Mental Illness Recovery Support: Doing it Right
I'm a few days late with this post, but with good reason: we've been trying to orchestrate Ben's hospital discharge plans. Yes - after this six-week relapse, he is finally back with us (as of yesterday), in so many ways.
If you've been following this schizophrenia relapse, you know that this had been Ben's first relapse in over six years, and that it was precipitated by a too-quick-and-unguided move from a group home to independent living. Once he went off his meds this time, there was the danger he might not agree to take them again - and that, if he did, they might not work again.
Yet, here we are. I could cry from relief and happiness. For today, we have Ben back.
What Schizophrenia Recovery Looks Like
He wants to return to work, he is ready to sign up for college classes in the
[caption id="attachment_172" align="alignleft" width="170" caption="First Copies! "][/caption]
fall, he just bought a Bon Jovi CD at the mall and we're listening to it and singing along. The first copies of my book (Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope) just arrived, and Ben was there to watch me open the carton, congratulate me, and even take the first picture of author holding actual books.
I've spent a lot of my past few posts talking about how Ben's schizophrenia relapse could have, should have, been prevented - and will continue to advocate for those things. The treatment team members responsible for the slip-ups are now trying to work with me on solutions to keep Ben from having another relapse, and I'm glad we are finally on the same side. Still, the resources available in our city leave us little choice. "There are no beds anywhere." "There are no other programs that will give Ben the medical supervision he needs with the flexibility to go to work and school." (See How to Find Mental Health Services in Your Area.) But I will not give up. I keep looking for something that will provide Ben with more community than he can ever get in his lonely apartment - and, amazingly, he is willing to look with me.
Meanwhile, though, it was time to leave the hospital. So Ben will "visit" with us for awhile, as he keeps paying rent on his apartment. (Read "Dispelling the Fear of Care-Giving") This will buy us some time, and I can supervise his meds myself for now. It's transitional services, family-style. How many families do this forever?
Truly Supporting the Mentally Ill Makes A Positive Difference
Still - the miracle is that Ben is back with us. His personality is back, too. The meds worked again - this time. I can breathe again.
How did this happen, after all the mistakes that were made? I applaud the ones who helped him return and who allowed us to hope:
Chief Psychiatrist at City Hospital: who always returned my calls, respected my role as conservator and kept me informed, included Ben in all decisions, and consistently treated him with respect while being entirely clear about requirements.
Ben's Employers: who told me what a valued employee he was, how much they missed him, sent him a get-well card and gift, and - after six weeks absent (and they know exactly where he was) - are giving him another chance. Ben returns to work on Sunday and his employer offered to work around any sort of schedule the doctor recommends.
Friends and Family - who cared, sent cards. brought Ben Chinese food, and did not judge.
Friends in the Mental Health and NAMI Communities -who are looking out for other options and offering support and information. Ben and I may find some options his own caseworkers had never heard of. One of these is a wonderful place called Laurel House in Stamford, CT. I met them this week and am floored by their program, passion and commitment. More next week on them and others like them. Thank you for the hope.
Kaye, R. (2011, July 29). Mental Illness Recovery Support: Doing it Right, HealthyPlace. Retrieved on 2020, February 26 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/07/recovery-support-doing-it-right
Author: Randye Kaye
3 years ago our son I believed was spiked with a drug that resulted in his first hospitalization. Since then he has been admitted more times than I can count & finally I understand why.....and what our son had fallen victim to. Poor initial diagnosis, reckless reporting by multiple shrinks, and a series of blue collar errors & in competencies that where allowed to spiral out of control, and it appears is now being treated by medicating our son.
Police, ambulance, case workers, doctors, court houses, all suffered from very similar inflection...extremely poor record keeping & document control. Suffering a breakdown late December is NOT recommended.
The bias opion of treating mental health workers, police etc is that a person when suffering a psychotic episode, are unbelievable and unable to give accounts of events "prior" to there breakdown.
To do this would show true insight in regards as to what, why and when the first signs of distress began.
Robberies occur every day, some involve violent attacks, leaving the victims with obvious physically bodily harm. Police attending such a crime scene would consider the blood, bruising and state of the victim as "proof" that a crime had been committed. Without a witness, the accounts of the victim description of their attacker would be considered and the case most probable investigated, with information supplied to the attacker if progress was being made.
Reporting a robbery after suffering a psychotic episode is a different story. The latter we strongly believe happened to our son.
Giving details of his ordeal to the treating doctor [moderated] was the beginning of our families demise.
In the first discharge interview, the doctor described the details of the robbery he had been given as "a grandiose delusion, proving his physios, he's on an ITO, he has to take the medication".
That was the beginning of the end for our sons scholarship, social network and every other relationship we once taken for granted.
This unfortunately,sets the tone for treatment to follow....An unsubstantiated robbery is treated by unsubstantiated "evidence based" practices & a sea of misinformation presented before a court of law.
Supportive family members are assured the right to voice opion or make written complaint, but be warned, it is highly likely this can be used against the patient/family with vigor if it means high lighting errors and in-competencies of public servants.
Mothers & fathers faced with children entering into the mental health should do so with the support of the very skilled mental health lawyer or a very supportive treating team. Legal Aid lawyers currently are considered the "experts" in this field and are used in Mental Health Courts, appeals etc
We where non of the above, and remain the same 3 years later.
The defense available is only as good as the reports written by the treating team member / reporting doctor /doctors / police and other involved parties. The fact is we never where heard and have never been considered during the mis-treatment of our son.
Medical records are a "key" component of a medical treatment and defense in a mental health court. Challenging medical records
proved too exhausting, traumatic a processes for our highly medicated son. The records eventually recovered arrived in an ad-hock order and to find the relevant papers over 100 pages had to be sifted through to find relevant pages.
It took over a year to find the most important problem, that being dates.
To read the scribbled notes was another challenge faced, having documents typed added extra delays, adding to the sticky situation of not having the facts for presentation to a lawyer for presentation to a court.
Add a condemning letter falsely giving advice to the court that amphetamines where present in the blood & ....3 years later.
Give involved police officers access to the records and this is equates to a doomed situation.
REDACTION , delays, missing reports, missed appointments, just made the situation more intense & extremely stressful.
To challenge reporting errors to Ambulance, police, court officials, doctors, pharmacies remains too daunting & now feels like a waste of time, or is it?
Adjournment after adjournment, no medical records that can be considered sound
The mental health system does not recognize anti-phycotic induced physios, nor the exaggerated effect that some common substances
[...] was set up by me as part of Ben’s discharge plan after the relapse that landed him back in the psychiatric hospital for six weeks. I didn’t – and still don’t – have much faith in the system [...]
The importance of supporting recovery of mental illness is incontestable and crucial for definitive course of mental disorder. In this direction the role of family support remain as chief boost in better prognosis of psychotic disorder, such is Schizophrenia. In this case, the role of parents, such are You Ms Kaye, is irreplaceable in right and genuine recovery process of this serious psychiatric illness. It should to stress that in this mission parents often make mistakes when they doing great effort on smooth-course of their child mental illness. Therefore, parents, especially mothers go beyond bounds, in order to helping correctly at their mental illness child. Hyperprotective care is harmful as negligent attitude toward child with psychiatric entities. My advise, as psychiatric, is to be spontaneous and unloaded toward mentally ill child like a mentally health child.
I'm so happy that things are working out with Ben. I am a former social worker and I was just incredulous about the mistakes made the precipitated Ben's relapse. He is very fortunate to have both you as a very strong advocate and some very supportive people in his life, including his work. I wish all of you well.
I'm glad Ben is home and all is well with his meds. I live in Stamford CT and have heard great things about the Laurel House. I know it's there if I ever need it.