If nothing else, taking action will help you with any feelings of helplessness.


#10

Hi Sharen,

Did they say Why you cant visit her? Have you showed up to the facility and they turned you away? Unless theres a restraining order then how can they keep you from seeing them? was she violent? I would recommend asking directly " Did you present her with the paper authorization to sign ?".
Also when she calls tell her to ask for the authorization to sign, and tell her to tell them that she wants to see you guys. Verbal consent also should work!
I would find a way to record the conversations, I have an application on my phone called Smart Recorder.
Your lawyer will appreciate that!


#11

Sharen,

I am so sorry to hear of your struggles and the heartache you and your family are experiencing in becoming acquainted with this thief of an illness. This forum has been a great respite for me personally with experienced family members of loved ones…and I have benefited from scrolling back in the history of previous conversations. As Catherine shared above, each of our circumstances are as unique as our loved ones, but we share a common path and series of struggles.

There are a few books out there that are helpful.

Catherine also suggested NAMI, and our state association here (I live in Montana, so our rural area provides unique challenges) has been very helpful.

I petitioned the court for guardianship of my 20yo son who would not allow us any access to any of his information (HIPPA), and received it on Wednesday of this week. We are working with our County Attorney now to petition for mandatory medication. It is a different situation than yours, but the mental health system is truly a challenge to navigate. Post, and post often…as the voices that chime in create a record to help the many that will follow behind both of us.

Praying for peace and a quick remedy to the challenges currently on your plate.


#12

I listened to all the advice and we got a lawyer and received temporary custody of her and we are working for full custody (my father did that is) The lawyer was able to produce the papers within hours for a pretty penny of course. We are headed down there tomorrow morning. My dad did drive a distance to the facility this morning and was denied visitation or any information about her they said that we are not allowed to tell her to sign papers that it had to be a non solicited decision for her to. How is she supposed to know to sign papers if it’s not offered to her?! Luckily we will present them with the court orders in the morning. I talked to her today. She seemed happier… maybe they balanced her out? I can’t wait to see my beautiful sister… soon… and her bright beautiful hair… Uploading…


#13

Sharen,

I’m so sorry that you’re having to tackle this and even worse, that this disease is terrorizing your sister. I wish I had asked the question, in this forum, that you did when our son was diagnosed five years ago. So, first, understand that you’re ahead of the game and reading does help. Be selective on what you read, though, the internet has wild and bad information outside of credible forums like this one. I found that reading helped me to understand the disease better, learn how to be patient and have a much deeper since of empathy.

Here’s what I would suggest for where you’re at:

  • If she’ll talk with you you’re way ahead of the game. I’d start with the book on “I’m not sick…” written by a brother (so a good perspective for you)
  • Get a diary of the symptoms and the prescriptions.
  • If you’re not having to tackle addiction too then you’re in better shape than many
  • Tell you sister you’ll help her to quickly get up-to-speed on the disease and best practices (low stress environments are better) you can pull from reading
  • Study and learn how to live in the moment and how to meditate and do yoga

I hope these initial thoughts help; please consider yourself hugged. The truth is that you can do this and you’re much stronger than you think you are. And, if you’re a Christian, know that God gives his hardest challenges to his best soldiers :slight_smile:


#14

Sharen, You are right to feel concern about the hospital your sister is in. Is the hospital she’s in a private and for profit hospital? What kind of hospital would tell a family not to advocate for their family member. My daughter’s most recent hospitalization was in a private for profit one and I did not like how the visits were handled. It felt like a prison and the folks who worked there sounded like amatuers. After 18 years of dealing with this with my daughter I have a sense of what a good mental health facility looks like. Trust your gut. Your sister is very fortunate to have such a caring family. IMHO this hospital is completely out of line.


#15

Since this is your sister’s first month of psychosis, she needs differential diagnosis for other health, organic, and mental health conditions that cause psychosis…

Any hospital is better than none if a person is a danger to self or others. Safety first.

There are so many causes of psychosis; I hope she is treated well and they find the cause.


#16

Goodmorning everyone,
Yesterday was an eventful day! My dad was granted custody of my 25 year old sister! And we got to see her! I guess I should have went into more detail the severity of this case: to make a very long story some what short, my sister is… was a PHD candidate for chemistry at the university of South Dakota where she also taught classes. She is highly intelligent. And lived a very normal life with a boyfriend Dog and her pet bunny. One day she just up and left her job boyfriend and residence to Arizona for no particular reason. She ended up on the missing person of America list once they found her car parked with all her belongings credit cards cellphone etc in the vehicle that didn’t look like a struggle. We went on a search for her a by the grace of God found her in Flagstaff Arizona… she claimed that was engaged to the lead singer of a rock band named Tool. And was very distraught… We took her home not paying attention to her illusions. To her uncontrollable laughing or mood swings,… to all the warning signs of psychosis. Things got worse and one morning she put a pot of water on to boil walked out the back door and went missing again. Hours later the hospital calls my family to inform us that my sister walked into the hospital somehow got passed security ended up in an operation room of some sort and started hooking herself up to an EKG machine. When she was caught by a nurse or doctor she told them she was trying to kill herself. This is not like her she was very happy and loved life before… The hospital was able to get her into the mental health hospital in another town two hours away so when they transported her there she pretty much checked herself in that’s why we were unable to see her or have access to her analysis. (Privacy act) the court granted us custody after the severity of her case was presented. While in the hospital awaiting her transportation she went into another illusion. Conversations with herself or in her head with someone named “Brandon”… They or her… were bonking blocks and collecting pyramids… hitting an dead end and needed to turn around… having a full on conversation with herself. as she was saying all this my brother by her bed side kissed her forehead. And she turned to him and said “you just made him mad” he allowed her to have her illusion… she went on to say to herself or… Brandon “he knows to much!, but he’s my brother!” And also a large gasp “they’re here!” All in a forty five minutes that he watched her. He was terrified and couldn’t move to record just allowed her to continue the illusion. Our father walked in and she said to him “are you the one?” He replied “what?.. baby I’m your father” … I know this all sounds like something out of a movie and I keep this bottle in because friends conworkers and people around me would probably think I’m making this up… I… just don’t know where to turn what to think I’m… scared… I miss my sister I pray to God every night that I can take her place…


#17

Sharen - none of that will sound like a movie to us.

And, it’s delusion, not illusion.

Your sister sounds like she was smart enough to hide everything until it got really bad, but hopefully she’s in a good place now where they can help her.

Just so you feel somewhat normal, here are some of the delusions my son has had in the past few months:
– Johnny Carson kidnapped him
– He knows all kinds of famous people, mostly actors/actresses/musicians, and they talk to him on a regular basis
– Both President Clinton & Obama talk to him through the TV
– He designed the Ferrari and a rocket made of recyclable materials that can reach outer space in 2 seconds. One of the rockets is at the Vatican (we are not Catholic or religious).
– He has millions somewhere because he has a deal with Coke, Mentos & he has written most of the shows you see on “Antenna TV”
– Not only did he write all the Bugs Bunny cartoons, he is bugs bunny, and he can go into the TV through one of the pixels

When he went into the hospital two weeks ago (tomorrow), he told the case manager who talked to him the next day when she asked him if he knew why he was there that the hospital was doing human trafficking and she had bought him.

Fast forward to today - they put him on Invega Sustenna injections a week ago, and he’s like a different person. He has some lingering delusions which is to be expected, but otherwise seems better than I’ve seen him in a really long time, so I’m cautiously optimistic.

Nearly 10 years ago, when he had the last psychotic break before this one, he had the same results with Zyprexa, but it took way longer - and that med kept him fairly stable until this year when it kind of gave out on him and he stopped taking it. They tried Seroquel first and it really didn’t do much of anything.

So, just wanted to tell you that story to say that if she gets on the right medication for her - and she stays on it - there’s a good chance she’ll get back to a good place. However, it sounds like she might have been under a great deal of stress even if she loved everything she was doing. She might have to accept that she needs to slow down a little bit.


#18

Oh my goodness!! Thank you! Prior to this event I never knew what delusions were! I never even fully knew what schizophrenia was or anything. It’s like something out of a movie and hard for me to grasp. Thank you! Thank you so much!! I’m so happy to have found others in the same unfortunate boat I am. And yes we assum the work lid she had as well as her experiment cases she conducted she must have stressed her self out beyond control. Upon her visit I braided her hair and she told me about all the arts and crafts she’s done as well as her preforming karaoke with the other patients. (She’s somewhat crowd shy) I was so happy to know she is doing better and told me that she feels a lot better. We still don’t know what medication has been administered. The facility nurses told us we would have to talk to administration on Monday to find out. I gave my sister a picture of her and I we took in the summer in Las Vegas and wrote on it “Lisa, I love you beyond words, beyond actions, beyond measures. You are never alone I am always here.” She was very protective of the picture holding it close to her chest and told the nurses they were not allowed to touch or see it" once the nurses saw the bond and love between us they became more cooperative. Informing me of all the activities Lisa told me about prior. Now when I called to talk to her this morning the nurse answered “Is this her sister?.. one moment ma’am” it’s such a relief and I am more at ease. I can’t wait till they give us more information and discharge her to us in a better state of mind with medication. From all the forums I read I feel better about her homecoming and I’m ready to care for her! Thank you all!!!


#19

Not like a movie at all, Sharen, most of here are very familiar with our family member’s delusions. And we have learned not to argue with them or attempt to disprove these beliefs.

Your love for your sister is so strong. Relationships are extremely important to healing. I’m glad she has you.


#20

Hey everyone! I spent the day looking into alot of the different stories and I am more at ease. Its like I spend my day and night constantly researching now. I woke up in the middle of the night from a dream of me researching. lol. My sister called this morning again sounding alot better. She still doesn’t know whats going on I assume. I told her that I found an online support group forum that is very informative and that there is a group for people that has went through what she has. I wonder what went through her mind when I said that. Or if she understands what is going on yet. So my next question is. How? How do I go about the situation. I want her to understand and accept that she suffers for schizophrenia. This is her first admission into a mental facility and the beginning of our long journey of recovery. I want her to take whatever medication they are giving her and come to the realization. Maybe even link up on the forum for sufferers. Nosey me went to check it out and I see that some of it is great support. Do you think it is a good idea for new SZ to interact with other SZ? Or am I just jumping the gun? How do others go about talking about what happened or the delusions or the conversation in general. I hope she understands and she can be helpful to others like you all have been helpful to me…