I am going to GA next week to pick up my son. I live in TX. He has been in a residential treatment facility for the last 6 months. I’ve been living my life on pause since March and now I get to push play.
I am really nervous about having him home. His diagnosis is paranoid sz. He is in denial and is saying whatever he thinks I want to hear so he can come home.
My manager is great and I will be able to work at home for at least a month to get him settled but it’s still nerve wracking.
He is 19 and has no joy anymore. I am trying to wrap my head around the fact that I am bringing home a stranger. He isn’t my little boy.
I am rambling because I really don’t know what to expect and I am a person that craves organization and structure.
We are driving home from GA so we will have lots of together time cooped up in a car.
I just needed to write out a few things that i am nervous about.
I would try to remain calm when you get him. Even if you have anxiety on the inside (for good reasons!), projecting a calm attitude may help him m relax, too. You both need time to readjust to him being home. Good luck!
Dr Amador’s book “I’m Not Sick, I Don’t Need Help” can give you have some structure for organizing your conversations with your son if you want to give that a look.
If he likes fast food you could stop frequently and take it to go - at that age mine would have eaten and slept through most of a car trip.
You may find that he does too as well as far as daily routines. Try to keep your anxiety in check as best as you can. My experience has taught me that it is sometimes better to say nothing until I’ve had a few moments to to process my thoughts and responses. It’s okay to have boundaries, a MUST for me and my son.
Good luck and keep us posted and how things are going…
My son is also 19. He had his first episode of psychosis in February. He was hospitalized and probably released too early. He went back to the hospital but a different one. He got relatively stable for about six weeks and suddently over the last few weeks the zyprexa is no longer working. We are trying to medication. This is a very stressful journey. I try to remain optimistic but it is easy to feel alone when other people really can’t relate unless they have walked a mile in your shoes.
I understand the anxiety of not knowing what to expect and the anxiety of voices tormenting your child but not always knowing what the “voices” are saying.
Our kids are the same age. I would love to chat by phone if your interested. It’s nice to know one is not alone and to share ideas and offer support. If you would want to chat send me an email at avidreaderamy@comcast.net and we can connect by phone. Good luck with your son and keep us posted.
My brother doubted whether he was actually experincing a disorder, or if this delusions and hallucinations were part of reality.
The knee-jerk reaction is to become frustrated or upset when someone is irrational. It took a long time for me to realize that expecting rational conversation with someone suffering an episode (however long) was just as rediculous as expecting an injured person to want to go for a run.
Establishing trust is the first battle.
The DX’d (just like anyone else) can put on a tough exterior and ignore symptoms. They won’t tell you what’s going on in their head when they fear reprisal or consequences. They view commitment to a facility as punishment for being different.
They won’t realize that putting up barriers with you, socially isolating themself, and refusing treatment is hurting them. They also won’t realize that this is common to people with Sz who attempt to avoid treatment and self-medicate.
Try to be upfront about your desire to help them attain and sustain a good quality of life and some true self-reliance. They deserve those things and can definitely get them.
When they complain to you about things that bother them, or wishing they could have something they don’t, treat it as an opportunity to ask them why things are going how they like.
Often, these struggles are very much rooted in their own choices and their own lifestyle as much as they are in their disorder. Help by recommending lifestyle changes that bring about good quality of life:
Hygiene, routine, responsibility, organization, productive hobbies, etc…
When they refuse these recommendations, or quit on them, point it out in a respectful way.
“I’m not going to try to force you to do anything, even if I think it will help. But if you don’t exercise, you won’t get to feel good about how you look.” Or similar.
Just maybe, your son will experience what my brother experienced, that his disorder really was capable of interrupting his own plans and attempts at having a fulfilling and happy life. Maybe he will come to you to ask for help reducing his symptoms so that he can actually enjoy his hobbies, rather than hide from them or become too distracted to have any fun / get anything meaningful done.
This did take my brother years. And he certainly still struggles with symptoms (both obvious, ‘positive’ symptoms and subtle ‘negative’ symptoms). There are lots of angles that require time, effort and learning to overcome with Sz. But it starts with the DX’d having someone close by who they feel like they can trust when their disorder convinces them not to trust anyone at all.
Do it by being dependable, rational, and emotionally stable. Avoid getting angry with their symptoms (especially their delusions and paranoia).
A calm “I really don’t think everyone on Facebook has time, interest, or money to personally stalk you. You’re only that interesting to me, and only because I’m your Mother.”
Reassurance like that early on in the development of a delusion can be all it takes sometimes. Other times, it can be long months of calm reassurance and patient understanding that they have a disorder that actively undermines their peace of mind and their happiness.
And keep in mind that their disorder also actively tries to convince them that they are sub-human, and that their family doesn’t like them. So be cautious about how you word necessary judgement like, “Your room is a mess!” They will misconstrue it in all kinds of hurtful ways.
Don’t worry, you’ve got this.
It takes practice, but you can be the kind of trusted ally he needs to see through all of the confusing emotions and delusions.
And just because he is irrational sometimes doesn’t mean that he doesn’t deserve to have some boundaries. You need to be mindful of your own quality of life and peace of mind, too.
If I could redo my daughter coming home from the hospital for the first time after forced hospitalization, I would keep everything very simple. I would wait for her to talk, and use the LEAP procedure from “I am Not Sick, I don’t Need Help” if she did talk. I would say things like “good morning”, “good night”, “I love you” and anything necessary like “Are you ready for lunch?”, “Is there something you need?”. If I had a concern, I would phrase it like I learned at NAMI support group: “I am concerned that maybe I don’t understand why _______ is happening?” (Like if I wondered if she noticed she was talking so loudly she woke me at night, “I am concerned as I don’t understand why the talking is so loud in your room at 2AM, as it wakes me up”.)
By talking way too much to her (or AT her as it turned out) she pretty much completely stopped talking to me for months, as she was already mad at me about being hospitalized. I didn’t really understand what HAVING schizophrenia was like… socializing is very hard for her.
What does the residential treatment facility say about his release from the program? Hopefully, they have worked with him to help him recognize his illness and how to manage it. Have they involved you in the process? Do they offer ongoing support? But to be prepared (and it is useful for all kinds of situations not just non-medication compliance) yes, read the book “I Am Not Sick: I Don’t Need Help”!!!
Thank you for that insight. I have been worried about the communication aspect of him returning home. Before he was hospitalized and for the 1st 3 months he would talk to me but now he wont. I don’t know if that is because he doesn’t want me to change my mind about picking him up or if he is mad at me. But I will take my time and try to keep it simple.
The therapist and I both agree that there isn’t much more they can do to help him. He is firmly rooted in denial. As for continuing support, I have had to set up that on my own. I do have appointments with several doctors and will have a therapist lined up soon.
Often when they are “firmly rooted in denial” they are actually suffering from a symptom of their schizophrenia called anosognosia. 60% of people with schizophrenia suffer from anosognosia, it’s also called “lack of insight”.
Some people like to say “they are too sick to realize they are sick”. It can be confusing for the family as insight can fluctuate just as the illness fluctuates and cycles. Sometimes I will think my son has some understanding that he is ill, most of the time I can clearly see he does not know he is sick.
It’s sad because so many people get frustrated with their family members with scz (schizophrenia) as they believe they are in denial. Worse yet, many therapists and doctors who don’t specialize in scz don’t know about anosognosia. Everyone gets frustrated and the sufferers can’t help their limitation to understand they are sick.
That’s where the book I mentioned before gets its name. “I’m Not Sick, I Don’t Need Help” is what they actually believe to be true. The book is a good place to start getting help communicating with them when they suffer from anosognosia. Dr Amador has several lectures in YouTube - they are free to watch and he is an interesting speaker.
Our family members with anosognoIa are tricky to get and keep on meds. I hope that you are able to keep your son on his meds.
My son had stopped talking with me and the methods in this book got him talking to me again.
Thank you for the insight from your experience with your brother. I am trying to get into the frame of mind to be calm and stable. So many things went wrong so quickly that my knee jerk reactions were not very nice. I am hoping that the drive home will allow us to at least get comfortable with each other again. I realize that it will not be ‘sunshine and roses’ but I am really hoping its not a tornado. I will make sure to stop before I blurt out my frustrations and work on the positive reinforcement. I am going to get the book that several people have recommended as well. I really appreciate the advice.
Thank you. I am going to definitely get us both on a good eating schedule when we get home. And its most likely going to be paleo-zone. That has worked for us both in the past.