A Baffled Look

The straight dope on mental health

Month: April, 2013

Assisted Living Nightmares

I found an article in the Miami Herald about the horrible conditions & lack of regulatory oversight for Assisted Living Facilities (ALFs) in Florida. ALFs are supposed to serve the elderly and disabled, including the mentally ill. I’m trying to understand the incentives that make the police and the regulatory agencies not get involved with the abuse and neglect of residents who are injured or die as a result. The people running these abusive ALFs should be charged with assault or manslaughter. But it’s hard to make arrests or impose fines when an abusive ALF falsifies records as in the case with some of these facilities. It’s no wonder the folks at the drop-in center where I used to work prefer the streets to ALFs and homeless shelters. I remember when I interviewed one man at the drop-in center a few years ago he said he left the ALF he was living in because it was so abusive that he’d rather be homeless. So jails, and ALFs are the new asylums.

The Miami Herald did a wonderful job exposing the abuses at the ALFs. The articles about it were timely because the Florida legislature refuses to add more regulatory oversight for ALFs. People at ALFs aren’t well enough to vote so no one in the legislature has the incentive to improve the system. Florida State Senator Alan Hays of Umatilla states, “Many of these facilities are already strapped; they’re trying to balance quality care with their staffing needs and that sort of thing…I don’t want to do anything to take away from their ability to care for their residents.”

I’ve heard this one before. Somehow laws that increase oversight and accountability are interfering with care. I hear it again and again. The reason conditions are so terrible is because the owners of these facilities make more money by providing less care. It’s business as usual. According to the Herald’s article, the ALFs are guaranteed an average of $674 a month from Social Security and a daily stipend of $9.28 for residents with mental illnesses. So that comes to about $952.40 a month for each mentally ill resident. It’s not much so the owners have an incentive to provide fewer services in order to make more money.

The Florida Agency for Health Care Administration (AHCA) is the regulatory agency responsible for overseeing ALFs. They used to have strict standards that were once one of the most regulated in the country. The Miami Herald reports that “as the industry boomed, AHCA failed to keep up with the growth, with state agents taking longer to respond to dangerous breakdowns. A Miami Herald analysis shows it took inspectors an average of 37 days to complete complaint investigations in 2009, 10 days longer than five years earlier.”

If the laws are not funded they are difficult to enforce. ALFs are inspected once every 2 years. They could improve their funds through fines, but it costs the state even more to relocate residents if they shut a facility down. The Department of Children and Families (DCF) investigates abuse at these facilities, but unlike AHCA, they don’t have the authority to fine or shut these places down. AHCA is in charge of the Medicaid programs in Florida. An article by Reuters states that the Florida legislature refuses to accept funds from the federal government to expand Medicaid. And nowadays the regulations have been gutted to the point where the only requirements for running an ALF are a high school education and 26 hours of training.

It’s a good idea to look up inspection reports on AHCA’s website. View this video on how to look up ratings and inspection reports for Florida’s Assisted Living Facilities.

And if things weren’t bad enough, there’s another reason to look up Assisted Living Facilities on AHCA’s website. Some facilities claiming to be ALFs aren’t licensed. AHCA’s website lists licensed ALFs in your area so if an ALF isn’t listed on AHCA’s website, it’s probably not licensed.
The incentive behind all this is greed, pure and simple.

Fat, Starving and Crazy

In a previous post I mentioned that the antipsychotic Zyprexa made me gain 45 pounds. Many psych meds cause weight gain. A lot of the folks at the drop-in center where I used to work are obese in spite of their lack of money to feed themselves (the drop-in center serves food and provides many amenities such as a place to shower). These days, poor people are more likely to be obese because they lack money to buy fruits, vegetables and unprocessed foods. Junk food in poor areas is cheap and there are few stores that sell fresh fruits and vegetables. These neighborhoods have no grocery stores and even if they did the fresh food is too expensive for them. The people that frequent the drop-in center often run out of food stamps and money to last through the end of the month.

Metabolic syndrome, which causes the inability to process glucose, can be caused by some antipsychotics. Poor diet can also cause metabolic syndrome so the folks at the drop-in center have a double whammy to deal with. Severely mentally ill people live shorter lives partly because they are usually too poor to eat properly and because of the metabolic syndrome caused by their medicines make it very difficult to lose weight.

So the folks at the drop-in center don’t get the nutrients they need from junk food so even though they are fat they’re malnourished. According to the Huffington Post, lack of proper nutrients in junk food harms metabolism and makes your body want to eat more because it’s not getting the nutrients it needs. Wired magazine has an article about obesity and homelessness in Boston. One in three of the homeless population in Boston is obese and malnourished. By malnourished I mean they aren’t getting enough nutrients. Another thing, some psych meds make you hungry all the time. Imagine feeling hungry all the time and not having enough food to eat. It must be torture. Their neighborhoods are too dangerous to go outdoors and walk. The meals at the drop-in center where I worked are fairly nutritious, but they have to buy cheap food in order to stretch out their food budget. I remember those huge, gallon sized cans of vegetables they used. They are also constrained on having enough time to get the food cooked by the time they open at 11 am. So they have to rely on processed food that’s quick to make and will store for weeks.

I read a New York Times article about how food is engineered to entice people to eat more. These foods are made so people crave them. According to the article, this condition is known as “sensory-specific satiety.” It means that there is a tendency for prominent, distinct flavors to overwhelm the brain, which makes you feel like eating less. Sensory-specific satiety became a holy grail for the processed-food industry. They use complex formulas that stimulate the taste buds enough to appeal to a person’s appetite but don’t have a distinct, overwhelming, single flavor that tells the brain to stop eating.

Mentally ill people are already stigmatized enough for their illnesses. They don’t need more isolation from others because they are judged by others even more for being fat.

A Dubious Marriage

A lot of people have a romanticized notion that there’s an advantageous link between mental illness and creativity. The Pulitzer Prize winning novelist William Styron, author of The Confessions of Nat Turner and Sophie’s Choice, experienced major depressive disorder. The notion that he was some kind of tortured artist whose madness fed his work minimizes the tragedy of his later years. For the last 27 years of his life he didn’t complete a novel that he had been trying to write during most of his adult life. Writing novels was the thing he loved most. It wasn’t for lack of trying. He wrote plenty of drafts that he didn’t finish and had he felt better who knows what his genius would’ve produced. Mental illness robbed him. In his daughter Alexandra Styron’s memoir Reading My Father Alexandra believed not writing made him depressed, but his editor of 47 years said it was the other way around. Depression kept him from finishing the novel that was most important to him.
Styron’s major depression occurred rather late in his life – at age 60 – soon after he quit drinking alcohol. He wrote a short memoir of his first bout of depression called Darkness Visible: A Memoir of Madness which was published in 1990. He received an overwhelming response and he wrote back most of the people who wrote him. He didn’t become depressed again until 15 years later.
The end of Alexandra Styron’s memoir of her father is excruciating to read. He was very sensitive to the side effects of the antidepressant medicines his doctors prescribed him. He tried ECT, but after a few treatments he became so psychotic he had to be hospitalized. In the hospital he became too paranoid and delusional to comply with more ECT treatment.
The studies exploring the link between mental illness and creativity contradict each other and we’ll never know the truth about the link until they standardize the criteria for creativity. And I’m not really saying that the tortured artist cliché isn’t true. I’m saying mental illness eventually robs them of their ability to work. It destroys careers.
The poet and novelist Sylvia Plath experienced major depression also. Her autobiographical novel The Bell Jar chronicles the events leading up to Plath’s attempted suicide and subsequent hospitalization. It’s as powerful a portrayal of severe depression as Styron’s Darkness Visible. Plath killed herself at age thirty soon after writing her best poems which were later were published posthumously titled Ariel. In contrast to William Styron, Plath’s first bout with depression occurred at age 19 and in Plath’s final days were productive. Who knows what she would have written had she not committed suicide at such a young age. Like Styron, Plath’s severe depression robbed her. The dubious notion that mental illness enhances creative work is pure fantasy. Depression destroyed William Styron and Sylvia Plath.

The Road

I’m reposting this because I don’t like what I posted Friday this bears repeating.

I just finished reading Cormac McCarthy’s The Road. The novel portrays a post apocalypse America and a man and his son struggle to survive. Their lives are consumed with finding food and shelter and staying out of danger. I wonder if McCarthy used the plight of the homeless to inform his readers on what it would take to survive in the novel’s setting.

The protagonist and his son even use a shopping cart to move their meager possessions. It’s a symbol of plenty in an age of scarcity. A lot of homeless people use shopping carts. They are constantly searching for their next meal as the characters do in the novel. The people the protagonist and his son run into are dangerous. They have to be constantly vigilant of being robbed or having their provisions stolen. The man and the boy have to hide their shopping cart so they can sleep without losing their stuff. Like the homeless, they risk everything when they sleep. They avoid contact with other people because they can’t trust others. In the novel, the man and the boy avoid houses and towns because they may harbor dangerous people. The homeless people at the drop-in center where I used to work avoid homeless shelters and assisted living facilities because it’s too dangerous. Like the novel, the folks at the drop-in center experience constant obstacles to getting their basic needs met. Like the homeless, the man and boy in the novel have few opportunities to attend to basic hygiene.

In the book, the cities and towns are abandoned because of some kind of apocalypse, but homeless people live that apocalypse every day and their numbers are growing. There are no authorities left anymore in the book and there are none for the homeless today. They can’t trust the cops and most of the folks still lucky enough to have a place to live don’t want them around so the homeless are in effect without protection. Imagine how much worse it is for someone already tormented by their own perceptions to also live in a kind of hell on earth. I sometimes wonder which came first for the clients of the drop-in center, homelessness or mental illness.

The Road won the Pulitzer Prize. It’s gripping and McCarthy’s prose is beautiful. If you want to walk in the shoes of a homeless person this is the book to read.

All I wanted was a little fun

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Many years ago a friend of mine and I were canoeing along Florida’s Wekiva River and decided to take a detour down a dense tributary. We encountered a partially submerged log that blocked our path. My friend and I got out of the canoe and lifted it up to our chests as we stepped over the log. I examined the pattern in the bark and admired how the two most prominent and regular features formed parallel lines down opposite sides of the log. It was this consistency in the features that prompted me to realize that I was not looking at a log. I was looking at an alligator’s tail. The thickest portion at the water’s surface was about ten inches in diameter.

So what did I learn? If you’re going to venture off the beaten path, then pay attention.

It didn’t help that when I went on the canoe outing I mentioned above that I was – how should I put this – let’s just say I was in an altered state. My friend and I thought it would make us more “aware” of our surroundings. That it obviously didn’t was completely lost on me at the time. The lesson from the alligator didn’t sink in until many years later.

For several years I did what a lot of people like me do: I self-medicated. Almost as soon as I started drinking and smoking pot, it became a daily ritual. I began to experiment with everything I could get my hands on. I started dying clothes I bought at thrift stores in loud, clashing colors. I sewed plastic ants on my clothes. I believed I was an incarnation of the Dada art movement’s Marcel Duchamp. The way I saw it, substances made me feel better and helped me fit in. I didn’t notice that the people I surrounded myself with grew more marginalized and violent. I really thought I was completely original and had escaped the stifling existence as a corporate lackey that so many of my public high school cohorts had embraced. I have since learned that people in a manic state will dress bizarrely and often have grandiose delusions (like believing they are an incarnation of someone famous or of historical significance). For a long time I didn’t see my bizarre dress and delusions as a symptom. I had no idea that I was ill so it wasn’t my fault. I sensed vaguely that something was wrong, but had no idea what it was.

Now I have no such excuse. I have to pay attention to my symptoms to avoid trouble. My illness puts me off the path that most people follow. I was afraid if I took medication I would lose my creativity. That hasn’t happened. I have much more focus and discipline and, unlike the old days, I finish what I start. I try not to judge myself for the things I did before being diagnosed with bipolar disorder, but I have to pay attention and be honest with myself about the typical symptoms I experience that could be an indication of relapse. It sucks to constantly evaluate my thoughts and behavior but it’s better than experiencing a relapse.