This Is to Mother You: On Caring for a Toxic Parent in Her Greatest Time of Need

When her challenging, cancer-ridden mother suffers a psychotic break, Jane Demuth searches for the wherewithal to help the person who once demanded the most of her.

Jane Demuth | Longreads | May 2016 | 11 minutes (2,632 words)

I don’t panic on the afternoon in August 2012 that my sister calls and tells me that our mother has gone insane and her boyfriend has rushed her to the ER. For the full four-week duration of her hospital stay, I don’t feel much of anything for her. Instead, driving to the hospital that first afternoon, I tell myself to keep my ears open in case she slips and says something important and true.

Three months before, she was diagnosed; two months before, she began treatment. Breast cancer, ductal carcinoma in situ, stage two, one sentinel lymph node affected, ER/PR/HER2 negative, BRCA gene double negative. I advised her on what to tell her doctor about her family history so Medicare would pay for the genetic test. She’s prescribed a lumpectomy followed by six months of chemo followed by radiation.

She tells me these things. She shares these details with me, the same way she did twelve years ago when she had an abnormal Pap result, compelling me to consider a part of her body I’m even more reluctant to think about than her breasts. She sends me her path lab reports, as though I were the parent and she was sending me her report cards to hang on the refrigerator. I don’t know how to ask her to stop. I understand all of these details. I analyze cancer data for a living in collaboration with some of the foremost epidemiologists in the world. I’ve been at my job for 13 years. I’ve long since finished my work on endometrial and ovarian cancer, and I’m now branching out from the cervical cancer projects that were my sole focus for almost a decade; breast cancer has become my new specialty. My mother has had a knack for developing personal connections with the cancers that I study.

And for reasons that have never been clear to me, my company has always assigned me to the lady cancers. The irony in this has been coming in waves which are about to break on my shores—my birth certificate describes me as male, and up to this point I have grudgingly embodied that identity as well as I could. Less than a year after my mother’s hospitalization, though, in June of 2013, I’ll have begun my physical transition to female, something I’ve secretly wanted to do since early childhood, long before I could articulate it.

My mother has had a knack for developing personal connections with the cancers that I study.

Even after I had the language skills to have said it out loud, though, I didn’t. My identity as female has always been the most central, immutable part of me; ground zero, my sine qua non – without this, nothing. But it is also the one thing I have always kept hidden, even from myself to whatever extent possible and at whatever cost necessary. From my earliest memories as a toddler, through my secretive childhood and teenage forays into my mother’s and sister’s closets, I learned to be as quiet and invisible as a ghost in my family’s enormous and isolated old farm house full of creaky floor boards and unspoken rules. Sharing any part of myself, especially this part, was unthinkable. Gender roles were very clearly delineated when I was growing up – men were angry and violent; women were victims. There were no exceptions, and there was no switching sides. I internalized this message almost as deeply as my core sense of myself as female, and it’s taken me decades to begin writing myself a new story; my own story. Now, I’ve finally begun sharing the public facing portion of this story with others—the part that says I’m a woman and have been all along; my name is Jane; my pronouns are she, her, and hers; and perhaps most importantly, ownership of this story is mine and mine alone. A few months prior to our mother’s hospitalization, I’d already given my siblings some intimation that my transition is coming. To my mother, though, I’ve said nothing.

Today in the ER is the first time I’m seeing her since she began chemo. Apparently, she hasn’t taken well to it. Her head is bald and covered with sores. The frail body in front of me belongs to the person who’s been telling me she’s dying since I was ten, shortly after her first major spinal surgery; the person who expected me to take care of her when I was still too young to take care of myself. I may not be panicking now, but back then, panic was all I knew. As a child, I had no choice but to take her fears at face value. Years later, though, when she still hadn’t died, I began to understand her behavior as a desperate plea for comfort; any port in a storm for a lonely, terrified woman with prematurely deteriorating health in a deeply troubled marriage she didn’t know how to leave. But because she sought that comfort from me, her child, my sense of responsibility for her became marbled with thick veins of resentment.

My birth certificate describes me as male. Less than a year after my mother’s hospitalization, though, I’ll have begun my physical transition to female.

In the ER, she ignores everyone else when I walk into the room. Her first words when she sees me are, “Boy, do I have a story for you,” and she’s right. She does. My brother and sister are already there, and she tells us in great detail about the hospital’s convoluted conspiracy to kill her, how she cannot trust those who care for her. This is not the profound truth I told myself to listen for. It’s simply a variation on what she’s been telling me for my entire life.

As a child, I remember her coming to me crying late at night after the hyperbolic melodrama of her violent, drunken fights with my father, telling me to get some money together because we were leaving. I was twelve. As the oldest “boy,” I got the message early and often that it was my job to take care of her. I remember the comfort she sought from me during her first year-long separation from my father. That period coincided with the onset of my adolescence—my first pass through puberty, the one that would change me against my will from a boy to a man. Any possibility of coming clean and telling her I was transgender (in whatever terms I would have used then) was obliterated by her own misery and need—there was no chance of going to her for help when she was coming to me for it.

I also remember the back massages and foot rubs she used to ask me for, and that I gave her. And I remember the moment when I abruptly stopped, when I recognized the sounds of pleasure she was making as something so wildly inappropriate for me to be producing in my mother that I backed away in revulsion. Twenty five years later I can still taste that revulsion. I remember my anger. I remember saying nothing. I didn’t know how to ask her to stop.

Here, now, in the ER, I watch her fumbling away from reality. I’ve known her at different times in her life to be rational, childish, nurturing, needy, calm, anxious, depressed, angry—but I’ve never before seen her delusional. Am I supposed to panic? How would others react at the hospital bedside of their mother, listening to her talk about the trees in the swamp behind her house giving her secret messages? Am I a monster for feeling so little? What do other people feel when a family member is in hospital? What do others go through when someone they’re supposed to love has lost their mind?

I’ve known her at different times in her life to be rational, childish, nurturing, needy, calm, anxious, depressed, angry—but I’ve never before seen her delusional.

I do know the answers to these questions, at least partly. But I did not learn them from her. I remember different hospitals and different emergencies, one of them so recent that it still replays in vivid technicolor horror whenever I close my eyes and try to sleep. Six years earlier nearly to the day, I paid my last visit to a dear friend who was dying of lymphoma. His wife told me months later that when she’d told him a group of us had come to see him, he’d said that he only wanted to see me. I remember standing outside the door of his hospital room after that last visit, leaning against the wall, sobbing quietly and uncontrollably. And less than two weeks before visiting my mother in the ER, I’d driven the woman I’d recently begun dating to a different emergency room because she drank herself into a blackout and slashed her wrist with a kitchen knife while I was watching her young kids. She spent the night in the ER and the next four days in an in-patient psychiatric unit. I went to see her every day. I bought us notepads so we could write to each other, because she wasn’t allowed to have her phone, so we couldn’t text. When I visited, we sat side by side on her bed and held each other without saying anything. It would be weeks before I could shut my eyes without seeing knives and blood.

These are the people I have loved and do love fiercely, with every bit of me. I remember seeing them covered by the starched sheets and cotton blankets of hospital beds, and I remember the icy cold fear I could not beat down and the boiling hot tears I could not keep in. Kingston General. Westchester Medical in Valhalla. (Sweet Jesus, why would anyone put a hospital in a place named after the Norse hall of slain warriors? Do doctors have any subtlety or humility at all?) But here, for my mother, I feel none of that.

She is connected to a profusion of wires, tubes, and machines. Heart rate monitor. O2 saturation. Respiration rate. The machine that goes “Ping!” While she rambles on and on about her boyfriend, a man so gentle that he won’t even watch violent movies, trying to poison her, and how she can only trust people with blue eyes, her heart rate is over 100, her breathing sporadic and well into the 30 breaths per minute range. Only her O2 saturation is normal—94-95.

Of course I understand all of this. Of course I’m detached. Of course this is my reaction, and this is what I’m paying attention to. Before she retired, my mother was a nurse. She always wanted me to be a doctor. Instead, I became a medical researcher and yoga teacher.

I also notice the shift in her level of anxiety when there is discord in the room. My brother and sister do not know what to do. They are out of their element here. They are afraid for her, and they become short with each other. She picks up on this, and her anxiety increases. She doesn’t understand why she’s here or what’s going on, but she knows others are scared, so she is scared too. I’ve observed this sort of behavior before in young children and animals. It’s horrible to watch.

Despite my resentments over the secrets I had to keep and the care I was obligated to give her growing up—despite anything else at all—she is still my mother. I know that she has always tried to support me as well as she could. And I know without a shadow of doubt that when I do tell her that I am trans, she will be my biggest advocate. I cannot stand by as she suffers.

And this is where I come in and do the last thing in the world that I want to do: I help her.

The idea of ever touching her is repellent, but I take her hand. I never, ever want to look in her eyes, but I do, and I tell her to listen to me, to focus on the sound of my voice.

Bring your awareness to your inhale. Make it as long and steady as you can; and when it reaches its natural crest, simply let it go, allowing the exhale to exit just as smoothly. When thoughts arise, let them go, no matter how important they seem. Simply focus on the in and out of your breath.

I walk my mother through this simple practice for several minutes. I keep one eye on the monitors and watch as what I’m doing works. Breathing normalizes. Heart rate decreases. O2 saturation remains steady. She is calming down. When she starts chasing after insane thoughts again and the monitors jump, I bring her back to her breath and watch the numbers resettle.

I know without a shadow of doubt that when I do tell her that I am trans, she will be my biggest advocate. I cannot stand by as she suffers.

Jumping in and becoming part of her care team in this capacity (and in other significant but less direct capacities throughout the next month) comes as naturally for me as falling off a bike. Setting personal boundaries, knowing how to say no, is a trickier business. Every time I’ve tried in the past I’ve been either a complete push-over or a heartless bitch. I’ve lost people I love from my life this way, and the hurt and the shame of that never stop. As uncomfortable, as gross as I feel helping her, now is not the time to try to walk that tightrope again. My drama doesn’t belong here.

As she calms, she asks everyone but me to leave the room. Her mind is still not back to where it was six months before—nowhere near, nor will it be for a long time—but the storms have temporarily cleared enough that she wants to tell me something privately. Her boyfriend and my siblings leave. I am left alone with her and the beeping of machines.

“You just saved my life,” she tells me.

I didn’t, but I know it seems to her as if I have. All I did was stop her panic attack. My therapist taught me this technique more than twenty years ago when I was sixteen, and had begun having panic attacks of my own, falling apart under the pressure of trying not to be me. I’m simply passing the skill on to her now.

I don’t know how to reply to her, so I don’t say anything.

Jumping in and becoming part of her care team in this capacity (and in other significant but less direct capacities throughout the next month) comes as naturally for me as falling off a bike. Setting personal boundaries, knowing how to say no, is a trickier business.

“Your eyes are blue,” she continues, smiling at me. “That’s how I know I can trust you.”

I try not to look away.

The next day, after she’s been admitted, I will return to visit her a few floors up. Tangled up within further paranoid delusions, she will tell me she can see that I’m about to undergo a massive change. Months later, when she is home and returning to her old self, she will tell me that she remembers her nurse accidentally giving her a double dose of chemo at her last treatment visit prior to this episode. I will wonder if she is remembering correctly, why she didn’t speak up when it happened, and if that was what caused this. I will research the question on my own and find nothing but anecdotal reports and inconclusive evidence for chemo-induced psychosis. And years later, when I’ve begun actively withdrawing from people who knew me before and remain unwilling or unable to refer to me with my correct pronouns and name, I will realize that she is one of the few who never batted an eye when I did finally tell her of my transition, never stumbled over my name, and never once used the wrong pronouns.

But right then, at her hospital bedside, alone with her, the moment I’d been waiting for arrives, and she speaks the words I told myself to listen for that afternoon; confirmation of what I’ve suspected all along but never wanted to be true.

“You were always my favorite.”

* * *

Editor: Sari Botton