(cont.)
CW: This content contains descriptions of child abuse and violence (circa the 1970s and 1980s), adoption, coarse language, suicidal ideation, and an emotional breakdown (circa the present).
Interlude: The Present.
Groomed as a caregiver, understanding from toddlerhood that it was my job to know my mother’s needs and wants, and my father’s moods, and to address all of those appropriately, I did anticipate this present stage of my life. I did not, however, anticipate this present “lot.” I also did not anticipate taking care of two parents in severely declined health at the same time, by myself. And, I did not expect both of my parents to survive together, indefinitely. In both my biological family and my adoptive family, all of my grandfathers died decades before my grandmothers. All of my cousins, again biological and adoptive, have buried one parent, with one remaining long after. Same with friends. All have buried one parent, with one remaining long after. I am the only person I know who has two parents with devastating health issues, clinging to life… together, and in need of help for every activity of daily living. By “in need of help,” I mean, someone to do everything for them. The only thing my parents do independently is watch TV. Often, they can’t even use their television remote without help.
As an adoptee, I was made to understand that my parents got me with a purpose in mind: that I owed them for the life they provided. My parents weren’t the only people who seemed to believe this—that I owed them—as it was absolutely not uncommon to hear vague familiars and perfect strangers say awful things like, “Oh, you’re so lucky that good, religious people saved you.” Comments like this seemingly assumed—without any information—that my biological mother was an evil trollop with wicked morals, and that I could easily go the same way, but for my adoptive parents taking me in and making me theirs. Equally terrible, and perhaps more so, were those close family and family friends who invalidated my feelings of abandonment and aloneness, of difference and deficiency, by telling me instead that I should be grateful to “have such a good life”, and who warned me “who knows what could have happened” had my biological mother kept me, or had I gone to different people. The default was always worse than what I knew where I was. The subtle, and not so subtle messages I heard hinted at awful fates, leaving my wild imagination to fill in blanks. Back then, women who “got pregnant” “out of wedlock” were villains, and those who gave away their babies were alternately devils or angels, conversation dependent. Devils because, “Who would do such a thing?”, only sex-hungry, irresponsible, sinful whores would “put out” before marriage. Only loose women would allow themselves to get “knocked up” without any regard for their family’s reputation, or their own reputation. But, they were Angels because “They were selfless”, full of caring and far-sighted forethought, lighting their child’s potential and brightening the adoptive family’s future. Those Angels offered hope through charity, and showed love through sacrifice. My entire childhood was spent steeped in bizarre mixed-messaging about my origin and my “luck,” and most of my life’s energy was spent proving my worth by being “good.” The circumstance of my conception, the virtue of my birth, the darkness of my appearance, it was always understood that I was an inferior quality person but for the “luck” which landed me a family: My particular family. It was also understood that I would and should repay the debt of my “fortune” by being my parents’ caregiver when they were old and in need, despite me never agreeing to do this, and despite me never wanting to do this. Also, despite no one ever asking me if I could do this.
Fridays are for grocery shopping. Typically, my wife and I take a thirty-minute drive to a neighboring county. We make two stops averaging three hours between two grocery stores per week. Then, we take a thirty-minute drive home, where we unload groceries, dividing ours from my parents. After which, I carry my parents’ bags to my parents’ house in time to start my “dinner shift” with them by 4:30-p.m.
These marathon “Grocery Fridays” (one of three different “marathons” per week) start around 10-a.m. and end between midnight to 2-a.m., parental bedtimes dependent. “Grocery Fridays” are full 14- to 16-hour days for me, with constant movement, missed meals, and N95 mask-related dehydration. Since my father’s motor and non-motor symptoms of Parkinson’s worsened dramatically after his hospital-acquired Covid infection, and because his now-worsened state requires a more intense level of care on my part, one of the many reasons I yet mask is to prevent him from catching it a second time and further declining, creating even more work for me.
Preparing to make the mile drive between my home and my parents’ house, in my head I often hear the voice of my mother from my childhood. She spits, “Is this what I gave up my life for? To be stuck at home taking care of you?” I check my car’s clock and sigh heavily over the weight of responsibility I carry, knowing my burden will only grow as my parents decline and both become more dependent over time. This, unlike my mother who saw her children become more independent over time. The difference between my burden and my mother’s being that I am expected to serve my parents with a “happy heart.” My mother rarely seemed happy to serve her family, and instead reminded us of the misery she felt in being “cooped up” with us, letting us know that she thought of us as “ingrates” and “pigs” who made her life “hell.” It doesn’t elude me that if my parents wanted a “happy heart,” maybe they should have been more careful with me, and, maybe they should have modeled “happiness.”
Turning at the light that ushers me into my parent’s neighborhood, I often hear my mother’s voice again, “I quit my job for you. I gave up my career. I was the head of the hospital’s lab. I taught at the hospital’s school. I was somebody. I gave all that up for you. For what?” While today, my mother insists that she shared those sentiments as proof of how committed she was to motherhood, as a child I heard contemptuous lament. I heard my mother’s grief over the loss of her career, sorrow in being “nobody important”, and becoming “invisible” because of me. I heard regret, not dedication. I heard misery, not pride. I heard hate, not love. It wasn’t my fault that to adopt in the 1960s and 1970s, agencies required that the woman be a “stay-at-home mom.” It wasn’t my rule that adoptive mothers weren’t allowed to work. It wasn’t my preference that my mother gave up her identity to become something she didn’t relate to naturally. But, my mother made her load mine, and my little girl shoulders were too small to carry such heaviness. Frankly, if anyone could understand my situation now, not being able to work while I caregive full-time, being nobody, being insignificant, my mother should. But, her compassion and empathy were always reserved for her self, and are not now extended to me. Meanwhile, I absolutely do feel for her, understanding now that being coerced into a role, having no perceivable options, and watching life pass, can leave a person feeling tragedy in so many ways.
Parking at the curb in front of my parents’ house, I pop open my trunk. Surveying the groceries I have to gather and carry, I first grab the bottled water. Slinging the pack over my shoulder, listening to it slosh and squeak inside the plastic wrap, I am reminded of my mother’s Holy Water jars stationed in every room of the house, something she copied from her own mother. After abusing me in any of the many ways she perfected, always ending the violence by breathlessly invalidating my trauma, saying, “That hurt me more than it hurt you,” my mother grabbed one of her jars marked “Holy Water” and sipped like savoring something special. The act was reminiscent of old movies wherein couples smoked a cigarette in bed after coitus. My mother claimed to be cleansing herself from the “sin” of anger that I caused. She did not offer me her “cure” to keep holy for Heaven, and as my body rang with pain I faced sad disappointment over my presumably confirmed place in Hell.
Opening the door to my parents house, I enter the living room to see my mother sitting in her recliner and my father slumped in his wheelchair beside her. My mother’s once perfectly coiffed “superior” hair is uncombed and misshapen, thin and grey. It is no longer a mane and doesn’t anymore speak to supremacy. Her blue eyes are now dull, not the icy eyes that chilled me as a child, but weak and weary. “I’m bringing in groceries, so you two have to either stay where you are, or get to where you’re going. I don’t want to trip over you, and I don’t want you tripping over the bags. Alright? GO!” I turn to leave them, walking back out to my car for bags. I look up and down the street, partly to scan for the stray cats that came to visit, for the fox couple that sometimes runs the street, or the great horned owl that roosts in the tallest nearby trees until sunset when it perks up to hunt, and partly to look for anyone who might be out for a walk so I might avoid them. Sensitized by my father’s goading that everyone who encountered me was always watching me and thinking critically of me, I am also careful to avoid my parents newest neighbor, not yet in residence eight months to my parents’ sixty-two years, an elderly retired white man who sports a “red hat”, and who always seems to step outside onto his front stoop when I arrive at my parents’ house. I’m mindful of him “monitoring me”, his creepily menacing behavior feeds into the memory of my father’s goading, because this elderly retired white man has already “reported” me, demanding that police arrest me for committing “federal offenses” because I “touch” my parents’ mail, and because I throw away their junk mail for them, at their direction, but unbeknownst to him. As if caregiving wasn’t stressful enough, to have my parents’ bored and mentally unhinged neighbor interfere with my already exhausting work feels beyond the pale.
Carrying the next load of groceries to my parents’ door, I think about all the goodies I picked out for them, treats to make their meals more appealing. Made to know my parents’ likes and dislikes, I choose chocolate desserts for my father and cinnamon-flavored desserts for my mother. I carry in bananas for my father and pre-peeled oranges for my mother. I am careful with the Friday flowers that I bring to my mother, so her weeks might be accented with something pretty. Even as I’m pleased to deliver these little bits of kindness and thoughtfulness to my parents, I hear my mother’s voice telling me “You’ll get what I give you,” and my father backing her up with, “Beggars can’t be choosers,” if I dared ask for something extra or anything resembling a treat. I put down the bags inside their house and notice that both parents are restless.
Keen to observe their behavior and moods, I opt to disrupt my routine, and offer to change my dad’s Depends immediately. More parent voices speak to me. They’re saying “Can’t you see I’m busy?” and “Hold your horses,” and “If I feel like helping, I will, but not when you say. When I say.” Afterward, I steer both of my parents toward the kitchen for dinner, which I heat and set in front of them.
“Hey, while you’re eating, I’ll bring in the rest of the bags, alright? You two stay here. I’ll be back, alright?” Neither answer me, they instead ignore me, which causes me to remember them pretending I didn’t exist as a child. “Do you hear someone talking?”, my mother asked my father as I stood directly in front her, begging for help or permissions. “Nope. Don’t hear a thing,” my father always answered. “Hm,” my mother went on, “Must be the wind. Must be really windy outside today. The wind is HOWLING today.” This, as I begged, “Mom? You hear me. You do. I know you do! Mom? Dad? You hear me! PLEASE! PLEASE! PLEASE! I’m standing right here! I’m right here! Please see me! Can you see me?” My parents routinely ignored me, pretending I didn’t exist. Both continue to do so long into my servitude as their caregiver doing their eldercare. I kept my irritation at “being erased” to myself, noting that they are busy talking with one another, and knowing they did hear and see me clearly. I am well aware that psychological invalidation is one of the most lethal forms of emotional abuse. I remember how suicidal I was as a child, as a teen, as a young adult. Believing that if my parents couldn’t “see” me and didn’t even want to “hear” me, who else would? What point was there in existing if my biological mother saw fit to create an inferior form and then to “throw it away,” and if my adoptive parents didn’t even like or want me enough to “see” or “hear” me. It was also understood, if my parents couldn’t see or hear me, they also wouldn’t protect me. In relation to my parents, my sense of abandonment and aloneness was always ever sharp and steep. This made “boogie men”, not unlike their elderly retired white neighbor-man, more dangerous and more potentially destructive to me.
On the next run to my car for another load of bags, unbeknownst to me, my mother demanded my attention. Unfortunately for me, I didn’t hear the demands she made inside the house while I was outside at the curb. Instead of waiting for me to be near enough to hear her or tend her, my mother came to look for me, and my father defended my mother’s lack of impulse control and boundaries, making more demands on top of my mother’s. And, that… is what set me off.
“WHY DIDN’T YOU ANSWER HER THE FIRST TIME SHE ASKED?” my father hollered at me, using the best and biggest and boldest authoritarian voice that his little Parkinson’s-affected throat could muster.
And, this… is when I lost it.
On day 856, this is when I lost it.
All at once, in my mother’s actions and my father’s words I heard, “WHEN I SAY ‘JUMP’, YOU SAY ‘HOW HIGH’?” and “DO YOU KNOW WHO I AM?” and “YOU ARE NOTHING!” I heard, “You disgust me!” and “You’ll always be beneath me!” and “You’ll never be more than me!” I heard that I owed my parents eternal gratitude for “choosing me” and for their job of parenting me, both of which they willfully and intentionally took on, and neither for which I had a choice.
“HOW MANY FUCKING PEOPLE DO YOU WANT ME TO BE AT ONE TIME, HUH? WHAT THE FUCK IS WRONG WITH YOU TWO, THAT YOU CAN’T WAIT UNTIL I FINISH ONE FUCKING THING BEFORE DEMANDING ANOTHER? YOU FUCKING SELFISH PRICKS! YOU GREEDY FUCKING SELFISH SONS OF BITCHES! YOU FUCKING IMBECILES” I screamed some things about them being “assholes” for refusing to prepare for this time in their lives, “damn fools” for using me as their retirement plan, and “selfish pigs” for putting full responsibility of them both on me, alone. I screamed lists of everything I do for them daily, weekly, and monthly, peppered with swear words, demanding that they tell me if it sounds like I have any time for myself, to do anything for myself. I screamed a list of all the deeply disturbing medical traumas I’ve experienced because of them: 19 emergency room visits, 13 hospitalizations, 9 rehabilitation facility stays, a total of seven immediately terminal misdiagnoses, and more than a dozen walk-in clinic visits, during which I attempted to “get in front of” illnesses that could have resulted in more emergency room visits, hospitalizations, and rehab stays. I screamed lists of their medicines and doctors that I have to manage, all the tests that I’ve had to schedule and attend, every transport in which I’ve had to juggle all of my father’s mobility devices and his completely immobile body. I screamed about the times I stood up for them when people treated them poorly, the times I handled their legal messes and their financial messes and their general messes with no guidance. I screamed about the condition of their house, having to clean it so they could live comfortably, having to fix it so they could dependably use their shower and flush their toilet and run their faucets. I screamed about their furnace and air conditioner, both of which had to be replaced once I came on the scene full-time, because neither worked properly, and because they were “making do", living in unhealthy and unsafe conditions. I screamed until I couldn’t scream anymore.
Then, I stopped. And, I looked at my mother. And, I noticed the expression on my mother’s face. She was sneering at me with the same sick kind of satisfaction I saw throughout my entire childhood. Every tantrum I threw, I saw that same look. As a child, subject to her power and control, I came to wonder if my mother’s outward enjoyment of my traumas fueled her. Then and now, the peaceful, pleased look on her face was exquisite. I’ve always believed she drew power from my upsets. My father ignored me the same way he did when I was a child, subject to his disregard and neglect, reaching for his dessert, he punctuated how little I affected him.
I couldn’t believe I’d snapped over something so small, so trivial. So what if my mother came to find me? So what if she couldn’t wait to ask her question? So what? In my breakdown, I caught myself sounding like my mother, shocked that I was screaming at my parents the way they screamed at me when I was a child, castigating them for being ingrates the same way they castigated me for being an ingrate.
My blood pressure soared. My eyes blurred. My ears rang. My temples felt like they were being pierced, while my head felt like cotton. My body felt tingly. I imagined falling to the floor, dead from the stress of them. I figured my parents would likely move around me, expecting me to eventually get up and get back to the work of caring for them. If I fell and stayed dead, I figured both of them would assume I was just “too inferior” or “too weak” to exist properly. I stormed outside.
My memory worked overtime reviewing all the articles I’ve read about caregiving as a risk factor of mortality, and how different research articles cite 30%, 50%, and 70% of caregivers dying before the people for whom they give care. Words like “caregiver burnout” and “caregiver stress” and “caregiver syndrome” tumbled around in my head, along with “caregiver anger” and “caregiver resentment” and “caregiver PTSD.” I’m well aware that caregiving causes an increase in stress hormones that leave a body and mind in a “depressive exhaustive state” which contributes to the deterioration of mental and emotional and physical health. When I take “caregiver stress” quizzes, I check every descriptor. Emotional and physical exhaustion: check. Withdrawal from friends: check. Loss of interest in my own life, inability to enjoy things I once might have found pleasurable: check. Feeling hopeless and helpless: check. Changes in appetite and/or weight: check. Changes in sleep habits or patterns: check. Inability to concentrate: check. Irritability: Check. Frustration: check. Anger toward others: check. I’m overwhelmed. I don’t have outlets, and I feel guilty talking incessantly about my parents with my spouse, who still works a full-time job while helping me caregive.
While outside, standing on my parents’ front stoop, I notice mail in my parents’ mailbox, meaning the mailman heard me screaming and cursing. Fear struck that he could report my screaming and cursing to the local Office of Aging, and I’d be investigated for abusing my parents. Instead of taking the wind out of my sails, this caused my fuse to burn brighter. I’d already suffered several rounds of “interviews” over my parents’ conditions during early hospitalizations. I thought of the neophyte medical school graduates whose expertise were anything but gerontology, demanding that I answer for my parents’ behavior and conditions, threatening me with accusations of abuse and neglect if I couldn’t produce subjectively “suitable” answers, while they went on to make misdiagnosis after misdiagnosis without accountability, embracing blamelessness wantonly. One neophyte hospital resident, not reading about my mother’s thyroid condition or severe osteoporosis, sent a social worker to question me about her weight. The social worker, who very flippantly and haughtily mentioned “abuse and neglect”, did not read my mother’s medical records to find that my mother’s not weighed more than 90-pounds in at least two decades due to preexisting conditions that make it difficult for her to gain and maintain weight. Explaining that I can grocery shop and cook, deliver meals, serve meals on red plates, but I cannot force my mother to eat and gain weight, because I have no control over her conditions, I was met with a bored stare. Afterward there was no apology for the lack of understanding on the doctor’s or the social worker’s part. Another neophyte hospital resident assumed that my father’s untended cataracts and lack of teeth were my doing, and sent a social worker to investigate medical neglect. Never mind my father’s Medicare Advantage plan cancelled his dental and vision coverages years before I came on as a full-time caregiver, so my father stopped seeking care on his own. Information which was readily available had anyone bothered to read or word search my father’s EPIC file. Again, there was no apology for the doctor’s or the social worker’s “mistake.” Add, I’m always on edge every day that I see my parents’ new elderly retired white neighbor-man, reminded constantly of his decision to monitor my behavior at my parent’s house. I feel boxed in by constant criticism and unending scrutiny, never hearing anything about any of the good I do. Feeling like the more I do, the more is expected. Feeling like no one with whom I’m forced to interact is willing to observe me as the fifty-four-year-old grown woman I am, and that everyone—younger and older, alike—seem capable of relating to me only as though I’m an uninformed, inexperienced, incompetent child.
As I tried to calm myself, looking up at the branches of a nearby tree, marveling for a split second how their physical presence reminds me of upside down lungs, I chuckled thinking of myself as Kafka’s Josef K.
Shortly, memories of my mother monitoring me flooded my head. I remembered how she placed a full-length mirror in the guest room where I was allowed to sleep. My mother informed me that I was never to touch the mirror, because she carefully positioned it at such an angle as to always see the entirety of the room, and specifically me, without me knowing if or when she was looking. Another mixed-message, as my parents could choose to see me or not see me based on whim. From this and my father’s public goading I became as sensitive to the feeling of being watched as I was of being invisible. I was also sensitive to the feeling of my mother’s feet “pushing” the air as she padded silently outside the guest room door, inspecting me for behavioral infractions and the opportunity to punish me. Careful to spend my time only in spaces that were “sanctioned,” lest I might feel my mother’s eyes on me, then a belt. “No closed or locked doors in this house! You hear me? This is MY HOUSE! This is NOT YOUR HOUSE! This is MY HOUSE! You will ALWAYS BE WHERE I CAN SEE YOU, You will NEVER HIDE FROM ME!”, my mind heard my mother shouting at me.
Still on the stoop, I find myself caving in under the realization that I was likely always on “high alert” as a child in my parents’ house, and still am on “high alert” any time I’m at their house or handling anything relative to them.
I brace myself to go back inside, to finish my chores, to clean up my parents’ dinner table messes. I brace myself to offer only a “grey rock” in the remainder of our interactions, through the remainder of the day. I steel myself against the emotional repercussions of my outburst.
(To be continued…)