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.
Miriam Feldman’s wonderful book will be released tomorrow, and I highly recommend it.
Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere. I have read many of them, and Miriam’s memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.
Plus she made me laugh out loud – something you wouldn’t think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your beloved child. But you can, and we must.
Miriam Feldman takes us through the facts, the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.
You will fall in love with her son Nick, and grieve the loss of what might have been…and hope for what might be. As I do every day with my son Ben.
I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my “Power of Kinship” conversations.
and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.
We cover, among other things:
What, if anything, has changed for families dealing with schizophrenia – and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma – is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family …and more.
And still, the myths – and lack of attention to research – continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley,
A huge question looms:
"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"
I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or – worse – worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.
Still, those of us who love someone with this devastating illness, who knew them before it took hold, can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be – if only we could find a CURE, not just a management tool.
Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.
Let’s hope these three works of art will propel us toward the changes we need to see – and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.
As I write this, I realize it has been quite some time since I’ve posted.
Why? Because things have been remarkably stable — or maybe we’ve just finessed our ability to adjust to Ben’s illness. It is what it is. There have been a few blips, to be sure, but with fingers crossed every day we buy another 24 hours of relative normalcy by supervising the treatment my son still doesn’t – and may not ever – believe he needs.
Ben’s recovery (used in the same frame as an addict defines recovery…an ongoing process, one day at a time, with constant awareness and vigilance) has been framed by the four pillars that hold his life up. (Hold all of us up, actually): Treatment, Purpose, Structure. Love/Community.
And then Covid-19 hit. Ben’s job (restaurant server, full-time) disappeared – and along with it, 3 of the 4 pillars have toppled or at least been weakened.
Plus – he doesn’t understand why he can’t see his nieces and nephews. To keep some semblance of sanity, Ben goes out to see some friends in their homes. Germs, risk, but where do we draw the line? Now I must remain socially distant from my own son in our home – even when he offers a hug.
The tightrope walk continues.
I’d be lying if I said we weren’t concerned about Ben’s precarious mental health, on top of all the shared concerns that have come with coronavirus and quarantine.
And so we wait, watch, and supervise. Just more than usual.
“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”