My cell phone rings.
“Is this ‘Robik’?” someone asks.
“That’s my nickname,” I answer, confused. “Who’s this?” It’s a police officer.
“We think we have your father here. He says he’s trying to get into your house.”
“I’m in my house. Where are you?” They’re outside, down the block. My mother and I run out to the street and approach the unforgettable scene: my father, old, grey and stiff, arms bleeding in handcuffs, is sobbing and yelling, surrounded by officers.
“You hurt me!” my father yells. “Why do you hurt me?” My mother and I, mortified and scared (please don’t shoot him, I pray to myself), run up to them.
“Does he have dementia?” an officer asks.
“Yes, I apologize for this.” I’m relieved to have an explanation. They take him out of the handcuffs and allow us to walk him home. My father tells me that he’s sorry, that he decided to take a walk but coming back he couldn’t discern which house was ours. So he started entering neighbors’ houses. We cry as we hold each other.
We had already warned him not to leave our house. We had already taken his car away. We were making plans to take away his cell phone. We were battling with the million little details of dementia. So we thought.
* * *
My father’s transition from being an independent person to one who could no longer care for himself was messy and prolonged. It took years for us to truly recognize his decline. We knew he was on antidepressants and anti-anxiety medications and that they didn’t seem to be successful. We supported his decision to sell his small business and go on disability because of debilitating stress and anxiety. He was nearing retirement age anyway. We agonized over his deteriorating driving skills and his increasing disorientation. We worried that he wasn’t taking his medications properly, or might even be over-medicating himself. But since he lived on his own — an hour away from family — we couldn’t be entirely sure what he was doing. To make matters worse, he was being sued by his downstairs neighbor for making excessive noise while walking in his home. We hired lawyers and acoustics experts and negotiated a settlement, but this is where my father seemed to spiral.
No one tells you when it’s time to take over for a parent’s care. You just realize that someone’s at the end of their rope, and they’re about to fall.
My realization came when my father’s housemate called us to let us know he had driven my father to his first electroshock treatment.
“Why is he getting electroshock treatments?”
“He says he’s depressed. He says he wants to die.”
When I called the clinic that was performing the “emergency” electroconvulsive therapy (ECT) on the advice of my father’s newest psychiatrist, it was clear to me that they did not know what medications he was taking, were expecting him to get himself to and from the clinic without driving (he planned to drive himself until we intervened and paid people to drive), believed he would actually follow their instructions (you’re not supposed to drive for at least a week after your last treatment), and believed he was on the brink of committing suicide. But my father was almost 70 and had never attempted suicide. I was alarmed.
Another important note: an MRI later revealed that my father suffered a mini-stroke (transient ischemic attack) some time before his psychiatrist signed him up for ECT.
“Do you know that my father is showing signs of memory loss and confusion?” I asked the clinician. “Are you sure electroconvulsive therapy won’t exacerbate this?”
“Although there can be mild memory loss from the ECT, your father is suffering from treatment-resistant depression, and the ECT can help him.”
He was wrong. It didn’t help.
* * *
You may have already heard that the statistics behind short-term and long-term effectiveness of psychotropic drugs are dubious — that for many people they simply don’t work or are harmful. You may have heard that the shifting emphasis on prescription drugs for mental health has not necessarily improved mental health. You may have heard about the hidden evidence that some antidepressants can increase a person’s risk of suicide. So consider this anecdote as a warning, with one important message: psychotropic drugs do not “balance” a person’s brain chemistry. They alter it, sometimes to an astonishingly harmful degree.
I never believed my father was clinically depressed. To the contrary, my father was gregarious, energetic and hard-working. He was a born performer, playing guitar, singing, performing as Santa Claus, emceeing wedding receptions, or reciting one of thousands of memorized poems and jokes. He had a witty, if caustic, sense of humor and he was always “on” in the company of others. The term “bipolar” or “manic depressive” would more aptly describe him, though his highs well outweighed his lows. I featured some of my father’s antics and talents in a compilation of old home movies — an entertaining glimpse into his typical disposition.
As I grew up, I recognized my father’s personality in people like Robin Williams (I’ll return to this point later). Like him, and like so many creatives with “dangerous gifts,” my father had demons. His marriage to my mother was deeply dysfunctional. He was a serial adulterer. His drinking of alcohol was likely influenced by his Russian genetic and cultural heritage. (Alcohol, I should note, is one of the most potent depressants a human can ingest.) And, as someone who had a family to support after immigrating to America at almost 40 years old, he shouldered immense levels of stress. He worked constantly. And the career he fantasized about, one full of music, singing and poetry, never materialized.
My father’s first foray into psychiatric medications coincided, not surprisingly, with the collapse of his marriage. A therapist prescribed Zoloft for depression. This was twenty years ago, before the term “chemical imbalance” was in vogue.
Following the Zoloft, two strains of a pattern emerged. Either my father would feel better and stop the medication, or he would feel worse and a doctor would increase his dose or introduce new medications. Throughout this pattern, my father continued to drink and never went to any sort of therapy. This lasted for close to two decades. He altered his mental state with pills and alcohol, which resulted not only in no improvement to his mental or emotional well-being, but ended with him abandoning his business and feeling worse than he ever had.
For me, there are a few clues that my father was misdiagnosed and mistreated. Medical professionals were probably rarely, if ever, exposed to the reality of my father’s bipolar personality, because when he was manically “happy” he was not making doctor’s appointments. It’s doubtful he confided in them about his level of drinking, partying and dysfunctional relationships with young women. Additionally, there was a language barrier. It was easier for my father to make simple statements, like “I’m depressed” and “I don’t want to live,” rather than try to find the appropriate English words to delve into his mental state and his manic lifestyle. He also probably became unable to differentiate between what might have been a side effect of one of the multiple prescriptions he was on, and what was his own self-diagnosed mental health issue. Most people, including doctors, don’t really know what the behavior they are seeing indicates. Unhappiness, sadness, boredom, stress, these can all come across to a doctor or patient as “depression.”
When he signed himself up for the ECT because he “wanted to die” and could hardly move his limbs, I’m betting his doctors and nurses didn’t stop to consider that a recent stroke and his self-medicating with alcohol and multiple psychiatric drugs might be contributing to his psychosis, or at least to cognitive impairment that could have led to the emotional devastation and anxiety he felt at the time.
One other thing I’m sure of: my father was a hedonistic pleasure-seeker. With his doctors, he found a high that could dull his senses and lift his mood. Although medical professionals may believe they are treating someone’s illness, my father, by ignoring things like therapy or sobriety, was enjoying the drug effect and sedation, the chemical fix for the unhappiness that came with the collision of his dreams and his reality. Meanwhile, the drugs wreaked continuous havoc to his brain.
Over the course of twenty years, my father was treated by or consulted with at least 16 different medical professionals who prescribed him a total of at least 21 psychotropic medications. He was frequently taking more than one medication at one time. Eventually, the antidepressants and anti-anxiety medications were not strong enough for him. His prescriptions were increasingly for antipsychotics, drugs that are used to treat schizophrenia and other psychoses, as well as anticonvulsants that are typically prescribed for mania.
Additionally, my father was taking medications for other maladies, like blood pressure, cholesterol and blood clots. It wasn’t until this year that someone pointed out to me that a statin can have neurological side effects, including depression, confusion and memory loss. My father had been on statins for years.
And, this is the hardest part for me to accept: It’s well-understood that SSRIs, along with several other drugs, increase the risk of a stroke. This is particularly true if a person has been on blood thinners, which my father had been. I’m still a bit enraged when I think about the fact that doctors didn’t warn my father that he could increase his chances of a stroke by being on blood thinners and antidepressants, especially considering that his blood pressure and cholesterol levels already made him a stroke risk.
* * *
Upon completing a whopping 11 ECT treatments, my father only became more disoriented, more forgetful and less coherent. We could no longer let him drive, so we sold his car and asked his doctor to notify the DMV that his driving was impaired. Having evidence of my father‘s recent mini-stroke and memory loss, the doctor surmised that it looked like he was beginning to suffer the early stages of dementia.
From then on, my father was ping-ponging between my sister, my mother and me as his caregivers. We prepared every meal, eliminated his access to alcohol, supervised nearly everything he did and dutifully took him to his medical appointments. This included an almost monthly visit with a psychiatrist. By 2018, my father was taking lithium for depression/bipolar disorder, lamotrigine for bipolar disorder, clonazepam for anxiety and sleep, donepezil for dementia, plus his statin and other medications.
Meanwhile, I became more and more alarmed by my father’s mental and physical decline. After reading a well-known tome about caring for someone with dementia — “The 36 Hour Day” — and joining a 20,000-member Facebook group for caregivers of people with dementia and Alzheimer’s, I was introduced to many symptoms that I recognized in my dad. He was emotionally volatile, frequently sobbing for no reason. His physical movements were impaired: he had trouble moving his limbs or bending his body in any way, which meant he never wanted to change his clothes, nor shower. His mental decline was staggering. He no longer understood basic facts, or people’s names, ages and relation to him. He had no ability to read, play guitar, or even watch television. All technology became a frustration to him. He had hand tremors. His writing ability regressed to the point that he couldn’t spell basic words and would write painstakingly and slowly, like a child. He asked the same questions over and over, compulsively agonizing about small facts. He had trouble seeing. He did damaging things on accident, like pour liquid soap into a cup and drink it, or leave a faucet on.
Worst of all, he developed extreme combativeness and aggression, even physically lashing out, and yelling angrily at the top of his lungs, often in public. We began to fear him and the increasing frequency of “catastrophic reactions” that are well-known in the world of dementia.
One thing “The 36 Hour Day” and all medical professionals seemed to agree on was the obligation to treat a patient’s depression, even if (and maybe especially if) the patient has dementia. But this did not make sense to me. His treatment for depression had all but failed for 20 years; I couldn’t understand why medical professionals pursued this unicorn of a cure. While they were busy experimenting with his brain, my father was becoming a monster, and it agonized us that he was behaving so wildly and dangerously with everyone who cared for him (and in front of my small children — who hated being around him). The only reprieve we got was when he slept, which was often. After all, the majority of the drugs he was on had major sedating effects. But when he was awake, it was like dealing with an aggressive, 200-pound zombie. We were nearing the end of our ability to manage him. We considered two end-of-the-road options: a memory care facility and/or much heavier medications. We toured some facilities and asked the psychiatrist for Seroquel. Seroquel is a “black box” drug, which means it comes with the FDA’s most serious warning for serious or life-threatening risks. It also increases the mortality rate for dementia patients. Even though it’s specifically not approved for dementia, it’s well known as an off-label treatment. To my shock, after all the hand-wringing we did about the Seroquel, I found out that my father had already had a prescription for it several years earlier, before the dementia diagnosis.
Between all the appointments, medications and terror in our home, a thought continued to nag at me: how could this man suffer such a massive decline? He was barely 70 years old. The people at the memory care facilities were wheelchair-bound and decades older than him. There was no way he could sit alongside them. He never wanted to sit. He stood and paced frantically, he could walk for hours. If he went to a facility, they would only sedate him more, because he would be a combative nuisance.
When we took my father to a neurologist to see if there was anything new to report on his latest MRI, we learned that nothing had changed. There was nothing more going on in his brain than his original scan showed two years earlier.
“Can you at least test him? Find out how bad his dementia is? We don’t understand why he’s behaving this way,” I said. But the neurologist said my father seemed to be past the point of being capable of sitting through testing. He couldn’t sit at the appointment, he was complaining and yelling from the moment we entered the room, to the moment we exited.
“You know, the dose of Seroquel you have him on is not that high. You might consider increasing it,” the neurologist offered. I felt so defeated. Not a single drug was improving his condition.
“Okay, but can we at least take him off some of these other pills? They’re clearly not helping.”
“That’s a conversation you need to have with his psychiatrist.”
We’d already had that conversation. Her response was to replace lamotrigine with Trileptal. She didn’t even know, and then was fairly unconcerned, about his dementia diagnosis. She asked him how he felt, he talked through his mental fog about how depressed he was and how it was the worst day of his life, and she typed on her tablet and tweaked his prescriptions. It was a textbook case of what I later learned is referred to as the “15 minute med check.” After a few of these appointments, it was clear to me that my father’s brain was a problem no one could solve and no pill had ever seemed to solve. Not only that, the fact that he was making life in our home impossible seemed not to register with anyone.
I came to the conclusion that because doctors are always going to aim for “treatment,” it’s very difficult for them to accept the concept that drugs are doing more harm than good and that abandoning them might be warranted. They are not thinking about discontinuation, tapering and the complicated nature of a body’s and brain’s withdrawal symptoms. When the medical professionals had seemingly no interest in my father’s completely “insane” behavior, I looked more closely at his medications. The side effects were staggering: blurred vision, tooth pain, memory loss, muscle stiffness, depression(!), suicidal thoughts, drowsiness, insomnia, aggression. I read about the tragic misuse of sedating medications on people with dementia and small efforts to end the practice. I read about the use of these incredibly strong psychotropic drugs on children in the foster care system, on prisoners, on migrants. I read in the caregiver Facebook group how many caregivers were sedating their loved ones with hardcore drugs, and treating them for depression and anxiety, and yet still experiencing agitation and violence, just like we were. A study even shows that long-term use of benzodiazepines leads to a significantly higher risk of developing Alzheimer’s. “Unwarranted long term use of these drugs should be considered as a public health concern,” the study concludes.
I also read about “polypharmacy,” which is typically defined by a patient taking more than five medications at one time. Polypharmacy is associated with an increase in adverse drug events, reduced functional capacity and several geriatric syndromes.
What are we participating in, I wondered? Why aren’t the doctors who are seeing my father get worse and worse scrutinizing the medications more closely?
I’m going to cut to the chase here:
My father now uses Skype on his own to talk to friends. He has a tablet to watch YouTube. He reads. He plays guitar. He’s memorizing new poems. He recently transcribed, quickly and with perfect spelling, the song he sings in the YouTube video. He plays with my children almost daily and laughs uproariously. We got him a dog and he walks her and loves her. He rarely sobs. He almost never yells. He changes his clothes and can shower by himself. He can walk to the neighborhood pool by himself, swim, and walk himself back without getting lost. His memory has markedly improved. And his severe muscle stiffness is gone. Hand tremors, gone. He can hop, skip, even sprint. He does push-ups and sit-ups in his room every day without prompting.
How did this happen?
Well, three months ago—without any medical professional’s knowledge or assistance — we eliminated his last psychotropic prescription (please note: abrupt discontinuation is not recommended). We have him on a healthy diet and a routine of physical activity. And no alcohol. And a little THC.
It was as if my father, the one I knew, came back from the dead. As the months go by and I watch him emerge from his chemical stupor, I am in disbelief that such a profound change can happen in a person simply by removing the side effects of medications (by removing the medications themselves). It occurs to me that for so long what we thought was his declining mental state could actually have been a state of disinhibition, the way one might feel when they’re high or drunk. His wild and impulsive behaviors, his disorientation, the loud and combative aggression — in hindsight they seem like that of a person who spent his waking hours inebriated. And now, in a matter of months, he’s sober.
Just imagine if we had let my father stay on the medications, as doctors prescribed. We would have assumed, for example, that his inability to write was a symptom of his dementia. If we had told his psychiatrist “he’s no longer able to write,” she would have chalked it up to the recent dementia diagnosis we told her about, and would have continued right on keeping him in the chemical cage that took away his fine motor skills. He would have spent years in the stupor, unable to write his poems and songs. How many other people, I wonder, are stuck in a chemical cage, not realizing that their mental and physical well-being has deteriorated because of side effects? A mere six months ago, we were considering memory care facilities for my father, and would have put him on more sedatives to manage him, which now seems truly absurd.
Now the flip side: He did have a mini-stroke and we do think there is some mental fallout from that. He is, and will always be, a drug-seeker, looking for the magic fix. He tells us often how terrible he feels, how depressed he is. The more coherent he becomes, the more aware he is of his loneliness, his sadness, and his boredom. A pill — I’m convinced — won’t fix that. It never did. As his voluntary caregivers, we do what we can to keep him active and stimulated, as well as safe and healthy. We’re not going to let him drive, and we still supervise him almost everywhere. But — and I’m not exaggerating — all of the monster-like qualities that we thought were severe symptoms of his dementia have practically disappeared. The spectrum of his emotional volatility narrowed substantially. We’ve found ourselves questioning whether he has dementia at all.
* * *
So, a word about Robin Williams:
When Robin Williams committed suicide in August of 2014, within days the world began talking yet again about the need to treat depression. Everyone seemed to gloss over the fact that Williams was misdiagnosed with Parkinson’s disease. His wife wrote about “chemical warfare” in his brain, the symptoms of which went far beyond depression and into confusion, memory loss, paranoia, intense anxiety and insomnia. She was keen to pinpoint the final diagnosis — Lewy Body Dementia — as the culprit responsible for his suicide. Few talked about Williams’ multiple medications as a potential issue. Like the fact that he had taken two medications for Parkinson’s, which not only can lead to psychosis, but are specifically flagged as inappropriate for people with psychiatric disorders because they can lead to psychosis.
On top of the Parkinson’s drugs, Williams was also taking an antidepressant called mirtazapine, a “black box” drug with noted suicide risk. Additionally, Williams had taken out a prescription for Seroquel mere days before his suicide. Williams did indeed have “chemical warfare” in his brain. But we can never truly know how much of the culprit was his dementia, and how much was the number of psychosis-inducing, sedating, debilitating chemicals that the doctor who was “treating” him prescribed.
Susan Schneider, Williams’ wife, made clear that Robin Williams was being treated for depression. He was, after all, a star with the best medical resources and treatments available to him. It’s not like they weren’t going to treatment. Schneider described at least a year of doctor’s appointments, of trial and error with medications, of worsening symptoms, of a “terrorist” inside her husband’s brain. It was as if she was speaking about my father. But my father got better. He may still call himself depressed, but he’s sober, stable and coherent, the value of which he will probably never admit nor appreciate, because he doesn’t remember what the monster in him was like.
Having had this experience, the way I look at psychiatry and psychotropic medications has completely changed. Of course, I understand that they work for some people (though time and life changes also work). I know stories of people who have had specific mental conditions and behaviors that certain medications helped alleviate, usually in combination with self-care, psychotherapy and eventual discontinuation. Antidepressants might be an important tool in certain situations, though the benefits have repeatedly been shown to be small, especially when compared to a placebo.
However, I can say with certainty that doctors and psychiatrists often don’t really know if they’ve got the diagnosis, the treatment, or the symptoms right when it comes to mental health. They often aren’t taking time to understand the brain they are altering. They are often unaware of what other medications the patient might be taking. They don’t know if they’re treating the patient, or the patient’s side effects. And they can’t be sure that the cure isn’t worse than the disease.
If you are being treated with psychiatric medications, please consider my warning:
They are experimenting.
At the end of the day, the psychiatric drugs you or your loved one are on are sedatives and chemicals. Some go so far as to call them neurotoxins. The longer you use them, the weaker your brain gets at being able to regulate itself on its own. The higher your risk of deleterious effects. And the harder it is to get off them. But sometimes that’s exactly what needs to happen.