Out of the Hospital, Not Out of the Woods

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.

Feb 15-19 – I am so grateful that Ben is in B Home, and not with us. I think my heart would break every day seeing him like this. Texting and phone class, even facetime, are helpful. He’s pretty good on the phone. 

 I do have a long conversation with the B Home Social Worker, who seems caring and informed. She actually listens to me as I share Ben’s medical and work history. She is amazed that he used to work full time. I’m sure she can’t see that possibility in him, the way he is now.

Meanwhile, the money questions pile up. Did Ben have Social Security reinstated? I’ve been working on this since October.

I speak to Social Security, to DSS, to his benefits manager, to the residence staff….and everywhere there is a different story. 

Ben lost medical coverage…no, wait, maybe he has it.

Who will pay his rent? 

Are his medications covered? Yes, they are. No, wait, they aren’t. 

One system says yes, the other hasn’t gotten the memo. 

This is a SNAFU paperwork nightmare. 

I am told that if Ben weren’t on the “fast track” these decisions would take two years. Two years

Feb.20-24.

A new wrinkle.

Ben’s case management team is suddenly being disbanded. He has been within them for 18 years.

Now, a whole new team to train.

 I hope they’ll hear our story. I hope they are better.

I hope the doctor is more attentive, knowledgeable, helpful, caring

I am wishing for a lot. As ever.

Meanwhile, Ben’s “rent” has not been paid because no one knows where his benefits stand. I write out a check for almost $1200 and mail it in to B Home. I cannot afford this. But of course I pay the bill.

And, Ben is failing. The B Home staff tells me he is twitching, gesturing with his hands, mumbling, eyes darting off to the side. Also, He’s isolating in his room whenever he can, listening to his music.

 This, my son who waited on a full station of tables just a year ago and kept it all straight and came home full of joy about the social interactions.

I know these signs. The voices are getting louder. 

God, please help my boy.

The psychiatrist has yet to order oral Haldol boosters or move up the injection.

This didn’t have to happen! Yes, sorry but it’s true, I told you so!!!!

Feb 25 – finally, Ben is scheduled to get his next long-acting Haldol injection. It’s happening tonight.

But no.

At 7 pm I get a call from B Home. The pharmacist doesn’t see any medical coverage and won’t fill the prescription. This just becomes a thing at 7 PM? 

“Don’t worry,” they say. “If he gets more symptomatic we’ll just get him back to the hospital.”

What?

But no one even knows if he has medical coverage. The case is still being “decided”, according to the DSS case manager I spoke to yesterday. This has been going on (I repeat, sorry) since October.

And this didn’t have to happen! Yes, sorry but it’s true, I told you so!!!!

Many many phone calls later (bright spot: the benefits manager calls me back even tho it’s past her workday hours), I am assured this will be straightened out by morning. If Ben gets through the night without full-blown psychosis.

If.

I hold my breath. But I do sleep. The benefits manager told me to.

 

Feb. 26 (today)

We think he’ll get the injection today. We think it has been straightened out, that the pharmacist will fill the prescription, that the nurse will arrive, that Ben will not run away from her (that has happened before)..

I’ll believe it when I get the final word. 

 

No, out of the hospital does not equal out of the woods.

And so many others have it so much worse. At least Ben has a roof over his head, staff to manage his care, a family that loves him.

But it could be so much better.

Quoting Willy Loman (again, and just as fruitlessly it seems) from Death of a Salesman:

 Attention must be paid.

 

4 thoughts on “Out of the Hospital, Not Out of the Woods

  1. I really enjoyed your book and relate to not enough attention to after the hospital care. My son was readmitted to the state hospital recently & I don’t know what is next.

    1. Thanks, Judy. Yes, it is so difficult. If you can use the time he is hospitalized to speak to his team and fight for what he and your family need, there might be a plan in place. Hardly perfect, but better than the alternative. We keep fighting. Sometimes it’s all we can do. The courage of families amazes me. Thanks so much for writing. Hope you get some good news…

  2. I’m so sorry, Randye, your son and your family are going through this. I’m wondering how he is doing now? I hope they have found a better medication for him and that he is doing better. All of us with children who suffer from these terrible brain illness are always waiting for the other shoe to drop. It’s just such a cruel, relentless illness and our system of care is so broken. I often wonder how we keep going…. Love is a powerful motivator. Like you, I will never, ever give up. Giving up is not an option. Ben will be in my prayers.

    1. Thanks so much for your thoughts. Yes at the moment things are stable . Ben is on haldol which scares me but for now he seems to be happy with it . We take what we can get , right? Working to suggest he go back on clozaril but… you know . Only so much we can do

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