From 2006 through 2009, we searched. My daughter was a pawn, becoming a non-entity, the problem that needed to be solved which we shuttled from hospital to residential facility, never home, always where a “professional” could monitor her. As she got further into the system, she was more divorced from our family.
There were 72 hour holds. There were fights with staff and even more frightening self-inflicted abuse. We listen to the descriptions holding our breath, afraid and confused. This cannot be the same girl who didn’t drink in high school, read like a librarian and had compassion for every living thing.
The mental healthcare model in use today forces this relationship. The “patient” is channeled one way and the family and loved-ones are set on a slightly different path. We were parallel, never allowed too close. “Professionals” stood guard at my daughter’s gate. Once she entered the system, we were conditioned to believe that we couldn’t handle her, that we were not equipped to be supportive or trustworthy. We might say the wrong thing, give my daughter the wrong impression – perhaps one of hope, or maybe it was as simple as they didn’t want us saying to her directly that we didn’t think the meds were helping.
The system fosters dread. We were constantly told of the dire consequences of not following the doctor’s orders. “Keep her on her meds!” The system also nurtures confusion. We never really understood the process. We knew that while in treatment, our daughter did hours of therapy and self-awareness exercises, DBT, AA meetings. We understood that pharmacology was a HUGE part of the equation, having been told repeatedly that the “chemical imbalance” was critical.
But, what, we kept asking, will happen next? What is the outcome? When will she be better?
Nothing happens next. But we didn’t know then what we know now – my daughter was trapped. She had developed a chronic need for medication that would keep her captive long after she eventually fled the system. The system had her with the first benzo Dr. Lesli Kramer, a psychiatrist in Eden Prairie, Minnesota, administered to this young anxious woman.
There were endless hospitals and residential facilities. She moved to Chicago. She had hopes of finding a job and getting her life going. Her boyfriend started calling asking me to distract her so that he could get out the door in the morning. She wasn’t doing well. Her current therapist was trying the same drugs she had already been on. Again. Her brain was dislodged. This experiment of independent living ended badly with my daughter and her boyfriend on different floors of the local hospital’s psych ward.
They moved to Minnesota to wait for an opening at THE hospital where everything was going to be sorted out and our daughter would, after an extended stay, be able to live a long and happy life. The Austen Riggs Center, In Stockbridge, Massachusetts, calls themselves the preeminent medical center for the “treatment resistant patient”.
We believed everything they promised. Four hours of psychotherapy a week, art therapy and a work program all sounded wonderful. AND, they had access to the “finest psychopharmacologists” in the field. Weren’t we lucky when she got the call that a slot had open for her!
Four months later, believing she was ship-shape, my daughter was back in Minnesota. She and Zac, the boyfriend who had been staying with us while she was at Austen Riggs, set out to make a life in an apartment about a mile away.
Within a week, her life had crumbled around un-emptied boxes, where she laid curled up in a dark bedroom.
Once or twice a week for the next month I scooped up my daughter and drove the short distance on the highway between Minneapolis and St. Paul. Often she couldn’t handle the session on her own and Dr. Stagner, a psychiatrist recommended by Austen Riggs, would come out to the waiting room, open the door and wordlessly usher me in. At the beginning she had wanted me in the room to help with the timeline of treatment and to assist in remembering the drugs she had been on and in what combination.
Dr. Stagner’s office felt like the calm space of an old friendship. Couches and roomy armchairs were clustered around a coffee table which held kleenex boxes, pens, scraps of paper. Nick-knacks lined the window sill. Everything was muted in tone and shape, a little frumpy, but not shabby, just homey. Dr. Stagner sat in a corner next to the wall of windows, surrounded by stacks of papers and files, a computer and tea paraphernalia, rumpled and comfortable, soft around the edges and kind. He didn’t have any affectations. No furrowed brow, steepled fingers, pregnant thoughtful pauses. He reacted to my daughter’s pain honestly; he was concerned, immediate and forth-coming with answers.
“I am not surprised at what is happening to you. It was too much, too soon,” he said to my daughter who had pulled herself into a fetal position, high-heeled boots, coat and all. Her head was resting on the arm of the chair. Her eyes were closed, her face streaked with mascara when I settled into the chair at her side.
“I lived in a bubble. Residential treatment is stupid. How was I supposed to know that it was going to be like this? It is not fair. I thought I was better. I really did. But, I am not.”
“The real world is unrelenting,” Dr. Stagner said. “People need things, decisions have to be made, cooking and cleaning for yourself is hard. It sounds like you bit off more than you can handle. Back off and give yourself a break. If it is too hard to get dressed, don’t. Tell your boyfriend that you can’t. Take your time, work yourself slowly into taking on responsibilities.” Dr. Stagner’s face was full of concern.
“But, Zac doesn’t understand. He wants me to be with him. Go out. Do stuff. I can’t. I just can’t do it.”
“You have to tell him that. But, my guess is that he is getting the picture. I am going to give you Zyprexa. Use it to get to sleep at night. Try to get on a schedule of being up during the day, sleeping at night.”
“How about my panic attacks?” her voice was muffled.
“Yes, you can use it when you feel one coming on.”
“But, I get them all the time. Everyday.” She lifted her head up. It came out like a whimper.
“Lessen the stress and you will have fewer panic attacks. I think you should think about returning to Austen Riggs. You need to get stable again and work at introducing yourself into the real world slowly, maybe in a step-down program.”
“No, I can’t go back!” There was fear in her voice.
“Okay. Well, we will go slowly here, then. But, you have to take the pressure off of yourself. Have your mom tell Zac how important it is for him to give you the space to get better.”
“Mom, tell him. Zac will just get mad at me if I try to tell him. Everything I say to him makes him mad these days.”
“I don’t think that is the case. I think Zac is disappointed that you are not better. He’s not mad at you. He was expecting someone different. You have to see the situation from his point of view. Girlfriend calls from Massachusetts sounding great, comes home and within a week she falls apart. It was unexpected. I will talk with him. But, Zac is far from being mad. He is disappointed. But, he loves you and from what I have seen, he will stick by you for as long as it takes for you to get back on your feet.”
They didn’t work it out. Zyprexa and benzos and a smattering of anti-this-and-that littered her bedside table. Eventually, Austen Riggs was called and re-admittance was offered.
Packing this time around was complicated. Zac had left in a rush and his things were mixed into hers and they had barely unpacked and my daughter was in a psychotropic drug fog.
She was curled up on the bathroom floor when I rushed in. Glass was shattered all over the floor of her bedroom and hallway. She was crying.
“Why didn’t you come? Why weren’t you here to stop me? I needed you. Now, you ruined everything. It’s all broken. A mess.”
“I’ll clean it up. It’s ok.”
“NO. It is not OK. Stop it. Get out of here!”
I cleaned up the glass in the bedroom and looked around. She had barely started packing for her return to Austen Riggs. One earring was on her dresser. I’d seen the other one in the kitchen. The whole packing job was going to be like that, a scavenger hunt. She was anticipating a long stay this time and wanted to bring everything – different seasons of clothing, her books and magazines, videos, lamps, bed linens, etc.
“We could send things,” I suggested, “Just pack the essentials.” No, she had to bring it all with her.
I passed the bathroom. She started throwing things at me.
“Why the *^#* did you do this to me?” She was screaming and sobbing again at the top of her lungs. “You are terrible. Didn’t you know I needed you?” Bottles and jars were shattering against the hallway wall across from the bathroom door.
“Please stop throwing things!”
“No! You are really a bad mother, you know. Anyone else would know not to leave me alone. You are so selfish.” I stuck my head around the corner of the door. A soap dish whizzed past. She was picking up speed. Double fisted. She was bawling.
I stepped into the line of fire and threw myself over her like a blanket. We laid there on the bathroom floor for a full minute, maybe two. She whimpered a couple of times, struggled against my weight, about the same as hers since she had started packing on the Zyprexa pounds, and finally gave up.
“You’re hurting me,” she said. I rolled over and we sat up. She started laughing. “Nice tackle. Bathroom football! Good job, mom.”
The drive across the northern half of the country in a blizzard and below freezing temperatures was terrifying. Black ice, black mood. My daughter was hitting herself, sighing and jerking around with a keyed-up force that was unpredictable. I drove most of the way with my hand hovering above her, lest she reach for the door handle and fling herself out of the speeding car.
My daughter and I went through the same process as we had a couple of months earlier the first time we arrived at Austen Riggs. Sitting in the lobby after a miserable night riddled with angry outbursts and little sleep, we met with the same line-up of doctors and staff. She was performing in public spaces but by mid-afternoon when we got to Dr. Stevens’, her therapist from her first stay, her performance was inadequate. Her face kept slipping into despair, her shoulders slumped inside her coat, she stumbled along behind me, devoid of energy and the will to get through the day. She couldn’t sit. Her clothes were bothering her – the seam on her tee shirt, the sleeve of her coat, the strap on her shoe. She’d been plucking and pinching everything away from her body, twitchy and obsessively repeating movements. We walked into Dr. Stevens’ office and took the same chairs that we had six months earlier. My daughter perched on the edge of hers for a couple of seconds and burst into tears. She had reached the end. Her body and mind caved in. She couldn’t pretend to be OK for another second.
“I can’t.” My daughter hung her head and sobbed.
“I see that you are exhausted.” Dr. Stevens’ voice was soothing and full of concern. “It’s been pretty rough? Maybe you took on too much,” she went on.
“I am such a mess. You don’t understand. I am not like I was when you saw me last.” She was pleading with Dr. Stevens to really see her, the young woman sitting there now, not the one who left six weeks earlier full of hope and enthusiasm.
“I am happy that you decided to come back. In the past you have had impenetrable walls built around you. I imagine it is scary when they aren’t there. I see that you feel very vulnerable right now but you know you are safe with us. It takes courage to come back and face it all again. I am glad that you did.”
A small grin broke on her tear-stained face.
“You know that I am not OK? That it hurts so much? Everything. My head feels like it is going to shatter. My knees ache. My back hurts. I feel like I am going to throw up. I have a terrible headache. All the time. I don’t know what happened. I thought I was all right.”
“We never know what is going to happen when a client leaves. We always hope that they will move on with ease. But, we did caution you that you were not ready. Stress is going to be your enemy. We need to help you manage it. You still have many unresolved issues. But, we will get there. Settle in and try to relax. Like I said, you are safe here. We want to help.”
“I am so lost. It’s scary to feel like this.”
“I can only imagine. We are going to try to make you as comfortable as possible.”
My daughter left the office and headed down the stairs before me. Dr. Stevens and I looked at each other.
“This was the right thing, bringing her back,” she assured me, “Her coping skills fell apart and she was left with no other way of dealing with all the pain. Her emotions have overwhelmed her. The pain in her body is real – it’s as if she has no skin. She has no protection from anything – physical or mental.” Dr. Stevens offered a weak smile and I hurried to join my daughter.
As I heaved the bookcases out of the rolling laundry cart I used to get everything from the car to her room, my daughter came back from her final meeting of the day. My arms and legs were shaking with exhaustion but she looked more tired. Bone weary, like for the last six weeks she had been racing at full speed and she had just run out of gas. She fell onto her side on the small bed.
“You know that I won’t be able to sleep, right?” her eyes were at half-mast.
“You look like you could drop off by just closing your eyes all the way. Try it.”
“The room is too much of a mess.”
“You can put things away tomorrow. Just try to sleep. I’ll be back in the morning. I love you.”
“Yeah, right. That’s what the nurse just said. She said that she likes me better like this, all f**ked up.”
“Did she say it like that?”
“No. But she said this is finally what they all were expecting. She said now the work can begin. Yeah, now that I feel like shit, I can dig in. That’s f**kin’ sick, if you ask me. What is everyone so proud about? This sucks. I feel awful.”
“I know, sweetie. I wish there was an easy way through this. A magic pill or a gate you could just walk through. But, unfortunately, I guess it is a process, working through and understanding the illness. Building from that knowledge with tools..”
She cut me off. “You don’t have a f**kin’ clue what you are talking about. This hurts. I don’t want to be here. We have made a terrible mistake. I want to go home.”
I sat down next to her. She shrank from my touch.
“I am sorry. I really am. I am going back to the hotel. I’ll see you in the morning. I hope you can sleep.” I leaned in to give her a kiss but she turned away.
“Just take me home, mom. I remember now that I hate it here.”
I got up and walked away from my daughter with my heart in my throat.
Half way down the hall I stopped and leaned over, bent in half with my hip against the wall, and tried to breathe. My daughter needed me and I left her alone. She was in pain and I turned my back. She was hopeless and pleading with me to help her and I closed her door behind me. I felt empty. I was too tired to think. Emotions swarmed over me – guilt, anger, resentment, obligation, terror, foreboding. I couldn’t find my balance. I stumbled from the building and braced myself against the cold wind and made my way toward the people singing Christmas carols on the porch of the Red Lion Inn.
I woke up on the morning of December 20, 2008 at loose ends. Should I go down to New York City as I had planned? Or should I stay here with with my daughter? I didn’t know what more I could do for her. She needed to settle in. I might be a distraction. A bus left at noon. By late afternoon, I’d be in New York City. It was my home for so many years, it felt like a refuge waiting. I yearned for the anonymous bustle. I wanted to lose myself in the perpetual motion, be one in a million and not answer to anyone.
I stood in the winter wind for half an hour, unflinching, numb. I climbed onto the bus to the city as the snow began to fall heavily. The normally three and a half hour trip took seven hours but I barely registered the time.
I felt like I had run over the family dog and kept driving.
I left the ruins behind but my heart, too, felt smashed and battered beyond recognition. I couldn’t look back.
This is the first part of the final post I wanted to write about my experience as a caregiver. I talked about my guilt at encouraging my daughter to believe in the psychiatric system in the post A Scented Memory and about getting lost in the system in On the Move and with these final two, I wanted to talk about what it feels like to see the problem but how impossible it was to fathom that the PROBLEM was the institution we had trusted to help our daughter.
We said for years that the drugs weren’t working.
We said for years that she seemed to be getting worse with each new treatment proposal.
We said for years that she might not make it, preparing ourselves for what seemed inevitable.
Our daughter fled the system not long after this but not before they nearly killed her with pharmaceuticals.