An Inmate's Mom: More Powerless Than Ever

Well, here’s a new brick to add to the wall separating me from parents of “normal” children. I am now the mother of an inmate.

Ben has been arrested, and is in jail (not prison, I’ve learned the difference) awaiting his court date.

His crime? He’s accused of trying to snatch a purse (unsuccessfully, but it still counts as larceny). He swears he didn’t do it. It is the victim’s word against his. But my child - my man-child - looks like a thief these days. Though he has been living in a group home, he looks homeless. He won’t let a dentist fix his teeth. He has lost weight and his clothes are shabby because he wears them for days on end. Even his bicycle (which we just paid $500 to have repaired, good as new) looks homeless: the tire off the rim, the paint scuffed.

My son’s appearance itself is a liability when it comes to trust.

Did he do it? I hate to say this, but it is possible. Ben’s life, so filled pre-Covid with work and purpose (yes, even after diagnosis of schizophrenia, but on a different medication), has recently become scattered, desperate and empty. Covid had closed the restaurant business where he had worked for years as a popular server. That was when he lost everything that had given his life meaning.

Back in the hospital for nearly six months. Back on (different) meds after I’d called a hearing for a court order to medicate. Discharged to a group home.

Still. Ben had tried to make a life again. He had valiantly landed a retail job nearby. He’d d tried so hard to succeed at this. He’d walked 3.5 miles to get to work, always on time.

But his odd behaviors between injections of Haldol made him look distracted, even lazy. Of course he never disclosed his illness. He was eventually let go, and I think that’s what broke him. He lost hope after that loss.

Then: boredom, purposelessness, hopelessness. The perfect, awful storm for someone to turn to drugs for relief. What drugs? Can’t say, but we suspect more than marijuana, based on how quickly his money had been disappearing and poorly managed as of late.

Stupid schizophrenia.

The shock of his arrest has worn off for now, and as usual the best support is coming from those who have been there, the power of community. But there are now a lot of new things to learn - and the number one lesson is this:

You thought you had no say in your loved one’s care before? Try having a child in jail, awaiting a court date. He wears a standard uniform. You, parent and conservator, are also lumped into a category: inconsequential. You have zero power.

No one returns your calls. Not the public defender, not the jail “counselor”, not the Marshal's office. There is no way to find out if he is getting his meds, or where his backpack is. Your inmate child can call you, but you can’t call him. Can’t get a message to him. Can’t really help him, except to maybe pay for a lawyer other than the public defender.

So you learn, again, to let go of control, of influence - and even, a little bit, of hope.

The bar of what counts as the baseline of normal gets even lower.

Life with a child with schizophrenia. And now, clearly, addiction. And still worse now, one who has been arrested, fingerprinted, incarcerated.

Yet he is safe for now. And, oddly, doesn’t seem to hate it there in minimum security. He has more people to talk to, play cards and chess with, drink instant coffee with, than he has had in months. He has structure again. He has fewer choices - and is clean and sober.

The future? As always, I’m doing what I can, and letting go of what I must. The specificity of those choices is different now. The bar has indeed been lowered. But the stakes are higher than ever.

I hate schizophrenia - the great thief of lives that could have been. When will we fund research to find a cure, and improve the system that allows lives to get to this point?

The fight goes on.

Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn't easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.

We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically -  face when schizophrenia moves in.

Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.

And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend.  And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.

Other families are not so lucky. And tomorrow, we might not be either.

Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.

But wait, there's more.

• There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.

• What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).

• What if he gets sick? What if we lose coverage for his meds?

• What if something happens to us?

Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.

Laura Pogliano and Zac

My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy  with Parents For Care.

But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:

Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.

Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017

I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017

My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017

I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017

I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. -  Antionette, Feb. 2017

Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?

This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug.