The Living Phase

The client wonders why I won’t leave him alone to smoke. When I explain I saw him trying to light his cigarette with his watch, he pauses.

“Did you know that?” I ask.

“No,” he says quietly. He sits in his recliner and blankly looks ahead.

“Are you upset?”

“If I thought about it, I would be.”

***

I learned project management in a certification class taught by a former homebuilder who embedded construction concepts in each lesson, but this is project management with unknown variables. It’s not as if you can lay the foundation and determine where in the process to put the windows. With cancer, there may not be enough time. The foundation might shift dramatically mid-project. The unruly infestation may devour the house from within before you even hire contractors. Team availability is likely to fluctuate according to mood, schedules, and degrees of ability to process resurfacing childhood traumas.

My dad, the client, is old and ornery, as stubborn as I’ll be when I get there. He insists on keeping his pill bottles on the floor in the living room. He refuses to let me move his car from the coveted handicapped spot even though he is no longer able to drive. I can explain the scope, pros and cons, and medical forecasts with a sophisticated layman’s translator. Yet he may not understand or want to hear it. We keep moving toward a goal without knowing how to accomplish it. Regardless of the project duration, dying at home from a terminal illness has steps, actual papers to be pushed here, decisions to be made there. The addition of household assistance. The subtraction of normal portion sizes. The overallocation. The incessant activity new moms describe. The guilt.

The only way I can transform the situation, imagine myself fully lifted out of it, is to lose the person I love. When he no longer needs my services, he will no longer be. I wonder what will happen when the power of my own vices exceeds my body’s ability to compensate. Still, I draft an anti-smoking public service announcement in my head:

Pan over the stop-smoking signs my sister and I posted throughout our childhood home. Fade to that high school gateway dream of mine—the one where I’m smoking while lounging in a reclining chair on a cloud. Jump to young social smoker-me getting a talking to from older lung cancer caregiver-me. The voiceover: “I understand the allure, my friend. Mandatory appointments to do mostly nothing. Daily moments dedicated to self, made possible by a distinctly meditative inhalation and exhalation. Instant gatherings of random partiers and mad conversationalists. I understand, but now I am watching and helping someone I love in his battle for air.” It could end with a no-smoking superhero version of me slapping every cigarette out of every mouth everywhere.

The project burden lifts substantially with the addition of more help — unexpected, actively engaged resources in the form of the steady ear, medical expense reimbursements, and animated visit of my typically “man of few words” brother and the regular trips to the doctor, the preparation of extreme comfort food, and the almost daily phone calls of my mother, my dad’s ex-wife. My husband, when he’s not working as a prep cook, and my mom alternate day shifts when I’m at work. My sister rallies when needed and starts calling regularly. It’s not a sibling caregiving competition, but she might have saved his life once when realizing during a phone call to his converted trailer in the East Texas piney woods that he urgently needed medical care.

My siblings check in, but coordinating his care is ultimately on me. After living in Boston, New York, New Jersey, Atlanta and Athens, Georgia (and ever so briefly London and Berlin), I’m back where I grew up, the local kid, the caregiver. I’m clearly my dad’s child — his life took him to California, Germany, Saudi Arabia and East Texas before he landed back where he spent his early married life: Irving, Texas, a place that I’m sure has more strip malls and car dealerships than most. Because of my family’s help, I can activate other parts of myself: event planner, paperwork compliance officer. The client gets more face time.

Then the system hobbles. The hospice team mishandles the most important documents and then hires a person who will do the hard personal care work but not the easier bits related to his everyday comfort—the only requests he has at this time. The nurse doesn’t log my dad’s complaints about a dullness in his brain and being in a daze sometimes, instead using the comments field to regularly note his use of the word “sweets.” No one is coordinating tasks in a way that makes sense. The original care plan set up for the home health aide involves only tasks that are not needed, frequently scheduled assistance he does not want. She arrives, checks the form and asks if she can do the items next to the check boxes, to which he again responds no, and she leaves, logging the visit. Her visits increase or decrease but they do not change. The form still has the wrong boxes checked. She follows the form. For hospice, it’s a few months early.

When contributors have limited availability or conflicting perspectives, I start harshly assessing their contributions to the project. Without intention, I start personalizing, seeing their apparent noncommitment through the lens of my overcommitment. The boss in my head says, “Dana, we value your work and dedication. We are concerned that you might be overstepping boundaries and affecting morale. Have you considered our employee assistance program?”

Four-year-old me would hear a sneeze, a cough, or any symptom at all and race out of the room to change into a nurse costume. I’d run back in to tend the sick whether they needed it or not.

***

His favorite doctor at the VA tells him checkups are now unnecessary. My dad expects more conversation. The helmet-haired doctor has an unexpectedly crisp demeanor and a cluttered desk.

I bring in a complex, multi-page form for in-home help that requires the doctor to fill out an assessment of his patient’s health and daily living skills. The doctor instead types a few notes on his computer and tells me he submitted the form electronically. When I question, he repeats the same words, saying my name slowly and smiling with finality. He refers me to a social worker in a nearby office who looks up the doctor’s notes in the database and says, “You have to trust me. If he filled out the paperwork, we’ll make sure it doesn’t conflict with hospice.” She says any forms he might have submitted will be canceled out if not needed. I sense her understanding in one moment as I can tell this doctor has done this before and she has had to placate his patients. This understanding turns to impatience, and I sense as I’m being led out that asking too many more questions could lead to a notation about me on his file.

At the beginning of the process, I was told that planning is essential, that hospice doesn’t provide twenty-four-hour coverage until the end but that my dad might need it before then. I don’t know how to balance his desire to perform his own tasks until the very moment he can’t with the supplemental programs that require advance planning, that require need before it exists.

As his condition progresses, hospice is surprised there is no plan in place to prepare for the inevitable worsening of his condition. “We were working on our plan B with the end-of-days nurse who was with us for two weeks.” Did I say that aloud?

In my inbox, I start to hear inflated buildups of my character from friends along with criticisms of this man from family members, old faults cycling around in others’ minds. I breathe in smoke in my dad’s apartment with love. My clothes carry the smell of the smoker’s den outside. I earn elevator scorn. A coworker sneezes upon my arrival. I scream at a customer service representative, the fourth who can’t tell me which filter to buy for my air purifier, “You have NO idea what is going on in my life and all I want is a replacement air filter!” I leave a wistful message on an air purifier hotline and never hear back.

After I call the emergency hospice line when symptoms temporarily worsen in ways they can’t assist, I put gas in the car while the engine is running. I am strong when necessary and weak in checkout lines. I embarrass my dad at the mini mart where he regularly buys Milwaukee’s Best and Marlboro Reds—the first time he does not feel up to walking in himself—when the clerk asks about him.

I load the car, get in the driver’s seat, and avoid turning my red face to the right.

My dad asks, “You didn’t cry, did you?”

“Yes.”

“Well,” he pauses for too long. “That’s OK.”

I lose interest in managing the project and start running after tasks. Despite all my experience, I become the baby daughter, feeling layers of loss in advance.

The first hospice head nurse, Ida, gets his personality, drinking, smoking and incessant, yet harmless flirting and speaks of a bygone era when talking about him. She says she’ll be with my “daddy until his last breaths” and will help my “daddy know when it’s time to go to Jesus.” She is gone a few weeks later. Then, the whirlwind begins. I can’t keep track of the nurses; there are few repeats. It feels like we’re always starting over and that it’s just a never-ending sea of clipboard-toting scrubs.

The nurse changes again. Three nurses in one month, this one training the replacement of the temp hospice nurse. This isn’t even a temp nurse assigned to our case. This is a sub. I’m not that clear on the difference other than it sounds like a temp-temp. I liked her in the beginning, but later she waded through ten minutes of “not the job of hospice, not diagnostic, not not not” like a project manager avoiding scope creep to finally, after a great deal of prompting, fix a problem he is having.

I can tell the hospice office gossip mill is cooking with bits of my personality exaggerated into nuggets that prove bullet points and steer nonsensical care for my dad. My know-it-all emerges, an acronym-spewing researcher who calls too often.

The system totally breaks down. For my dad, routines are unpredictable and too many people are performing too few tasks while jeopardizing his coffee break with his ladies. For me, there’s regret for falling for the honey-comfort brochure and for failing at the essential parts of caregiving. For hospice, the family complains on endless loop, unaware of the scheduling mayhem of nearer-death patients and a heavy cigarette smoker’s house.

I move in with my dad. I seek Internet solace via an “unhappy with hospice” search string and I find my comrades. I spend an evening with internal rage and a microbrew six pack from the same mini mart—bottom lip protruding with the pout I inherited from him—and finally emerge defiant: It is an honor to be with someone when he dies. Pause. Bottom lip protrudes farther still. It is an honor.

I decide to interview the next nurse as if she’s applying for the highest-level job out there. Just as she steps into the apartment hallway, I find out she’s a full-time worker assigned temporarily to the case. I corner her, “How many nurses are we going to meet?” Before even letting her in the living room, I tell her the honor bit, I tell her of inefficiencies and frustrations not addressed and the additional people sent out anyway.

Somehow, my agitation and exhaustion push through without alienating. She hears me. She speaks to me about spreadsheets and reassigning tasks to a varied team and organization and a vacation. When I finally find a nurturing, knowledgeable nurse on one side and a project manager and diplomat on the other—coordinating schedules effectively, hearing what the family says and doesn’t say, interspersing humor into mundane medical discussions, understanding the love of one man for one toxin, guiding him all the way to the final sigh—I realize it immediately. I discuss the confusing present and then the probable middle area, the moment before hospice fully steps in but when my dad might need just about everything I don’t yet know how to provide. The area I fear. The area my dad won’t acknowledge. “Dying at home is awesome,” she says.

The dying-at-home bit in obituaries often involves a factory of individuals, paid and unpaid, hopefully well-coordinated, gentle, informed, but a village of death workers hovering over the body’s changes and performing the custom quilting of symptom management. Dying at home of old age always sounds good; dying in my sleep or during something else I love, excellent. But dying at home at the end of a long or long-enough illness, it’s work.

“I’ll never let you down,” this blonde Southern firecracker says to him in the living room, where he falls into what is clearly nurse love. “When you get to that point where you can’t smoke”—he stiffens, sad beyond any talk of death, dwelling on the words “can’t smoke.” I see the circling slow motion of his worst horror—“I’ll slap a nicotine patch on your butt.” I realize that one of his greatest loves is probably his current cigarette, and this nurse will break his heart gently.

I step back, although there is still much to do, continually and progressively. The badass has arrived. And she’s staying through the end times. I think.

* * *

I continue to work as an editor for a large nonprofit close to full-time, commuting from my new home at his apartment and coordinating coverage like the working mom I’ll never be.

On dumpster and grocery runs, I fight my way through the gauntlet of prying seniors in the low-income, independent-living building in a Dallas suburb near me where he had moved after he lost everything in an electrical fire less than two years ago. He had lived in a tiny home in the rural East Texas woods that he and my stepmother renovated as a second home. Post-divorce, he named it “My Way Acres” after he moved there full time. Now, he lives in a small one-bedroom apartment with basic furniture — all donated — and an unloved Monet in the living room.

People say anything.

In the hallway: “You know my dad died of lung cancer. My mom died the next month. Is your dad OK? Is he going to die? Is he right with the Lord because,” he shudders, letting me interrupt him. The next time, “You know my dad died of lung cancer . . . .”

Another, at coffee: “I used to take my mom to the doctor and there was this nurse who wore her hair in a bun just so.”

“Really? It’s nice that you remember that level of detail—”

“And one day, I grabbed scissors off the counter and just cut the bun off.”

In the laundry room: “How did you get into editing? Do you need college for that? Are you a writer?” Slowly, and blushing, “Do you write romance novels?”

This is no sitcom. My dad’s real friends are there, too, all around, most beautiful and full of quirks that landed them together, watching their neighbors die off, maybe one a month. My dad is popular, and emotions are raw.

Residents speak at once at lunch in the dining room, with two streams of confidences intersecting, impossible to follow. A blaring bad health story dominates over a quiet mom-death story. An upcoming vacation story loses to a repeated story about the best fried chicken in town.

The morning routine consists of dismantling the air mattress, checking med schedules, promoting mac and cheese or Ensure, putting on generic office attire, taking the one working elevator straight to the lobby—how is he today, we love him, I didn’t love him at first, you know how he is, but now I can’t imagine, how sick is he, is he eating, is he coming to coffee today, he didn’t come yesterday—to open the downstairs door for my husband or the extreme comfort food maker/the first ex-wife/Mom.

People I’ve dated haven’t always understood my dad’s stubbornness, boisterous personality and near-constant ribbing and storytelling — with one even flipping him off behind his back. But my husband met my dad at a Southern breakfast chain with rocking chairs on the porch and probable gingham-clad bunny figurines in the gift shop, and they were laughing and play sparring with each other by the end of the first meeting. Now, my husband sits with him when I’m at work and watches sports and western TV shows. Apparently, even though my dad is very fond of him and well known for being a talker, and even though my husband, who formerly worked in the music business, can share stories of the many concerts he has seen in sometimes excruciatingly vivid detail, they are not talking much during these visits.

During one trip to the doctor, my dad tells my husband that he does not want treatment, calling it voodoo. I believe my dad is also carrying on the tradition started by his mother, who refused treatment for gallbladder cancer. My husband says, “Well, that voodoo saved my mother’s life.” His mom is in remission from lung cancer, and he lived with her a few years ago during her treatment.

My mom is a retired executive secretary and an excellent cook now, but she could only make tuna salad with tomato when they married in 1961. She soon learned how to make his favorite foods and she is making them now: spaghetti, lasagna, chili, mac and cheese, chicken and dumplings, and banana pudding. She refuses to discuss the previous acrimony, long gone anyway, speaking instead of bringing us home from the hospital, maybe of that Howard Johnson’s baby poop-all-around disaster, maybe of the first house that was better than the second house, maybe of his plastic invention designed to protect kitchens from cake batter splayed by overzealous beaters. For each of her shifts, she walks down a winding path to the apartment lobby to meet me, picnic basket with my breakfast and packed lunch in hand. And upon returning, I hear their laughter before my key even turns the lock.

***

When my dad reaches the point I most feared, a nurse teaches me how to retain privacy. Another says nonchalantly, “It’s just the body.”

It is.

***

Now that the team is in place and working well together, I understand the benefit of bringing in hospice before the dying phase. During the living phase, that’s when they learn about a person’s contradictions and kinks. How their patient tells inappropriate jokes that work well on occasion. Now I feel the fluffy cotton embrace of hospice, the soul comfort of the deepest corner, the specialists coming in near death, the hands of an artist to bring the patient’s handsomeness out, to nurture his spirit as well as his health, the near-death army that mobilizes and validates.

When treatment is not in the plan, neither is diagnostics. The oncologist said cancer spreads willy-nilly in the bloodstream, much like a dandelion. The cancer starts spreading, but my dad has a high tolerance for pain. He continues to smoke. “He tried to light his cigarette with his watch,” I tell my husband, who responds, “sounds like a Dalí painting.” I laugh but watch ever closer. I stop relaxing.

I now need home care reinforcements, but it is too late. I know not to go to the grocery store when hungry. Home health shopping is equally disastrous with one care coordinator in a snit over me not signing up with her company after she made the effort to travel to us, and implying, in a lower-income neighborhood at that. Putting her clipboard away and ditching the practiced smile, she says most people just sign up over the phone and fax the necessary forms for health care and electronic payment for patients who can no longer make their own decisions. I wonder if parents ever fax-coordinate their first babysitter.

I discover that one-sided conversations are still conversations and that the client can return after days of fogginess. I become a pressure sore preventer, a cigarette dispenser, a messenger, an ice chip sculptor, a confidante. We hold hands every evening while watching reruns of reruns we saw the night before. He is on some medication but not a lot. He has limited experience with pain meds, so they move quickly into his frail being. He is lucid when the illness lets him, which isn’t every day, but many days. He has one strong day where his comic timing surpasses those around him. He is smoking, drinking, visiting—something a good friend said was his life.

Over and over that month I think, dying at home is awesome.

And then he starts dying.

My stress and constant coordination suddenly seem to my dad to be pacing. Checking e-mail: pacing. Doing laundry: pacing. Managing care: pacing. He sees an energy in me and in others and says he’s not sure how to say this, but “I want to be free with what I have.”

“But I like doing laundry,” I respond, which changes his perspective. Still, I force myself to appear relaxed when doing menial tasks. I instruct the team to hide stress from him. I also let them know what I heard from the hospice social worker: questions stress him out and make sure to keep conversations short.

I almost admit him into a hospice unit out of my own exhaustion, not sure if it would be what they call respite care or what I call giving up. I wish the client wasn’t so on trend, hoping like most of his hospice compatriots to make it to Christmas and clogging up the care channels in the process. Hospice in mid-December bustles like the season’s busiest retailers. We are waiting in line for their care like everyone else.

Even getting him to the bathroom is a challenge. My dad is around 6’4” and lanky, 138 pounds as of recently, and we must walk him to the bathroom, which is very difficult because he is weak and somehow strong at the same time — like a determined 78-year-old person learning how to walk on stilts. One time, it takes three of us to get him to the bathroom safely. Another time, my husband and I need to hold him upright and he pulls down his pants and starts spraying half of the bathroom with his pee like an erratic gardener trying to get every last patch of grass with a garden hose. I helplessly look at my husband who smiles at me. In a relationship that is six years old this month and already full of what I think of as an obnoxiously ever-expanding love I do not typically publicize, that smile brings humor and comfort to a situation I couldn’t believe was possible. In that moment, I store the look and the smile in my memory like a wedding day snapshot.

Around that time, we watch an episode of a sitcom that was only in reruns. It was a flashback episode to the funny couple’s wedding with vows full of romantic notions, sweetness, and humor. After they finished their vows, my dad looks at me sweetly and says, “Is that us?” I have to let him down gently, explaining that that couple was getting married, and we were not. The cancer has clearly traveled to the brain.

I wish old-school punk rockers had composed a two-minute cruncher for “terminal agitation,” an actual stage of extreme discontent for some near-death patients. Poet and author Eve Joseph described something like it as the near dead being on a test flight, “as if they were working hard to figure out how to leave the body.” I want an angry, visceral gut-blow soundtrack to this stage when nothing I do will make him comfortable. He is up, he is down, he is too weak. He walks anyway. I think he’s asleep and I can finally doze for twenty minutes (I set my alarm even), and I open my eyes to a skeletal being back in his reclining chair, smoking an unsupervised cigarette or spooning out of a gallon ice cream container. My dad momentarily stops trusting and accuses me of using “shenanigans” to keep him “in line.”

I argue. I tell him my own health issue, I tell him everything is for him, that he is not being kept in line, that everything is as I thought he wanted. I raise my voice for the first time since he insisted on driving the day after cataract surgery. We are both distraught. He apologizes slowly and deeply; I apologize with worry. I hold his hand and say, “This is the most important job I’ve ever had, being here with you.” He says, “This is the most important job I’ve ever had, being here with you.” We start holding hands again.

* * *

The oncologist had said softly, “You don’t want treatment. You want us to make you comfortable, right?” Granted, she ordered hospice treatment. She heard him say that he didn’t want radiation, chemo, surgery, or to quit smoking. But she is not here, twenty-four hours a day—and neither is hospice—making him comfortable. Instead, it’s the editor, the prep cook, and the retired executive secretary who must sort through it all. Is it pain he can rarely articulate? Is it shortness of breath? Is it dry nose? Is it anxiety? Is it all the organs shutting down in a synchronized swim? We cling to the makeshift caregiving flowchart and spreadsheet, pushing this drug and that, documenting this reaction and that. Hospice provided a home pharmacy full of opioids that would make addicts and a few friends with monstrous back pain sing, but he is not yet comfortable. Not in this phase.

* * *

My dad is now in a semi-coma, his restless body coerced with morphine and miscellany. One of the nurses said he is the most restless patient she has ever seen.

His tough-guy stance and determination to truly experience the last few moments with us may have allowed the pain to finally throttle him, landing him “behind the pain” as it is sometimes described. Delicate wording for horrific chaos. Maybe twenty, maybe twenty-four hours we shared, a blur, private, personal, unimaginable, worse. My increasingly hysterical calls to hospice lead to the elusive home health service called “continuous care,” the hospice wand of benevolence that allows caregivers to sleep.

With the hospital bed and day nurse in place and the night nurse on his way, I leave. Delegating reluctantly, I attempt to have my presence linger in the apartment. I request, or possibly even demand, that the nurse on duty have the night nurse text me when he arrives, which he does. I set my alarm so I can contact him in the middle of the night. When he doesn’t respond, I go back to sleep, certain he prioritized his patient over his cell phone. When I call the home phone later, the nurse answers and seems distracted. He says the extremely restless patient has been keeping him busy. When I stop by a few hours later, the apartment door is wide open, like a hospital room.

I head to work, leaving the day nurse and my husband with my dad who was, apparently, not kept on his medicine schedule the night before. When I return, I start making the evening’s status report phone calls to the stakeholders: his friends and family. Coma, semi-coma, I’m not sure. He can hear, I think. They say hearing is the last to go. He loves you, too. Repeat to the next caller, listen to their feelings, try to soothe.

I walk back in the room and look at my dad for a moment. Soft-faced, sleeping, next to his recliner and droning TV—the TV I threatened to turn to a rival political channel if he didn’t work out arrangements for this very moment. He stopped caring about politics in the last month anyway. He was all nostalgia TV all the way.

Then I look at his night caregiver, a licensed vocational nurse, who arrived about an hour ago. He is on the couch, soft-faced and sleeping, possibly better than my dad.

For months, I have trained for this moment. The only way I know how to act is strategically. I slowly inch my face closer to the nurse’s—in disbelief with each increment—landing on a contact ratio normally reserved for kissing. I see his slow breathing close-up, his eyes undeniably shut, demonstrating a sleep I haven’t had in months.

I know from a recent phone call the daily RN visit would happen at any moment. So, I let the nurse sleep. I make sure to avoid sudden noises, anticipating the supervising nurse’s intercom call that will trigger the home phone ringer. I meet her halfway while she is shutting the reverberating hallway door. “Shhh, he is sleeping.”

“Oh right,” she whispers. “Sorry.”

“No, not him. YOUR FUCKING LVN!” I hiss.

She sneaks from the entrance to the couch, her eyes widening with each step. She calls his name several times to rouse him. Finally, he’s awake, really awake.

He wants my forgiveness immediately. Instead, I give a speech a victim’s family might give in court. By all accounts, my dad had had a rough evening with this same nurse. Pulled out his catheter. Was restless beyond restless the next morning. This was the only time I had slept in weeks, and it turns out, the nurse was, more than likely, sleeping right with me.

***

My dad is in a semi-coma when I tell his best friend that he is dying. The friend wants to talk to him, and I put him on speaker so I could make sure my dad could hear him. In general, the room is full of sweetness — everyone wants him to know he is important to them. He is still during these love proclamations. His friend, invoking their playful banter, starts the call by tauntingly calling him an “old goat” and my dad tries to sit up and starts coma-gibberish-yelling to get in the last word. The female nurse gasps as if he had come back to life. She is unable to relax after that. From what we understood, she was our regular day nurse, and my husband and I are especially attached to this one, a great conversationalist who is also kind, but she never comes back.

***

The day begins with the new night nurse telling the new morning-relief nurse about their patient. He has had this medicine and that, this is his condition and where he is at the moment, but more importantly, he was an accountant and later a limo driver in retirement, he has three kids, he wrote more than 100 poems and a hymn.

The brochures say to keep the room quiet. She blazes in with a hard face, a loud, raspy voice and baby talk, reminding me of the man who ordered too many double espressos when I worked at a café. She does not care about the most important part: who he was and is. She cares about the bath.

Although most had moved to comfort sponging, she keeps trudging the pink kidney-shaped hospital basin from the bathroom to the bed and back, rubbing my dad down and turning him, hard. A nurse later said my husband’s description sounded like someone bathing a pig.

I try to get her to calm down a few times, once explaining that we have a mellow household.

“That’s funny,” she says. “I was thinking you were the one with the problems.” Then she adds, laughing, “C’mon, give me a hug.”

I ask her to stop the bath and I wait until I’m alone with him to get right in his ear. “Hang on, Dad. We’ll get this worked out.”

I call the hospice company to send another nurse and I fire this one, vaguely threatening a lawsuit. While waiting for backup, I contact the owner of the outsourced agency, making one small effort to control the future, to stop bad nurses from bulldozing the most sacred of moments. The firecracker, who has continued to manage the case and visit throughout, is now fully aware of our personnel issues. She tells me over the phone that she threatened the hospice agency with quitting if they didn’t change the outsourced agency they have been using for LVNs. She works to shift professionals into a new configuration.

The client died that evening. He had one nurse in between, a male LVN, a really good one, a tall, graceful man with a long ponytail of dark hair, who, forming a client-soothing team with my husband, erased so much of what went on before. Then his last nurse came in. This vintage-wearing, soft-voiced lovely took one look at his toenail, an abstract stair step of a thing, and said lyrically, “That looks like a toenail that could talk to you.” He died at peace.

The next day, he was approved for supplemental assistance from the state.

* * *

Post-project analysis can be harsh. Despite others’ beliefs that if any conscience should be clear, it should be mine, they do not live in my brain with the residue of the sleeping nurse. Should I have researched the hospice company instead of just going with what the doctor suggested? I don’t remember additional options being discussed. Should they have been?

Did I protect my dad from the cloudiest sedation until near the end, allowing him to live fully as he seemed to want, or am I responsible for the horrors of his last conscious twenty-four hours?

Why for the full house memorial service in his apartment building’s lobby that even included the guys from the mini mart did I hire a runaway minister who went way off the script I had envisioned? My dad wanted the warm, funny hospice chaplain to do the service but mistimed his death to occur when the chaplain was on vacation. Granted, this new minister came recommended by the residents, he led the Bible study in the building, and he knew my dad.

After beginning with a relatively routine service, he then proceeds to speed read through the hospice chaplain’s tenderly humorous written passage I had requested in advance. He awkwardly persists on droning through his generic sermon even when an ambulance shows up and blue glove–wearing EMTs wheel off a resident on a stretcher to the right of all the mourners. After peppering his sermon with references to Hell, he ventures into tent revival territory by launching into a parable about an attempted suicide by hanging. Right then, right when the fictional person is about to kick the chair away and stops himself, no doubt embraced by God’s love with the spirit of Jesus filling his heart, right then, I say, “We need to change this up a little bit. Can we talk about my dad now?”

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Thank you for reading. This essay originally appeared on my Substack. If this piece resonated with you, please feel free to share your thoughts about the essay or your own caregiving experiences below.