Waiting for him to figure out what is best for him.. what is safe for him… that he even has a serious mental/brain illness… will never happen.
Have you seen the new docuseries on AppleTV+, “The Me You Can’t See”
First of all, thank you, Oprah and Prince Harry, for joining the ranks of advocates who are becoming more open, honest, transparent about mental health issues, barriers, and some solutions. In this 5-part series, people from celebs (like Lady Gaga to the Prince himself) to “regular folk” talk about trauma, challenges, heartbreak, and where they are now.
This is brave. This is eye-opening. This will help some folks, diagnosed with mental health issues (or those who know, treat, or love them) to understand and know they aren’t alone.
Does it go far enough?
I am hoping for a second series, where more illnesses are explored, uncovered. Especially schizophrenia in those who have yet to be aware that they have the illness.
As we’ve covered often in our podcast, Schizophrenia: Three Moms in the Trenches, and in the books and blogs we share, one of the hardest things about schizophrenia is that the first step often can’t be taken: the step of awareness. Anosognosia is the condition that keeps Ben, and countless others like him, shielded from that awareness – and from accepting treatment unless somehow coerced into it (even by love).
This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.
We cry, we fiercely guard, we coerce, we lose sleep, we go broke.
I have stayed in touch with the creator of the film, and last night was honored to be a guest on his podcast. We talked about schizophrenia, family, stigma, support, and so much more.
“The love is pure, but the rest is difficult. I wrote it for families to not feel so alone.” Randye Kaye on what motivated her to write her book chronicling the journey of the development of her son’s mental illness.
Check out this exclusive clip of Extra Innings: Covering All the Bases! This week’s guest was actress and author, Randye Kaye.Randye Kaye makes her living as an actress. In 2011, she published her memoir Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, based on her own experience understanding and living with her oldest child’s schizophrenia. She hosts two podcasts: The Life Talk Show and Schizphrenia: Three Moms in the Trenches.
Find More about Randye KayeWebsite: randyekaye.com
It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise – but we family members know to enjoy the moment, and prepare for a fall.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
Timetable of deterioration:
(first few days covered in more detail in the earlier post):
Thursday, Feb 4th – pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.
Friday, Feb 5th – I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate.
Monday, Feb. 8th – the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess – but he is still not good. Families know.
Thursday Feb 11th – I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.
Good news: he is wearing a mask.
Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day.
We still have not heard a peep from his psychiatrist.
If you were asked to take a medication (for an illness you don’t believe you have) and warned that the side effects might include:
- sexual disfunction and
- weight gain,
would you take it?
And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.”
This has been one of the reasons my son hates to take his meds, and refuses or pretends to swallow them whenever possible. For years, we have worked around this, but yes. I get why.
Finally, though, there is some explanation about the weight gain, which may lead to more research and better medications. Continue reading Finally…A New Word About Antipsychotics and Weight Gain
Listen, I want Britney Spears to be happy too. She’s incredibly talented, seems nice, obviously loves her children, and has worked her ass off pretty much all of her life. And, yeah, her dad seems like a controlling asshole. Also, it has to suck to have your adolescence questioned and paraded all over the media. She was not treated with respect, to say the least. The paparazzi and press were shameless in their interference – and, well, sheer gall. Anyone might crack under that kind of pressure and scrutiny.
(Imagine if all Your teenage love starts and fits has been plastered over the tabloids. I mean, Seriously.)
But, after watching Framing Britney Spears (and to channel Carrie Bradshaw), “I couldn’t help but wonder…..” even now, are we getting the whole picture of her conservatorship?
This is not a popular take right now. And I’m not saying that Brit shouldn’t be “set free”. Honestly, it’s none of my business. But, since I am a conservator myself, I’m just saying there might be more to the story. Have we fully seen in that documentary what a conservator can do to help? To avoid disaster? To protect the conservatee? We have not.
Even Brit herself, speaking out after the documentary aired, has said “everybody has their story.”
I applied for conservatorship in 2003 when my son Ben was about to sign papers to “set himself free” from the psychiatric unit in the hospital. He was psychotic, confused, a danger to himself – but would have been released anyway because he had “rights.”
But by applying for conservatorship and right to treatment, I bought him some time – time to stabilize and to plan for discharge.
“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”
I have this recorded on my iPhone.
Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize. I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure.
It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.
I was right. Unfortunately. Shit.
Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother’s heart that hurts for my son and all he’d lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked…for awhile.
Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized – but not on the medication that had brought him back to a place where he could work as a restaurant server….and fool people into not knowing he has this devastating brain illness: schizophrenia.
No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still…), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects.
Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.
In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam “Mimi” Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.
So – we met each other (virtually, of course – what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us – and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia – if they are in a place to want to hear about our side of the story.
Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) – but our hope is that the content is there for whomever is ready to hear it.
Here is the description:
Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone…and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) Miriam Feldman – Artist, Mom, Author “He Came in With It” Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can”)
YouTube (please subscribe to be informed as each weekly episode comes out!
One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again.
Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering.
How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family.
But there’s only so much you can do if he backwashes into the water and then swears he didn’t.
We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever.
I’ve often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.
Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.
I had to sharpen my pencil several times, I underlined so many facts and observations.
Five Shocking Facts
Five things that either stuck with me or surprised me – and, after nine hospitalizations for my son Ben, I thought I knew it all…
- Often the “easier-to-manage” psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage. Those admitted include “malingerers” who just want to get off the street for “three hots and a cot” and can fake psychosis.
- Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.
- Yes, untreated schizophrenia can increase the incidence of violence. And often, when the voices tell a schizophrenia patient to harm someone, it’s someone they know…and usually love.
- Regarding RLC’s (Recovery Learning Communities, often staffed by “peer specialists who endorse the possibility that signs of psychosis are normal”): ” Researchers found no significant benefits…to help the seriously mentally ill population”- of which my son is one. I live in fear of those who would try to “teach” him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)
- Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and “stigma” was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.