Tell us how you are today?


#523

@hope4us When stuff comes up in casual conversation - such as relating anecdotes, I don’t hesitate to mention things that pertains to my son. For example, if the subject is things kids did when they were young type stuff, stories about Jeb’s childhood come to mind just as readily as stories about his brother.

I don’t get all quiet, I relate the stories the same as I do his brother’s stories and I am going to keep on doing it. Jeb has had to forfeit so much in life, we have lost so much of our boy, we don’t have to give up his healthy times in our life as well.

Wow- I am all militant this morning. Its kind of amazing. Since no one actually responded to my Christmas card “outing” of Jeb’s scz, I am determined his existence in our life will not be ignored by anyone.

thanks for responding @hope4us


#524

I absolutely agree @hope that you should continue to include, honor and validate Jeb as a part of your lives, whether it is references to the past or currently. I understand that completely! I think that some people, even good friends sometimes, just don’t know how to respond when they are aware that things are not “normal”. This happens also when there is a death. But our loved ones are NOT dead!! I love how you often refer to your son by name. He is Jeb!! I would mention our son’s name on this Forum, but I guess I am still trying to protect him in the public arena. However, I have certainly have shared his story with a lot of people locally, so it’s not like his situation is a secret. I want to be an advocate for persons (and their families) with MI, and to help get these conversations more out in the open. I love how you share your life and your life with Jeb. Please know I care so very much.


#525

@hopeforus, i think many of us feel isolated when others treat our mentally ill children as if they do not exist. It is uncomfortable foe them, the key is ir is about them. I have a son who lives out of state. Family and friends ask about him and gis kids. Usually, I will bring up my daughter, and say something positive, like she is stable, bought something from the dollar store, sat in the sun, anything to say her name, reminding everyone she is a person who lives. I accept this is just who the people are. I don’t like it, but accept it. We are alone for every holiday, family all deceased oe out of state. I have had a couple of friends invite us, but know my daughter will not go, and I choose to stay with her. It does get lonely here.


#526

My son just recently asked about something he remembers from childhood. I need to take over his photo album so that we can reminisce about the good times, and not forget them.


#527

My son enjoys remembering and talking about his childhood. I visit him weekly and often we talk about friends from past years, or memories. His birth grandmother died recently and that brought forth a lot of reminiscing about the happy times he had at their house when he was small. I think it’s good for him cognitively to reach back into those memory vaults, and it makes for pleasant conversation when I visit. For him, I think it’s good to remember the “normal” times so he doesn’t feel too institutionalized.


#528

How am I today? I’m not sure. Things have been so variable, sometimes good/tolerable and sometimes really bad.

The most recent shocker (in a really positive way) is that my 22 year old son, the son who was absolutely fearless of anything in the world before he became ill, swam in the ocean despite his intense paranoia about sharks since his illness started.

This feels like that thing people talk about. That thing people refer to as “”small continual improvements over time”.

My son just had his 11th monthly injection of Invega Sustenna.


#529

YAYYYYY! This makes my heart so happy! 11 months is a long time especially when some days feel like an eternity. My post-work glass of wine just became a celebratory one :smile:


#530

That is awesome news!


#531

How am I? The days are good and full of distractions, the nights are quiet and I am in another sleepless cycle.
Lou was in the state hospital SoCal, and has been moved back to the court system for an evaluation of competency. He has been there almost six weeks. He was never charged with the assault which is a very serious one. Thank God the man he attacked lived. This sounds so horrible and my lovely son is not a horrible person, just the opposite, he is a very kind young man. A victim of our system, that did not receive proper treatment from his head injury.
One of you made a comment that maybe the longer the evaluation screening takes the better his outcome may be.
I am able to correspond with Lou, so I write him regularly, but it is a one sided conversation.
I know he is in good hands and being cared for so I focus on that. It still doesn’t keep me from wondering about his mental state. Very few explanations have been given us. One of the docs asked if we have ever talk about his mental illness with him, that is the only clue I have that he is seriously disabled.
Before this, we were able to call and talk to him as much as we wanted and the conversations were good. So just rambling on to you all, it keeps me from a meltdown and spares my family the extra anguish.
My daughters (both adults with family) and hubby are very supportive, I minimize my anxiety and sadness with them, it does them no good to think their mom is not okay. Thank you all for letting me post AnnieNorCal


#532

I’m so sorry you are going through this. It could happen to any of us with our loved ones. Ramble away as much as you need. I’m glad you are writing him letters, I bet that helps him more than you know. Huge hug to you Annie!


#533

I will watch that movie ,my sons not doing good tonight he bought a big bottle of vodka , passed out in the kitchen , I took half of if the bottle away from him , I’m just watching over him so he’s ok :sob:


#534

I wish every day I had my sons difficulty’s and god make him better :sob:


#535

You are so kind to ask how we are all doing. Life is such a roller coaster. I was fine and last night my husband and I took my son to a local ball game here in town. It was my son who asked if we could go since it was fireworks night. We picked him up at his apartment and got there no problem. We had great seats right down front and all was well until the 4th inning. My son got up and said he was going to the bathroom. He was gone a good 20 minutes. It was crowded so I assumed he was waiting on line and maybe picked himself up a hot dog or something. I checked my phone several times just in case he got lost. He texted me at one point and said he wanted to go home and wasn’t feeling well. I inquired further and he told me he was having an anxiety attack. My husband and I dashed out of our seats to find him and brought him right home so he could take his anxiety pill. It was scary being in a stadium with a thousand people and wondering where he was. It all worked out ok but the feeling of sadness has taken over me and I cannot shake it. So that is how I am.


#536

He’s ok now woke up and went to his room but broke a small table in the kitchen because he was so drunk


#537

Tonight I’m thinking about my son and wishing I could fix his brain. I just want him to be happy.

This is going to be such a long road.


#538

Hi everyone!

I haven’t been posting regularly, but you might notice an uptick in me putting :heart:s on all of your posts while I try to catch up on what everyone has been up to! I hope all of your summers have been lovely so far.

My brother moved in 2 months ago and things seem to be going fairly well. He has had the occasional fit that lasts less than 15 minutes or so where he seems to get annoyed about something, but gets over it just as quick and is fine the rest of the day. He seems to try to take himself outside for a smoke break and I’ve heard him pushing around the garbage bins, for example. Overall, nothing broken, nobody hurt, and that’s what’s important.

His new PDoc wants to try adjusting his meds so we’ll be trying that out this weekend. He’s currently taking zyprexa. She’s replacing clonazepam and lowering propranolol and adding depakote. Does anybody have experience with depakote? There are 2 kinds Delayed Release (DR) and Extended Release (ER). Supposedly Medicare covers one, but not the other. I was wondering if one is better than the other?? I tried asking the pharmacist and after passing the phone around their office 3x simply told me his insurance will cover the DR type. Not a very clear answer…

I’m a little nervous about this change, but we’ll be trying it out over a weekend when my husband is home. My brother seems to have less mood swings when there’s a male presence around.

We’ve been pretty busy these past 2 months. My brother moved in and we are now his primary caregivers (not guardians or anything so far), my kids are on summer break, my husband helps as much as he can when he’s not working, and I started taking college classes again. With all this going on, I managed to receive A+ grades the last 2 semesters! (2 of those were in upper division sociology and history classes) Sorry for tooting my own horn. I’m an introvert and I normally don’t. I come from a very proud family who ooze inflated senses of superiority which I find annoying. But I thought this was truly an achievement out of the ordinary. I posted for my family and only one person bothered to say anything which was a simple “congrats.” :face_with_raised_eyebrow:


#539

@calicakes

I think you are pretty amazing! Adding your brother to your home and high grades? Hard to believe it’s been 2 months already. Well done you!


#540

It’s so great to hear that your brother is doing well in your home. I imagine it was more than a bit nerve wracking when his mood was unstable, so I really hope the med changes can help. Has the idea of trying oral Invega been brought up, so he can possibly then go on the monthly Sustenna injectable? That would make things so much easier for you all.

That’s so fantastic that you’ve been doing so well with your studies! Toot that horn!

You and your husband are angels for doing this work. The world needs more people like you.


#541

Great news all around! Happy to hear it! Love that you are taking classes (toot, toot!):smiley:

About the medication change, I think the clonazapine is calming. My sz ex husband used it and liked it. I wonder why they are taking him off it.


#542

I’ve been off a few days. I saw your son was in the hospital. How is he doing now? I have a feeling my son will follow similar patterns. At the moment, well he’s sleeping. So that’s a good thing.