Category Archives: mental illness treatment and recovery

Schizophrenia: Nearly Everyone is a “Long-Hauler”

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The scariest thing about Covid-19, once you’ve been lucky enough to survive it, is a set of residual symptoms that are still being discovered. I’ve heard everything from “it’s a year later and I still can’t taste my food” to “I still get winded six months later and can barely walk up a flight of stairs” to stories of teeth suddenly and mysteriously falling out months after recovery.

We Need a Cure

People experiencing symptoms like these are called Covid long-haulers. There are Facebook pages and groups where stories and support are available.

But my son, Ben, and others like him? Schizophrenia long-haulers. This is the brain illness that just keeps on “giving” – challenges, changes, symptoms, side effects, loss.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

My son is doing okay – actually better than expected – on Haldol now. This older antipsychotic frightens me, because side effects like tardive dyskinesia can be irreversible. Also, it is not known to work on the “negative” symptoms of schizophrenia (things the illness takes away from the person, like ability to feel joy). Still -it’s not too bad.

Some good news: (must mention, Ben no longer lives with us, so some of this may be due to the excellent staff at his group home, and a life less dependent upon our family role as landlords etc)

  • I can converse with him. Actual give-and-take conversation.
  • We have actually watched an entire movie together.
  • He eats my cooking again, after years of saying “smells great, I’ll have some tomorrow” (I think he had some sort of belief about my food that prevented him from ever taking a bite in those years).
  • He has also gone swimming again, and plays beautifully with his nieces and nephews. In fact, they have a relationship with “Uncle Ben” for the first time in years.
  • Haldol is available as an LAI (long-acting injectable) , so Ben isn’t faced with a daily decision as to whether he “needs” antipsychotic meds or not.

But, some of the sadder news:

  • I do see some trembling in his hands now. Would he ever be able to work as a waiter again, the job that kept him afloat before Covid closed restaurants?
  • He is suspicious of doctors, dentists and any medical testing. This is fairly new. He will not have his teeth cleaned.
  • When he isn’t hyper- focused on something I see the eyes darting around the room again, and wonder what he hears and/or sees. He will NOT talk about this, or admit to it.
  • He talks once again about unrealistic plans – like opening his own restaurant, becoming a college professor.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

Daring to Hope Again: Faith or Foolishness?

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randye kaye on hopeThe game of Schizophrenia Recovery Chutes and Ladders (or Snakes and Ladders, for you Brits) continues.

In the past few weeks, Ben has climbed some ladders, made some progress. Yesterday’s family visit was full of simple pleasures again:

  • a car ride that was full of conversation, not the torture of awkward silence and small talk
  • Ben and a friends watched a movie in our living room and actually made it through the whole thing
  • We talked about his future, his feelings, his sobriety journey (now counting again, 15 days)
  • Ben was less defensive, more forthcoming
  • I brought up my concerns about his current med (Haldol) and my wish that someday he might try Clozaril again so as to avoid the side effects (tardive dyskinesia, mainly) of the Haldol – and Ben seemed to listen. (not agree, but he did listen)

These days are miracles. These days give me hope, though I’ve learned not to predict beyond a good day.

I don’t predict. But I can hope.

  • I can hope that Ben will continue to value his sobriety and the meetings that help him.
  • I can hope that the side effects of the Haldol are not permanent.
  • I can hope that he can again be a part of family celebrations.
  • I can hope that, perhaps, one day, he will gain insight into his illness and serve as an inspiration to others.
  • I can hope that he will, again, be able to work, to have friends, to feel purpose and joy.
  • I can hope for a cure for schizophrenia.

Hope is not foolishness. Hope is a celebration.

If I’m wrong, at least I’ll have had a day of seeing my son’s smile again, or actually enjoying talking with him, of seeing that he might be able to get some of  his life back.

And that I can’t do it for him. All I can do is love him (always), set limits (whenever I have to), and do the behind-the-scenes advocacy that is necessary to keep him afloat.

(where are his social security benefits?  Does he have money to pay his rent? Can he work again someday? Where? How? Are there activities he can participate in right now, to give him the structure and purpose he lost when he lost his job due to Covid and then turned to smoking weed instead? ….the list goes on. We orchestrate behind the scenes.)

A good day. I’ll take it.

 

“Mom, My Future Seems So Bleak”: Feeling the Heartbreak

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My son. He is trying to hard to get his life back. If he weren’t trying so hard, maybe then I could detach – let go just a little bit more than I’ve already trained myself to do.

But it’s heartbreaking. For me, sure – but mostly for him.

The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.

I can feel why, sometimes, it may feel easier to just fall down the rabbit hole of non-treatment and go back to a problem that’s more familiar: getting out of the hospital.

Square One (or two, or three), when you’ve climbed so far ahead of it in the past, is really a  hard spot to land back on. Ouch.

The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.

That’s part of why a fresh obstacle to Ben’s renewed recovery journey (after the Covid-19 fall) is now: getting clean. He has returned to smoking pot – never a good sign – which brings all the usual “side effects”: lies, denial, the illusion of accomplishment, poor decisions, loss of money, lack of motivation.

Shit.

Road to recovery…Far from Clear

The first signs were during a home visit – halfway through a fantastic visit, after Ben “took a walk to Starbucks”, he returned home completely stoned. And denying it. I took him back home and told him he could lose his placement in the group home, and also I would not be allowing him to visit until the truth – and a plan of action – came through.

One day later, a very contrite Ben called to apologize, in tears, and ready to tell the truth and “get clean”…and he did – for 35 whole days. He even went to meetings, and shared for the first time ever.  Yeah, maybe “it’s only pot”, but for Ben it spells disaster.

Then…a relapse. He  took 2 hits from “some girl on the street corner” (after refusing once, but then he caved) because “I thought it wouldn’t really make me seem stoned, and it might make me feel better about my life.”

Another call from his Group Home.

Another frantic message of denial from Ben

He can lose his housing. He lost his home visit. I feel stuck in a cycle of Groundhog Day-like repetition.

I gave Ben a day to come clean with the truth – and he did. We talked for over an hour. He is so angry with himself.  He regrets giving in to temptation. He says all the right things…but he has said them before.

Still – what breaks me apart are two things: his voice, cracking with tears and emotion (rare for those suffering with schizophrenia), and his statement:

“Mom, My future just feels so bleak.”

Oh. My.

Continue reading “Mom, My Future Seems So Bleak”: Feeling the Heartbreak →

Hope for “Normal” Days Springs Eternal

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“Mom, I sometimes I thought I’d never actually have a pleasant day with Ben again. Today was so great!”

Exactly my sentiments, honey.

Families of those with Schizophrenia know:  “normal” days are miraculous. And we treasure. Every. Single. One.  Because, well, we might not get more of the same. no guarantees.

flower blooms in cement
Hope springs…and sustains

Blog followers here know that we’ve had quite a few, um, adjustments to make re Ben in 2020-21. From full-time employment to hospitalization, to back in group home care…and now, addiction to contend with. It has been a tough year for us, sure — but so much worse for Ben, especially now that he is “well” enough to realize that his life has gotten so messed up.

He has lost so much.

Stupid Schizophrenia. Thief of lives.  Robber of relationship. Obstacle to useful employment. And so much more.

And yet. There is hope – and moments to treasure again. Grateful, grateful for:

Ben, 25 days clean now. (his addiction is marijuana). One day at a time. He is going to meetings. Fingers crossed. But – wow – it is so different when he isn’t stoned.

Two days in a row of family fun – yes, fun! Ben is on Haldol now – not my favorite, as I fear the permanent side effects, but Ben seems happier on it. Letting go of control…as best I can. It’s his life. But I must say that things are better than expected, even though Haldol doesn’t do much for the “negative symptoms” of his brain illness.

But  – some miracles in the past few days, on family visits:

He went swimming! He used to love it so much as a boy, but for some reason hasn’t gone in the pool for five years (I suspect some sort of psychosis belief that kept him away, but I’ll never know for sure) -it was always, “Maybe next tiem” – but he went swimming with his young nieces and nephew, and actually played with them. Played!

We did a family trip to the local Aquarium and Ben was actually helpful – the kids adore him, and he was present and involved.  And – during lunch, he turned to his sister (as the kids were doing their “I-haven’t-been-to-a-restaurant-since-Covid- and-forgot-how to-behave” routine) and said, “wow, sis, you have your hands full, don’t you?”

 

Empathy!

If you have a relative with SZ, you know what a miracle this is.

Continue reading Hope for “Normal” Days Springs Eternal →

Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate

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One day into June, and the official #MentalHealthAwarenessMonth is over – but the fight is far from over.
Please welcome guest blogger, C.J. Hanson, with these thoughts regarding her brother who has serious brain disease.  CJ is one of the authors in Dede Ranahan’s award-winning book, Tomorrow Was Yesterday.
“I have strong opinions regarding the many different causes for the continual denial of help and easier access to real treatment for my brother since the beginning of his trauma and brain illness of Schizophrenia and Anosognosia.
We initially thought the care he needed was going to be available to him given how severe his multiple disabilities including having lost his eyes in an accident and then brain illness.
We each have our own obstacles. But, like most families – access to that elusive help – was slammed shut on us because Mark is an adult who happens to have anosognosia related to the brain illness.
CJ Hanson, Mental Health/Brain Illness Advocate

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.

No one can understand the respective roles that we are each left to play amidst the absolute expectation from society that we should just innately have all the answers, when we have a loved one with SMI/SBD – an expectation that we are fully capable to physically house and care for someone so floridly psychotic after he has fallen 34 years into the abyss and the tiniest of cracks of his mental illness. Our shattered and fragmented Mental Health Policy & Laws which includes abandoning the most vulnerable of those among us and their families is cruel.
Many of us are just family members struggling to be what we are not. – Medical professionals, Neuro Psychiatric professionals, Medical intervention, Legal and Financial advisor, Psychiatric Technician, Social Worker, Protector, Nurse, even Guard – day and night. Every day and night.

Continue reading Guest Blogger: CJ Hanson, Mental Health/Brain Illness Advocate →

Out of the Hospital, Not Out of the Woods

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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):

It doesn’t take long to lose ground

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.

Continue reading Out of the Hospital, Not Out of the Woods →

Finally…A New Word About Antipsychotics and Weight Gain

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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:

  • fatigue
  • drooling
  • sexual disfunction and
  • weight gain,

would you take it? 

Silly question.  

And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.” 

Seriously. 

Still so much to learn

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 →

The Public Cry: #freebritney! Is There More to the Conservator Story?

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We become conservators to rescue.

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.” 

Here’s mine.

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.

Continue reading The Public Cry: #freebritney! Is There More to the Conservator Story? →

He’s Out! But For How Long? Family Input Ignored.

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Mom and baby hands
It was so much easier then…

“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.

Continue reading He’s Out! But For How Long? Family Input Ignored. →

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

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Hope or Desperation?

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. 

Continue reading Five Months a Patient (Psychiatric Unit): Daring to Hope Again →