My Mother Had to Be Dying Before Anyone Would Take Her Off the Drugs

My phone lights up with my mom’s name in the middle of a workday, and I already know what I am going to hear, because it has been the same for over ten years.

“I CAN’T SLEEP, I CAN’T EAT, I CAN’T WALK, I CAN’T DO ANYTHING. I JUST WANT TO DIE.”

She screams it, crying, and then she says it again. Some days she calls more than thirty times.

I want to tell you who she was before any of this, because otherwise this would just be a sad story. My mom is the kindest person I have ever known.

The Woman on the Other End of the Phone

My mother was orphaned young. There was nobody to fall back on and no version of her life that anyone was going to arrange for her, so she worked it out herself. Whatever grit I run my companies with, I got secondhand from her.

In Vietnam she was a teacher. In California she became a hair stylist, and her clients adored her, the kind of loyalty where people follow you from salon to salon for twenty years.

Raising us, there were years she worked two jobs. She was up at 4:30 AM for the gym every day, then home to make fresh juice, cook, pack my dad’s lunch, clean and get us ready and drive us to school. Then work. Then home again to take us to after school activities, make dinner, finish the rest of the house, tend the garden, walk in the evening, and feed the animals nobody else wanted. A bird with one leg. Two rabbits, one of them with one eye. A tortoise, a guinea pig, lizards, the cats, the dog. People abandoned them and she took every one of them in.

That was one day, and then she did it again the next day. She never once complained about any of it.

The tips she earned as a stylist went into taking us somewhere once a year, not to rest, but so that her children would stand somewhere new and understand that other people lived differently and that their ways were worth knowing. On those trips she took us to orphanages, where she handed out food and school supplies and toys, whatever she could afford that year.

She had been one of those children herself.

By the time we were grown and she had retired, those were supposed to be the good years, the ones she would spend traveling with her kids.

2016: When Everything Changed

By 2016 the stress was enormous, her sleep had stopped, and menopause was on top of it. My dad suggested a piece of chocolate with THC in it, thinking it might help her rest. She ate it. He was trying to help her.

What followed was a panic that did not stop. Suicidal, screaming, for a solid week. We kept waiting for it to clear her system, the way you wait for a fever to break, and it never did.

She was hospitalized, put on antidepressants and antipsychotics and medication for anxiety, and then discharged. After that came the loop, and we could not find the exit from it for years. Involuntary holds, stays that ran a month or longer, discharge, deterioration, back again. We went to the best psychiatrists in Southern California. We went to UCLA. Over those years she was diagnosed with schizophrenia, then schizoaffective disorder, then bipolar disorder, then major depressive disorder, then psychosis, each new label replacing the last one and each new prescription meant to answer the one before it.

She had none of them. A woman in her sixties does not simply become bipolar one year, and not one of those labels ever fit the mother we knew.

What Was Actually Happening

She was having a severe adverse reaction to the drugs.

The worst of it has a name that most people have never heard, and I want to describe it properly, because the word alone does not carry it. Akathisia is not anxiety, and it is not restlessness in any sense a well person would recognize. It is a state the medication creates in which being still is not possible. There were days my mom paced for twenty hours without stopping. She would sleep for a few minutes and then be pulled out of bed by her own body, not because she wanted to be awake but because lying down had become unbearable. She could not tolerate music. She could not tolerate being talked to. People who have lived through it describe wanting to climb out of their own skin, and that is the closest description I have found to what I watched happen to her.

The part that took time to understand is that the wish to die is not something separate that arrives alongside it. It is part of it. When my mother screams that she wants to die, she is not depressed in the way most people mean that word. She is inside something her body cannot get out of, and dying is the only exit she can see. Almost everyone I have come across who has been through akathisia arrives at that same place.

Every time the drugs made her worse, it was read as the illness worsening, so the dose went up or another drug was added, and that drug had its own effects, which were read as illness and treated with another drug.

No doctor told us any of this. I worked it out, at two in the morning, after the workday and after the house had gone quiet, reading studies and clinical trials and patient forums, looking for anyone describing what I was watching. I am not a physician. I am the daughter who would not let go of one question, which was: What if the medications themselves are part of what is hurting her?

The Days They Told Me She Was Sleeping

There is one hospitalization I have to tell you about, because it is the clearest evidence I have that I was not imagining any of this.

She was on a 5150 hold, which is what California calls an involuntary psychiatric hold. Early on I asked to speak with the doctor who was treating her, and on that call he told me that elderly people get bored, and that is why they become depressed. I have not been able to put that sentence down.

Then he treated her. Every time I called the unit to ask how she was, the staff told me she was sleeping. She was sleeping when I called in the morning, and sleeping when I called in the afternoon, and sleeping again when I called at night. After enough days of that I stopped believing it, and I pushed until they let me in to see her.

I found her with her head and neck cramped over to one side and held there, drooling. She could not eat. She could not talk. She looked at me with nothing behind her eyes.

We begged them to discharge her and they told us they could not. So my siblings and I took her out ourselves and drove her straight to a different hospital, and that hospital found lithium toxicity. It came from what the first doctor had put her on. The same one who had explained to me that elderly people get bored.

She had not been sleeping. She had been medicated to the point where she could not speak or move her own head, and the people telling me she was resting were standing over her every day.

That was not the only stay like it. Another time she was held for over a month. When they finally discharged her she could not walk straight and she was drooling, and on the freeway on the way home she tried to jump out of the moving car.

After that I knew to put the child locks on. There was a later drive where she rode in the back with the locks down, and I drove with one hand on the wheel and the other arm holding her back while she lunged forward trying to take it from me, screaming at the top of her lungs to let her die.

Sometime after that stay I was copied on an email between the attending doctor and my mom’s outpatient psychiatrist. They called each other healers.

I have thought about that word for years. I do not believe either of them meant her any harm, and that is the part that is hardest to explain to people who would like this to be a story about villains. They seemed like good-natured people who believed they were helping. They had no idea what they were doing to the woman in their care, and nothing in the way they worked was ever going to tell them.

I Spent Years Being Told I Was Wrong

When I raised the issue of akathisia, some of her doctors knew the word. They told me that was not what this was, that what we were watching was late onset psychiatric illness, which had conveniently arrived right after she was given a cocktail of their drugs. Most of the rest did not seem to grasp how severe it can be, or how much of what they were seeing it could account for.

Meanwhile my mother was called non-compliant for being unable to sit still and unwilling to swallow more of the insidious pills. She was not refusing care. She was reacting to it, and telling us so, over and over, because it never stopped long enough for her to finish describing it.

I tracked and recorded everything I could. Her symptoms, every medication she was given, every doctor visit, every change and what followed it. I learned an entire specialty at night, in fragments, reading about the brain and how it works, brain disorders, medication names, mechanisms of action, side effects. I researched treatments and then arranged them for her, because nobody else was going to.

If there is a treatment out there, my mother has tried it by now. That is the part I want people to understand about her. Through all of it, through suffering I still do not have adequate words for, she stayed willing. Every time I came to her with something new I had found, she said yes. She has been saying yes for ten years.

At a facility, the attending nurse practitioner said out loud something that explains the whole decade. When I asked about tapering plans for the laundry list of medications my mom was on, he asked me how it would look if he were taking medications away instead of adding them, with my mom behaving like this. He was describing the trap from inside it. The medications were causing the behavior. The behavior was the reason nobody would stop the medications.

The Year Before Hospice

My mom could not last more than a few months at any facility. Her behavior became too much for the places that exist to care for people like her, and we would be told to find somewhere else, and then somewhere else after that. My siblings both tried caring for her at home. My cousin came from overseas to help, and stayed until she was too burnt out to stay.

Last year my mom started smashing her own head against the wall, over and over, until her face was black. Then she stopped eating.

The director of nursing told me to call hospice. So I did, and I sat with the fact that I was arranging my mother’s death, and it ate me alive.

Hospice Is Where It Turned

On hospice, a psychiatrist finally said yes.

Nobody proposed deprescribing to me. I asked for it, the way I had been asking for years. What was different was that this psychiatrist did not dismiss it. She listened to what I had watched happen, she took seriously that the symptoms were real and caused by the drugs, and she let us begin taking things away. I am grateful to her to this day.

Here is the part I did not know, and I want to say it clearly because I think a lot of families do not know it either. Once someone is on hospice, taking medications away becomes the normal thing to do rather than the dangerous thing. The goal stops being to fix the person and becomes keeping them comfortable, and under that goal deprescribing is no longer a liability, it is simply good care. Doctors who would not consider it for years were suddenly willing, and nothing about my mother had changed except the label on her care.

I did not learn that from anyone. I learned it because my mother ended up there. I want to be careful here, because this is the part people take badly, and because we learned it the hard way before we learned it the right way.

At home, earlier on, my mother stopped taking her medication on her own. She was not being difficult and she was not refusing care. She was suffering so badly from the side effects that she stopped. It went badly. You cannot come off these drugs abruptly, and what happens when you do is frightening, and it gets read as the illness coming back rather than as withdrawal.

Nothing warned us. Those orange pill bottles come with a label about drowsiness and about not operating heavy machinery, and not one word about what happens if you stop. A person in that much distress is holding the bottle in their hand, and the bottle tells them nothing about the one thing most likely to hurt them next.

So I am not telling anyone to stop their medication. Coming off these drugs can be as dangerous as being on them, and ours was a long slow taper guided by the one doctor who finally listened. What I am saying is narrower than that. Adverse drug reactions can look exactly like psychiatric illness, and almost nobody is looking for them.

My mother had to be dying before anyone would consider that her treatment was hurting her.

Where She Is Now

It has been over ten years. She has dementia now, and I believe the years of medication are how she got there.

She is still debilitated, still severely anxious, still restless in a way I cannot fix. But she is not hurting herself anymore, and this week she takes the last dose of the final antipsychotic we have been tapering her off of. A decade to get her off the medications that were making her ill.

I want to say this plainly: I love my mom. She is the kindest and most supportive person I have ever known, and she is still that person underneath all of it. In the middle of her own suffering, screaming down the phone that she wants to die, she will stop and ask me whether I have eaten.

She still calls me more than thirty times on the bad days, so I built something to help us both, and other families living inside this same illness. She hears my voice and she settles for a few minutes, until her mind lets go of it and she dials again. What it means is that she is not met with a voicemail anymore, while she waits for me to get to her.

If Someone You Love Got Worse

If someone you love got worse after starting a psychiatric medication, and the answer was always more medication, you are allowed to ask whether the treatment is the problem. You do not need a medical degree to notice a change in someone you have known your whole life. You know them better than anyone else in that room.

So advocate for them, and keep advocating, because no one else is going to. Not every doctor can think outside the box. Some of them are trained to stay inside it, and that training is not malice, it is just the shape of what they were taught. It does mean that the person willing to ask the uncomfortable question is often going to have to be you.

Keep asking until you find the one who is willing to actually look. That person does exist. In our case she was the difference between my mother dying and my mother still being here.

My mom is still here, and I will keep fighting for her.