(cont.)
Afterward: My time.
During the first week of my release, thanks to the dinnertime caregiver, I’m surprised by how quickly I adapt to my new schedule, and how quickly my general sense of well-being changes. I’m responsible for just two hours less than my normal schedule, but those two hours feel like a colossal liberation. I can’t believe how free I feel, or how little I care whether the new person knows what to do, knows where things are, knows when my parents’ require specific tending, or knows how to tend them. I’m completely given to turning over the hours, and have no interest in checking in or getting a “report.”
On the first day, I wake feeling rested and relaxed, something I can’t remember experiencing since beginning full-time eldercare. I clean my own bathroom for the first time in almost 30 months. Normally mixing natural products when—historically—I had time, on this day I relish the noxious smell of harsh store-bought cleaning chemicals in my own toilet, my own tub, my own sinks. I’m spun with happiness at the feel and look of sparkling surfaces in my own house. Daily, I wipe counters in my parents house, both kitchen and bathroom. Regularly, I scrub my parents’ toilet, their tub, their “jack and jill” sinks, and their floors. Every space laden with the detritus of my parents bodies, insides and out, and their caregivers prints, I wash and sanitize often so as to prevent filth build-up and germ spread. Usually, I’m too tired to come home from their house to do anything of the like at my own house. This first day, after scrubbing my own space, I stand in my own shower, under hot water, for as long as our 50 gallon water heater pumps a scalding temperature to me. It feels like forever and heaven, and when the water finally runs cold, I wonder whether there’s such a thing as a 100 gallon tank.
Normally, I wake, wander around the house in my bed clothes, bitch and moan about having just an hour or two for myself, and head to my parents in a self-escalated upset that borders on rage. Normally, I find no reason to be awake or to be alive, outside of my servitude and the state filial law that requires it.
On day two, I wake and again shower immediately, because it feels like time is something that belongs to me. This day, I’m not upset about having to meal plan for my parents. And, I set about cooking without as much dread. Though it still takes four hours to put together 14 meals for the coming three and a half days, I work more focused and more un-rushed than usual. I’m not free of the strain I normally feel during this caregiving activity, but I am significantly more adept.
Normally, on cooking days, I wake anxious and feeling frantic, worried about the nutritional values of what I assemble, knowing the hours I work will be capped by barely enough time for me to eat a meal or wash properly before having to be at my parents’ house for dinner and evening caregiving shifts. All of my energy goes to making sure they’re cared for, while drastically neglecting myself and my own needs. The two cannot exist together, and one must suffer, and that—by default—is me.
During my father’s first hospitalization, the one that set off my stint in full-time caregiving, I learned abruptly he was malnourished. Whether due to pandemic scarcity fears, irrational rationing of food, infection-elevated metabolic rate, or something else, he was frail and underweight. Without asking the details of his situation, the doctors, nurses, and social workers placed blame for his condition squarely on me. No one questioned my father. Because I showed up with him, I was accused and then treated like a criminal, despite having just come on the scene. I remember this every time I make meals for my parents. During my mother’s first hospitalization, just three months after my father’s first hospitalization, I learned she was also malnourished. Again, whether due to pandemic scarcity fears, irrational rationing of food, infection-elevated metabolic rate, her thyroid condition or other co-morbid health issues, or… a long undiagnosed (but suspected) eating disorder fostered by the body shaming of her era, she was frail and extremely underweight. Without asking the details of her situation, the doctors, nurses, and social workers placed blame for her condition squarely on me. No one asked my mother anything. As with my father, because I showed up with my mother, I was accused and treated like a criminal. I remember this also every time I make meals for my parents. Both of these horrid episodes with “authorities” are why I not only stress about meal prep and cooking, but why I also take pictures of the meals I make. Proof of the colorful menus and careful selections. Proof of calories and content. Whether my parents eat all of their meals or not, I can’t force them… or that truly would be abuse.
Every time I meal prep and cook for my parents, I remember the trauma of the hospital’s accusations, and I’m anxious, irritable, tense. I can’t avoid making meals for my parents, which would be my preference, so I’m re-traumatized any time I see my parents eating, and during my twice-a-week cooking marathons. Re-traumatized now, regularly, for two years and four months, and likely for as long as my parents are alive. My relationship with food has changed tremendously because of the behavior I experienced at the immature, messy hands of neophyte doctors, nurses, and social works who didn’t behave or look old enough to shave their legs. None of whom understood generational differences or had any discernible cultural competency relative to our aging populations. None of whom had a lick of personality or apt discernment. But, I digress. Still, I work without as much dread. more focused, un-rushed, and more adept than usual.
On day three, I sit. I enjoy a cup of coffee while looking out my own bow window. I enjoy watching birds and squirrels, a skittish chipmunk and a preening stray cat. And, I think.
“Hon, can you hear me?” I shout through the house.
“Yeah, no meetings for an hour. What’s up?” my wife answers, walking to me so we’re talking and not hollering.
“I was thinking about my great-grandmother and my grandmother.” I share.
“Which ones?”
“Mom’s side.”
“What about?” my wife gently coaxes me.
“When my grandfather was trying to impress my grandmother, trying to get her to go out with him, he surprised her with a solid chocolate Easter bunny. The way my grandmother told it, she was 20 and my grandfather was 22. He showed up at her parents’ house, knocked on the door, and when she answered—with her mother standing behind her—handed the candy to her. My great-grandmother reached for the candy, snatched it, unwrapped it, bit off the bunny’s ears, and slapped the remainder of the broken gift back into my grandmother’s hands.”
“I remember this story,” my wife confirms.
I continue. “Remember being at my grandmother’s funeral? My cousin’s story?”
“Which one?” my wife asks.
“My uncle’s children lived with my grandparents while his wife was institutionalized. At some point in her ‘hospitalization’, my aunt was able to send her daughter a birthday gift, a little porcelain music box. My grandmother coveted that gift. When my cousin left for school one day, my grandmother took it. My cousin threw tantrums every day for weeks, begging my grandmother to return the music box, the only thing my cousin had from her mother. Finally, tired of the fits, my grandmother retrieved it, showed it to my cousin, walked it to an uncarpeted area in the house, threw it to floor, and ground it with her heel.”
“That’s awful,” my wife says. “I remember your cousin telling that story at your grandmother’s wake.”
“Right, but… think about it. My grandmother had a defining story about her mother destroying her present. My cousin had a story about my grandmother destroying her present, so I assume my mother and her sisters have similar stories. And, it makes sense that my mother would destroy my presents.”
“That doesn’t make it right,” my wife presses.
“True. I’m just saying. It’s so clear, the generationally inherited behavior.” I add, “Remember, my grandmother knew I had a favorite pair of sneakers? I told you, while I was at her house for my summer month, she stole my sneakers and commanded my grandfather to throw them in the incinerator on a burn day. When I couldn’t find them, my grandmother lied to me, said she had no idea what happened to them, told me she wasn’t my sneakers keeper and admonished me for not keeping track of my own belongings. She called me irresponsible, said I shouldn’t have nice things if I couldn’t take care of them. It was my grandfather who confessed to me that my grandmother gave the sneakers to him and told him to burn them. When she wasn’t looking, he pulled the sneakers out of a hiding place, gave them to me, told me to put them somewhere she couldn’t find them. We lied to grandmother together, pretending those favorite sneakers were gone, all the while waiting for the day I would go home and could wear them again.”
“Because you couldn’t wear them while you were there, or she wouldn’t have thrown a fit about the two of you disobeying her,” my wife says, knowing my family well. “There was no reason you shouldn’t have had those shoes, except that she didn’t want you to have them. They made you happy. Your mom’s side of the family… they don’t like anyone to be happy.”
“Right,” I confirm. “This is why… I believe my birthdays and gifts had to be turned into torture.” I hedge, “So… technically, both my grandmother and my mother were broken. Emotionally broken.”
“You’re not.”
“Okay, we know that’s a lie, and… we also know I’m in a position to pay for therapy. So, any fleeting ‘health’ I might have comes from financial and positional privilege, neither of which my grandmother or mother had. Also, time. Remember, psychiatry used to be for the purpose of silencing people, especially women. It wasn’t until recent that an average woman could make an appointment with a shrink and not worry about being put away for wearing pants or wanting to be educated. My grandmother was first generation, born in 1904, given away at age eight as a live-in domestic to a home owned by an elderly couple. My grandmother’s parents were paid for her services. She had a fourth grade education, and religion was the most important outlet she had, thus the Holy water drinking. What kind of recipe was that?”
“What about your mom? She could have made the choice to do better.”
“Nope. Think about it. My mother… born in 1936. She went to school. She studied. She went to college, moved across the state, had a pink collar professional job, worked her way to the head of a department, earned a salary, lived on her own. She did do better than her mother. Her ‘doing better’ was changing the trajectory of her external life compared to that of her mother’s. I think she had to pick. Who has the energy or fortitude to focus on mental, physical, emotional, educational, professional, financial, social, political, changes at once? For some, it has to be one thing, or two things. No one can address all of their family’s deficits at once in one generation, while keeping up with the times. I think I forget this… that my mother did do better than her mother, and for all the things she couldn’t or didn’t address, she reverted to type, which is natural. We revert to our original settings under pressure.”
My wife is silent. I know she doesn’t agree with me, mostly because she lives with me, and there have been times when the repercussions of my mother’s abuse and neglect made me a terrible person. In the 27 years we’ve been together, I’ve grown more than I could have ever imagined, but it took time and I’d still never profess to being “healed” or “fixed.” I’m fortunate my wife stayed with me during the early years when I was most unsettled. She’s angry at my parents for damaging me, and believes they didn’t do enough to grow in their lifetime. She’s also angry because now, whether the cognitive pruning that leaves most elderly people with only their happiest memories (accounting for why so many elderly people seem content and settled) or dementia, my parents insist that my “stories of bad experiences” are make-believe, and—as such—don’t call for apology or closure.
It’s easy to be a backseat driver, and it’s easy to judge someone else when you don’t know their origins, or only know the mythological stories of a persons origins. It’s also easy to judge others based on our own life’s “action reel” or “measuring stick.”
“For better or worse, my mother’s educational, professional, and financial accomplishments were corrections for her generation. Because I have the benefit of educational, professional, and financial stability, I’m able to make some emotional and social corrections….”
“You gonna finish that thought?” my wife asks.
“I guess… whether my mother’s severe emotional dysregulation and narcissism are functional disorders resultant from own her mother’s abuse and neglect, or organic conditions from the traumatic brain injury she got as a teen, or even genetics, I want to believe they’re nothing she would have chosen for herself.”
“It sounds like you’re trying to give her an out,” my wife suggests.
“Maybe. I don’t know. It could also be that these first few days off are making me feel ‘nice’ toward her. I do have some thoughts about my father,” I say, changing the focus away from my mother.
“Well, let’s hear them.”
“You know my dad was forced into retirement at 53, yes?” my wife confirms I’ve shared this prior. “Well, all of his same-age buddies ended up either switching careers or teaching. They were required to sign non-competes, but they were all allowed to find work in other fields or adjacent fields. My dad was the only one in his age group who didn’t try to find something else. I don’t think he could. I think he was already affected by disease. I think it was a relief for him to be home, not to have the pressure of performing. His world got really small after that, and when he ‘disappeared’ from everyone’s sight, no one bothered to come looking for him, or even to ask what happened, why he wasn’t around anymore,” I continue rambling. “Fast forward 10 years. Remember when we moved here, my parents’ kitchen sink was clogged? Every time we asked my dad if he fixed it or called someone to fix it, he’d slough us off? I think it was about 10 years more until I called a plumber to clear that clog. In the meantime, he was saving a day’s worth of dirty dishes in a bucket, carrying them to the basement, washing them in a utility sink, and carrying them back upstairs. He ‘made do’, which was illogical.” I wait for my wife to process what I’m saying before continuing. “Remember how, every time we asked about the sink he’d tell us to ‘mind our own business’ and insist the sink was clogged just a ‘couple months’ or ‘maybe only three months’?”
“Yeah, that made me mad… because he was lying to our faces,” my wife confirmed.
“Maybe. Or, maybe by then something neurological was going on. My parents used to dance every month. They’d go to old halls and spend hours listening to Big Band music and polkas. My dad loved to dance. He was good at it, too. He also used to go for a run every morning before work, three to five miles. He lifted weights. And, driving. He loved to take us out for Sunday drives in the country, or to explore a random new place. He loved to read. He read tons of books every week. His stack was always high, and he always got through them in time for our weekly trip to the mall bookstores, where he’d buy a new pile. He was a happy guy, active and adventurous. Curious about new things, especially science things. Then, all this changed. I was a pre-teen. I thought he changed because he didn’t like me anymore, because I was growing up and ‘developing’. But, he also started making excuses about why he couldn’t take my mother dancing. He stopped running. He didn’t use his weight bench anymore, stopped making adventures for us. Tapered his reading habit. Didn’t stop collecting books and magazines, but stopped reading them. He started talking about tingling in his hands and feet, how tired he was all the time.”
“What does this mean?”
“Well,” I continued. “Parkinson’s affects the motor cortex, right? Standing, walking, tremor, right? But, add all the stuff my dad stopped doing… things that required balance and following a beat, judging distance and aim, learning new words, keeping track of time… I wonder if he had young-onset Parkinson’s. He stopped doing things before he was forced to retire. I wonder if he struggled to hide his disease through his late-40s and early-50s while he was still working. That’s about the age he was when he started to be… different. This means… he could be suffering from this hideous shit for almost half his life. He’s 88 now. It’s possible… I’ve been chasing the dad I remember from when I was 10, and angry all this time because he’s been missing for 40-some years. Early-onset Parkinson’s would explain a lot.”
“Is this like the time you thought he had Normal Pressure Hydrocephalus?” my wife asks, smiling.
“No. I’m not diagnosing. I’m armchair speculating. Though… maybe,” I catch my wife’s chiding. “Based on his age, and the age at which things began to change, I really do believe my father could have had young onset Parkinson’s. The changes were already evident by the time he was in his early-50s. Remember, it took years of nagging to make him see a doctor. He was almost-70 by then. He’s never been tested for anything. He wouldn’t allow it. He only submitted to anecdotal reporting, and if his neurologist didn’t ‘ask the right questions’ my father didn’t give him any extra information. With Parkinson’s, a lesser discussed but equally big deal—in my opinion—is cerebellum damage. This is the place where a person’s ability to keep time ‘exists’. Someone with cerebellum damage can be in the bathroom for 4 hours, but insist it’s just been 15 minutes. They can have a clogged sink for 10 years, but insist it’s only been 3 months. While the most outwardly noticeable effects of Parkinson’s comes from motor cortex damage, the disease causes widespread neuronal death, including in the cerebellum. They’re not lying. Their brain is broken. This explains his resistance to getting help for his finances, making a new Will, handling general maintenance of the house and himself.”
“Or… it’s confabulation,” my wife suggests. “He’s filling gaps in his memory and thinking with made-up, misinterpreted, distorted information.”
“Which is absolutely certain evidence of a broken brain,” I repeat.
Seeing the consternation on my face, my wife changes course, “Okay, what does all this mean?”
“I don’t know. Maybe… I’m constantly livid… because I’ve not had time to step away, think through what’s going on with him, with this situation, with me. Maybe I’m overtired and ‘can’t see the forest for the trees’. Maybe he’s suffered for decades, and all the things I’m accusing him of hiding and lying about… are things he truly couldn’t control or comprehend anymore. Maybe he did do the best he could with what he had where he was, and how he was.” My wife was quiet, so I continue.
“I remember, after my Granny died, I drove to her house one last time before it went up for sale. An old neighbor saw me and came to visit. During that visit, the old neighbor told me, Granny used to beat my dad and humiliate him to make him behave, from childhood until he left for the military. One of the neighbor’s stories really stood out and haunts me. My dad was a toddler. He got in trouble. It was winter. My Granny wet him and his diaper with cold water, then put him in her metal clothespin bucket and hung him on her metal laundry line, outside. She left him there until he turned blue and stopped crying. It was only after he got quiet that she took him inside. I can’t mesh that image of my Granny with the Granny I knew. She loved me. She was compassionate and gentle. She was kind. She was very maternal with me, and she never threatened me or hurt me. But, I came along when she was in her mid-50s. She was done being a mother. My cousins were 10 years older than me, so she was done with the novelty of grandkids and being a new grandmother. I came when she had patience and was settled. My grandfather? He was a shellshocked WWI vet. A violent alcoholic. A n’er-do-well who couldn’t… or wouldn’t keep a job. He beat my Granny constantly, and he beat his kids, my father included. My grandfather was also almost 20 years older than my Granny. That wasn’t a marriage, so much as it was my Granny hooking up with a father figure. And, him? That wasn’t a marriage so much as it was my grandfather being a dirty old pig, knocking up a 19-year-old in 1935, then being angry about ‘getting caught’ for the rest of his miserable life.”
“So, how does this play out now?” my wife asked.
“I believe my father’s inability to regulate when he’s angry comes from being broken. I know his father was broken. From the ‘laundry line’ story, my Granny was broken. I’m different than all of them only because I’m in a position to live this modern life, three generations in, and… pay for therapy. So, just like what I said about my mother and her side of the family, any sense of ‘mental health’ I have today comes from financial and positional privilege, neither of which my grandfather or my father had. My grandparents were first generation. Both lost their fathers at very young ages. Neither had gentle lives or stability. What kind of recipe was that?”
“Your dad still could have made the choice to do better. He could have been honest about his health, and he could have asked for help.”
“He did. He worked his way out of poverty. My father went to college, lived all around the country, had a white collar professional job, worked his way into Research and Development in the tech industry, earned a salary, supported a family, went to church on Saturday night, mowed the lawn on Sunday. He checked all the boxes for a ‘successful middle-class family man’ in the 1970s. He did better than his parents. His ‘doing better’ was changing the trajectory of his external life compared to that of his parents. Just like my mother, he fixed what family deficits he could address. I know I forget this… that my father did do better than his parents, and for all the things he couldn’t address, he reverted to type. Like I said about my mother, reverting to type is natural. We revert to our original settings under pressure.”
My wife sat quietly, processing.
“I guess… whether my father’s emotional dysregulation is a functional disorder resultant from own his parents’ abuse and neglect, or an organic condition from the Parkinson’s, or genetic inheritance, I want to believe it’s nothing he would have chosen.”
“Are you giving him an out, too?” my wife asks.
“As a kid, my father was my idol. I think I want to give him an out, because I love him. Even when I’m angry with him, I love him.”
On days four, five, and six my wife and I find ways to spend quiet time together and to relax, yet keeping “Grocery Friday” “holy.”
The first Sunday of my partial release, I’m back on schedule for dinner hours. The temporary caregiver doesn’t do Sundays.
I arrive at my parents house, as usual for dinnertime. I carry a few stray bags left undelivered from “Grocery Friday.” Once inside, my mother, in her recliner, turns toward me and says, “Hello! How are you?”
I’m shocked. In all the years I’ve done eldercare, from the “check in” stage to the “test run” stage, the part-time stage and the full-time stage, I don’t remember my mother asking how I am in earnest. “Okay,” I answer, not believing she’s actually asking me about myself, but rather offering a canned greeting and preemptive opening to ask me for something.
“Today wasn’t ‘Grocery Day’, was it? That’s Friday. Today’s Sunday, right?” my mother asks. “It looks like you went shopping again. You always bring such good things.” Her energy is “off” and I’m not sure whether I feel anxious or wary, but I do know that I feel uncomfortable. I furrow my brow and squint at her, not sure what’s happening. My father sits stiffly in his wheelchair, bolt upright, staring at the TV, ignoring me. I don’t have the will to care that he’s “erasing” me.
“Should we stay here or go in the kitchen?” my mother asks, pointing between herself and my father.
“I’m decision-fatigued. You do what you want, just stay out of my way while I do my chores,” I answer.
“We’ll stay here, right?” my mother responds, touching my father’s shoulder, looking at him for agreement. He gives her nothing. No attention. No response. He ignores her the same way he ignores me when he wants to punish me. I feel myself smirking at the thought of my father treating my mother the same way he treats me. “You can stonewall me all you want,” my mother tells him. “I know you hear me. Your father used to do this to your mother, and this is a bad thing you learned from him. You should unlearn that,” my mother gently reprimands my father, totally missing the irony of her scolding. I get it, though, and control myself from making any mention of the “silent treatments” I received from her. Directing herself back at me, she says “I want to tell you something.”
“Ohhh… Is that so?” I’m snide, “You pretended to greet me and greased me with a compliment, so you could go right into something about you? Is that it?” I feel convinced that my mother is going to make a demand while I’m already in the middle of handling jobs for her. This is her way, and two or three minutes of niceness is surely not enough to change her type or to make me trust her. I feel all of my earlier compassionate thoughts vanish.
“No, I just want to say… I remember. I do. I remember,” my mother touches my father’s shoulder again. “Do you hear me?” she asks him. “I remember the belt and beating you. I don’t remember the hair pulling, but my sisters did that to each other, me included. So, it’s probably true.” I allow my mother this little “catch” in her “confession.” She continues, “I remember drinking Holy Water, but I don’t remember drinking it after punishing you. I’m sorry. I’m sorry for all of it. None of it should have ever happened.”
I’m silent. My mother looks down at her hands resting in her lap. I don’t know what to do.
“Did you hear me?” she asks, her voice breaking as she breaks the silence.
“Wait, this all sounds good and nice, but… are you saying you’re sorry because your birthdays are coming, and you want me to celebrate, or because this is sincere remorse?”
“I’m sorry. You don’t have to get us anything for our birthdays. You don’t even have to do anything. You do enough already,” my mother offers. “It’s enough for your father and me to be in this house.”
I don’t know how to react or what to say. I’m flustered by my mother’s sudden self-awareness and out-of-character apology, acutely conscious that my father is not participating at all and hasn’t even looked in my direction since I arrived. I walk outside the house, stand on the front stoop, take a few breaths. Then, I walk back inside.
“How do you like the dinnertime caregiver, six days in?” I ask.
My mother sighs and says, “She’s not like you. She’s alright. You need a vacation. So, she’s alright. But, she’s not you. She doesn’t do everything you do. She doesn’t do things the way you do. She’s just here for the money.”
I laugh, pleased to hear this report, and pleased to hear that someone else isn’t kissing asses or pandering to my parents the way I do. My mother continues, “Every day she comes in and goes right to the kitchen. She digs through the refrigerator and the snack cabinet, and she eats. Yesterday, she came in and told us, ‘I’m hungry! Let’s eat!’ but she went to the kitchen by herself, and she ate until she was full. Then, she came out to help dad in the bathroom with his Depends, and she heated our dinners after that, but she took care of herself first. You always take care of us first, and you don’t take anything from us. So, she’s nothing like you.”
I’m satisfied hearing this. “So, you do see there’s a difference between me and some random stranger? That’s nice to hear.” It’s nice to hear this change in attitude toward me, even if fleeting. “I’m not cancelling her just because you’re telling me these things.”
“You don’t have to. She’s okay. She can stay. She’s just not you,” my mother laments.
“Maybe you’ll appreciate me for a hot minute if you have to suffer this additional agency caregiver for another week. Maybe, just maybe, this will be permanent, and you won’t see me except at bedtime,” I’m not sure how to process my newfound sense of power. I do notice that my father continues to behave as though neither my mother nor I exist. I wonder how much of this is behavior modeled for him by his father, behavior embraced as a coping mechanism into adulthood, and how much is Parkinson’s, which causes a consistent deficit in simple reaction time, whether physical movement, thought processing, or language response.
“I miss you,” my mother whispers. I say nothing in response. I don’t miss her, and I don’t miss my father. I won’t lie and say that I do. After all, it’s only been six days since my release from dinner hours. Though, in those moments when I see my father weak and fragile, my mother weary and heartfelt, I experience compassion for them, and sadness for all of us. I do love them, in my way. I know, whether I want to admit this or not—mixed with a sense of “Stockholm Syndrome”—there is an element of familial love for both of them that does keep me caregiving. Stockholm Syndrome, familial love, and a dash of filial law.
Even so, in the next week, I cancel my parents’ 88th birthday celebrations. I have no will to celebrate them, even as I’m mindful that any birthday could be their last, and that I will feel guilty for not celebrating them should they die between this one and the next. But, I’m also mindful that there needs to be a line between where they end and I begin, and if left to them, even in my mother’s newly voiced, light self-awareness, I don’t believe this will happen. It’s a shame only that it took me two years, four months, and mess of days, plus a breakdown to establish this, but my set-point for lunacy is high, and my tolerance for intolerable situations is also high, these… for better or worse… the effect of my original parent-installed settings.
(end of “Elder Caregiving: Day 856”)
Beautiful! I’m so glad to hear you have set some boundaries and given yourself the space to recover a bit! Good for you! Good for them too.