Totally. I actually really like drinking liquids, autistic people like to drink more water than the average neurotypical. My mom would joke uneasily with me as a kid the following: “What are you planning to do, live on water and air?” Then I would laugh or grin and be like, “Yes.” That was like, since I was 2, lol.
I’ll admit I’m controlling, & I’ve been trying to manage my son’s illness for a long time, & I’ve been disappointed so many times that I’m not trusting the doctors & case managers to help - and I keep telling them they’re wrong.
But, I’m also starting to feel like they think I’m part of the problem, and maybe I am. Not that I’m making him psychotic, but that I shelter & protect him to the point he’s not getting the help he needs.
I can accept that, but I’d be a lot happier if they just bluntly told me instead of spoon feeding me hints that I may or may not pick up on.
Anyone else ever get that idea from the doctors, case managers, etc?
Or, am I being the paranoid one now?
I seriously wouldn’t even be upset - I’m just not comfortable when people hint at stuff. Just come right out & tell me!
Next time I talk to them, I think I’ll be blunt & just ask straight out.
Risperadol is closely related to Invega. It is used as an antipsychotic. It can cause involuntary movements- such as tongue thrusting and lip-smacking - and it is common to take cogentin with it, as well as with Invega. From what I understand these movements do not necessarily start when a person starts taking the medication, but can develop over time, so the cogentin is likely being prescribed as a preventative. My son’s pdoc prescribed it but left it up to my son to decide if he wanted to take it.
I get what it’s for - it’s just convincing him to take it when he’s saying he doesn’t want or need anything.
They are going to try to add some kind of mood stabilizer too according to my last conversation, but I don’t know what or when.
Another pill probably won’t go over well. Last night he was saying I must have every disease in the world.
I asked him what diseases he thought that meant, and his only answer was loneliness.
So sad… its just heartbreaking to have to stand by.
I thought that about schizoaffective when I first heard the word. I thought it must be schizophrenia lite. Nope, after hearing parents talk about their children’s struggles with schizoaffective - nope, not at all.
The only thing good about schizoaffective is it doesn’t have the automatic stigma attached to it - even if it can be worse.
You can say bipolar, you can say psychosis, you can say anything, but to people who don’t know someone with schizophrenia, just the sound of the word can immediately bring so many bad thoughts to mind.
It’s sad too because the bipolar/manic/mood parts can be so much more aggressive & scarier than what I am starting to think of as the schizophrenic part.
I asked my family member’s case manager to be direct with me about any of my behaviors that might affect my family member’s recovery negatively.
That’s a good idea - I’m going to do that.
It might be hard to hear, but I guess I need to hear it.
It was hard to hear.
At Family to Family an older mom told me to always say bipolar, she said people are okay with bipolar. We need a lovable character with scz in prime time television.
When my son is wildly psychotic, its a lot of angry energy.
I say bipolar sometimes - then feel incredibly guilty.
I shouldn’t have to be ashamed of my son’s condition - no one else has to be if they have a family member with anything else.
I have said he has suffered “brain damage”. When they ask how, I say “the first time he heard auditory hallucinations was immediately after the surgery”. Which is true. I think it was a coincidence. He was prodromal in the years leading up to the surgery. Even more so those final months. We thought the lethargy was from his physical condition. I was in the recovery room when he woke up - he woke up super agitated. Hours later he told us about voices he was hearing outside his door.
It makes me feel guilty to not say schizophrenia too. For years we thought it was his transplant meds causing the problem. When people I want to be honest with ask, I say, “well what did I say last time we talked? Things might have changed since then.”
My husband’s mom was oddly mentally ill, the whole family was pretty much in denial about it - but, then again how could they know? She had always been that way. I met her older sister once many years ago. My mother-in-law drove me out to this remote trailer home. At the time I thought the sister had just woken up and was maybe an alcoholic or something. Now I recognize that fuzzy, trying to concentrate, expression in my son.
I thought my mother-in-law was a mean spirited person her entire life. She would always cause trouble by telling people I had said things I hadn’t. She would spend days shut away in her room, alcohol played a big part in her life.
Now I suspect she was “hearing” me say the things she said I was saying. How sad, we had no idea. Now it all makes sense.
I asked my mother-in-law’s last remaining sister if she thought the other sister had schizophrenia. She said at the time she thought the sister had an alcohol problem, but now with everything that’s happened, she believes both her sisters had schizophrenia. She also thinks her oldest son who died of a drug overdose in his early 30’s,after years of addiction, suffered from schizophrenia. She wishes she had known.
Big hugs to you. I would push for the shot earlier and try 25 mg Benadryl at night for sleep or if he gets upset. It irritates me that sometimes the harder we try, the less the docs appreciate us.
I was in the waiting room today listening to Other patients (mostly young this time who had just been released) from the hospital. Everyone of them said that hospital stays are dictated by the insurance company now. They felt that and witnessed several patients who are clearly not ready but whatever those insurance papers say they tend to go with. My son’s doctor actually had to go back and push a little harder on this last visit because he was clearly not ready to be released.
I’m feeling a bit cynical tonight but realize that some people have it so much worse.
Hope, That is just so sad. So do you think the stigma of MI is better or worse than it used to be or just different?
My son hears people say things they don’t.
He’s having a hard time adjusting to his new case manager. I reminded him how much he liked the last one, even though she was only helping him for about 6 months. He said “yeah, but sometimes she whispered I hate you in my ear.” I’ve also witnessed countless times where he things people have said something they didn’t. Sometimes he misinterprets, but a lot of the time they didn’t say anything.
I’m sure that was what was going on with your MIL too.
I think I read on NAMI that the new PC term for severe MI is brain disorder, which is true, but somehow feels like you’re candy coating things. I’d like a kinder word, but I also don’t want to act like I’m ashamed of him or trying to hide his illness.
My son could probably swallow a whole bottle of benadryl & not even blink.
Yesterday, they told me he was getting 1 mg Risperdal, 3X a day. I guess I’ll call tomorrow & see if anything has changed.
I’m also going to ask if I can order pizza in for the entire ward this weekend. My son is not overly happy with most of the food there, he can’t smoke and he can’t go outside. There are 14 rooms, so 28 patients plus 6 or so staff members. Dominos has 5.99 pizzas, and it would be well worth $100 or a little better to brighten up his weekend.
My son is double insured - I don’t know that they’ve ever pushed for him to be released. To be honest, it would be stupid to do so because he’s been coming back every other month. It would make more sense to get it figured out.
I will sometimes just say he has a mental illness and leave it at that. Not so much ashamed as just exhausted from dealing with the illness to try to explain it to someone.
I have worked for a dentist and yes there are a lot of health issues that can stem from poor oral health. A growing area of concern is ‘dry mouth’. Many meds have this as a side effect. While it seems minor, it can exacerbate decay. And this may sound silly, but if brushing teeth is a struggle, rinsing the mouth with plain water will at least get some of the bacteria out. My son had never been a pop drinker until lately, and he won’t go to the dentist. That being the case, I told him it is better to have one glass that you just drink down rather than sip it all day. If he does this, well that is a whole 'nother story!!
Yeah, I get you completely. One of the doctors even said “LEAVE,” several times to me and that I should see a therapist so that I wouldn’t get depressed or stressed and not be with someone who would blame everything on me and that blames everything at everyone but themselves. He was right, but sometimes so is love. I’ve fought really hard for us. Sometimes I realize I’m being controlling in the way that I want him to do things, but it’s just because I want stuff to be clean or I don’t want him to get hurt. It’s really hard. You get tired sometimes. It’s true that I am the girl that is trying to change him, but I know for a fact that he wasn’t always like this. He was different, kind, driven, passionate, tidy, energetic, understanding, healthier, analytical, and artistic. He wanted to go to college. He wanted to things. He wanted to teach me and share things with them. He felt like he has a purpose. Now all he does is write health guides on how he thinks people should live their lives. On a good day we’ll record a song together when he uses my piano and I’ll hold the phone for him. Lately he’s been writing poetry. Sometimes he even sings. Those are the little sparks of brightness and hope that you see and look for. Sometimes, when things are bad, every day things feel like miracles.
But simultaneously, I’ve realized that it’s OK to be controlling, because I’m actually directing him in a good position. A few days ago he said he actually was starting to feel happiness again in his life. I want him to continue feeling that every day of his life, I want happiness, hope, dreams, and success for him. Even if it’s not with me someday, I want to be the person that helped and train him to be the person that I know he is, because he’s told me and everybody else has told, and I see it too. It sounds easy to say, but it’s not easy at all; with patience and enough time, we can control the power the illness takes over our loved ones so that slowly they can begin controlling it themselves and they decide what they want to do, not what something else tells them. This is so that they can differentiate what they hear or see from reality. Motivate them and make them do things. Make them go out or clean their rooms. Get them a hobby or a good therapist. And don’t just tell them to do things, do it with them so that they don’t feel alone. It’s good to have a support system, they of all people need that the most. My fiancé says the voices and halluciantions are “raping” him. And gusss what? He’s not wrong. Schizophrenia is a form of mental, emotional, and sometimes even “physical” abuse on the person to themselves. They need just as much as help as someone who has been bullied or abused physically or sexually in any form or matter. They matter. They all matter. And it’s time to start discerning the illness from who they really are; I truly believe that.