I’m a Hospice Nurse. My Patient Isn’t Dying Correctly.

It took me about a half hour to drive to Mrs. Crabtree’s house.

I’m fine. Just get there.

Since I’ve technically finished both of the supervised visits I’m required to do, I was volun-told to spearhead a solo shift. I can handle it. I looked through that binder Natalie gave me. Irregular breathing, glassy eyes, mottled discoloration on the feet and knees. The last few times Natalie and I worked Mrs. Crabtree’s house, nothing of note even happened. I just doom scrolled on my phone for most of the 12 hours I was there. Half the time she’s not lucid enough to acknowledge anyone in the room. For the most part, Natalie handles all the family stuff. I’m just there to be a sponge. Take notes. Go through the steps.

Natalie called out today. We’re already so understaffed as it is. She’s my lifeline, as embarrassing as that is to admit.

10 minutes away now. I had to get gas on the way there. This always passes. I just have to ride it out and do my job.

I skimmed that binder. I know I did. Every single page I flipped through is sitting in my bag right now and I can feel all of them.

5 minutes away now.

I’m met at the door by a disheveled woman. Her eyes bloodshot. Her nose runny. She’s wearing the same pair of pajamas she was wearing a week ago.

“She managed to eat today. That’s a better sign right? I mean it was only a bit of jello and chicken broth but—”

“Yes, that’s a very good sign,” I tell the woman.

She thanks me anyway.

Inside, the house looks no different than the last time I was here. Before I even start doing anything I have to go through my notes and do some pre-charting. Diagnosis already filled in. Lewy Body Dementia. The brain degenerates, the body does what it wants. Code status. Do Not Resuscitate. Already documented. Oral intake, one jello cup and some chicken broth. Cognition status, disoriented times three. Mobility status, bedbound.

The woman told me she asked for food on her own today. First time since coming home from the hospital. I asked if she’d managed any full sentences since our last visit. She thought about it for a second. “Not exactly,” she said. Her mother would start talking but it was like she was picking up a conversation from somewhere else. Days ago. Months. Maybe years. Like coming back to a video and it plays where you left off.

In the living room, a man sits in a chair. Eyes locked on the screen, not really watching it. When my grandfather was passing, I locked myself in my room and didn’t come out until it was time.

I asked the woman if there’s a specific pattern she noticed. Maybe a word. A particular subject she can’t let go of. She says her mother has been narrating things out loud. Step by step. Like she’s teaching someone. Only her hands don’t match what she’s saying. She’ll talk about folding towels but her fingers just keep doing the same thing. Opening and closing. Opening and closing. Same motion every time. Like she’s grabbing something that isn’t there. Hours at a time. Only stopping when she finally falls asleep again.

LBD patients do weird things with their hands. It’s in the binder somewhere.

“So. How long?” the man asks me.

I tell him I won’t know specifics until I go up there and check her vitals.

“When I checked on her this morning she kind of recognized me. Or at least seemed more aware of her surroundings,” he says. I tell him that’s a good sign. That any deviation from her dull, confused state is a small victory. His tone only barely shifts. “But what are we celebrating? That she’s one step closer to knowing what’s about to happen?”

I continue up the stairs. I don’t have a response. “The last time I checked on her she was sound asleep,” he says.

We make it to her room. I lightly knock and make my way in. At the edge of the bed, Mrs. Crabtree is sitting upright, eyes fixated forward, completely still.

I open my bag. Take blood pressure. Then pulse ox. Go through the list.

She isn’t moving no matter what I do. Failing to react to anything. The man and the woman look worse than they did downstairs. The woman comes over, places a hand on her mother’s shoulder, frantically trying to get her to react in any way.

“It’s me. Hey. Where do you think you’re going? Can you hear me? Hey. Mom. Tell me what’s going on. You’re supposed to be laying down.”

Still nothing.

I manage to slip the cuff in the gap between her shoulder and upper body and secure it to her arm. The man is still in the doorway, just standing still and watching. His grip on the door handle getting tighter as the scene unfolds.

The woman turns to me. “Why isn’t she moving? Why isn’t she reacting? What’s happening to her?”

Blood pressure is done. 118/76.

That can’t be right. Her charts show a steady downward trend consistent with decline. The last time I took a reading it was hovering around 88/54, before that, 94/60. The cuff must not be calibrated correctly. I take it off, hit the reset button, then try again. No change. The woman looks to me for answers. The cuff tightens. 118/76. Same reading.

I tell the woman to step back a bit. She’s still angry, justifiably so. I tell her it’s okay. No it’s not. That I’ve seen this before. No I haven’t. That her blood pressure is about the same as it was last time. The woman moves aside as the man finally steps into the room. He convinces her to calm down. That I’m doing my job. To give me space. They leave the room and I hear their muffled conversation outside the door.

Pulse ox is next. Remember the steps. Make sure you actually turn it on. I hold down the button. The lights flash. I hear the beep. It’s working. O2 sat 98%, pulse rate 80.

That number is wrong. Take it again. No change. Probably because I got this one from the clearance aisle at CVS. Natalie gave me the one from the facility. Same numbers as before. No decrease or increase. I note it in the chart. When the next nurse gets here I’ll use theirs. It’s fine.

I begin my neurological assessment. Touching her shoulder yields nothing. Saying her name doesn’t work either. Still not moving. I take out my pen light to check her pupils and to see if she can track my movement. Eyes are still forward. Pupils are severely dilated. No constriction after shining the light either.

I fight the urge to call Natalie. No. Not on my first solo shift. It’s fine. Autonomic dysfunction is common with LBD patients. Pupil abnormalities can happen. I wave the light back and forth again. No visual tracking.

Too risky to try repositioning her. Fall risk patient found seated at edge of bed, unassisted, unable to move without risk of injury. Will continue to monitor. A few pillows behind her, and to the side, and some to the front should suffice.

Outside the door, the muffled conversation is barely audible but still carries the same urgency it did when it first began. Heading downstairs, the woman was mid-sentence, attention immediately focused on me.

“How is she? Did she move? Did she say anything?”

The answers come almost word for word from the chart, albeit a bit nicer and less clinical. She isn’t having it. Before anything else is said, she’s halfway up the stairs. My pace matches her urgency.

At her room now. The door is wide open. The pillows are back in their original places. Mrs. Crabtree laying on her back, deep into sleep. The woman lets out a sigh of relief. She thanks God that her mother is okay. Sleeping in bed as if the last 10 minutes never happened. She lowers her voice. Distant sounds of the TV make the quiet a bit more bearable.

I stare at the pillows.

Can’t dwell on what we saw.

Fall risk patient resting in bed. No signs of injury. Will continue monitoring.

The next few hours drag on. Mrs. Crabtree has been sleeping since the last assessment. Her breathing patterns have become a bit more laborious. Not the exact kind to watch out for, but worth a mental note.

The anxiety has calmed down a bit ever since the man and the woman also took it upon themselves to nap. Back to phone scrolling and occasional staring contests with the window. Nothing really interesting worth looking at. Rural Texas has trees, grass, and more trees. With the occasional bobcat or coyote making their way through both. The cell service is decent at least. One of the few small towns that actually has 5G towers, which is about as close to a compliment it’s going to get.

Feeling restless, I go downstairs to get a cup of coffee and find the TV on but the man absent. Still asleep somewhere. Can’t blame him. On my way back up, the unmistakable sound of an EAS warning blares.

This is not a test. Shelter in place. Avoid windows.

There’s more warnings here than actual emergencies. You get used to tuning it out.

Back in the room now. Mrs. Crabtree is still sleeping. Same routine as before. Scrolling. Listening for changes. Rinse and repeat.

Her breathing is noticeably different now. Not the labored rhythm noted a few hours ago. Slower. The gaps between breaths are stretching.

Exhale. Silence. The stopwatch reads 15 seconds. Downstairs, the muffled conversation between the man and the woman is getting louder. They’re awake again.

Exhale. Silence. 20 seconds. My urge to go tell them slowly building. No. Have to make sure it’s actually happening.

Exhale. Silence. 30 seconds. If only Natalie were here. Just keep counting.

Exhale. Silence. 45 seconds. I think about my own loss years ago and the similarities.

Exhale. Silence.

Once you hear the death rattle they go from days to hours. It’s a checklist, she’d tell me. Fifteen years of watching people die the same way. Anything becomes clockwork.

Staring at Mrs. Crabtree for any signs of life, I go from actively counting breaths to feeling for when the pulse finally stops. Two fingers on her wrist. Still there. Slowing down now. The conversation downstairs getting louder in my head. Pulse is growing weaker, harder to place. Should I call Natalie? No. I can’t. Don’t have it in me. I could be wrong about it anyway.

One more beat. Silence. Nothing.

I just sit in the room. The time reads 3:28PM.

Looking at the door I need to open feels paralyzing. Natalie is usually here to handle any and all family stuff. I’m just here to be the sponge. To write everything down, administer meds, help in any way I can without having to worry about saying the wrong thing. There’s a man and a woman down there dreading the news I’m about to bring them.

The time says 4:30PM.

Mrs. Crabtree has been laying in the same position since I noted her last heartbeat. Walking over to her for one last check before I rip the bandaid off, I notice that her eyes are completely open. Not partially closed. Not closed at all. Wide open.

Not terribly uncommon with death. Perimortem muscle relaxation. It’s in one of those binder sections I’m sure. I grab my pen light and shine it on them.

The pupils immediately contract.

The time now reads 4:45PM.

Grabbing my binder, I flip through the section on ocular nerves. Nothing is helping me. I have no frame of reference for this. Did I miscalculate the breaths? The pulse? What possible reason could there be for her eyes to be responsive now?

I place my fingers on her wrist again. It’s cold. Nothing beats under my fingers. Maybe a bad area of circulation. I try the other wrist. Nothing. Same temperature. Her neck next. Nothing. My final test is putting my head against her chest. Still nothing. Not one single heartbeat.

Yet her pupils contract every time I shine the light on them.

If there’s any time for my pulse ox to actually work, now would be great. I get it out, reset it, place it on my finger. Working normally. 110 BPM, 95%. Taking it off, I reset it once more, and pry Mrs. Crabtree’s finger off the side of the bed.

Clipping it on, it gives a flat line for the BPM, but an oxygen level of 35%.

Something can’t have oxygen saturation without a heart to pump it. No rise and fall of the chest either. Taking the temperature now, I get a reading of 94.8° Fahrenheit. The thermostat by the door reads 72.

I have to be wrong.

Peripheral shutdown. Page 32.A, section D12. As the body declines, the veins on the arms get more visible. Pulse slows down. Body temperature fades. Consistent with my notes.

A sudden knock on the door. The man and the woman must have heard the rapid shuffling of feet, and the time I thought I had to rationalize everything happening in their absence has come to an abrupt end.

In front of me is a patient that defies explanation. Behind me is a family waiting for one.

As the door opens, the old woman lay motionless in her bed. Eyes now closed once again. No pulse to account for. No signs of life.

I tell the woman in the doorway that her mother’s vitals are about the same as when she took her nap earlier.

She asks me if her mother said anything. I tell her no, that she’s been quiet. The woman pauses and stares into me.

I’ve seen that exact look, from Natalie.

Without saying anything, she makes a beeline for her mother. She grabs her hand. It’s cold, but she’s always cold now. Stiff, but her arthritic hands haven’t been any different. She looks over to me, teary eyed, asking how much longer she has. I don’t answer. The woman doesn’t wait for one. She steps out, the sound of her feet descending the stairs once more.

Alone in the room again.

Her chest is rising and falling. Agonal breathing. Seen this many times in the ER, especially with cardiac arrest patients. The body hasn’t caught up yet. Doesn’t mean she’s alive.

But that happens when someone drops suddenly. Not gradually. A heart attack. Trauma. Not someone who’s been declining for months. Her heart didn’t stop without warning. It wound down. Not the same thing.

Have to get back to charting.

Patient resting comfortably, vitals obtained, blood pressure unable to obtain due to patient positioning. Cheyne-Stokes respiration noted. Respirations shallow and irregular. Will continue monitoring.

Just as I finish writing, one of her fingers is moving. Tensing and flexing back and forth. Only one. The index finger on her right hand. The same one that gave me a flatline with an oxygen level of 35%.

It happens on the other hand. Index finger flexing back and forth. Her eyes are still closed. The chest has stopped moving again. The movement of her fingers on her right hand is now a fluttering motion, perfectly in sync with her left.

Ten minutes pass. The fingers haven’t stopped. Every time I glance at her the motion is still there. Steady. Synchronized.

Can’t dwell on it. Chart needs finishing.

Fine motor tremors noticed in bilateral index fingers, consistent with LBD symptomatology.

Fine motor tremor.

No other changes noted. Will continue to monitor.

Time for another neurological assessment. I grab my pen light to check the pupils again, expecting to have to lift her eyelids. Nope. Open. Constricting pupils just like before, but no other movement to note. Moving the light back and forth horizontally yields nothing. Still looking ahead.

Moving the pen vertically is when the eyes lock onto the light.

The time now reads 5:02PM. I don’t know how long I’ve been standing here, or when exactly I put the pen light away, but it’s now in the pocket of my binder. My first instinct is to open it. Flip to the page that has all the answers. The hum of the air conditioner is louder now.

Looking down at the old woman again, her eyes are still open, fixated on the area where the pen light was shining from. Eyes not moving.

Checking her pupils again with the pen light. The vertical track from earlier, gone. Not tracking vertically or horizontally now. Eyes still in the same general direction they were. Pupils are contracting again when the light hits. This time at the exact same rate. Both returning to the exact same size. Like watching two camera apertures synced together.

Her fingers start back up. Moving faster, with both sets flexing and twitching in a choppy, glitch-like rhythm. Arms are motionless at her sides. The wrists turn toward me. I take a step back, my eyes watching her hands. I nearly trip on the chair behind me.

She stops. Everything does.

My phone vibrating cuts through the silence. Natalie.

Hey just checkin in! My bad about today, i couldnt stop throwing up last night and i woke up with like a fever of 103. throat is killing me too :/ hows Crabtree doing? she doing ok?

Me: no you’re fine! It’s been….alright here. she’s been very quiet, not a whole lot changed since last time lol

Oh okay thats good to hear. Hows jake and alyson?

Jake and Alyson.

I type it back.

Me: they’re coping in their own way i think. Jake has been glued to the tv most of the day, and Alyson has come up to check a few times but she’s been sleeping so not a whole lot of back and forth conversation going on

She mention any changes before you got there? or was she awake yet

Me: Just that she’s been moving irregularly, muscle spasms, repeated hand motions, that sort of thing. Consistent with LBD symptoms so far

You notice anything weird about her breathing yet? Her heart rate?

Me: Only slightly. When I took vitals earlier everything was pretty normal, heartrate a bit slower from time to time. about as normal as it can be for whats happening i guess

That fits. If you need anything let me know ok? I’m gonna try and get more sleep but dont feel bad for waking me up if you have any questions.

also, be careful when you leave. The roads are backed up really bad rn.

Me: Thanks a lot and i will!

Me: Do you know what happened?

HUGE pileup on I-35. ambulance just swerved into oncoming traffic going like 90.

Me: Holy shit

Right? I’m wondering if the dude had like a medical episode or something

Me: Seizure maybe?

idk, i just saw a clip show up on my feed and instantly recognized the exit

anyway ttyl!!!!! Good luck, you got this. text me before you leave, or call

Me: Will do thanks!

I put my phone down.

Nothing.

Well, not exactly nothing.

Her head… it shifted. In the direction where I was standing.

The time is now 5:15PM.

I can see small muscle flexes in her cheek. A faint sound from her mouth, almost too quiet to hear. Teeth on teeth. Come to think of it, she’s the only geriatric I’ve met that actually still has them. Has? Had? At this point the specifics betray everything I’ve ever known.

I’m way too restless to deal with it right now. Being sedentary for this long is making my legs fall asleep, and I can hear the sounds of someone washing dishes and the faint beeps of a microwave keypad downstairs. Seems weird if I don’t make an attempt to at least try and socialize with them.

Downstairs, the man is in front of the sink scraping grease off a very expensive looking cast iron skillet. The woman is on FaceTime with someone, sitting curled up on the couch, surrounded by empty water bottles and crumpled up balls of tissue.

I make my way into the kitchen.

“My dad has one just like that,” I say to the man. “He nearly took my head off when I told him I put it in the dishwasher.”

“Oh I woulda been LIVID,” he says, half laughing.

“What’s the deal with that anyway? Does it render it completely unusable or something?”

“Well no, but the way cast iron works is you have to ‘season’ it. It’s like, you spread a thin layer of oil on it and then put it in the oven so it forms this like, non stick coating that bakes onto the metal. Helps it not rust and shit.”

“So what does soap do?”

“Removes the coating and makes it a pain in the ass to deal with.”

I’m not very versed on cookware, and the subject isn’t particularly that interesting, but it’s a good break from everything happening today.

“That makes sense.”

“Yeah and it usually takes like, multiple times in the oven before it’s done right anyway.”

“Right.”

“Where’s y’all’s bathroom at?”

Keeping a conversation going has also not been a strong suit of mine, either.

“Through the living room right as you get to the front, on the left.”

The woman, phone in hand, is now up from the couch, pacing back and forth in the living room. I can hear her talking about her mother. About how she’s been. That her favorite hobbies are currently sleeping and staring at the wall. Her voice trails off as I shut the door.

The stairs feel longer on the way up.

I hear the woman talking. Her voice has an optimistic tone to it, or as much as I can discern from down here. She’s speaking to her mother softly. I can’t make out what she’s saying.

I’m halfway up the stairs, getting closer to the door.

“Hey? You goin somewhere again?”

The old woman is standing next to the bed, facing the doorway. Gaze fixed in place.

“You can hear me right? Mom. I’m right here.”

“Mrs. Crabtree, whatcha doin hon? Can you tell me what’s goin on?”

I know she can’t, but it helps keep up appearances if I at least entertain the idea.

“She keeps turning her head every time I move around. Hasn’t moved a muscle otherwise. Was she doing anything like this earlier? Where were you?”

I don’t have a response.

“What’re you lookin at? Hey. Mom.”

The old woman’s head snaps to look at her daughter, tracking her hand movement.

“Hey, look at me, okay? You’re okay. Can you hear me?”

As soon as the woman’s hand pulls away from her mother’s cheek, the old woman grabs her wrist with both hands.

“Mom! Hey! You’re okay whats—”

Before she can finish, the old woman’s teeth dig into her daughter’s wrist.

She’s frantic. Swearing at the pain. Trying to process what’s happening.

“Get her off get her off get her off get her off”

I need to call someone now. I have to.

“She won’t let go.”

Right now is when I’d have a security guard to flag down, a button to press to get immediate help.

“Alyson, just stay right there. Don’t move.”

“I can’t.”

Backing away now, I hear Jake downstairs still cleaning dishes. The sound of the pots and pans clanging must have covered it.

“I’m calling 911. You’re okay. You’re okay I promise just try not to move her. She’s locked in place.”

The old woman’s grip on her wrist is not letting up. Blood is now pooling from the spot she’s latched on to.

I back away into the hallway. Phone in hand.

Type in the number.

It rings.

“You have reached emergency services. All operators are currently busy. Please stay on the line and do not hang up. Your call will be answered in the order it was received.”