Anosognosia. Do the Seriously Mentally Ill know it?

January 4, 2016 by  

Anosognosia – “lack of insight” or “lack of awareness” – is believed to be the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications”.  It frustrates their families  – and is often devastating to the mentally ill.

Once a person is stabilized and released from 24 hour supervision, he/she often does not have enough insight into his/her own condition to recognize the need to stay on the medication – and out of trouble, homeless or in prisonSo they often refuse treatment*, leaving families to fight with the system to get them the care they need.

This is a big problem.   But it isn’t the only problem. 

To better understand them,  over the interim I’ve had the education of a lifetime sitting across the table from mothers like Deborah Geesling, who started MOMI (Mothers of Seriously Mentally Ill) advocating for appropriate treatment for her own seriously mentally ill son and others.  Here is a snapshot of their experiences — in their own words:

  • “Our son has been in this system since he was 21 yrs old. He’s now 39 & we have watched him deteriorate progressively all of these years because of inappropriate care in this system.  Treatment has been deplorable!  Nobody seems to take the urgency seriously. [The most pressing need is] finding my missing SMI son. When he’s located, finding appropriate supervised long term care for him. Improve communication with my son’s providers so his family can be an integral part of his recovery process.” Cheri
  • “Our daughter’s diagnoses are bipolar and borderline personality. As an adult she has the say so in choosing her own medications, which are not always the best ones for her. This creates havoc in the system since she’s the only one to authorize which medications along with the doctor’s consent…” Joy
  • “[Greatest need in system] is hospitalization until [a person is] stable in crisis.  My main concerns revolve around an incident/occurrence of illness in 2013 that continues to impact us all and what it takes to receive appropriate and effective treatment.  I feel my [37 year old] son ended up with additional physical illness and jail due to failings in the system and all the hoops one has to jump through to get help in crisis.  He was discharged when still ‘raving manic’, released to transitional living [an apartment on his own], and now has a felony for disorderly conduct.”  Karen
  •  “There is help buried out there if you can dig it up.  But who has a shovel?”  Nadine
  • “Our SMI son has Refractory Schizophrenia and doesn’t respond to any meds.  He needs alternative treatments, but they aren’t covered.  He has an individualized treatment plan but doesn’t get it.”  Jeralyne
  • “HIPPA laws are used as barriers [to not communicate with families].”  Deb
  • “I’m a grandmother with custody & fearful for my child’s future. [The most pressing need is for] life skills training.  My biggest concern is transitioning from the Children’s System to the Adult; We have experienced some horrid things while my child was in a DDD group home setting – Human rights violated time & again  – no t.p. even with diarrhea.  He’s been placed in hallways on gurneys for up to 16 days – at PV and St. Luke’s.” Rene
  • “My brother has Schizo-Affective Disorder and has spiraled down and been homeless since August 3rd.  [He’s on] unreal, inappropriate doses of meds-they’ve been switched around.  Case managers at Terros have been nonresponsive – they can’t handle the caseload.”  Marlene
  • “Treat us like people.”  Bruce
  • ““We are constantly told this is only temporary. And, every 60 days we pretty much have to justify why we think [our son] still needs to be [in the group home]”…”The system makes the parents and families feel like it’s their fault. And that homeless shelters and jails are actually appropriate and good options of care and housing.”  Deborah
  • “[Most pressing need is an improved] discharge process for inpatient facilities for minors with private insurance (AHCCCS gives 14 day notice vs private insurance which gives none) and better coordination between AHCCCS and private insurers for dual enrollees.”  Dave
  • “Over-medicating. [The system should be] slower to ‘over’ medicate, quicker to add supportive resources.”  Dawn
  • “Due to the shortage of Psychiatrists here, centers like Bayless are employing Nurse Practitioners to act as Psychiatrists.  I discovered how dangerous this is….I was suicidal for weeks at a time and started cutting myself.”  Kurt
  • “Change the stigma.  [How about] Brain Disease vs. Mental Illness.” Nadine

See some common themes?  Laws that do harm rather than safeguard mentally incapacitated persons, stigmainappropriate treatmentoverprescribed or disrupted medication, lack of qualified professionals, case management and coordinated care, improper hospital discharges, inappropriate placement facilities, homeless & imprisoned mentally ill, lack of group home oversight, difficulty navigating the system, lack of communication – with family members and finally, being treated with respect and as an individual.

On the flipside, there are good things happening for many receiving behavioral health treatment in Arizona, too.   Arizona has many dedicated, caring treatment providers and social workers and integration of physical/mental health care is promising.  But…we can no longer ignore a system that is not working for the 4-6% of this group with the MOST serious mental illnesses.

The human cost and the financial burden of inappropriate care borne by society is too high.

While most persons with a mental illness do not threaten public safety or act out violently, the research indicates non-treatment of mental illness often does.  We saw yet another example  of delusional behavior ending in murder this week in Phoenix.  Here’s an excellent read on the subject from the MOMI (Mothers of Mentally Ill) blog.

Thanks to all of the families and advocates whose voices are represented above – WHO HAVEN’T GIVEN UP  – despite one harrowing experience after another.  Also, thank you to the volunteer members of the Human Rights Committees – providing day-to-day oversight the treatment those with mental illness receive.

Because of your tenacity and with your ongoing help this session and over the coming months, many of these system flaws are being addressed.

 (* A right current law protects unless under court order, which requires a person be deemed a danger to self or to others).



5 Responses to “Anosognosia. Do the Seriously Mentally Ill know it?”
  1. Alicia Renkema says:

    Reading these comments makes me realize just how long we have gone as a nation with these problems and how much company I have (even though I often feel alone) in my agony. My son attempted suicide twice last summer after being in the system since 1998. Other than utter discouragement at a continuing psychosis which no medicaiton anymore seems to help with completely enough, he had just been told that his doctor whom our whole family loved was moving to another clinic. So, five days later was his first attempt ever. She was the only doctor he had ever had who actually embraced our family in the adutl system. That is such a horrific statement about our system. His second attempt was just a month later. He was actually without a doctor (until we finally followed this special doc over to this clinic where she went that was much farther away from us), for about 6 weeks. His previous clinic actually told me that they didn’t have anyone he could see! Of course after he got out of the hospital they had to arrange for him to see someone per the 72 hr. rule about being seen after a discharge… I even go in with my son to all of his regular medical appointments due to his paranoia about the visit and the fact that he is continually hearing voices despite his medication and he does take it; he is just medication resistant which so many with SMI are. Mental health professionals (including the doctors themselves as well as the providers) need to become much more educated about mental illness — some of these professionals (I hate to say it) should not even be working within the system. My son has received some very shoddy care over the years by many case managers who did not do home-visits as well as several ACT teams which didn’t do anything either except we had one good nurse who would regularly talk to my son over the phone. She was a true blessing but that was the exception and not the rule. The most important needs I see that should be addressed are trifold: Decent psychiatric hospitals. Currently there are none in my son’s and my opinion and he has been in 10 hospitals within our state. As someone else mentioned above, without stability there is no foundation on which to build so these folks with SMI can get better. The second area is definitely allowing key family members in on the treatment. I have my son’s mental health power of attorney and have even had to fight for it to be honord. It is unfortunate that one has to “know the right people” to get things done and have proper treatment. The final area but of most important for me currently is having a true option in our state of Safe permanent housing for SMI individuals to go and live where it is properly managed by folks who are dedicated to caring for people with these kinds of disabilities. In our state we have wonderful places for folks with Alzherimer’s; Downs Syndrome and Austism — even some with a dual diagnosis. But if one has SMI with no drug or alcohol use there is no place to go except a very temporary residential facility and from everything I have heard and read many of those facilities are not managed / superived very well. My son and most with SMI (if not all) definitely need excellent supervision as well as much TLC.

  2. Julie says:

    Oh, Nancy! What a relief to know you are tackling this issue. Our son made an attempt on his life 2 days before his 18th birthday. Two days later we were cut off of his care, in the name of HIPPA. What a disgrace to the government to keep helpful, caring family members at bay. Our son still wrestles with mental illness, only now, he does so alone.

  3. Susan says:

    Thank you Sen. Barto,
    I am Deborah Mihalik’s mom. I pray for our grandson every day and for my daughter and family. There has to be something we can do to help the SMI. Please keep me updated on what is going on. Deborah is so busy we hardly get to talk.
    Please don’t give up.
    Thank you again,
    Susan Mihalik

    • nancy_barto says:

      Thank you, Susan. You have an incredible daughter in Deborah. We wouldn’t be this far along if it hadn’t been for her persistence – and your prayers! God bless.

  4. Thank you, Senator Barto, for increasing awareness around the mental health crisis here in Arizona. Like numerous others, my family has been seriously affected by the lack of mental health support for an adult child who is seriously mentally ill.
    I work with Grandfamilies, like my own, who are raising grandchildren. With sufficient supports, many families could stay together and many of our mentally ill would become more productive and self-sufficient.
    Please, feel free to contact me if you believe there is anything I can do to support your efforts.
    Thank you!

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