Family and Caregiver Schizophrenia Discussion Forum

Dealing with anosognosia and.. the system


#1

UJust an update, but I will try to keep it to the point and no venting.

I am in Canada
My mom and my 47 year old brother both have sz, but i concentrate on my 29 year old daughter.
In 2015, I committed her to a hospital, but they let her out in about 3 weeks while she had no insight. I was shocked as it was obvious that she wont be taking medication
I went back to the unit after her release, told them that she is not taking medication and asked what should i do. They said (off record): “wait till she acts out weird in public, and hopefully some one will call the police”

I was reluctant to apply for another court order as it damages my relationship with my daughter, but in January 2017 i again had no choice. She was committed, scared and mad at me.
It took a couple of weeks for the doctor to process things and start her on medication. She has responded well, surprised the doctor with her progress and was released 6 weeks later with a CTO (community treatment order – involuntary monthly shots).

While she was in the hospital:
– I visited her daily even though in the beginning she refused talking to me and sent me away
– I talked to her doctor and nurses as much as possible, although tried not to become a nuance :slight_smile:
– I brought cinnamon buns and other treats for the unit staff daily or almost daily
– when my daughter got better, and we started going for walks, I told her that none of it was her fault as she thought that the court order was my way of punishing her for something. Now, a few months later, she still has no insight and i will have to continue working on explaining my decision to her.

– as soon as she started taking pills (involuntarily!), I started paying her $5 a day as suggested in “i am nit sick, I don’t need help”

Now, as we approached the month of May, she is doing much better. She got a part time job ( which actually is very stressful for her, but she always was very independent). We are getting along nicely. She still has no insight and doesn’t associate her progress with medication. She believes she is fine and doesn’t need her monthly shots. She is hoping to stop them as soon as the CTO runs out

The CTO is only good for 6 months at a time, and then they have to have another panel. The process is very costly for the doctors and nurses, but that is the law. My goal is to make sure they keep her on CTO as long as possible, i was told they commonly keep patients on CTO up to 3 years, but 6 months at a time.

She lets me come to her monthly appointments with her doctor when she gets her monthly shots. During the appointments, i stay mute until i get a chance to trigger a subject which helps the doctor to see that her anosognosia is still very bad. (Although she has partial insight and understands that she had psychosis, but thinks she is now perfectly fine and will not get worse again)
The meeting with doctor starts with the initial small talk ( how are you? I am fine, got a job, blabla), but her doctor seemed to pay attention when I triggered the subject of no insight and she said that her improvement has nothing to do with the medication. Unfortunately, I later found out that the doctor made no notes of this. I find it very frustrating as her CTO will run out in a few months and they need to document the reasons why she must stay on medication involuntarily for way, way longer!

I had a couple of appointments with the social worker who told me i was smart, on the right track, a good mom, and generally made me feel very good, but i don’t want to be flattered. I want help for my daughter. I want REAL help.

I have a few months before the next panel where they will decide if she needs to continue involuntarily monthly shots. Untill then, i will listen, learn and work on my relationships with the staff at the unit. Just before the panel, i will actively provide them with facts and the information that she is not yet ready to be trusted to stay on medication. I will make sure they put that info in her file.

If needed, I am prepared to tell them that if anything happens to her, i will hold them responsible.

That’s the plan…

Please, friends, let me know what do you think? Is there anything I didn’t think off?

My daughter’s application for AISH ( financial help) has been denied, although i did send them a letter explaining her symptoms and our struggles. In my letter, i did use the key points provided in one of the previous posts in this forum. The social worker at the unit told me that I should delegate the appeal to herself (the social worker). Should I delegate to the staff or should i push it myself? That is my other dilemma…
(My daughter is very reluctant to appeal because (remember?): “I am not sick, i don’t need help”. But she is stressed out as she doesn’t make enough money, while the doctor told her she should NOT work more than part time)
Please comment if you have any suggestions or ideas

Stay strong and focused.
Good luck to all of us.


#2

I would not delegate the appeal to her as she won’t do it either because she believes she is not sick and does not need the help or as we have found paperwork is too daunting and does not get done.
And I commend you for being prepared to tell anyone who is listening if anything happens you will hold them responsible. Stay her advocate as much as you possibly can.


#3

Thank you for your support
By the way, The social worker suggested to delegate to her, meaning the social worker herself, but not to my daughter, that would be pointless We know that much:)


#4

Yes on delegating any type of application for aid to the staff; they know what they’re doing.

Here’s the problem that all of us are facing: there are many, many people in need of the same court ordered help we seek for our family members.

The doctors and court are not basing their decisions on how sick our family members are or how much insight they have, but on how many people are more ill, more vulnerable, and less likely to survive without intervention.

Help and resources are extremely limited here in the US. I hope it’s better in Canada. Often, if a person with SMI has supportive family, the system will not step in unless the person is truly endangered or endangering others.

Because there are people much more ill and with less support than our family members, our family members might not receive court ordered treatment. That doesn’t mean they don’t need it.

I would not make any type of demand or threat as these do not fall on deaf ears; the doctors and professionals understand all of this. Resources are severely limited. This illness lasts a long time. Your daughter is working part time; that is an incredible accomplishment and they will note that in her favor if she wishes to be released from the CTO.

If she goes off the medicine and becomes very ill again and loses her job, you will have a history of non-compliance with medication resulting in dysfunction to show the court.

I hope everything goes well for both of you.


#5

Ahhh. That makes much more sense!
If the social worker has good written communication skills, I would take up her offer. (Not all do as I discovered reading my son’s recent discharge paperwork). Not really sure how you can find that out tactfully…


#6

“The doctors and court are not basing their decisions on how sick our family members are or how much insight they have, but on how many people are more ill, more vulnerable, and less likely to survive without intervention.”

And therein lies the problem in my opinion: We have to wait until they are in a dire situation to get help. If someone presents to the ER with chest pains they are taken seriously and not told to come back when death is imminent. From all the reading I have done, I am under the impression each psychotic break does more and more damage. Sigh, I know I sounds bitter, but the past couple of months we have been getting nowhere fast and are just waiting for another crisis.


#7

" Your daughter is working part time; that is an incredible accomplishment and they will note that in her favor if she wishes to be released from the CTO."

This is the scary part. She will definitely say that she is fine. They will take her words and discontinue the cto and we will be back at square one.
However, when I opened the subject of anosognosia during our meeting with the doctor and my daughter clearly stated that she doesn’t associate her improvement with the medication, and that medication does nothing for her, this information did not get recorded in her file.
This is why i am looking for ways to influence their decisions


#8

That’s why someone here (SLW actually said this) said we have to know the law in our area. We need to learn to say the right words at a right time, and this is what i am personally trying to figure out…

I took a note for myself as an example:

"has been gravely disabled, unable to protect himself from harm and incapable of providing consent for treatment "

“The person (i) has a mental illness and that there exists a substantial likelihood that, as a result of mental illness, the person will, in the near future, (a) cause serious physical harm to himself or others as evidenced by recent behavior causing, attempting, or threatening harm and other relevant information, if any, or (b)
suffer serious harm due to his lack of capacity to protect himself from harm or to provide for his basic human needs; (ii) is in need of hospitalization or treatment;and (iii) is unwilling to volunteer orincapable of volunteering for hospitalization or treatment.”


#9

It’s a huge problem. The analogy most doctors use is waiting to treat cancer until it’s Stage 4. Obviously, it would be better to treat as soon as the illness begins. They know 100% for sure that the earlier the treatment of psychosis disorders, the better the outcome.


#10

I agree that you should ask to have your daughter’s CTO extended due to her anosognosia and need for medication.

I’m not trying to talk you out of it. I’m just trying to let you know that if it doesn’t happen, it doesn’t mean the doctors and other professionals are not doing their jobs. So, if you can try to see it from their POV, maybe it will be easier for you to communicate with them and get a better result?


#11

Yes, i see what you are saying

Somehow I need to get them to make a record in her file that she doesn’t associate her betterment with the medication and doesn’t believe she needs her meds.

How can it be done if the doctor listens, but does not make a note of her not understanding the need for the medication? He only wrote down that she has improved and got a job.


#12

@Never_to_become - from very experienced members of my support group, I was given the advice to use words like that.

Luckily, I’ve never had to do it. He is not one who pretends to be well when he is evaluated. By that time, he has such an urgency to talk about what’s going on in his mind, that he doesn’t hold anything back.

And, he’s usually went 5 to 8 days without sleep, so you can look at him and see it too. He paces like a fiend, but still appears to be about to pass out on his feet.

I hope my advice helps, but I wanted to be clear about my experiences. Let us know if it gets you anywhere.


#13

You’re doing a fantastic job caring for your daughter. Here in the UK we find it helps enormously to be part of the care team, the psychiatrists and nurses really do respect that. And sticky buns, what a great idea, especially as the staff have such a demanding job. I wonder how many of us could do what they do.

On the subject of financial help, here in the UK the purse strings are also being tightened significantly. Even though I write very detailed letters about how difficult life is for our daughter, she has always had her initial applications for benefits rejected by the UK bureaucrats. We’ve always handed the appeals over to her mental health support team, and they’ve managed to get the decisions reversed. As somebody else has already said, let the social worker handle the appeal as he/she will have done it many times before and will know how to present the case. Why not ask her social worker how many appeals she’s done, and how many she’s lost? Of course, it can do no harm to also write another letter yourself, as a supporting document, detailing and justifying exactly what your daughter’s financial outgoings are, and show how she would be bankrupt and destitute without support from the state.


#14

For now, i am just planning to include some of these wordings in my notes, just parts and phrases. Here and there.
I find that we do need to use the right language and jargon.


#15

From your comment it sound like you have to keep reapplying for the financial help…

Is it how it works in UK? Is the help limited to a certain period and you have to reapply?

Thank you for your support. I have to be at the hospital today for the reasons unrelated to my daughter, and i will take the cinnamon buns to the unit. This is now a different hospital and different (outpatient) unit.


#16

If there is a change in circumstance, then we have to reapply in the UK. So if our daughter becomes well enough to do some paid work, she comes off aid. But inevitably her condition will worsen, she’ll have to give up the job or be laid off, and then she has to reapply for aid.

New UK governments always have great ideas to reform welfare as it’s a good vote catcher, and reforms always mean having to apply for a new type of aid. If I was at all cynical, I’d say it’s a good way for government to get a few more people off welfare and into the gutter. Surely not you say, we’re the UK, we’re supposed to be a wealthy country … but in reality so much just gets swept under the carpet and not talked about.