When the Struggle Ends

HOSPICE ISN’T A FUN WORD. We don’t say it with joy but with relief. It’s the final euphemism in a long line of them. It’s not death, it’s “comfort care.” It’s not terminal, it’s “end-of-life.” They don’t say your parent is dying, they say “we’ll keep them comfortable.” Comfortable? They’re being slowly evicted from their own body and we’re putting on Enya and pretending that’s enough?

But you sign the paperwork, you nod at the nurse, and you realize you’ve just become the concierge to your parent’s slow-motion expiration. Congratulations. You’re the doorman to the Great Beyond. Tip not required.

THE UNEXPECTED TRIP. Timing is everything and sometimes my timing is ridiculously on point. As the summer unfolded, I decided I had the time to spend an extra few days in Wichita with my family, head back to Chicago, relax over the July 4th weekend, then get back to it. Don’t get too attached to your plans because life is chaos and the universe loves to fuck with you, amiright?

As the son who comes in from 700 miles away every two months or so, I have been gifted with a bit of familial objectivity—not in the day-to-day thick of things, I’m afforded a remove that allows me to see things from a more pragmatic angle. What I saw when I hit the shores of Oz was not good.

My dad has been sick for nearly fifteen years and on thrice-weekly dialysis for his dead and buried kidneys for almost six of them. Back in 2022, following THE divorce, I came and saw my mother, the sole caregiver for him, in a zombie mode. Like she had the cancer and failing body herself and had resigned herself to never living any existence but that of a nurse without reprieve. She and I pulled on each other to get both out of the quicksand of despair and self pity that we were in and did so successfully. We both found new leases on the lives that we could have if we chose.

But dialysis is merely an archaic torture that acts as a bandaid on the body and, eventually, loses its effectiveness in tiny increments. My dad was in dire shape. Mom was fighting for something more than being the only one in their home who could mow the lawn, carry the groceries, pay the bills, plus cook the meals, categorize the encyclopedia entry of medicines, and she was losing again. It’s one thing to be caregiver to a sick human. It’s a completely different beast when that sick human is with you 24 hours a day and seems to be signed on to be sick until you’re all used up. My dad could barely stand up on his own and the non-stop moans of pain throughout the night were like something out of a Blumhouse movie.

In a matter of two months since my last visit, things had turned incredibly grim.

Mom and I talked. Dad and I talked. Both were really, really angry and scared. They were in a place where neither could see the other’s pain and were both entrenched in survival like drowning people clambering frantically for one more breath of air as if the act of continuing would somehow make things better.

My dad told me in long conversations about the horrors of the dialysis place he went to, referencing men with no legs left who needed to be hoisted up by a mini-crane and sling just to have their blood siphoned out, cleaned of poison, and pumped back into them. He confided in me that once he could get the process and have a few days of respite but that in the last months, he couldn’t get more than 5% better after the four hours of a procedure that felt like 1950’s technology in a time when a gall bladder can be taken out with a laser. He knew he was dying but was entrenched in a pattern that had existed for him for years.

He had begun losing himself and had become verbally abusive to the only person there to help him. He had stopped taking his medication because he had it in his head that mom was poisoning him without realizing that the poison was that which had not been extracted during dialysis. Mom was angry and struggling to remain in place but could find no capacity for comfort because the pain he was in had become a hole that defied any attempt to be filled even momentarily. She looked almost as worn and unhappy as he.

Something had to change or I would be losing two parents to one series of diseases.

Hospice doesn’t come into play until all the scalpels have been thrown, all the dialysis drip bags emptied, and the insurance companies have finished squeezing blood from the bank account. It arrives like an exhausted relief pitcher in the ninth inning, just here to make sure the game ends without more damage.

He had so far resisted any discussion of hospice or new treatment. Any suggestion from my mom that she bring in someone who could help was met with rage and denial. He refused outright any hospitals and didn’t like his doctors because they had suggested alternatives he wasn’t going to consider. He had become increasingly erratic and mom asked if I wouldn’t mind being present if she invited a hospice nurse to look him over and make some recommendations. There were a range of options available before signing up for the keep him comfortable as he seeps out of this plane of existence plan. Of course, I was staying.

JUST THE FACTS, MA’AM. The nurse came and I met her at the car. I briefed her on the situation and asked two things: that he believed that her coming was entirely my doing (because if he refused anything, he would blame my mother for the blindside) and that she understood I would not be driving back Chicago unless there was agreement to a significant change. What they had been doing for the past coupla years was no longer working for either of them. I couldn’t conceive of returning home without some guarantee of better.

She was amazing. Quickly assessing who my dad was, she stuck to the absolute facts of his physical state and his options. She asked all the right questions and during the interview, he said something he had never said out loud to anyone. “If I had a button to press and all of this would end, I’d press that button.”

He opened up to her and confessed that he had no goals for any moment aside from feeling better. She explained that feeling better under the current conditions was no longer an option. He couldn’t see, hear, walk, cook, drive, work in the garage. He could barely walk the fifteen feet to the kitchen without being so out of breath he sounded like a broken 1942 pickup truck desperately trying to start . He just needed to see that he was grasping a rope that was running out of length.

After an hour of questions from him, highly specific (as my dad doesn’t just want to know how to do things, he wants to exactly how they work), he made a decision. Less a decision than a resignation. He elected to cease dialysis and die at home. He was done with this shit and if this was the closest thing to that button, it’d have to do.

As I walked her to her car, I looked her in the eye and told her “You may have just saved my mother’s life. Thank you.”

STRANGELY MUNDANE. After another visit from another hospice nurse, he elected to discontinue not only his dialysis but all of the cornucopia of medicines he’d been taking. He still had pain meds if he wanted them but everything else was off the table. She warned us in coded hospice language that without any medication, he might get aggressive and say things he didn’t mean. That the decline could be pretty fast but he might last a month in the downward spiral. I knew it was meant to be comforting but it was not.

I asked her what her interpretation was in his choice to drop all medication.

“It feels as if his soul is ready to leave his body,” she said.

He slept a lot which was normal. He had breakfast. He slept some more. Mom went to get a haircut. When she got back, I took a long walk in the 90˚ heat in the Riverside neighborhood. I went by the house on Litchfield when I first met him. I walked over to the house on Faulkner that they lived for twenty years and stood and smoked in front of the two-car garage he built on to the property despite the consternation of the neighbors. This area was where he was in control of his destiny and his health. It was the place for decades he and my mother were partners rather than a vicious codependency required due to a failing body.

The wash of memories was striking. We all live lives of purpose until we don’t. That’s the way of things.

The first day was great. He was in a good mood and had lots he wanted to talk to me about. When he was nine and would cull together a dime to go swim in the local pool. His thoughts on the economy. The machinations of real estate law and shifty practices that he felt Trump had truly elevated to an evil art form. It felt like he was suddenly better and maybe we just needed him off the torture machine to revive him. I knew better but sometimes hope is a Hail Mary that is doomed to fail yet you still think it just might work.

My sister and niece had planned for ages a summer trip to Los Angeles and I knew she needed to go. With my nephew passing during COVID, she’d had her share of death and I was here to carry the weight. We both were on the precipice of guilt—her for leaving to whale watch and me for the nagging feeling that I was the catalyst for his decision/resignation to shuffle off. That night, after dinner, she and my niece headed home and told him they’s see him when they got back.

“I hope not,” I thought. If he is still pumping in a week, it’s going to be a Stephen King short story around here.

This home hospice thing? It’s not a decision you make. It’s a decision that hunts you down, throws a bag over your head, and drags you into a world where doing everything becomes doing nothing. And doing nothing becomes the most sacred thing you’ve ever done.

Here’s the cruel little mind trick: you start grieving while they’re still alive. They’re still here—but not here here. You talk to them and they don’t respond, or they do, but you can see they don’t know quite where they are, or they think you’re a nurse, or worse, they think you’re their parent and ask you not to leave them in the dark.

So you start burying him in stages.

You bury the version of him who once met Minnesota Fats.

Then the one who loved Christmas Vacation and thought you were Cousin Eddie.

Then the one who told you he was proud of you even though you knew he didn’t understand that fucking weird theatrical DADA show he flew to Chicago to see.

You bury the laugh. The wise, but gruff, advice. The dumb, off-color, sometimes racist jokes he used to tell.

By the time the actual death comes, you’ve already held a dozen funerals in your heart. And you wonder if that makes you broken. Or just human with a working sense of reality.

PEARLS. For the first days, he was ready to talk. A lot.

Wendy had arrived and, of course, she and mom were talking. He motions to go to the porch four a smoke.

“Donnie. Here’s something you don’t know,” he intones in his gravelly baritone. “Women have a certain number of words they have to say every day. The secret is letting them say enough that they feel satisfied but not so much that it makes you want to shoot yourself in the head.”

Later, out of nowhere.

“Most new things aren’t new. They’re just faster. Does faster make it better? Who knows?”

At one point, he wanted my opinion of my niece’s boyfriend. I told him I thought the guy was a solid match for her and a genuine ace.

“Well, unless it’s a woman, you are a pretty good judge of character.”

WATCHING TIME SLIP. On the second day, I wake up from a fitful sleep on the couch—the couch so I’m closer to his room and can hear him if he’s in distress—and there is a street crew tearing up the street the house is on to fix the gas lines, I suppose. A rolling jackhammer crushes and breaks up the road in sections and my mind can’t help to see that my dad, as he moans and talks in his sleep, has a crew doing the same to his mind.

Here’s another metaphor to chew on—this experience is like a rollercoaster you didn’t sign up for. His first few days he was better and more lucid than I’d seen him in years.

Click. Click. Click.

The rollercoaster ascends slowly, upward.

Then the car stops for a moment, in stasis, and the heart pounds knowing what is about come.

Click.

Then the plunge straight down, gravity taking over. When he hit that point, it was fast. Bedridden and the non-stop moans, outcries, and conversations with only those phantoms in his brain. Hourly morphine drips to ease his breathing. Lorazepam for his anxiety every four hours. Oxy every six. The decline is so immediate, it was disorienting. The schedule of medications to ease his pain was the only crash bar to hold onto. An absolute horror.

Metaphor number three. This rapid fall came on the Fourth of July. As I sat on the porch smoking a cigarette, the sounds of idiots around Wichita blowing things up felt slightly like a war zone. I couldn’t escape the thought that this chaotic explosion-fest was exactly what was going on in my father’s mind and body. The poison from his inert kidneys seeping into every cell and his mind blowing holes in the fabric of his memories like Roman Candles shooting through tissue.

Mom’s friend Wendy drove down from Denver. A calming presence in any room, my dad was really fond of her and she had been through this with her own mother. Like a shaman from the North, she knew how the drugs worked for my dad and knew how to keep my mom from spinning out. The three of us tag-teaming with dad—meds, talking to him, checking on him throughout the night—was suddenly precise. As soon as the spiral started, he was less out of bed and more incapacitated. When he slept (which was most of the time) he moaned and muttered to himself, clutching his chest sometimes or holding his head in his hands.

Karl Ove Knausgård wrote “Life is always about to end. One day it will. Before that, it’s just loss in installments.”

The capital “T” truth of that is not as awful as it sounds. In order to lose something, you had to have had it in the first place. We enter the world with nothing, we leave it exactly the same way. As life ensues, we gain strength and we eventually lose that strength. We gain accomplishments and our minds let the memory of them evaporate. We gather and nurture the people in our lives only to see them pass away into an unknown universal soul train. We gain and we live to see those gains disappear. That doesn’t mean we shouldn’t do everything to live fully with everything that entails but we shouldn’t deceive ourselves into thinking any of it will last.

THE QUESTION THAT HAUNTS OR MOTIVATES. When the hospice nurse was talking to dad, she asked him what it was he looked forward to and what, if any, plans he had in mind for his future.

“I dunno. Just to feel better tomorrow than I do today.”

I thought to myself that that was a paltry dream, a small ask in the face of an absolute zero chance of possibility. The days of feeling better for him were over and now the best he could rely upon was feeling less shitty. I also recognized that I, in my dog-paddling existence, might not answer much differently if the question were posed to me.

This is the lesson that sticks in this moment. Envision a future or go off in a blaze of glory. As Andy Dufresne said “Get busy living or get busy dying.” If there is a secondary teachable moment it is that I will never put anyone in the position my mom and I are in today. I will take myself out rather than put a loved one through this hellscape.

In the meantime, it’s time to move in a definite direction rather than hamster-wheeling until I croak.

ENDGAME. The night of the Fourth was rough. Fully medicated, he wasn’t in pain but he was fitful and anxious. His mind vacillated between knowing what was happening and not knowing where he was. Mom sat with him, I sat with him, Wendy sat with him. I called the hospice nurse to come out and suggest something—anything—that could help. He was prompt and kind but the best he could offer was permission to give him an extra pill for the anxiety.

We were up all night. The 5th of July, he was pretty much glued to the bed. Wendy split for a while to go visit her father and Mom and I hung out, gave him the pain meds when the timing was right. Around 11am, he started yelling in his sleep. Remember the scene in 12 Monkeys when Bruce Willis meets Brad Pitt in the asylum and they are surrounded by the ravings of lunatics? That’s what it was like except there was only one nutjob and he was someone we loved. For three hours this went on in spurts and fits. Then I heard a thud.

He had somehow thrown himself off the bed against the wall. I tried to get him up. He grabbed my hand but his eyes were vacant. I gently let him down to move his legs to get him out of the tangle. He took one last gasp and died.

Hospice came. The mortuary folks came. They took his now empty shell.

And that was it.

Everyone said it could go on for two weeks to a month. He was done and out of the building in less than four days.

RECONCILING THAT WHICH RESISTS. I’m having a bit of difficulty finding a way to live with the images of my father from years ago, my father talking for the few days of the rollercoaster uptick, and the image of his waxy body on the floor. I have a feeling that this image of his lifeless shell will last for a very long time. On the one hand, it is reminder that death is right there and I really would rather no one I love ever see me in that state. On the other, it is a sad lasting view of this man I loved so much.

I’m having trouble understanding the justification that lead to the dialysis in the first place. The medical code is to do no harm and, in the pursuit of longer life, it seems that the procedure over six years did far more harm than good. My mother has incredibly fond memories of their life together but it seems those good memories have a hard stop when he began this medieval treatment. This is something our now over-populated planet needs to grapple with, the idea that more life isn’t the same as betterlife. If the only way to keep someone alive is to attach a machine to them, is that really living?

Dialysis, like the dinosaurs in Jurassic Park, begs the question just because we can do something doesn’t mean we should. As I have said about marriages, if the meal is the best of your life but the dessert is a dogshit tart, all you remember is the last bite. My dad lived an amazing life—from working as a stunt pilot for Hollywood and knowing Gene Hackman personally, to working as a Rock ‘n Roll DJ, to meeting Minnesota Fats and witnessing him play, to creating a real estate business with my mom that defied the conventional clients—it seems so wasteful and tragic for the last five years to be a steady diminishment and leeching of his will and ways until his death was just small.

Further, the die at home in your own bed is only noble when the recipient of the invitation to the afterlife goes gently. There as nothing graceful or beautiful about my dad fighting with every ounce he had left to keep living. Given who he was, it isn’t surprising he battled to so hard but fuck it was hard to be in the room and watch it.

I thought, at the time, that my bizarre divorce was the worst thing I’d ever have to live through. I was dead wrong.

I wrote this as a larger piece about my father figures fifteen years ago. Before the cancers. Before the failing kidneys. Before his decline. I believe it is a fitting tribute.

After my biological father left the picture, Mom had a rocky road finding the perfect man as if the very idea of perfection were even attainable. But, as her firstborn, the search was as much for a man I could call my father and not feel shafted somehow by using the label as it was for her to find marital bliss.

By the time I got to college, most of mom's marriages hadn't really lasted that long—a couple of years at most—I think six years was the record. None of them were great husband material and in the "father" category, my sister and I were almost always seen as baggage to put up with rather than family.

And then there was V.

We call him V because his name is Lawrence Volbrecht—a midwestern cowboy type with a proud German heritage, a laugh as big as thunder, and a career that has included being a Hollywood stunt flyer, a Rock and Roll DJ, and a Real Estate King.

I met V when on Spring Break of my junior year in college. Mom was throwing a Sweet 16 birthday party for a cousin of mine whose friends were not the kind of kids you really want in your house. Some drug addicts, a couple of Gang Members, and at least a few men in their twenties with 14-year old girlfriends. Underage drinking kind of blossomed up in the party before my mom even had time to pretend that my cousin even cared about the beautiful cake she had baked for her. It shortly became chaos.

I was used to being the Alpha in my mom's house. Once we escaped from stepfather number one—the violent domestic abuser—I grabbed hold of The Man of the House belt and wore it defiantly. V was mom's boyfriend. I'd met many of her boyfriends over the years, so I wasn't even suspicious. I was dismissive. He was nice but they all were at first. Mom was sort of scurrying around, trying to get control of this rapidly spinning monstrosity of a Surly, Angry 16 party and it was time for someone to call things to a halt and kick all of these shitheads out on the street.

Mom and I successfully got them out of the house but they weren't ready to leave. They were pissed that we had ended things before they were ready and about twenty of them were still hanging out in the front yard, defying anyone to tell them to leave. I steeled myself. Time to get Wyatt Earp on these fuckers.

And then, like a force of nature, V came strolling out of the house. He looked stern and angry. He slowly but firmly told the kids it was time to go home. And a couple of them laughed. And my mom's new boyfriend kind of...grew. He thundered into the yard and ripped his dress shirt open, popping the buttons and roared at them that they would disperse or there would be hell to pay. The shocked, suddenly taken aback looks on the faces of these thugs and angry young men and girls was hysterical. And they bolted out of there like cartoon characters leaving silhouettes of their bodies in the dust.

I couldn't help myself. I started laughing. Out of surprise, out of amazement. He turned on me in an instant. And smiled the biggest shit-eating grin I've ever seen. "Well...there you go." his deep voice calmly rumbled. It was the start of profuse respect and continual admiration I have had for this man called V. He was someone to emulate. He was someone to count upon. He was a Man's Man.

Mom and V have been married for over thirty-six years, obliterating her earlier records and, in that time, I have watched him love my mother fiercely and unapologetically. I've gone to him for advice, I've realized that while he is not my blood, he might as well be. We look nothing alike but no one who sees us together would know that he is not the loin from which I sprang.

He is everything a man should be, in an Ernest Hemingway sort of way—bluntly honest, dependable, hard working, funny, true to his word.

I've grown to love this man profoundly. I have an abiding respect for him and his ways of doing things. I take deadly seriously his words of wisdom. Because, even though it took her until I had become a grown man to do it, mom finally found a man I am proud to call my father.

That is how I want to remember him in place of the diminished, broken, poisoned figure I held this week. That is how I think he’d like to be remembered.