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”)
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.
Why is Mommy in the hospital? How can a brain be “sick”? Finally, a picture book for children that addresses the most secret of secrets: my parent has a mental illness.
We follow little Imani through her confusion, sadness, loss, and adjustment as her mother reacts to her inner voices (one named Jerry), lashes out at her daughter, goes to the hospital for treatment, and finally returns home, with her illness under control. Through it all, Imani’s father provides support for her.
if you know a young child who is dealing with this in his or her family, this lovely book is a great place to start. It could be the key to opening the conversation we seldom know how to explain.
Mindy Greiling and I have many things in common, though we’ve never met. The biggest shared experience: we both have sons with schizophrenia, and we haven’t given up on them. As she says in the epilogue of her new book, we are “the best mothers we can be.”
As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And “happy endings” are, often, only fleeting respites from trauma, until the next chapter begins.
Still, we love.
Still, we hope.
Still, we fight.
Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative – a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She’s received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud.
But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family’s journey, and also her work to enact changes in the system.
I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don’t).
When I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps. Since then, I’ve seen (and read) quite a few – and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about advocacy and the way things work in the world of state legislation.
Mindy Greiling is a fine writer – you’ll keep turning the pages. You’ll feel less alone, if you share this issue. And you’ll get a really accurate ride on the roller coaster of family experience with “recovery” – what happens after someone with severe mental illness is treated and released? I know this ride all too well – am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success.
Another round of uncovering the truths behind the life he’d sworn he was managing well (“it’s none of your business, Mom”). In the five weeks since this latest breakdown, I’ve been unraveling and trying to piece together the strands of the web he’d woven, and all that was caught in it: the mess, the mounting debt, his addiction to marijuana, the car damage, the shopping sprees, the lies.
I am not legally responsible for any of this, but of course I am a mother and each day includes hours of work to talk with Social Security, Medicare, debt collectors, lawyers, banks. I am doing what I can to prevent the final collapse of the life he’d struggled – with adolescent (at best) decision making, to create, the nine years he has lived with us (no rent) and complied with our requirement that he take his meds.
Our nest was supposed to be blissfully empty by now. My husband and I have more than earned it. But this is my child…the baby I birthed and nursed, the child who was always so impatient to give you a present, the big brother who was such a role model and friend to his sister, the student who was a John Hopkins scholar in eighth grade.
How much do you let go before the guilt chokes you? I think I know now. Ben cannot live with us anymore, if he ever gets back to the “almost normal” he had before he took himself off meds. I must turn him over, once again, to “the system” – because I can’t endanger the rest of my family, or my own sanity, anymore.
But how can I divorce my child? Can any parent do that?
Like many memoirs about a mother’s experience with her son’s schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support…all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity – the club we never wanted to be in.
What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine….a primer for the vast education a family needs to cope and help.
For me, this may not have been the easiest read on this day when my own son’s Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing…what will happen to mine?
In one terrifying and frustrating scene, she shares her thoughts as Noah’s symptoms worsen:
As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.
Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben’s sweet nature abounds. When he refuses meds? I don’t know how long before the voices take over.
The author’s son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.
I can relate. You, I hope, will too. She searches for “the truth” throughout this book, and all of us hope and pray it can be found.
My son, Ben, is back where he began his diagnosed-schizophrenia journey 17 years ago: in West Hills Behavioral Health Institute, though its real name (not West Hills) has been changed.
He is the worst I have ever seen him: unresponsive, refusing ADLs (Activities of Daily Living, such as showers), wandering all day talking and gesturing to his voices. The best the nurse can say is that he “isn’t causing trouble”, and that “today at least he changed his shirt.”
This , the best news about a young man who, before Covid-19, was working full-time and training new servers at his restaurant job.
No, his life wasn’t perfect, or even perfectly “normal.” but it was a life. And if he didn’t always make the best decisions, if lately he seemed lost and distracted, if lately he seemed to find new ways to spit his meds back into the sink…well, he was managing.
It was a life.
But now it’s like the past 9 years of stability never happened. So what do I do?
I clean his room, of course. Since Ben is hospitalized until we can have a hearing to get right to commit and medicate, I have a rare opportunity to snoop, and to clean.
I call junkluggers and pay to have 3 ragged couches and a broken arcade game taken away. I clean out his drawers and closets. I hunt for hints, for information to all the secrets he has been keeping. I find evidence of shopping addiction, more drug use than expected, and all the paperwork that explains his poor financial choices including leasing 2 cars at once. He is deep in debt, all the time saying “Mom, I have it under control.”
No big surprise. But informative. As is the mounting evidence that his marijuana use had gone way, way beyond the occasional joint. I have 2 huge plastic bins full of water pipes, bongs, more.
I sort and toss and organize and scrub, preparing my son’s room for the life he may never get back. I clean with hope. I clean because it’s control. It’s the only control I have. It’s the only thing I can do for my son now.
But it’s the evidence of his hopes and dreams that really get to me.
From Ben’s essay on Shakespeare’s Henry IV: Parts I and II, written about seven years ago, a year or so after his 8th hospitalization and release – this time, to our home, where until recently he was thriving. Well, thriving for someone with a severe case of schizophrenia.
In the essay, Ben compares himself to Prince Hal (Henry V), portrayed at first, according to Wikipedia, as ” a wayward youth who enjoys the society of petty criminals and wastrels” until he wises up (or grows up, I guess).
Through King Henry’s words…I received a deeper understanding of how both my mother and Henry felt as they saw their sons dwindle. When Hal reforms his ways with the promise of honoring his father….he reminds me of how I decided to change my lifestyle upon gaining some insight into my mother’s perspective.
Again and again, I see reminders of the big plans he had for himself…until the world (and especially Covid-19, with its isolation and impact on the restaurant business. pulled the rug out from under his already shaky stance.
Every time, every night, when we got him to take his meds, I thought to myself: well, we just bought him another 24 hours. But now that’s all gone. I have spent hours on the phone with financial companies, trying to keep his future possible. I defer payments, I cover overdrafts ..and add it to the mounting list of what he “owes” us.
His room is all ready for him – but he may never come back. Not without a lot of conditions. But I prepare for the best outcome (returned stability), even though I know he might not some back to life this time. Because…motherhood.
And right now, we just have to get him to swallow his medication.
Hey, I don’t know Britney Spears. I don’t know her family. I can’t say whether she should be “freed” from her conservatorship prison or not (#freeBritney). Not my business, frankly.
But I can tell you how it works for us – and why .
I can tell you how my son, who just a few mere months ago may have appeared perfectly capable of handling his own affairs, was making some big mistakes-and is now desperately in need of his conservator (me) to salvage the life he’d so enthusiastically worked to build – before Covid-19 stole his job, his purpose, his sanity.
In the last two days I have:
Been able to get basic information as to how he is doing in the hospital (not well). Without conservatorship, I’d never have that information – or even know where he is. I couldn’t bring him a couple of T-shirts to change into. I wouldn’t know if my kid is safe.
Contacted his bank (where he’d opened a secret account) to deposit money to cover his overdraft – for now.
Kept his Medicare and Medicaid premiums paid.
Looked into re-applying for social security should he refuse treatment and remain “gravely disabled” – which, right now, he is. Anti-med people? Don’t judge until you see how he is right now. And compare how he was just weeks ago.
Called the finance company to see if his vehicle lease can be put on hold or something – to avoid the car being repossessed and his credit rating shot.
Discovered that he’d been covering up a bad financial decision, resulting in lease payments of two expensive cars at once. He’d hidden that from us for awhile, and then it had taken us months to get him to return one of the vehicles. While he’d been employed, he’s covered both payments somehow.
Paid his credit card minimum (plus a bit) – so this credit rating, too, won’t be shot .
Contacted unemployment to explain why he can’t file right now – without revealing his illness details (but can’t get anyone on the phone)
This is what conservators do. We catch them when they fall. We let go as much as we can (believe me, the last thing I want is to have to manage my son’s life AT ALL – he is 38 years old – but this illness just totally sucks and steals much of his logic, even when it’s managed by medication) – but if I don’t step in now, my son will not be able to get back the life he created while taking the meds he doesn’t think he needs. Continue reading Why Conservatorship? Because it can Salvage – or Save – a Life→
Well, my son did. And we were helpless to stop his fall, as we stood there, witness to another mental health victim of Covid-19.
Nine years of being the poster boy for a stable and meaningful life while in treatment for severe schizophrenia, gone in 48 hours. 48 hours. Nine years of careful steps taken toward full-time unemployment, car ownership (of sorts), his own bank account, social activities with friends and family. Nine years of a half-life that we constantly reminded ourselves “was good enough, compared to the alternatives.”
Schizophrenia had stolen Ben’s life, thrown him into deep muddy waters of chaos and limitations, but he had risen to the surface and we were keeping him afloat by supervising his treatment. Every. Single. Day. He did the rest – earning college credits, working as a restaurant server (a good one, Yelp-worthy), helping out friends – because he had the 4 pillars of stability: treatment, love, purpose, structure.
Gone, all gone. My son is back in the same hospital where he was first treated, 17 years ago, and just as symptomatic. He talks to himself all day. He refuses treatment. He won’t talk to us, this child who just one week ago hugged me good morning every day and played on the floor with this little nephew and nieces, who adore him.
His preschool-age nieces and nephew cannot see him like this. They wouldn’t recognize their uncle. Sadly, though. it’s all too familiar to me, as the pain and grief come rushing back.
No, Ben doesn’t have Covid-19 – yet. But the illness caused the economic crisis that cost Ben his job, his purpose, his structure, his livelihood, his sense of self-esteem, his reason to agree to take the meds he thinks he doesn’t need.
Unemployment benefits helped – money to at least pay his bills (leased car, credit card, car insurance) and allow some pleasures (take-out food, a new sweatshirt). He was so brave, like a kid consoling himself and saying it doesn’t matter when not invited to a birthday party.
But then the benefits were reduced – that $600 per week that has kept most of the unemployed alive since covid pulled the rug out. And Ben’s stress escalated – as well as his evident need to control the only thing he still could – refusing to take his medication.
This has happened to many of us, but we can somehow find a way. We dry our tears and turn to logical thought – where can I go? Who can help me? – for at least some answers. But when you have schizophrenia, you don’t have the frontal-lobe logic to pull yourself out of a funk. You don’t ask for help (because you don’t need anyone, or any stupid meds).
My heart hurts. We are in grief. Back to square one, and I am terrified and heartbroken for Ben – and for us.
Getting him out of our home and to the hospital wasn’t pretty. The police and EMTs were amazing. And part of me is glad for this “vacation” from his messy room, the greasy stove after he cooks, the cigarette smell that always accompanies him, the daily standoff to get the meds into him.
Yes, I will clean his room, throw out the old empty bottles, the 2 of the 3 ragged couches, the piles of unwearable clothing. I have some control over that, at least. I will do that between my voiceover work, the virtual play I am casting, radio shifts, and helping my daughter with those 3 babies.
But what then? We have 15 days.
15 days. A gift. A burden. A heartbreaking reminder that meds work, but not to cure. Only to stabilize. And my son – all who are like my son – deserve better.
I have no idea what lays ahead. We will move forward, blindly and with love. But the love will lay there, unreturned, while my son lives in his inner world of chaos, back in the place where he was first treated, and a newly-leased car (his pride and joy) sits in our driveway, a reminder of who he used to be – 48 hours ago.