The Final Post
This is the second part of my final post for Borderline Families. In the post A Scented Memory, I talked about my guilt over encouraging my daughter to believe in the psychiatric system and in On the Move, I wrote about getting lost in the system. With these final two, I wanted to deal with 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. In this final two-part post, I wanted to write about my experience as a caregiver.
Part one: A Charade ended with me returning my daughter to Austen Riggs Center in Stockbridge, Massachusetts, a brief month after her first four-month stay.
A caretaker is expected to be wholly involved and unemotional. I had reached the point where I had nothing to give. I left my daughter in her room, caught a bus and checked into a rundown hotel in mid-town Manhattan.
I sat on the end of the bed in the room for days. A strange buzzing in my ears both blocked sounds and amplified them. I heard faint wisps of laughter from down the hall. Car horns sounded like they were bleating in my head. I watched taxis splash through slush and sleet seven floors below. I sat, not moving a muscle, as if I might break. At some point that first night, I climbed into the bed. I felt coiled up like a snake ready to strike.
All my senses were firing random signals. A loud steady stream of recriminations told me to get back to my job, to take care of my daughter. I didn’t sleep. I was tense, my muscles twitched. I wondered if my heart was irreparably broken.
My cell phone rang early, just as the sun was breaking the horizon sending delicate shafts of winter light through the streets below. My daughter had not slept either and she wanted EVERYTHING. NOW. CALL THE NURSES!
I took up my post at the end of the bed. I watched the day pass but saw nothing. I did not call the nurses. My initial anger at their lack of compassion was dissolved by the apathy that engulfed me. I didn’t call anyone. I sat. I looked out the window. I felt nothing as long as I kept my mind blank. At times a thought or a memory would drift in and piercing pain ripped through me. I waited it out.
Living for so long at constant readiness had left me unable to let my guard down. I felt outmaneuvered, mowed down by this once familiar situation. I knew how to take care of my daughter. What was wrong with me? Save her! I felt paralyzed.
I tried to heal myself. I eventually got up and took long walks, visited a chiropractor/healer, ate with friends but the fact that I had left my daughter in such a precarious state made me sick and I felt newly traumatized each time that she came to mind. Which was all day, every day.
It was hard to convince myself to honor that I had done everything in my power to help my daughter.
I returned to Austen Riggs a couple of times during the next two weeks. Each time she was worse, miserable and mad. Each time my daughter had developed new twitches and each time the nurses dismissed them. I stayed up into the early morning hours researching drug combinations. I paced the floors of the Red Lion Inn waiting for a reasonable hour to visit and ask my questions.
“Her right arm is flinging out into space. How much Haldol do you have her on?”
“She was started on Cogentin. Those symptoms should subside.”
When I returned to Minnesota, I reviewed our bills from Austen Riggs and pulled out the statements from the pharmacy. This is the “premier facility in the country for the treatment-resistant patient” and they were drugging the life out of my daughter.
Their reliance on pharmaceuticals was the backbone of their “success”. They should have said,
“We drug our clients into submission.”
My guess is that one hundred years from now the sedation techniques and useless attempts to corral my daughter’s mind with locked doors and rules will be viewed to have been as barbaric and innocuous as attaching a leach to cure a fever.
Psychiatry has lost its way. Poorly verified diagnoses and ineffectual medications, coupled with talk therapy that did not promote coping strategies, help with sorting out her reasoning skills or hone her ability to manage relationships had all failed.
For a couple of months during her first stay, it looked like they were tapering off the drug regimen, clearing her system, but when she returned, there was a startling increase in medications being administered. More importantly, my daughter’s discomfort continued through every drug recommended. Didn’t anybody notice?
My daughter rebelled. She entered into a two-week reevaluation phase. They were weighing two questions – could they keep her safe and could anyone create an alliance with my daughter that would hold? My daughter was too aware of the drug-pusher’s motives and probably not going to drop her dislike for them. But, I was hopeful. I still believed in the system.
Emily, the social worker who was assigned to be our liaison suggested a back-up plan – a long-term facility called Windhorse. Rural, farm, horses. I couldn’t picture it working for my very urban daughter. Emily gently told me that she didn’t think that my daughter would be able to live independently, certainly not in the near future and if the committee did feel that she couldn’t stay at Austen Riggs, we needed to be ready to formulate another plan for her.
My world spun out of control. This is not the future I envisioned. I had a different plan for my daughter – one where she survives and prospers. She leaves Austen Riggs healthier than when she entered. PLEASE.
During a conference call a couple of months into her second stay, my daughter insisted that the community of Austen Riggs was bringing her down. She didn’t think that she belonged there anymore. She also wanted to make it clear that she had been asking for help and not getting any.
“Maybe I want to be kicked out. Day in and day out – no end in sight. I want to go live in a shack by the ocean and drink myself to death. I do not want to live a mediocre life like you, mom. I can’t imagine it. I would die of boredom. I want to leave here. Basically, I feel like you are ruining my life by making me stay.”
“Drinking is the only reliable thing in her life right now,” Dr. Stevens, her therapist, sounded measured as she went on carefully. “She doesn’t believe that there is a human relationship that could be helpful. No one is trustworthy enough.”
My daughter broke in, “I don’t understand how you expect someone to live here. Everyone is obsessed with themselves, living “an examined life”. Look at how hard I have tried to survive. I would have been dead years ago if I wasn’t trying so hard. Right now I hate myself too much to stay here and scrutinize every little thing. I want to be alone. I don’t want to bother with anyone. I don’t know who I am. I don’t know what I like. The floor is shifting under me. My heart doesn’t know what it wants.”
My daughter was worked up and crying hard. She took a deep breath as she asked in a quivering voice, “What are you going to do?” She was sobbing and I barely made out, “It is not worth it. I want to start my life now. Again. Leave everything behind and start again, new, today.”
Our fifty-five minutes was up. I felt like we had followed my daughter to hell. Emily said that they would get her back to her room and alert the nursing staff that she had had a difficult meeting.
I didn’t want to hang up. I wanted to rip through the phone lines and hold onto my daughter. I would have torn off my skin if she could have used it. Instead, I was absolutely powerless.
I had arrived home from New York a couple of months before on empty and my husband had tenderly, painstakingly filled the emptiness. He’d let me ramble on about how I wanted to help her and he’d nod when I remembered that I couldn’t. He knew that I was coming to grips with just this conundrum.
It was my daughter’s life and we had run out of possibilities.
And, then she fled the system.
Within a week of the conference call, she had packed up her jeep and was living in Brooklyn.
The saying goes that you carry your problems along wherever you go. Yet my daughter was able to quickly reinvent herself, or she might have said, she found herself, and fell into syncopated rhythm with the city. The wild pulse, the endless hustle and commotion concealed, even seemed to absorb some of the tumult in her head.
When she loses her composure less people are apt to notice. That’s good and bad, but mostly, it is what she wanted when she asked for a shack on the beach where she could seal herself away. In Minneapolis, her dress and her off-kilter energy stuck out like a disco ball in a chapel. In treatment, everyone was always trying to discourage her individuality. My daughter feels that New York City lets her be herself, no questions asked.
My husband and I try to be supportive without getting into her day-to-day life. We continue to pay her health insurance and know that her anxiety is too unpredictable so that holding a job is out of the question for right now. We send money weekly. She has friends. I don’t know if they know my daughter’s past or if they are aware of the long and painful journey that got her back to New York where she was born, but they are there if she’ll let them in.
As for me, I joined her but it took time. I wasn’t as sure as my daughter was that turning our backs on the one and only system that had offered us help was a good thing.
Yes, the system had failed her repeatedly. I faltered because my daughter was going through withdrawal from the tons of meds Austen Riggs had her on when she left and I read her behavior as uncontrolled “mental illness”. I did. I am sorry but she was in excruciating pain for months, sobbing in cabs, hallways, having angry tirades while walking across the Williamsburg Bridge, holed up in her apartment for days. She was always reeling me into the chaos, demanding I do something to relieve the pain. Mostly, I just listened.
For nearly a year after she left Massachusetts, the withdrawal took its toll. Suicidal and irrational, sick and scared, she swung into moods that couldn’t be washed away with alcohol.
I went to New York to hold up the edges of her world when the calls were hushed/suppressed. Those are still the calls I pay attention to. The quiet ones, the calls for help.
As time has passes, my daughter’s brain is healing. Without the psychotropic drugs, the downs are still very black, but they do not last as long. And, the ups are still rather wild, but the middle ground is much more stable and, with time, I think she will find herself there more often.
I am not alone. I know that there are many devoted parents, spouses, and friends just like me who have watched a very similar story unfold. When we first sought help, we looked were everyone looks first – to the professionals.
We followed the doctors orders for years but we discovered that they do not have the answers. I set out to learn more. I read Robert Whitaker’s books, Anatomy of an Epidemic and Mad in America. I read Breggin, Moncrieff and Szasz. I read Gianni Kali’s blog, Beyond Meds and Susan Kingsley-Smith’s blog, A Journey. I haven’t stop reading.
I tracked down the “movement” which had been there all along, right under my nose. And, I joined up because I thought that if I could help one family just entering the system from losing their footing and giving away their power like we did, my involvement would have been worth the exposure.
I opened our doors and talked very candidly about my guilt at having been complicit in my daughter’s involvement with the psychiatric industry. I was transparent, thinking that by being honest, telling the whole truth, that I could bypass the naysayers and win over skeptics.
There are some very damaged souls who are part of this movement. I wasn’t prepared for their manipulation. I find that their anger and abusive nature are undermining to my message which is simply:
You are not alone.
There are hundreds of thousands, maybe millions of people who are directly affected by the psychiatric system through friends and family members. These people who have stood next to their loved-ones want what is best for long term physical and mental well-being.
We want our loved-ones to be presented options to drug therapy which seems to be the first and, too often, only option presented when seeking help.
We want that the issues presented as problems be filtered through life experience – economic, family dynamics, and other common causes of stress which should not be translated into an “illness” and added to the DSM (shyness, shopping, etc.). Empower healing through outreach programs, job training, parenting classes, etc.
We want to change the language associated with emotional and cognitive distress.
We want safe and affordable care for times of acute distress which are not hospital based (peer-run and drug free when possible).
We want our loved-ones to be presented with affordable options covered by insurance, including acupuncture, nutrition guidance, membership to exercise facilities. And, we want these options to be presented as a First Line of Defense in the place of a prescription for a quick-fix with pharmaceuticals.
We want that the prescribing doctor be honest about the side effects of drug therapy and the change in the brain AFTER drugs are introduced (the creation of chronic need).
We want that when psychotropics are prescribed, that the side effects, including the predicted loss of years to their lifespan, be discussed at length.
We want every doctor practicing to read Anatomy of an Epidemic. Everyone – from psychiatrists to General Practitioners and all “specialists” in between.
We oppose any kind of involuntary psychiatric intervention on behalf of our loved-ones.
We also oppose the “voluntary” treatment that supports the notion that the normal human condition can be solved by psychiatric/medical means.
“Caretaker” is a pejorative word, really. But, in changing the language I have to make some concessions so that people understand what I am talking about. Although I have been taking care that my daughter is safe and has a roof over her head every night, I am not a caretaker. She does a very good job at taking care of herself. I step in when she stumbles. I am a woman with so much love her daughter, I could burst. I am a mom. Lately, I have been a mom on a mission.
As I step away from this blog, I am not abandoning the movement. I think we need the transparency I have used. I think we need to keep telling our families’ stories and I know that in doing so, we will draw in people like me who are sitting on the fence wondering if they should jump into the unknown.
I am here to say, the other side of the fence is far less scary than the fraudulent world of the psychiatric industry. Our family was intimidated and shamed and my daughter’s life was altered forever when we gave away our power to the psychiatric industry.
Alternative approaches are available in every community. Start with a healthy diet, a little exercise. Add mindfulness training, meditation. Most alternative methods of healing can be added to existing medication. Take your time getting off of prescription meds. The key is to feel better and hopefully, eventually, not be dependent on pharmaceuticals.
Thank you for spending time with me as I came to grips with this drastic change in our lives; we abandoned one system but were greeted with open arms by the online community. I am very thankful for your support. I gave weight to each of your heartfelt comments and appreciated that you took the time to pass on your ideas.
I will begin another project after the first of the year. Until then, I will keep the Borderline Families blog online.