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Writing on the Walls


#21

Yes, we have ACT in the larger cities. Part of our relief is that Jeb now lives in a part of the state where such services are available.

Where we live now, he can only get services if he goes in and asks for them.

The odds on Jeb getting on meds went up considerably when he moved.


#22

It would be really great of there were ACT in MA.
I’ve never heard of it.
Can you tell me about it


#23

One of the earliest signs I noticed when my son was going into psychosis (of course, I had NO idea what was going on) were his facebook posts. He’d post gibberish, not real words, and if they were real words, they didn’t make sense. Looking back, I should have gotten him help right away then but I just thought he was partying with his roommates or something like that.

Sometimes one of his friends (back when he had friends) would respond - you OK buddy? And things like that.

He still keeps little notebooks and occasionally I see what he writes. It doesn’t make any sense to me now either, but I’m sure it does to him.


#24

http://www.namihelps.org/assets/PDFs/fact-sheets/General/Assertive-Community-Treatment.pdf

I’ll also know more when it starts. Good luck


#25

Thanks so much :slight_smile:
I looked at the ACT website
Looks like it’s geared towards healthcare professionals. Though there might have been resources for families.


#26

Hi,

I think it’s spelled agnosomia - damage to the frontal lobes.


#27

You are correct that anosognosia results from physiological damage to brain structures and makes a person unaware of their illness. It is a neurological disorder.

So sad that many people are still unaware of anosognoisa and how the brain damage impacts their loved ones with scz.

Way too many people believe their loved ones “are in denial” rather than understand their loved ones have damaged brains and are not capable of understanding they are sick.

I really need to remember to mention that its from actual damage scz has done to the brain.


#28

Principles of Assertive Community Treatment

Assertive Community Treatment services adhere to certain essential standards and the following basic principles.
Assertive approach. ACT team members are pro-active with clients, assisting them in participating in and continuing treatment, living independently, and recovering from disability.
Attention to health care needs. The ACT team provides health education and access to and coordination of health care services.
Community integration. ACT staff help clients to become less socially isolated and more integrated into the community by encouraging participation in community activities and membership in organizations of their choice.
Emphasis on vocational expectations. Emphasis on vocational expectations. The team encourages all clients to participate in community employment and provides many vocational rehabilitation services directly.
Family support and education. With the active involvement of the client, ACT staff work to include the client’s natural support systems (family and significant others) in treatment, educating them and including them as part of the ACT services. It is often necessary to help improve family relationships in order to reduce conflicts and increase client autonomy.
Highly individualized services. Treatment plans, developed with the client, are based on individual strengths and needs, hopes and desires. The plans are modified as needed through an ongoing assessment and goal-setting process.
Long-term services. Long-term services. ACT services are intended to be long-term, due to the severe impairments often associated with serious and persistent mental illness. The process of recovery often takes many years.
Primary provider of service. The multidisciplinary make-up of each team (psychiatrist, nurses, social workers, rehabilitation, etc.) and the small client-to-staff ratio help the team provide most services with minimal referrals to other mental health programs or providers. The ACT team members share offices and their roles are interchangeable when providing services, to ensure that services are not disrupted due to staff absence or turnover.
Psycho-educational services. Staff work with clients and their family members to become collaborative partners in the treatment process. Clients are taught about mental illness and the skills needed to better manage their illnesses and their lives.
Services are provided out of office. Services are provided within community settings, such as a person’s own home and neighborhood, local restaurants, parks and nearby stores.
Substance abuse services. The team coordinates and provides substance abuse services.


#29

I didn’t know that…wow!
This must be one reason a person can “know” they have scz and then later, not “know”.
Thanks…

I’m aware now.


#30

It’s so tricky Squid. Some can be in denial - but anosognosia is present in 60% of people with scz and 40% of people with bipolar.

People have reported their loved ones gaining some insight back through meds. Scz can be so different for everyone.


#31

Also found in people with Alzheimer Dementia. In the beginning they know ‘something is wrong’ but as the disease progresses they lose the insight. Brain diseases are devastating to the people who have them and those who love them.


#32

Yes - good point it was accepted by the medical world in dementia first. I think that’s what helped me understand that anosognosia was real - my MIL had it with her vascular dementia.


#33

Hi Hope,
You’re. Right, I was the one misspelling.
Her denial 9f her illness and responsibility to it was seen as willfull hubris when the truth is, I’m pretty sure thst she has damage to her frontal lobes, literally denying her the ability to have insight about her own situation.
This is a vastly underdiscussed topic in mental health fare today. I think many, many schizophrenics have anosogomnia. I’ve seen it mentioned in online medical excerpts from forward thinking Researchers.
But blame, resentment, shaming, callousness is often reaction of caregivers, from both Family and from Professional Psychiatrists who feel the patient is being obtuse, ungrateful, immature, and or/ attention seeking.
Even malingering !!!
It’s brain damage , Folks !!! Family members become furious at the schizophrenics
" Difficult personalities and refusal to help themselves. "
Psychiatrists wait in vain for the schizophrenic patient to Thank-them for their efforts while Medicare may not adequately reimburse them.
And said Psychiatrists might chasten the schizophrenic patient for hoarding things in their pockets or room or bureau, infuriating nursing and housekeeping staff, while wondering , wondering what it will take for the unruly Schizophrenic patient to stop doing that and face reality !!!
They can’t, folks !!! They have brain damage that’s not even acknowledged yet by mainstream psychiatric modalities !!!
In the meantime, the schizophrenic patient becomes a " burden " to the Mental Health System. So far out there that the over medicating on say, Thorazine, seems like a good ldea.
Hey, have you seen a patient have the " Thorazine Shuffle ? "
I have and it’s a TRAVESTY that should be OUTLAWED.
And furthermore, while I very much appreciate this forum, the requirement to " earn " merits is a bit annoying, since my CONSTANT CARE of A CHRONICALLLY ILL MENTAL HEALTH PATIENT IS MERIT ENOUGH !!!


#34

Thank-you so kuch for your detailed summary of ACT. Mos5 helpful.


#35

I agree with everything you wrote - I have been appalled by the number of professionals dealing with people with scz and they have never heard of anosognosia!!

How can this be? But is is.

Thanks for the rant - surely your merit issue will resolve soon? Are you still limited in some way on this forum?

Thanks again!!


#36

Hi Hope,

Big agreement on your response. Thank-you, :smile:.
I know, it is somewhat appalling, and yes, I ranted. Oops.
I think the limits on what I can be authorized to post here are confusing. I know I got an " Editor " badge, yet was unable to edit tonight’s post and came across as a doofus who couldn’t spell or grammar to save her life, though I tried a few times to edit my egregious misspellings.
For some reason, is now working fine.
I was laughing inwardly at the condescension involved in receiving a " badge " for merely editing a post !!!
I’m coming from posting daily on a political website that neither requires badges, merits, or " earned privileges , " but rather lets individuals comment freely and at length. They are supported entirely by their membership.
I began to wonder if the Betsy Devos camp or a similiar entity, i.e A Republican based group, had funded this site due to the " earned privileges " emphasis.
Nonetheless, I appreciate this site.
Boot strap mental health consumers !!!
I know, I know, I poke the powers that be endlessly.
I should watch that. ( Not going to " watch that " AT ALL. )
Sorry Not Sorry.
I think maybe the merits issue might be resolved when I enroll in the MA plan that reimburses caregivers of the mentally ill. They DID send me valuable information after I waited the requisite twenty minutes online listening to muzak interspersed with periodic messages Thanking me for being a valuable customer.
I really appreciate your introducing Agnosognia
( and I’m STILL not spelling that right !!! ) to this forum.
I’m glad that I live in a state that considers caregiving to the mentally ill something worth paying for, consequently lessening the influx of chronically ill patients to State Hospitals and Halfway Houses !!!


#37

evoltwin11,

We all love a good rant around here. Nothing is appalling - deeply sad, angrily frustrating and “crazily” unbelievable are what we all deal with every day. Makes us feel better when someone expresses the emotion we are all feeling.

No worries about our administrator/s, they have been quite understanding about emotions getting pretty high on the family side of the site. At this point, I have to conclude that they are pretty poke resistant. They have been great about giving us freedom to express ourselves. Sometimes, newcomers to the forum have been shocked about how much freedom we are given here.

So sorry you couldn’t edit, once again no worries, sometimes a great rant needs some “running away with too much emotion to edit” moments. Getting the news of anosognosia out to the world has been the mission of Dr Amador. He seems to be working as hard as he can to establish it’s presence in the medical world.

You have spotlighted an important problem with anosognosia - the fact that families and PROFESSIONALS are clueless about the problems it causes in providing proper care for our family members. Most of us think of Amador as a method of communication, a way to reach out to our family members who we have shut out by not understanding that many of them have no way to comprehend they are ill. The brain damage is in the way. Horrors to think of them being chided, belittled and disrespected by professionals. Of course in a country that has seen jail as plan A -for decades- as the answer for those with severe mental brain diseases… If they started locking up the cancer patients, people might object.

My favorite Amador video is the one where he uses a woman in the audience as an example. He basically tries to convince her she is mentally ill. Powerful way to send the message. If someone tried to convince me I was suffering from a brain disease, well, I know I am not. My son is as equally committed to the belief that he is not suffering from any sort of brain disease. YES its the brain disease itself that keeps him from understanding. Have you had a chance to catch Amador’s videos on youtube?

Recently trying to contact the local Social Security office to make sure they processed Jeb’s change of address, the miserable repetitive hold music stopped after about 15 minutes. I was glad until I realized that it might mean they had disconnected me.

I have a friend that totally loves the merit badges sort of thing. She makes me want to keep stickers on hand that I could mail to her from time to time, it would make her day. She is currently excited about an Olympic competition in her knitting forum. They will be awarding medals - that’s all I know.

A few weeks back I had a cake floating next to all of my posts, I had no idea why -turned out it was my “cake day” -my one year anniversary on the forum. My sports forum has yellow cards and red cards. The admin folk hand them out for bad behaviors. The yellow card is a caution - just like the game, the red card makes it so you can’t post for a while. I really don’t think we have anything like that here. Of course I didn’t know about the cake thing either.

Thanks, so glad to chat with you!


#38

Well there always are boundaries in our home–no foul language or violence or gross social misconduct, we have learned to overlook the rest.
We have both a sz and AD family member so the last 15 years or so have been a trip. Prior to that time, we did not really have daily contact with mentally ill. In the beginning, and still with some family member now, there was a sense of “come ON…grow up and stop being such a pain” It is a learning curve for sure.


#39

You are welcome.

The cost of ACT team per year in my state is $9,000 - $12,000. Incarceration is $30,000 - $60,000 (NY) per year.

“The average cost to deliver mental health care inpatient was highest for Medicare and lowest for the uninsured: schizophrenia treatment, $8,509 for 11.1 days and $5,707 for 7.4 days, respectively; bipolar disorder treatment, $7,593 for 9.4 days and $4,356 for 5.5 days; depression treatment, $6,990 for 8.4 days and $3,616 for 4.4 days; drug …”

Based on the numbers alone, I look for more and more states to implement this ACT treatment, don’t you?

We had private insurance for our son but early on most of the good Pdocs didn’t take insurance so it was out of pocket and then insurance companies were supposed to reimburse. That never happened with Humana (due to incorrect coding according to them). I finally found a therapist for my son who had experience with SZ and one day while I was sitting in the waiting room, he shared that hadn’t been paid by my insurance company. I used that time to call my insurance company and let them have it. I gave the phone to the therapist and they got it straightened out. It was like six months and I reminded them I pay promptly each month and suggested they do the same. It was a year of hell as you can hardly process the diagnosis itself and I remember when I did my taxes, it was $14,000 in mental health treatment for my son that one year.

Every doctor kept telling me to file guardianship and get him on SSI. I was reluctant. Our son was barely 20 at the time, had plans for college, and it was the hardest decision I had made.

We sought out advice from a professional who bluntly said "unless you have an extra $250,000 (lifetime) to put toward your son’s care, you need to get him on assistance so his medical is covered. We finally did and it was not denied.

In my opinion the state hospitals have been the best consistent care for our son. On private insurance he barely stayed two weeks. On several occasions he was not even clear when we picked him up.

The social worker at this state hospital is the one that recommended the program. She had remembered my son from his earlier admission/s.

I am hopeful for a better outcome and recovery for my son. I hope the same for every person on this forum.


#40

It is really depressing when you look at the past and how they treated mentally ill patients. It is horrible and I’m amazed the field of psychiatry has been allowed to continue due to this alone.

However, can you imagine the mothers of the past who had to endure what we do and then on top of that were blamed for causing this illness in their children. This thinking went on for years.