My life changed on 17 May 2016.
My mother’s PCP called me, wondering why she skipped her appointment.
I called my mother, who vowed she’d merely forgotten. I knew better. The Madness was worsening.
Almost ten years ago to the day I write this, my mother moved in with me and my husband. We’d bought a house specifically to turn one floor into a “mom suite”, with her own bed, bath, control of the laundry room (we couldn’t afford to move all that plumbing) and a kitchenette in her sitting room. She paid very little toward household costs, used our kitchen when or as wanted, and all went well. Mom and I had always gotten along, so this was no surprise.
In May 2013, I was diagnosed with PTSD, joining the ranks of the Psychologically Wrong, the Mentally Not-Right, the Weak, and so forth. For my mother, this was a hard time. She despises psychiatry as barbaric, and disdained me for needing therapy for what turned out to be quite a lot more wrong than even I knew.
Thus, I at first attributed her anger and moodiness to the situation.
By 2015, I could barely stand to have this woman in my home. Her complaints were unending, her criticisms unceasing, and her behavior increasingly unusual. This woman, who had been tidy if not a neat freak, and always interested in education and taking walks, was suddenly an obsessive eater, hoarder, and filth-gatherer. Nothing we asked or did helped. She refused all aid unless it was cash or food, which was atypical in itself, and when we contacted her PCP with our concerns, my mother shut us out completely. She would literally blockade her section of the house to prevent us from entering unless she was there to harangue us into retreating before she really did have the stroke or heart attack she said she would have.
As a last resort, we turned to Adult Services. They diagnosed a “power struggle”, what with me being diagnosed as all “messed up”, and advised that my mother move.
Late in 2015, my mother moved. Six months later, her boxes remained packed, her apartment was thrice as filthy as her “mom suite”, and she was in danger of eviction. Only a week after that call from her PCP, I received one from her landlord. We had to clean up that place, or Mom was homeless.
We had agreements in place, regarding her checking in daily, and we would go to her place weekly. We’d been trying to keep back the chaos and filth on those weekly visits for months, to no avail. Nor were we permitted into her bedroom or bathroom on such visits, leading to some horrifying discoveries.
On 25 May 2016, having told my mother to expect us, we arrived to clean up in the morning. She was not there, nor was her car, and her cell phone was turned off.
We cleaned eight contractor bags of actual shit from her apartment. Crumbs, rotting food, cat vomit, cat litter, cat feces, human feces, spilled things that were not identifiable, a dresser drawer full of cigarette cartons (empty) although my mother stopped smoking in 2006 and had been smoke-free while living with me. This did not include pizza boxes, napkins, used adult incontinence pads (on the floor), and other signs of severe deterioration I had been telling people about since spring 2015. It was worse, but no different than what had happened at our home, including damage to plumbing and fixtures.
Around 4 PM (1600), we reported my mother missing to the police, as an endangered elderly person. I had not heard from her in 24 hours exactly. Within fifteen minutes, we received a phone call from over 150 miles away.
Mom was in an emergency room, after a fender-bender, with no idea why she was nearly 200 miles from home, nor where she’d been or how or why. When asked, I could not provide answers. All I had were my own questions about the previous two years of decline.
It was past 9 PM (2100) when I received the ER attending’s report on my mother’s condition.
My mother, aged over 70, had a tumor in her brain, roughly the size of a tennis ball. (For once, that is not an exaggeration. The tumor’s size was roughly 7 cm diameter, or 2.7 inches, along one axis, and about 5 1/2 cm, or 2.2 inches, along the other.)
The tumor rested behind her forehead. The classic “bulging” eyes were probably obscured by the weight gain from the compulsive eating. Mood swings, et cetera, were all explicable as resulting from the tumor and its place, size, and accompanying edema (swelling) in her brain.
The ER released her to us, with no referral for further testing or a consult with a specialist.
We had to find that ourselves.
The following days were chaotic. I remember them now in a blur, and suspect that will worsen with passing time. Calling everyone and anyone who could or might or should help my mother, seeing her admitted to a top neurosurgery unit, having her transferred without our consent to a miserable “rehab facility” that left her in filth and unfed, taking her in for a surgery predicted to be no more than 10 hours, waiting as the surgery dragged on for almost 15 hours, all the testing and mishaps in between all of those aforementioned moments…
Only today, did I finally have time to feel the words “Mom has a brain tumor”.
It’s out now, or over 95 percent of it is, but we have no prognosis. No idea how much will happen or not happen, can or can’t be recovered. Nor can we, for weeks or months, if ever. At her age, my mother is already at risk for memory loss, dementia, and similar. A tennis-ball-sized tumor in her frontal lobe, and attendant surgery, hardly enhances her chances for the independent aging-at-home she wanted.
I will gloss over the doctor who tried to push me to overturn my mother’s living will (advance directive), the difficulty in finding someone to help us with power of attorney before the surgery, the utter uselessness of family, the absolute value of friends, and the unspeakable incompetence of oh-so-many, including those who wondered why I didn’t think to get her to a doctor.
Short of violating the law by forcing her at weapon-point, I could not. Until the tumor’s discovery, in routine CT after the fender-bender, it was anything but “actionable”. Mom could do as she wished. And after two years of actively trying to convince her at least once or twice a week to see a neurologist and/or psychiatrist for evaluation, I wanted to scream at these smug armchair analysts. Where were they, and their magic knowledge, when I asked for help convincing my mother in 2014 to see someone?
As of this writing, my mother is already out of ICU, extubated, eating solids, and allowed to drink coffee. We await final pathology, and thus prognosis. We see the full extent of wreckage left by the tumor, the previous lack of help, and our faith in the system. We see that my mother is never to be Mom again. I bore a label of Madness, and so Medicine ignored my pleas to help my mother.
Given my participation in the Proxy Project, dedicated to stopping the infliction of harm for one’s own sick satisfaction, it’s bitterly ironic that I was dismissed as attention-seeking and “mental”. Of course I sought attention…For Mom. Who is now lost to me, whatever the outcome of the surgery and tumor removal and further treatment. What made her Mom is gone.
Such is the Madness. Such is Medicine. Such is Me.
All images original artwork of author.