(cont.)
Note: Interlude: The Present was edited. Portions brought forth into Postlude.
CW: This content contains coarse language and an emotional explosion.
Postlude: The Aftermath.
“How’d dinner with the ‘Rents go?” my wife asks as we check in with each other the morning after my rage event.
“It was rough. I had a breakdown last night,” I admit.
“Probably appropriate. What happened? Who was the butthead this time?” she asks, expecting me to share that I was short with one of my parents, something that happens at least monthly. Examples of my “short episodes” come when my father rips off his Depends, emptying the contents on the floor, or when my mother hides her Lasix because she doesn’t like going to the bathroom, but then asks me why I think she has increased shortness of breath and wants me to tend her “medically.” In the former, I tell my father he’s made a mess for me, and ask why he thinks it’s appropriate to make an already difficult job harder. He usually bites back with something like, “If you were here when I needed help, this wouldn’t have happened, so this is your own fault.” To which, I normally respond by informing him that he has a mouth and should have asked for help, but that I know he won’t ever ask because that would make him vulnerable, and he doesn’t like to be vulnerable. I also inform him that his expectation, that I should just “know” what he needs and when—with unfailing 100% accuracy—is unreasonable. In the latter, when my mother complains of breathlessness, if her ankles are also swollen, I look in the places she likes to hide her Lasix, retrieve the pills, confront her with them, listen to a handful of lame excuses as to why she’s not taken the medication, and tell her it’s not a mystery as to why she can’t breathe.
“Well,” I began. “This one was different. It wasn’t the normal ‘break’ where I fuss at one of them and the next day is a ‘new day’. This was a full-on ‘terrible, horrible, no good’ deep-bad breakdown. It was over something stupid, too, but I just lost my shit.” Listening to me detail what happened, including all of what I said, my wife’s face looked despondent.
“It felt like childhood, didn’t it,” she stated, matter-of-factly. “These’s too many triggers in that house. You’re back to being a little kid every time you’re with them.” Then, after a pause, “Something has to change, or one of us isn’t going to survive them.”
“Spot on,” I confirm.
“What’s the count?”
“We’re at eight-hundred fifty-six days. Two years, four months, and two days, full-time. Actually, today is eight-hundred fifty-seven days.”
“Yeah… something has to change, or one of us isn’t going to survive,” my wife sighs. “Whatever you decide, I’m with you.”
“I know. Thanks for staying with me,” I say, knowing the number of caregivers on message boards reporting strained relationships and divorce is high. “I have to figure out how to see this through. I just don’t know how.”
“Tonight, if either of them give you any trouble, call. I’ll come and take over.”
At my parents’ house for my “dinner and night shifts,” I walk in to see my parents enjoying the privacy of their house, watching a “Murder, She Wrote” rerun on TV without a care in the world, while I shoulder the entirety of their lives, and I’m enraged by this. I grab a remote, and turn off the TV.
“HEY! WE’RE WATCHING THAT! WHO DO YOU THINK YOU ARE?” my father demands.
“I’m the person who keeps you in this house. I’m the person who makes it possible for you to be in this G-D DAMNED HOUSE! THAT’S WHO!” I rise to my father’s level, matching his aggression and volume. “Since you’re used to erasing me… pretending I don’t exist, I thought I’d help you focus. I have some things to say, and you ARE going to listen. I don’t give a DAMN if you don’t look at me, or if you pretend you can’t see me, but you sure as HELL are going to HEAR ME.” I throw the TV remote at their couch. It lands out of reach for both of them.
“OH NO, YOU’RE NOT!” my father screams. “YOU DON’T TELL US WHAT TO DO! WE TELL YOU WHAT TO DO!”
“Dream on, daddy-o,” I goad. “And, don’t even think about wheeling that little chair of yours out of this room. I’ve served you for years, listened to you, ‘obeyed’ like a good little lackey. You move that chair and I’ll find a way to make you miserable.” I’m unsurprised to hear myself screaming again, but I am surprised to hear myself making empty threats. My father stops trying to leave. My mother’s eyes are wild, and big like saucers. I can tell he’s furious and she’s frightened.
I point at my father, “YOU! You didn’t take care of your father! Your mother took care of him. You went to visit once a week, but you didn’t take care of him when he was sick, or as he was dying! After your father died, your mother knocked down her house and built a new one. You went to the same address, but you weren’t made to spend the rest of your life going back to the same place where your parents abused and neglected you! When granny was sick? You drove her to doctor’s appointments. She handled everything else! She managed herself and her own life until the day she died. She even preplanned her own funeral! YOU… YOU DID NOT TAKE CARE OF ANYONE THE WAY YOU’RE EXPECTING ME TO TAKE CARE OF YOU! You didn’t plan. You couldn’t have been bothered to plan! You didn’t even have a proper will until I forced you to see a lawyer… LAST YEAR! The will you had was from 1974. Your will was FIFTY-ONE YEARS OLD until I stepped in! You dropped both of your lives on my shoulders without an explanation, without any direction. You dumped it all and expected me to just ‘FIGURE IT OUT MYSELF’! Now it’s all mine to handle. What the fuck! WHAT THE FUCK WERE YOU THINKING? OR, WEREN’T YOU?”
“Are you done?” my father’s voice sounds bored.
“NO!” I was just starting, “I begged you to let me know what was going on with your health. I begged you to keep me updated with your doctors names, your diagnoses, your medications, so if there was an emergency, I could help you. I didn’t know shit about what was going on with either of you, but everyone expected me to have your history and wanted me to speak for you, including you! You treated me like a mushroom, kept me in the dark under shit. You said everything was ‘none of my concern.’ You told me to ‘mind my own business.’ You told me to ‘butt out.’ But, you kept listing me as your contact! I know why you listed me! So if you did end up in the hospital or in care somewhere, you could depend on me to come for you. You knew I’d always come for you. You knew I’d always protect and defend you. You knew I’d always take care of you. Because I’m obedient… and I always do my best to fulfill your every command! I said it would take one major health incident, one hospitalization, one accident, and your world would come crashing down, even with me as your dependable rescuer. You called me a ‘storyteller’ and laughed at me for having a ‘great imagination’.” Pointing at my father, “If I’m the one making a suggestion, or giving you advice, the answer’s always ‘NO!’ Now, look where we are! You had that ‘one major health incident’, and everything DID come crashing down! I was right!”
“It’s true,” my mother whimpers. “It’s true. You told us everything and you were right. We should have listened.”
Hearing her voice, my attention turns to my mother. “YOU! When you chose to take care of your mother… you went to a place that looked nothing like the one where you grew up. Just like dad, you went back to the same address, but your parents’ house changed so much in the time since you were little, it wasn’t recognizable! You weren’t forced to spend time in the exact same house where you were abused and neglected by your parents.”
“It’s true,” my mother confirms.
“When you took care of your mother… you had two sisters and a brother on hand, a brother-in-law, neighbors, childhood friends, people who came to help and people who came to visit. You had actual volunteers to share the load of caregiving ONE PARENT! Who do I have… FOR TWO? HUH? WHO? No family. No nearby friends. No one for support, not even social stuff… like someone to grab a coffee, so I have more people in my life than you! You did your best to isolate me when I was a child. Then, as a teenager and an adult you controlled me. You didn’t respect my boundaries, didn’t even let me have boundaries! You competed with me, parentified me, lied to me, gaslit me, never listened to me, constantly insulted me. You never had any compassion or empathy for me! You! YOU LIKED PRESENTING A PERFECT FAMILY IMAGE TO OUTSIDERS, BUT WE WERE FAR FROM PERFECT! YOU WERE FAR FROM PERFECT! But, those weren’t the only goals were they? Controlling me? Pretending we were perfect? The ultimate goal was to keep me from having a life, to keep me from knowing I could say ’NO’ to you. You always did just enough to keep me hoping… if I was good enough, if I hung around enough, if I did enough, you might like me, trust me, believe in me, treat me well, love me. The goal was to always have me begging for your approval, so I’d stay here serving you… beneath you, subject to you! On the outside, looking in at this set-up, you still get the perfect family! By default, you get the perfect family! Everyone sees me here all the time, handling your needs, doing what you want, selfless for you. Jackasses who know nothing about caregiving and nothing of this situation tell me ‘what a good daughter’ I am, that I’m ‘laying up treasures in heaven’—a place I don’t even believe in, a place that I think is a laughable farce. People tell me that I’m doing the right thing, ‘paying you back for being my parents’, and no one considers I shouldn’t owe you anything! You CHOSE to be PARENTS! I didn’t choose to be your daughter. I didn’t choose to be your caregiver! No child OWES THEIR PARENT ANYTHING! Especially not eldercare! No one considers the damage your willful selfishness and your intentional lack of planning is doing to me!”
“YOU GOT IT ALL WRONG!” my father screams.
“DO I? THEN CORRECT ME! PLEASE!” I wait. I stand and—in my head—count to ten, then count to ten again, carefully minding the “one thousands” between each number. I say the alphabet in my head. Silence. Neither of my parents breaks the silence. My father does not “correct” me. I don’t think he can. Not because he doesn’t have the ability or the memory, but because he can’t refute what I’m saying. There is no correction.
“Okay, let’s review, shall we?” I get bolder. “I begged you to prepare. More than twenty years ago you were already neglecting this house. Your kitchen sink was clogged for over a decade. Both bathrooms were barely functional for as long as I can remember. You didn’t care. You kept saying you’d handle it all on your own. You were going to fix everything by yourself. Fact check: You did not. BUT! When you should have been updating your kitchen and bathrooms, installing ADA equipment in preparation for this time in your progression, fixing your floor plan to accommodate an eventual and guaranteed need for a wheelchair—LIKE I TOLD YOU TO DO—you balked! Instead you dropped FIFTY THOUSAND DOLLARS TO ENCLOSE YOUR PORCH! FIFTY THOUSAND DOLLARS COULD HAVE UPDATED YOUR HOUSE! WHO PAYS THAT MUCH TO ENCLOSE A CLOSET-SIZED PORCH WHEN THEY NEED A BATHROOM THAT WORKS AND A FUNCTIONAL FUCKING KITCHEN? WHO? YOU WERE RIPPED OFF! WHY? Because you didn’t listen when I told you the contractor had a bad reputation. If I tell you to do anything, you always do the opposite. If I say anything, there’s always an argument. If I recommend someone or suggest something, you find a way to do the exact opposite. YOU’RE INCOMPETENT! You demand my obedience and service, but not to head off problems with solid advice or solid research. You expect me to come in after you make messes, to clean up after you. If I were a boy, IF I HAD A DICK WOULD YOU LISTEN TO ME? Or, am I a joke because I’m a girl? Is that it? You don’t like that I’m a girl? Well, this GIRL gets SHIT DONE. Who ended up fixing your kitchen, your bathrooms? Huh? ME! Nothing was useable until I came on the scene EIGHT-HUNDRED AND FIFTY-SEVEN DAYS AGO! AND, I’VE NOT HAD A DAY OFF SINCE THEN! I’ve gone 12 and 16-hours, sometimes 24-hours a day, every day, for EIGHT HUNDRED AND FIFTY-SEVEN DAYS STRAIGHT!”
My father’s eyes are closed and he’s pretending to nap. My mother’s hands are in front of her face and she’s quiet.
“No one? Nothing? No come backs? No retorts? Huh?” I demand.
“I don’t like what you’ve become,” my father sneers, eyes yet closed.
“DEFLECTION! DISTRACTION! I would have fallen for that yesterday, immediately panicked, felt compelled to make a defense against your insinuation that there’s something bad or wrong with me. Not today BUSTER!” I laugh. “What don’t you like? Huh? That I’m educated? You don’t like that? Financially independent? You don’t like that? How about that I didn’t walk in tonight ready or willing to take your bullshit? You don’t like that I’m not a doormat today?” I dare him to say “angry” or “gay.” I know that my father doesn’t like “angry women.” And, I’ve long suspected that he might be a homophobe, but I also know—if he is—he won’t admit to being prejudiced. I move on. My father starts grabbing at his wheelchair locks, and I know he intends to leave the room, storming out the best he can, despite not being able to maneuver his chair smoothly or quickly.
“You always did take yourself too seriously,” my father says. “You have to learn to lighten up.”
“I ALWAYS TOOK MYSELF TOO SERIOUSLY? Are you FUCKING kidding me? You made fun of my intellect, calling me dummy and stupid, idiot and imbecile all throughout my childhood. You told me to figure everything out on my own, then made fun of the way I did things. You called me an animal and a dog for laughs. You mocked me, let my brother make fun of me! You were supposed to stand up for me, protect me! Instead, you degraded me, diminished me! If you didn’t take me seriously, and mom didn’t take me seriously, and you didn’t make my brother take me seriously… you let other people treat me like garbage… and I wasn’t supposed to take myself seriously… WHO WAS? WHO WAS SUPPOSED TO TAKE ME SERIOUSLY? WHO WAS SUPPOSED TO TREAT ME LIKE A HUMAN? HUH?”
“I’m done here,” my father says.
“I’m not done here!” I scream.
“Well, we are, and this is our house,” my father shoots back at me.
“I said… ‘I’m not done here’.”
“Then that’s your problem, not ours,” my father insists.
“Oh contraire. That’s where you’re wrong. My anger is your problem, because you made this situation, and I’m not obligated to maintain it.” Then, dawning on me what my father meant when he said, “this is our house,” I spit, “That’s why you wanted to stay in your house! This is about power and control! Power and control over me, and everyone who walks in the door! You demand power and control while everyone suffers your bullshit! Well, I’m tired! And, I’m tired of YOU!” I feel my anger rising, mostly because my father has shown me yet again what he thinks of me and how he feels about me.
“It’s time for dinner,” my father says, more like a demand. My mother is covering her face with a throw blanket. She’s perched on the edge of her recliner, not sure whether to sit back or stand up. I feel like she’s watching my father and me to see which of us will “win” before she decides what to do.
“Since you can’t eat dinner until I make it for you, you get to listen. I said ‘I’m not done’, and I’m going to finish. Today, I’m going to finish, and you don’t get to call the shots.” My father stops moving again, resigned.
“2017, I begged you to move in with me. I saw this whole scene coming, and I begged you to consolidate houses. I begged you to consolidate houses before there was a big emergency, while there was still time, when you could still acclimate to a new place. I found house after house with in-law quarters. I found places with independent kitchens, large modern bathrooms, space enough for me to install ceiling tracks to move you when you wouldn’t move on your own. I found places with large yards and enclosed porches, so you could enjoy being outdoors long after you’d be housebound. I told you that driving back-and-forth between your place and my place was a waste of resources. I told you it wasn’t ideal in bad weather. I told you it would exhaust me. I told you, if there were emergencies, instead of having to leave my house, get in my car, and drive a fucking mile, I could just walk up or down some stairs if we lived in the same house. You refused to listen! Power and control, and protecting your hoard was more important than me.”
My mother uncovers her mouth and says, “We were wrong. We should have listened.”
“Really? I like goldfish!” I scream. My mother looks at me, confused, not understanding. “Oh! Pardon me! Here I thought we were just stating random facts. I KNOW YOU WERE WRONG! I KNOW YOU SHOULD HAVE LISTENED!” My mother ‘gets it’, and she covers her face with the throw blanket again. “Now? Now I have to write checks for two school taxes, two property taxes, two electric bills, FOUR FUCKING PHONE BILLS BECAUSE YOU STILL HAVE A FUCKING SEPARATE LONG-DISTANCE PLAN! WHO DOES THAT? WHO STILL HAS A LANDLINE BILL AND A LONG-DISTANCE LANDLINE BILL? I have to pay two water bills, two heat bills, two home insurance plans, two lawn care companies. TWO OF EVERYTHING! WHY? BECAUSE YOU WOULDN’T LEAVE YOUR HOUSE! I can’t just call any of these businesses and cancel any of these accounts, or even change how you pay, so I don’t have to write checks every month. No one will talk to me because… I’M NOT YOU! You’re the ones in need of care. YOU NEED ME! I DON’T NEED YOU! Because YOU NEED ME, you should have bent to me, to make this caregiving easier on me. Instead? You were selfish. It had to be your way. Everything had to be your way. You did NOTHING to make this easier on me! NOTHING! Don’t even get me started on personal taxes, and the fact that I can’t claim Head of Household so there might be more money for us to hire more people for more help and more relief FOR ME!”
“We’re sorry. We are,” my mother squeaks. “Aren’t we sorry?” She motions to my father, who is back to faking a nap.
“Don’t bullshit me. He’s not sorry. In all my life, I’ve never heard him say he was sorry for anything. Ever. And, you? You’re afraid because I’m screaming. You’re scared because I’m cursing. You’re not sorry for the choices you made, for how things have gone, and you’re not sorry that nothing can be changed NOW. You’re pleased that this is the way things turned out, because you get to be in your house. You win! That was the goal, wasn’t it? That was the point, right? Power and control, you win!”
I’m starting to falter. I’m tired, but have more to say.
“Three different medical providers told me three different things about your cognitive statuses. I was told both of you definitely have dementia. Then, another practitioner yanked that carpet from under me, telling me both of you have normal age-related cognitive decline. Yet, another spun me around, telling me they were unsure, that tests were inconclusive, that both of you could have vitamin deficiencies or some other health issue causing memory and personality changes. So, I’m left without direction, even though I have my suspicions, including a list of Grade-A malignant personality disorders! If I ask dad’s neurologists about his Parkinson’s or mom’s cardiologists about her Congestive Heart Failure, none are willing to give me stages for your diseases. It takes an hour to load the two of you into a car and to arrive on time for an appointment, we get 15 minutes and a med update or a script renewal, and that’s it! No matter how many times I ask bluntly, I get smoke and mirrors. No information. No certainty. I can’t plan if I don’t know what’s going on, and I can’t ask for help if I don’t know what’s coming. I’m left figuring everything out on my own, the same shit I dealt with as a kid. I suffer everyone’s apathy, everyone’s lack of caring, everyone’s lack of responsibility, and I’m tired. I AM TIRED! I wonder, what do I have to do to prove how desperate I am for information, for direction, for help? I wonder, what do I have to do to prove how tired I am? What do I have to do before someone believes me? I’m also tired of things falling apart and then—after the fact—randos popping up to say ‘Ohhh… it’s too bad… I wish I’d have known, because I would have helped’. That’s bullshit, too. That’s playing both sides of the fence: Intentionally not being around because no one wants to be a participant, then claiming everyone would have been around if anyone had known anything at all. All the while, you get what you want, sitting here like a king and a queen, waiting for me to do everything, handle everything, shoulder everything.” I shift my position in the room so I’m standing in front of both of them, able to look at both of them.
My father asks, “How is any of that my fault? I don’t control the doctors! I don’t control anything!”
“Ohhh… but you do! And, you did! You lied to everyone all the time. You hid everything from everyone, specifically me. Your health. Your information. Your financial situation. The condition of your house. You lied. You lied thinking nothing would change. Now?” I’m exhausted. I’m running on fumes. “Whatever….”My mother is still hiding under her blanket. My father is looking out a window.
“We weren’t ready to plan… because we weren’t ready to die. I’m not ready to die,” my mother tells me, desperately. “I thought we’d never get this old. We could handle everything until we couldn’t.” I ignore her, but her admission refuels me for more.
At my father, I point, “I’m stuck taking care of you with Parkinson’s, late stage kidney disease, peripheral edema, neuropathy, chronic bladder infections, persistent UTIs, bladder incontinence, irritable bowl, constipation AND incontinence, gastroparesis, repeat ileus, strangulated hernia, a poorly healed twice-fractured hip, osteoarthritis, two knees with bone-on-bone arthritis, idiopathic pulmonary fibrosis, anemia, thyroid disease, mini-strokes. You’re legally blind! You have nerve damaged hands and a broken fucking finger! To move you or pick you up off the floor… when you get it into your head to stand without help? TO HOLD YOU OR PICK YOU UP… BY MYSELF… YOU’RE A BRICK!” My father is pretending not to pay me any attention. “I do everything, from cutting up your food to wiping your ass. I’d think you could spare some respect for me.”
At my mother, I point, “And, YOU! Kidney disease, chronic bladder infection, persistent UTIs, repeat kidney stones, severe osteoporosis, a fall risk, osteoarthritis, three heart attacks, traumatic brain injury, calcified aorta, prolapsed valve, persistent afib, pulmonary embolisms, COPD, raynaud’s, MGUS, thyroid disease, and on and on. LEGALLY BLIND!”
At both of them I scream, “I AM NOT A MEDICAL PROFESSIONAL! I AM NOT A NURSE, NOT A NURSE’S AIDE, NOT A PRACTITIONER OF ANYTHING! I AM NOT TRAINED FOR THIS!, BUT I AM RESPONSIBLE FOR EVERYTHING, IF ANYTHING GOES WRONG, I AM THE ONE WHO WILL BE HELD RESPONSIBLE! NOT YOU! ME! NO ONE WILL HOLD YOU ACCOUNTABLE FOR HOW YOU FAILED TO PREPARE, BUT EVERYONE IS CRITICAL OF ME IF I FART SIDEWAYS!”
I walk outside my parent’s house, stand on their stoop, try to calm myself, then return to them. “Words I never needed or wanted to know… anhedonia, alexithyma, anosognosia, Capgras syndrome, confabulation, cricketing, Diogenes syndrome, dyschronometria, encephalopathy, Facitious disorder, garrulity, hoarding, Othello syndrome, punding, serotonin syndrome, sleep drunk, showtiming, sundowning. Words that mean crazy-making and disruption… and more work. All while protecting you from abuse and neglect, exploitation and medical malpractice, and defending you against simpering ELDERSPEAK! I’m tired. I’m tired of this… caregiving. I’m tired of you. Both of you… I wish both of you were dead already.”
I hear my mother take a breath, and she whispers, “You don’t mean that.” I ignore her. I walk away from both of them, leaving my father staring at me, his face changed from fake boredom to shock. Neither of them seem interested in dinner anymore.
All three of us go about the rigors of our evening in stark silence. My parents won’t look at each other, and I control myself so as not to look at them. All of us seem to be stinging from my tirade. I don’t know how they feel, and they’d never share that with me. I’m reeling from the moral injury of telling my parents that I wish they were dead. I’m not sure how any of us will come back from this day, or how I’ll come back from any of this. For a long time, I thought I might never recover from caregiving, that the changes in me could become paralyzing and permanent. Now I’m sure of it.
I feel like no one ever sees when I do good or what I do right. I feel like no one knows how much time and effort goes into caregiving, or making myself continue. No one wants to know what stress I’m under or how eldercare has affected my mental, physical, or emotional health. I’m constantly on edge because anyone could see anything at any time, make any assumption, and I’d be criticized or given a lesson or end up “in trouble.” There were no agencies stopping my parents from abusing or neglecting me when I was a fragile, weak child, but any out-of-context moment can be misinterpreted by anyone, any time, while I caregive, and I could find myself in a world of assumed elder abuse, despite all I’ve done to help and protect and serve them, despite all I’ve sacrificed and lost because of them and for them.
It’s difficult to manage a person’s life when you have no good or real idea how long they’ll require care. This lack of timeline leaves me feeling like I will be made to manage too many things at once for too long. I have already had too much responsibility for too long. My parents, the medical community, society, and politics have put too much on me. Caregiving two elderly people at once, both with myriad complex health issues and dementia (or not dementia, who knows?), is far too much for one person to handle long-term, realistically. Having no support system and suffering a handful of agency helpers (who many or may not do what they’re assigned) is less than ideal, and definitely not appropriate. But, so what, right? So what? So long as there remain gaps in coverage for care, as long as caregiving continues to be unpaid, so long as caregivers remain too overwhelmed to make themselves heard, and as long as the topic of care remains invisible, so what.
My wife and I decide to hire an additional helper so I might escape dinnertime contact with my parents for a few weeks. If we keep the dinnertime aide beyond a few weeks, and for a full year, the additional help will cost my wife and I 30k, this on top of the already existent 65k bill my parents pay for five hours of daily morning care. We have thinking to do, choices to make. Every bit of our own money that we spend on my parents cheats us out of our future and our own preparations for old age and potential infirmity. The thought of this leaves me feeling depressed and dispirited, punished for existing, punished for trying to “do good.” But, the additional helper will work the period of day during which my parents are most demanding, and when I typically endure the most severe mood swings and most “off” behavior from them, so my wife believes it’s money well sacrificed. The additional aide will be on site to handle my parents’ normal personalities made worse with age… or their sundowning, I wouldn’t know which… since diagnoses and certainty are hard to come by.
(To be continued…)