(cont.)
Epilogue: The Recovery.
It takes time for the in-home agency to find a dinnertime caregiver for us. The days between are quiet. My parents barely speak to me. I’m relieved by this. When my parents are alone, and I’m in a different room, they whisper, stopping when they think I’m near. I don’t warn my parents that someone new will take over for the next two weeks, Monday through Saturday. I want them to be caught off-guard, so they can’t make any preemptive attempts to prevent the change.
On the first day of my partial release, my wife and I go out for our usual “Grocery Friday” trip to the neighboring county. At the first store, while paying for our groceries, a familiar checkout person comes to say “Hello,” and another comes to talk with us about her cat, “Mr. Darcy,” who passed away. She shares pictures of her new furbaby, a Tuxedo named “Jasper”. A third familiar employee stops to ask how we are, and shares that he and his husband will soon take their first “good weather” weekend trip to the Poconos. I’m warmed by the happiness I feel in hearing all the good news from each of these people. On our way out of the store, we see a long-time friend with whom we’ve not been able to keep company for two years and four months, since the beginning of full-time eldercare. Our greetings are big. There are repeat hugs, Duchenne smiles, good-feeling laughs, and beautiful updates. We hear about his wife and kids, their newly built new house, and their expanding business. He invites us to join him and his family in a new AAPI group, letting us know there will be plenty of social gatherings throughout summer. When we decline, “caregiving, you know,” he extends the invitation again, “just in case.” My wife and I are buoyed by these contacts, too often feeling like we don’t belong anywhere anymore, and that no one notices we’re “gone”… since my parents, their needs and wants, have taken over our lives.
At the second store, a familiar woman who works in the meat department stops to ask about my mother and father. I quickly offer the “general report,” which is… “They’re both still alive,” and change the subject to that of her teenaged son. I also ask how she’s managing since her beloved dad’s recent sudden death. Another familiar in the store stops to say “Hello.” A woman in a hijab, riding in a scooter, waits patiently for all of us to disburse. When I notice her, I say, “Hello,” and “Ramadan Mubarak.” The woman looks surprised and asks, “How do you know?” as she eyes my bare legs and baggy cargo shorts. I ask, “You mean, how do I know you’re observing?” The woman nods, “Yes.” I point to her hijab, and say “I just assumed.” She asks if I know anything about Muslims, and I share that I went to school with many Muslims from many other countries. She nods, and we chat for a short while. Then, the woman asks, “Do you want my phone number?” It’s a little abrupt, and I’m taken aback “For?” I ask. “Just to know one more of us,” she smiles, reaching into her bag for an actual pen and pad, she writes her contact information, hands a slip of paper to me, and says “I’m Muslim, from Morocco. Have you met one of me before?” I laugh, and answer, “I’m not sure. I don’t remember.” She says “If you text me, I’ll have your number, and when there’s a celebration, you can come enjoy food with us.” The woman in the scooter beams, “It’s so nice that here… in America, all kinds of people can be friends, not just one religion to itself over here, and the other religions separate over there. It’s what I like most about being here.” We say our good-byes, and as I turn away I see an arm waving in the air. I look around to see if the arm is waving at someone else, and when i look back, I recognize a friend. She’s waving and walking toward me. She tells me I should wait for her where I am, that she has something for me. I’m confused, because there’s no way she knew my wife and I would be at the store, at that specific time. This friend rushes back to me carrying a strawberry shortcake. “I haven’t seen you in so long! I watched you walk in, and then lost you in the store. I bought this and asked the bakery to hold on to it until I found you again. How are you? How are your parents? Where have you been? What’s going on?” she rushes me with too many questions, and all I can do is laugh, because I can’t believe what an unimaginably amazing day it’s been. This second friend sighting is surreal. I’m over the moon, and feel like the universe might be punking me. Like, I’m having such a lovely time seeing people I enjoy, hearing about good things in their lives, that to “pay me back” for feeling happy about the visits, the Universe will drop kick me with a parent infection or a massive health issue requiring an ambulance and hospitalization. Still, this second friend sighting leaves me feeling the biggest kind of verklempt. As my wife and I are on our way home, I receive two texts. The first text is from the wife of the friend we saw at the first store. “He told me! He saw you! and I am so Jealous!” followed by five red hearts. I’m tickled. The second text is from the second friend, “It’s so good to see you. I’m glad we are friends.” And, I’m overcome at how full “my bucket” feels.
“See,” my wife says, “This is why we have to outlive your parents. We’ll have people to visit, places to go, and plenty of new things to do. We just have to outlive them. I’m going to do my damnedest. You have to be here, too.” I grab my wife’s seatbelt and tuck my hand between it and her belly, our alternative to “holding hands” while she drives. “I hear you,” I say, marveling at the blossoms on trees. “You know what’s wild? We’ve done this full-time stage of caregiving for two years and four months, right? And, I forget how pretty it is outside… because of how much time we spend inside for my parents. I can’t believe this will be our third spring.” My wife gives me side-eye, “I can,” and we ride the rest of the way in silence.
At home, I inform my wife, “I’m going right over to drop off groceries.”
“Sure you don’t want to wait until bedtime to head over?” she asks.
“Naw, I don’t want carry bags across the lawn in the dark. And, I want to see the looks on my parents’ faces when the caregiver arrives”
“Alrighty, then,” is all my wife says.
Following my normal “Grocery Friday” routine, I pack my car, head to my parents’ house, and am in the process of unloading when the agency’s new assignment arrives. My mother calls to me, “Hurry! There’s someone coming to the house, and you left the front door open! What will we do?” I ignore her, walk to the door and greet the new person as she enters. The looks on my parents’ faces are priceless. I give their helper a “world tour” with instructions on how to handle them in the event they’re difficult, and leave without saying “good-bye.”
Later that same evening, I head over to my parents’ house for the bedtime and overnight hours, for which I’m still responsible. When I enter, my father is alone in the living room. My mother is already in her room, which surprises me. I ask my father, “How was the new person?” As usual, he ignores me. “Let me try this again. How was the new person?”
From her bed on the other side of the house, I hear my mother yell, “She’s different.” My mother could hear a bug fart inside an anechoic chamber two hundred miles away. I walk through the house to see that my mother has handled her own Depends change, her own pajama change, her own tuck in, and has even put out her own clothing for the next day. I’m more shocked. “How so?” I ask.
“Well, she’s not you,” my mother offers.
“How about that,” I lob sarcasm.
“She didn’t do as much as you do, and we had to ASK her for things. She didn’t just KNOW… like you,” my mother laments, exasperated. I nod while she talks, restraining myself from making snide comments.
“I see you’ve handled yourself tonight.”
“Well, we didn’t know if you were coming back. I figured, might as well,” my mother sings the last part, throwing her little hands in the air, dropping them dramatically.
“So, you could do all this for yourself… all the time?” I ask.
“Of course,” she says.
“Then…,” trying to restrain my irritation, “why didn’t you do these things all the time? Why lead me to believe you needed help with this stuff since day one? Two years and four-fucking months?”
“Well,” my mother’s face changes, she puts on a “sheepish” expression. She’s a very good actress, but I often don’t have the energy or the awareness to deal with her. It’s par for me to dissociate when I’m with my mother, so I’d not questioned her complete helplessness. She’s also trained me from toddlerhood to serve her, so I wouldn’t necessarily be aware of the difference between need or want either. This, she takes to her advantage. “I like when you do everything for me,” she confesses. I resist the urge to walk out of the room, screaming. My counterfeit calm is hanging by a thread.
I ask my mother how my father behaved for the dinnertime aide. She informs me, “He had a poop first thing this morning, then an extra, extra, extra large poop this afternoon, and a large poop while the new lady was here.” It dawns on me, my father’s behavior of late could be exacerbated by constipation.
Not unlike an elderly person with encephalopathy from a UTI, my father behaves “off the wall”, with increased aggression, confusion, and irritability when constipated. The same way that Parkinson’s damages the brain, it damages the “second brain,” the digestive system. It affects the nerves in the spine and intestines, which causes reduced signals for digestion and motility. Adding to the scourge of Parkinson’s, the medication used to treat patients also causes constipation. Throw in decreased physical activity, a decreased sense for thirst experienced normally as people age, and Parkinson’s patients frequently refusing to drink water so they make fewer trips to the bathroom—where they can’t maneuver well—and you have a horrible recipe for stone-solid impactions. My father averages one day fraught with massive bowel movements every 14-days, even with daily doses of Miralax. He also takes prebiotics and probiotics. In addition, he takes “support” doses of Pericolace and Senekot chews, drinks prune juice. He uses a “colon-stimulating” precision bidet every time he’s on the toilet. I’d give him postbiotics, too, but he can’t have those because they’ll react with his Parkinson’s medications, leaving us with a potluck of surprise side-effects, from mental status changes to a completely board-straight stiff body that I can’t help him move. In every way, Parkinson’s is brutal. Aside from massive changes in the motor cortex, the basal ganglia, patients experience cell death in the thalamus and cerebellum. The consequences of these are special kinds of brutal in the constipation department. For the 4th of July, my father “celebrated” by having a bowel movement at midnight. It was so hard and huge… after fourteen days of not going… that the bowel movement clogged the toilet, not a one-off thing, but definitely one of the worst. After failing to move the clog myself, I spent at least an hour calling every large plumbing business in the area. Despite advertising “24-hour emergency services”, none would come to unclog the toilet. In desperation, I called small businesses, even those with strict daytime hours and no mention of “emergency services.” A gracious one-man independent plumber answered his phone and my call. After unclogging the toilet, making pretty intense comments about the consistency of my father’s massive turds, the plumber recommended that we keep a large bottle of Dawn dish liquid and an unraveled wire hanger in the bathroom, a “poop knife.” He directed me to “completely cover” any large “bowl filling” or “cement-like” bowel movements with the dish liquid, slicing them as much as possible with the hanger, so there might be a “fighting chance” of dispatching my father’s poos properly.
I note what my mother says about my father pooping during the new aide’s first day, on her first shift, chuckle, relieved that he went and happy I wasn’t on hand to clean him. Then, I change the subject. “Do you need anything?” I ask. “Nope,” she says. “I could use a hug, but it’s okay if you don’t want to give me one, your old mum.” I note the initial veil of selflessness paired perfectly with an element of guilt-trip, and give my mother a hug, holding her for a mental count of twenty-seconds, knowing this is about the amount of time it takes for a body to make oxytocin during contact. “I love you,” my mother whispers in my ear. I tell her, “I love you, too.” She asks, “Even when you’re mad at me?” I tell her, “It’s complicated, but sure.” Being upset with my mother, but still needing a mother, knowing this mother is my only mother and my only chance at having the mother-relationship I’ve always wanted, I’m more manipulable than I would be with anyone else. I am, however, starkly reminded of how selfish she is, and mindful that she would coat me in gravy and throw me to wolves if it meant getting what she wants when she wants it. I’m ever mindful of the memories from my childhood, in which she screamed, “When I say ‘Jump’, you say ‘How high’!”
Heading back through the house to my father, I announce, “Okay people! I’m here for evening chores and bedtime prep. You’re following my schedule from now on, so when I call you… you’re up. I’m not sitting around waiting for you to finish watching repeat episodes of “Perry Mason” on nostalgia network until after midnight anymore. If I say it’s time to use the bathroom and change into your pajamas, it’s not a request. It’s a direction. Hear me?”
My father ignores me, but my mother yells through the house, “I hear you!” I shake my head at this new comical development in her behavior and wonder how long it will last.
(To be continued…)