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Excerpt: “We're publishing five stories that show the personal and material cost that the families and friends of the mentally ill must take on when caring for a loved one.”

 (photo: Alamy)
(photo: Alamy)

'If You're Mentally Ill in America, You are Shit Outta Luck'

By Ruth Spencer, Amanda Holpuch, Guardian UK

01 June 14


s part of the Guardian's ongoing investigation into American mental health care, we asked you to help us illustrate the effects of the lack of access to mental health treatment. We received an overwhelming response.

Today, we're publishing five stories that show the personal and material cost that the families and friends of the mentally ill must take on when caring for a loved one.

'My mother texts me every day to make sure I'm still alive'

I'm a junior at ASU studying Filmmaking and Fine Art, and I'm living with Bipolar Disorder Type Two Rapid Cycling. I see a psychiatrist and psychotherapist on a weekly basis; these appointments are an indispensable part of my treatment. My medications are constantly being adjusted to find a balance, and psychotherapy brings me awareness of the patterns of my illness. Medication and professionals, however, make up only half the arsenal to combat my illness. My family and friends are my greatest allies. They revitalize me from the eerie brokenness of depression, and effectively keep me grounded in the electric-fury of hypomania.

I've been diagnosed and seeing healthcare professionals for over 18 months now. My father is a police officer and receives great healthcare benefits. I'm still on his insurance plan and he covers the co-payments of the doctor’s visits.

The monthly cost of seeing both of my doctors once a week, is about $400. Additionally medication costs about $30 a month. That's nearly $8,000 for 18 months. Plus, $350 for a 10-day hospital stay after a suicide attempt.

Before I was diagnosed or received any sort of treatment I was dysfunctional, indifferent towards my future, suicidal, self-destructive, self-medicating, perpetually moody, agitated, and I increasingly isolated myself from society. Medical treatment provided me the capacity to counter my illness, my family and friends became the excuse I constantly told myself to keep fighting the affliction. I'm very convinced that I wouldn't be alive today if it wasn't for others looking out for me and showing kindness.

I try not to think of myself as a burden on other people, although I'm sure it's true to an extent.

I've cost my parents a small fortune, and I've seen it affect them financially. They've had to change their lifestyle, to take care of me, to be there for me. My mother texts me every day to make sure I'm still alive.

I'm not cured, mine isn't a story of transcendence. I don't believe I'll ever break out of my mental prison. I don't even know how many more years of life I have left, but I can say that I wasn't forgotten or ignored, my life was recognized by others as having enough value to at least try and fight. – John, Phoenix, Arizona

'When my daughter killed herself, I died too'

My daughter had been diagnosed with clinical depression as early as eight years old. Living in San Diego, we had access to outstanding healthcare. We took her regularly to therapists as she was on my excellent health insurance plan. Her depression, with medication, was manageable.

She did well in school, even though we had a number of problems with her moodiness. She went on to college, graduated, and no longer qualified for my health plan. She got a temp job as a teacher for a year, then was out of a work.

I started paying for her doctor’s visits and medication. After spending over $40,000 dollars that I’d borrowed from my IRA, I was tapped out.

She had to rely on our county’s public mental health care to get the treatment and meds she needed.

There are some excellent and well-meaning people that work for counties in mental health, but they are so overburdened and burnt out they can only do so much.

At the age of 33, my daughter committed suicide. I died too.

I was unable to continue working. I wanted to work till I was 75, but retired at 72 because I simply couldn't do it anymore. I worked for the Army Corps of Engineers and found myself just sitting and staring at a computer screen all day and accomplishing little. That was five years ago, and my nightmares are now just beginning to subside and I can function reasonably well now. – Jim Fawcett, Houston, Texas

'It was a miracle when we found my brother a place to live'

If you would have told me 25 years ago that my family and I would still be caring for my brother, I wouldn't have believed you. He suffers from schizophrenia and has wreaked havoc on our family emotionally, physically and financially.

When we found him Section 8 housing in San Rafael 12 years ago, it was a miracle and only happened because we knew somebody who knew somebody.

This year, the Non Smoking Ordinance rendered him homeless. The man who drafted this legislation told me he 'just didn't think about' how the law would impact the mentally and physically disabled people who simply are unable to quit.

The people who owned and managed the housing were so compassionate and tolerant toward him, and tried in vain to get him to stop smoking on the premises before he was kicked out. But he really didn't belong there. He belongs in institutionalized housing and care.

Now, we are housing him in a warehouse, trying to care for him. Families should not have to provide psychiatric care for their loved ones. It just doesn't work. I am trying to scrape together a loan to buy him a place so that he can't get kicked out again.

A person suffering from untreated schizophrenia simply does not have the capability to make decisions on their own to benefit them. I firmly believe in compassionate but forced medication followed by care.

People don't have a clue of the horror you have to go through to care for a loved one struggling with mental illness. I can't really talk to people about it because they just don't understand. Basically, if you are mentally ill in America, you are shit outta luck. – Robert Butlerman, Bay Area, CA

'In a nation with a better mental health care, I might have been relieved by the knowledge that my brother was being cared for, rather than the fact that he is dead'

My family was briefly involved in caregiving for my brother, before he tragically ended his own life. After he died, I read his journal and learned he was living a nightmare: convinced he was in hell, that we were demonic forces out to get him, and also suffering from visions of self-grandeur.

In his early twenties, he began exhibiting symptoms of schizophrenia and bipolar disorder, which exacerbated rapidly and aggressively. To our great distress, there was little we could do. John (not his real name) was paranoid and distrustful, and resistant to any form of contact from us.

In 2010, the police found John living in an airport. My mother was able to convince him to come home with her, and our family was reunited for Christmas, which would be our last together.

It was heartbreaking to witness him in such a state of misery and to not be able to help him. On Christmas Eve, in a fit of rage, John threatened to kill himself if my parents did not give him money for a plane ticket, we had the great relief of hearing the words that we knew could get him forcibly institutionalized. We called the police and were able to have him brought to the hospital by ambulance.

My brother was released from the hospital after 10 days, which is not even enough time for a proper medication schedule to take effect. A mere month and a half after he was released from the hospital, he turned up at a San Francisco hospital, where he checked himself in and was found to be dehydrated. He was given some sort of treatment and promptly released. From the hospital, he headed directly to the Golden Gate bridge, which he jumped off.

Only because of John's hospital visit, from which he was still wearing a wristband, were authorities able to identify his body.

While I would give anything to have my brother back, it is terrifying to imagine many more years of the stress we experienced that Christmas, trying to constantly chase John down and keep him alive. He was suffering horribly during that last year; life was torturous for him, and his inability to care for himself made everything even more painful. When he was alive, every minute of every day I wondered, "Where is he now? Is he in pain? Is he scared? Is he hungry or thirsty? Is he safe?" I worried about the long-term cost – financial and emotional – to my family to keep him alive. I am no longer plagued by those questions. In a nation with a better mental health care system, I might have been relieved of them by the knowledge that he was being cared for, rather than the knowledge that he is dead. – Amy, Chicago, Illinois

'I have given up my own business and we have been through bankruptcy'

I am the caregiver for a mentally ill daughter with severe OCD, PTSD, and depression. I am daily support for checking her moods, administering her medications, and driving her to appointments. I am the first line to call emergency services in crisis, or to take her to the emergency room at the hospital.

She has been ill for 10 years. She is a college graduate who had been holding down a job and living independently. Our experience with the mental health system is that it is uneven and inconsistent with support and providers. There is a lack of agreement as to her best treatment and what local services exist.

I left my job so I could provide 24/7 support for the last decade. I have had to give up my own business and we have been through bankruptcy. Some local services for "adult daycare" have come available in just the last year where I can get some breaks.

Conservatively we have been out $80,000 a year in my lost earnings and $60,000 in hers. Treatment and medication costs for her run approx. $2,000 monthly.

I have some elements of depression in my own life due to the massive shift in family lifestyle and goals. There has been tremendous strain on our marriage, and we have lost some friends who did not understand what we were going through. My career is dead-ended and now all I have waiting for me is eventual retirement.

Our daughter lives with us so there is constant tension in the home. Vacations have been non-existent for years now. We live very frugally.

It is very peculiar that there is still tremendous social stigma connected to mental health disorders and their treatment. Even though great strides have been made in understanding brain disease, there is still a persistent element in society that does not believe mental illness exists and that people just need to "snap out of it." It is viewed as some sort of moral failure, as opposed to a brain that has a distinct disease process going on that can be identified and treated. Thank God for NAMI and the work they do educating the public and supporting families. – Rob, Gresham, Oregon your social media marketing partner
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