How many of you have an unmedicated family member and what's happening today?


#387

Hi oldladyblue, I feel tired for you just thinking about the sleep deprivation involved on your end. My son seems to be thriving, thanks for asking. Hasn’t been evicted yet, didn’t reply to my texts but did do what I needed him to do. His sibling saw him briefly and reported “seems fine”.

Mainly, I think we are trying to relax and enjoy this respite. So far, there has always been a new normal on the horizon. Trying to get some sleep to be ready for it.


#388

@NeverTooLate Have you read the book “I Am Not Sick; I Don’t Need Help?” if you believe that medication would help your loved one. The stories of unmedicated persons with SZ who do well are pretty rare, I think. But each person is different and it is good to investigate all possibilities for quality of life.


#390

My apologies - somehow this turned into a rant.

So frustrating that anosognosia being a symptom is not better known or understood. I know that you have expressed this frustration in other posts.

When my older child with high functioning autism was in elementary school, the teachers wanted to talk about his knowledge and high scores. We would want to talk about his progress with his social skills. They would go silent.

Nowadays, when I talk to my younger adult child’s psychiatrists, they always want to marvel at his retained cognition. He is an extremely well read college graduate with a strong background in math and science. Glad they seem to take such pleasure in the rareness of his retained cognition with scz, at least someone does, because he can’t take any pleasure in it at all anymore. To be extreme - my emotion here is like I am presenting them with a dead rat and they marvel at what a pretty rat it is. I use the rat (apologies if the rat community feels slighted -totally unintended) as it feels like they see my son as an interesting specimen due to this retained cognition issue.

While his last psychiatrist does seem to be correct that within certain perimeters he is having “success” living on his own working part-time with ssi and ssdi making it possible, trying to feed himself on $147 a month. BUT - what if meds could make it even better? His paranoia has him living in constant fear -come on people!! How can the laws keep ignoring my son’s suffering? My son’s life is one crucial step better than life on the streets - and that’s not good enough in my mind.

His most recent doctor wanted to stress how much better he was off than many- I felt as though that doctor doesn’t see him as an individual.

I think its criminal that the laws keep me from having him medicated. He would never choose to be unmedicated if anosognosia wasn’t in the way. The laws have moved but, so far, here, they have only to made it easier for judges to order meds for the frequently hospitalized or jailed. My son is neither.

So little is known about anything medically when the brain starts misfiring, its exhausting.


#391

Well, yes, I am confused. But no worries. You bring out the importance of ruling out organic causes of what appears to be mental illness. I was frustrated that it took over 2 years before a doctor in-hospital finally agreed we should do a CT scan and MRI on our loved one (perhaps unfortunately, there was nothing abnormal in those tests). A friend’s teenage child was diagnosed with SZ at first and it turned out to be another rare illness but he is doing fine now. But there were identifiable reasons to question the original SZ diagnosis.


#392

I think that you are probably right that in some ways this group is slanted toward the people who have family members who: have anosognosia; and/or are med resistant. It makes sense. Those who have family members who are having a greater level of success will not be seeking out the support that we find ourselves needing.


#393

Just want to comment -

guardianship does not need to come with any expenses. I went thru the county mental health office and paid NOTHING in the entire process.

After that, I was able to act as my son’s representative to get him food stamps, SSI, and Medicaid.


#394

My son won’t take medications either. He won’t get formally diagnosed. He won’t work because the voices chastise him and say people are going to kill him. He seems pretty normal most of the time but his conversations with me are getting to the point where I want to leave.


#396

I am in Canada (FYI, cause the laws differ from country to country).
My daughter did not understand that she had psychosis & could not be convinced to see a Dr.
In the winter of 2017, I went to the court (again, same as in 2015) & applied for the court order, in order to hospitalize my adult daughter. Important: I had to explain to the Judge that she was a danger to herself & family, otherwise they do not take the matter seriously enough. I said all the right things & got the court order.
With the kind help of the police, she was hospitalized the same evening. This was her second court order hospitalization. As opposed to 2015, this time we were lucky, she got a good doctor, who would not let her out of the hospital without a CTO (in Canada: Community Treatment Order). She has been on mandatory monthly shots since spring 2017 and is doing well: taking classes & working part time. My beautiful daughter now does understand that she had psychosis & openly talks about it, but she still believes that she can now go off the meds. The (same) Dr will not let her off the CTO (thank you, Doctor!)
(The 2015 hospitalization did not do much for her, since she was released with just a prescription, but without a mandatory monthly shot; however, the 2017 medical record did help to build up her SZ case.)

So far, since last hospitalization, we had a great life.
In any case, I will be ready to fight again and will start all over, if needed.


#397

How am I today ,well we went to London eye , my son hasn’t left the house to go as far as the corner shop to get alcohol ,he went on the London eye ride ! But I gave him a drink to calm his anxiety , he got tipsy on the way home and the rest you must know :slightly_frowning_face:went down hill , my bad :sob:


#398

I am sorry, it must be very tempting to help him with alcohol at times.


#399

Yes it is , he’s fine one minute and then the next he’s throwing himself on the ground? I don’t understand :slightly_frowning_face:


#400


#401

I want to cry so much I’m so exhausted and I want my son back !


#402

I will cherish these pics forever my dream came true :heart:


#403

And he looks so happy!


#404

Yes he does :sob::smile:Thankyou for your reply this forum helps me so so much in difficult times when no one else understands​:pray:t6:


#405

I’m glad the London Eye happened for you and your son. I’ve been on that attraction, so I know that’s no small feat.

My son has been swimming in the Atlantic, sharks and all. :slight_smile:


#406

Thankyou day by day I’m still overwhelmed can’t stop crying


#407

And good your son is doing all the things like swimming :heart:


#408

Thank you, Hope, for your response. I hope your son continues to thrive just a bit more at a time, so he can maintain. My daughter got fired from her part time job again. I don’t think she even understands that she was fired… she seems to be so angry all of the time. I actually slept last night from 10 pm to 6 am without having to get out of bed. That makes twice this month so far: an improvement.

I do understand your feelings about the laws, and the fact there seems to be no improvement in anosognosia without meds. I too feel that my loved one would WANT to be medicated IF she understood she was ill. It is awful watching her inability to observe her own behavior as odd. A simple thing like walking around the block with me and the dogs tonight turned into a disaster when we ran into another man on the street and she went all paranoid.

Sigh.