In 29 days
my father will be 90 years old.
and, in 40 days, my mother will be 90 years old, too.
last night, as usual my father’s overnight diaper changes were fraught with his fury. during one change, after almost 45-minutes, i considered sending a message to the overnight on-call nurse requesting the start of a catheter. some time ago, i was told this was available. initially, i refused because the thought of managing the lines for an insertion was absolutely unappealing. also, i didn’t want to learn insertion. any time my father was catheterized in the hospital, he fought the process and then found ways to rip out the line, even when his hands were in safety mitts or he was in full-body restraints. i imagined, if he did so at home, the responsibility of recovering the catheter would be placed squarely on my shoulders, since everything was. in the middle of the night, 45-minutes into a diaper change for someone who’s fighting with force can change some minds, or at least make one consider the alternative, even in the face of more jobs. i’m not a fan of creating more instances in which i have to touch my father’s penis, but the thought of that request for a catheter did circulate more than once.
i didn’t call.
what i did do was pretend to record him, because i learned early that being watched changes behavior. first mine, now his.
when i was a child, my parents let me sleep in the guest room. i didn’t have a bedroom of my own. well, that’s not entirely true. i had my own bedroom until my sibling arrived. then, my parents gave away my bedroom to the baby, and they put me in the guest room. once in there, i was told that nothing belonged to me, that the room belonged to my mother, and i was allowed to use it until i was 18, when it was expected that i should go out on my own. i was four. four-years-old. i wasn’t even old enough for kindergarten. but, i knew about being a “squatter” (what my mother called me once i was shifted to the guest room) and having temporary status in the household, and i knew that i wasn’t important enough, or wanted enough, to be given a bedroom of my own.
to ensure that my mother could monitor me at all times, she had my father take the lock off the guest room door. and, my mother placed a full-length mirror opposite the entry, cocked at an angle, facing the center of the room, so she could watch me from the hallway outside without being seen. i was also not allowed to close the door, because “in my house there are no closed doors, ya hear??” so, i sat either on the floor next to the bed to play (which was met with criticism, because my mother couldn’t see me in the mirror, as the bed blocked her view), or i sat on the bed to play. i wasn’t allowed the use of any other portion of the room, and wasn’t supposed to touch anything in the room except the bed. i grew up under surveillance, and last night i found myself reaching for the same tool, not because it’s right, but because it works.
in public, to control me, my father used to point at random people and say, “see them? over there? they were just staring at you because you’re (in the way; so ugly; wearing mismatched clothing; didn’t wear the outfit your mother told you to wear; didn’t comb your hair; have a weird haircut; are acting up, etc.). the effect was that i became hyperaware of myself, my impact on environments, and other people’s disapproval of me, real or perceived. my parents’ programming made me anxious and barely able to function in public spaces.
as my father’s diaper change rounded an hour, a new, different idea came to me.
i turned on my phone’s flashlight and i set the phone upright on my father’s over-bed tray table.
“see that light? that’s the flash for video, the recording light. i’m now recording your behavior. fight me all you want, because once this diaper change is over… i’m sending the video to your nurse. and, i’m going to use the video as proof that you need a higher dose sedative, because you won’t behave. and, i’ll do this… so i don’t have to struggle with you anymore. you hear me?” i threatened.
my father stared at me, then stared into the light.
“i’ve asked nicely. i’ve cajoled… i’ve begged… and i’ve been a supplicant. i’ve practically performed dog show tricks, jumping through hoops to get you to cooperate. now? no more nice daughter. you don’t like me? you don’t want your diaper changed? you want to punish me and fight? i’ll record you on video and then your nurse can share your behavior with the medical director,” i purred. “how do you like them apples, daddio?”
my father continued to stare into the light.
you know what happened? he was the calmest, most cooperative kitten i’ve seen in as long as i’ve changed his diaper. even before being bed-ridden, while he was still mobile and i was still changing him in the bathroom, he made diaper changes a miserable chore. with the “camera” rolling, recording his behavior, he was a prince among men. he was a gentleman. he was so cooperative, i was floored by disbelief. sadly, his new behavior didn’t feel like comfort. it felt like proof: authority mattered to him more than i did.
after the diaper change, i was flooded with thoughts: he was able to contain his aggression, and he can control himself when he wants. then again, maybe the light startled him, confused him, distracted him. maybe fear did what love couldn’t. i went around and around with these. the thoughts churned, especally the possibility that he’s been fighting me, just me, so viciously… on purpose. i wrestled with the ideas that he’s been hurting me… on purpose, that he’s been attacking me because he can, trying intentionally to punish me for fun, and that maybe some part of him can still choose when to escalate. it was galling to consider that my father responded to perceived authority in a way that he never responded to me.
i cleaned up the area, and retrieved my phone, turned off the flashlight, and sat with the realization that my father’s behavior might truly be willful and intentional, and not solely that of a declining dementia patient. i had trouble with the concept that my father was targeting me, specifically me.
i didn’t know how to process the thoughts. i wasn’t sure i could trust them or myself.
i started to suspect that my father shouldn’t be on hospice. (i don’t know this. i’m not claiming conspiracy. i’m describing the sick logic of incentives from where i’m standing, and what it feels like to do the math.) i started to suspect that he was placed on hospice in a system where the incentives make it easier to shift burden onto families than to fund repeated hospital and rehab stays. i started to suspect that my father has years more to live, and that this schtick with hospice is more about saving money, kicking the care work back on the family, than about providing an end-of-life service to a dying man. with 268 days behind us since his admission to the program, having been told that he was circling the drain last may, and that hospice was for the dying, i started to have a hard time rectifying his ongoing existence with the realization that my father can turn on and turn off his bad behavior at will. then again, maybe all of this is normal? i just couldn’t reconcile end-of-life with a man who summoned self-control the moment he thought someone official would see his behavior.
in a weird, twisted way, in light of the use of my cell flashlight as a fake video camera, i also wondered (hating myself for wondering), if my father’s abuse of me while caregiving was tangled up in an old pattern between my parents: that any time he spent time with me or accepted anything good from me, he had to then punish me so my mother didn’t suspect that his liked or loved me more than her. i can hear how insane that sounds on paper. i’m not insisting it’s true. i’m saying this is what my brain does when an old family pattern suddenly fits a new moment, when an old pattern keeps reappearing in new forms. in this case, whether or not it’s true, it feels true that i’m allowed to serve, but not allowed to matter.
if i’ve not said before that caregiving is a rollercoaster… it is. doing eldercare for one’s abusive and neglectful parents is like being on a rollercoaster in a funhouse.
i plan to use the “flashlight trick” again tonight. if my father behaves, then maybe diaper changes through the remainder of our time in one another’s lives will be gentler and smoother than it’s been in years. wouldn’t that be something.
i’m so very tired.