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

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.

This medication has brought Ben back, sort of – and it breaks my heart to see how hard he’s trying to seem like his old self – but he definitely is not the same. As my daughter says, “I look in his eyes and he just isn’t there.”

Best – and hardest – decision we made was to have him discharged to a group residence (let’s call it E house)  instead of to our home where he’d been living for the last nine years. He is doing his best to be enthusiastic about this. He has not once guilted me, not once complained about his new situation. Yet. I’m crediting the group work he did in the hospital, for that (and for the apology).

Still, it’s such an echo of where we were back in 2003, when Ben was accepted into his first residence. The house seems nice, the staff seems caring. Hard to tell some of the staff from the patients…until you look and listen a bit more closely. Ben has his own room (for now), and I’m grateful there is a plan in place to ease him gradually into independence.

But. And there is always a but. 

He is slipping. He’s on a time-released injection of the haldol.  This is good, until it starts to wear off. And he wasn’t kept in the hospital long enough to gauge the half-life of the injection. Daily boosters can be given orally, but he hasn’t been prescribed any daily medication except something to prevent side effects (like twitching.)

And every day since I dropped Ben off, he gets worse and worse. And it has only been 4 days. 

I’m spared long visits because of the pandemic, (sorry, but it’s true. Visiting is painful when he deteriorates), but when I dropped off his Medicare card the day after he was admitted I could see it. Couldn’t focus, trying too hard to be sociable, repeating things. I know the signs, believe me. And…I’ve seen him when he’s truly functional (or what passes for it when your brain is filled with constant interference) and believe me I know the signs.

 We cannot wait for his next injection appointment. It will be too late. We need to fix his treatment NOW.

I call the staff, from their parking lot, to tell them what I see. Even though they barely know him, and have never seen him well enough to handle a restaurant rush and still get kudos on Yelp, they see the decline too. They agree with me. So….I call his case manager. 

This is a a Friday. 

I’m told the psychiatrist (Dr. K) will check on him on Monday.

I say Monday will be too late.

Case manager says he’ll talk to Dr. K and get back to me.

Of course he doesn’t get back to me.

The staff at E house tells me not to worry, as they will “get him to the hospital if it gets too bad.”

This is exactly what I am trying to prevent.

It’s like I have to train a whole new set of staff. 

Hello, please meet my real son. This is the one who, when balanced, can get a 50% tip from a happy family. Who can make a great speech at his sister’s wedding. Who can muster some genuine caring and empathy for others. 

When treatment works, he is more than just “stable”. He is wonderful. 

And right now he is neither. He needs better medication and he needs it now. 

It’s such an echo of 28 years ago when he was first placed in a residence after his 5 hospitalizations in that one year.

Only then, he was 21 and I was 51. Now we are approaching 38 and 68. In all that time, are there no other options? Have they not realized that family input matters? 

When will this horrible illness get the attention it deserves?

12 thoughts on “He’s Out! But For How Long? Family Input Ignored.

  1. I am so very sorry Randye, for Ben, for your family, and for all our adult children who suffer from SMI. Things have changed very little, if at all, over the years. You are telling our stories by telling your stories, and I am deeply grateful for that. You give the rest of us MRQs to continue fighting and advocating and loving.

  2. Thank you for sharing. We also have a son with SMI.
    We take it day to day/ ooops… hour to hour.. one step in front of the other. We can control only so much

  3. Hi Randye. My son’s story is so similar to Ben’s story. On/off meds,numerous hospitalizations. Now on conservatorship. I am not his conservator however. I prefer to just be mom. He is currently on L AI (long acting injectable) Invega Sustenna 256 mg monthly. There is also a 3 month injectable called Invega Trinza. He was previously also on Haldol injectable but developed a pretty severe tremor. So far doing ok. He lives in transitional housing with lots of support . We are hoping for the best. Also hoping likewise fir Ben.

  4. Your book is such a lifeline! Our son was recently diagnosed with schizophrenia in his early 30s which only surfaced after he stopped taking his meds for something that his doctors were never able to diagnose. Just that it was autism spectrum. It’s been terrible and our hearts are broken and frustrated. As a college librarian I’ve been cramming my brain with as much information as I can find regarding this condition BUT your book is such a godsend and I feel as though you’re speaking directly to me! Thanks for giving me hope and being someone who truly understands!

    1. thank you so much! I’m glad to hear our story has been of at least some comfort – in what we both know is such a difficult situation. So grateful you took the time to comment 🙂

  5. Thank you for your honesty. You are a lifeline to me. My son has a similar story and your book is a standout in helpfulness and sharing pain. You are a gifted writer.

  6. Thank you for your honesty. You are a lifeline to me. My son has a similar story and your book is a standout in helpfulness and sharing pain. You are a gifted writer.

  7. Glad I stumbled across your page. My son’s symptoms arrived with a vengeance when he was about 16 Because he had suffered a horrific burn accident when he was 7, PTSD was often the default diagnosis. Through the years, depending on the expert, the diagnoses ranged from Bi-Polar to PTSD to Major Depressive Disorder to Addiction. Never Schizophrenia however, in hindisght now I wonder. The symptoms were not classic – no delusions/hallucinations – but the more I learn the more this possiblity resonates. We lost him in July of 2020. “The combined effects of his prescription meds – ruled an accident. Pages such as yours are helping me gradually climb out of the rabbit hole of “what did I do or miss along the way?” Rememberingcary.com shares his story.

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