“Robert*!? Where are you, Robert? Why aren’t you here?”
“I’m here, honey. Right here. See? I’m holding your hand. I’ve been here all day.”
“Robert! Where are you!?”
Beads of sweat coalesced on W’s chest as she frantically tried to prop herself up in bed. Trying to hide my grimace as I imagined the new skin growth on her elbows roll up like wet pieces of toilet paper from the friction, I sensed her daughter approaching me.
“We’d like to talk to you outside, if that’s possible.”
Nodding my head, I moved to zip up the posey net bed and braced myself for the screams that had haunted me for the last 2 days.
“NOOOO!! Please don’t leave me in here! Please!! Where’s Robert? Why are you doing this to me??”
“Honey, we’re just going to have a chat right outside. I’ll be right back,” he tried to reassure her.
Leading the way out, I wondered if it would be best to find a conference room for this impending conversation. Except I didn’t know where those were, even after 4 months.
Just add it to the list of reasons why you don’t belong here, M.
Trying to give W’s daughter a reassuring smile, I waited for her to say her piece.
“Isn’t there anything more we can do for my mom? This is awful just coming in, seeing her day in and day out being in such a panic all the time. Now that it’s Monday, can you touch base with the psychiatrist again to see if there’s anything we can do??”
I thought back to the last several notes from my esteemed psychiatry colleagues who were probably too overburdened with their census to write anything that could help me in this moment:
- Continue current management
- Avoid benzos
- Does not meet inpatient psych criteria
- Will continue to follow
“My mom was on ativan before she came to the hospital, and it really seemed to help her but it seems no one is willing to give it. And I understand because it can cause her to stop breathing, but for goodness sake! How is this any better??”
Frustration spilled out against her best efforts as condensation started to cloud her bifocals.
“Do you know what it’s like to watch your dad try to reassure her for the thousandth time in an hour that he’s there, just for her to call out for him again and again? After 70 years of marriage, he can’t give her comfort because she doesn’t even recognize him! This is killing him! And her! And to see her caged up in that bed is just sickening. No one prepared us for this when they diagnosed her with dementia.
NO ONE.”
Robert patted his daughter’s shoulder tentatively, almost as if to ration out his comfort in order for it to last them another day. His weary eyes locked with mine as he quietly begged,
“Please do something.”
How many ways can you say no, M? There is nothing left to be done. Grasping at a “fix” is only going to break you… and them. This is not what you were trained to do.
And yet, I couldn’t bring myself to say it.
How could I tell them I had no magic pill to bring back the woman he had loved for 70 years? That the warmth of her all-encompassing embrace was now forever replaced by sharpened talons trying to crawl out of her broken mind? That the woman continuing to scream his name beyond the closed door was no longer the same W he remembered.
His memories of her were merely echoes of the love she gave.
But the source… the source was long gone.
Steady, M. You still have the rest of the day to get through. You can’t blow your entire compassion load on this. Zip it up, give yourself a coffee break at the end of this and get on with your day.
“I’ll get ahold of psychiatry after I examine your mother and see what I can do. Thank you so much for your patience… I can’t imagine how frustrating this is for you.”
Robert and his daughter nodded in thanks and proceeded to head to the elevators. It appeared they also needed a break.
Letting out the breath I was holding, I entered the room as a strange silence filled the small space. W tracked me as I approached the bed, first unbuckling the plastic, then slowly unzipping the netting until I could see her face to face. Beckoning me closer, she whispered conspiratorially,
“You have to help me get out of here. I need to get out!”
Ignoring her, I moved on with my exam.
“W, I’m Dr. M and we’re in the hospital right now. I couldn’t help but notice that your skin is getting rubbed away on your elbow. Is it alright if I take a look?”
Surprisingly she held up both elbows for me to evaluate her frail tissue paper-like skin – it had indeed rolled up in heaps as I had expected, leaving an angry appearing, shiny pink base.
“Who are you? Where’s Robert?”
“I’m Dr. M and Robert stepped away for just a moment. I just need to listen to your heart and lungs, and I can see if I can find him for you. Do you feel like you’re breathing ok?”
While she shook her head, I touched my stethoscope to her clammy skin and listened to her racing heart beat.
This poor woman had been on edge the entire 4 days of her hospitalization. How could she not be, stuck in a netted cage while we tried to figure out where she could safely be transferred to? Soft restraints had seemed so inhumane, but was this truly better?
Finishing my exam, I regarded her again – clenched jaw, dilated pupils, sweat beading up on her chest, heart beat bounding in her neck. She knew what was coming without me saying it.
Amazing the things she remembered.
“W, I have to close up this net bed again. I’m going to talk to the psychiatry doctor and see if there’s anything else we can do to help you. But I just want to repeat that you’re safe here. You’re safe.”
Sealing the one sided white zipper as quickly as possible before she could get her hand through, I finally reached the top as she attempted to scrape the netting down.
“Noooo! Please God, no! Why are you doing this to me? Why?”
With one final snap of the plastic buckle at the top, it was over.
She was “safe”.
Turn around and walk away, M. Don’t spend another 10 minutes trying to reassure her like you did yesterday. It’s not you she wants. And the man she wants wasn’t even able to reassure her either.
Call psych, get your coffee and make it to the end of the day.
That’s all you have to do.
“I’m not sure what else you’d like from me. She hasn’t had enough time on the antipsychotics, and I don’t think adding anything on to her regimen at this time is warranted.”
“Yes, I hear what you’re saying. I really do. But she has been writhing around in a posey net bed for the last 3 days, and the family and I find staying the current course is unacceptable – wouldn’t you agree?”
The sigh in the psychiatrist’s voice was damning as he realized I was backing him into a corner.
Too bad. Do your damn job. Like I have to.
“Listen, if there’s nothing else to offer, I still believe there’s value in you discussing that with the family. I can’t speak to the reasoning behind your recommendations as well as you can. It can be today or tomorrow, but I would appreciate it if you could come by and at least talk with them.”
Way to butter him up, M… I can’t believe you have to convince a psychiatrist to actually talk to a patient and their family.
“… I’ll see what I can do.”
His defeated response tempted me for a quick second to ask if everything was going ok. But it went as quickly as it came.
It’s coffee time. Just need to get to the end of the day – don’t over-extend yourself unnecessarily.
“Dr. M! It’s so nice to see your smiling face after the day I had today! You’ll have to tell me your secret someday… you’re always smiling.”
The observation made by my colleague in the hospitalist work room in his melodic, Spanish accent took me aback.
Is that what he really thinks of you, M? Is that what everyone else sees? How would he respond to:
“I’m actually dying inside. But I’m a great liar. Thanks for noticing.”
On second thought, maybe not… a half truth perhaps.
“Oh, it’s my last day on service… of course I’m smiling! And we’re about to go on the most amazing camping road trip to the Oregon Coast, Redwoods and Crater Lake with two of my favourite people. It’s going to be great.”
Because I’m going to compartmentalize the shit I’ve dealt with the last 5 days and pretend it didn’t affect me.
Because despite knowing I’m bringing myself down the path to a numb existence and this is not the doctor I wanted to be, it’s much easier to shrug it off and walk out of the hospital saying,
“Not my circus, not my monkeys anymore.”
Boundaries
This is why I left my clinic, isn’t it?
To sever these emotional attachments.
To not feel responsible for things I had no control over just for the mere fact that these people had chosen me to be the doctor who’d take care of them over the long term.
But is this better?
At what point does the hardening move from a necessity to allow us to do the work we do and cross over into the familiar land of cynicism where burnout awaits?
Or maybe I’m not hardening as much as I should be… not when the sound of zipping up the flap to our tent sent me reeling into restless dreams of confined spaces, echoes and screams, rebounding back and forth.
Some things you just can’t escape.
*Name changed for obvious reasons
***
I’ve taken a much longer hiatus from writing than I had intended – 1 week turned into 2, and all of a sudden we’re here 6 weeks later! I started to get a few messages from people wondering where I went, and finally after reading Dr. McFrugal’s reflections on the concern people have after their favourite bloggers seem to randomly drop off the face of the earth, I realized I should probably not do that.
Especially given the content that I put out about physician burnout.
What that being said, I do still plan on writing and if there ever comes a day that I decide to stop, I’ll write up a final goodbye post. I’m aiming for 1-2 posts a month at minimum, so if you’d like to be notified when that happens, please sign up for my newsletter:
Otherwise, I’m much more active on Instagram and you can find me posting there usually 2-3 times a week.
Thank you for being along on my journey!
***
Photo taken of the Aialik glacier, Alaska.
Glad you are writing again M. I must admit, I was wondering if you were ok, but having been there myself I understand.
One thing your post made me think of is people I know personally who have been on chronic benzos. From what they tell me, withdrawal (even from small doses) is absolute hell. It can cause serious personality changes. Dementia is a cruel process, and a heartbreaking one to watch.
Absolutely. Now that I’ve had some time to think, I think part of my difficulty was because J’s grandfather had dementia which rapidly declined over 3 years. It’s hard to separate ourselves from our work completely.. and I’m not sure it’s entirely necessary or beneficial, even.
Thank you for your concern – the feeling’s mutual, including the appreciation I have when I see you’ve posted something new!
I didn’t wonder where you went, but I did check for new content. I don’t know what kind of dissipation your posts provide you and I figure you may not always need to discharge. I hope less necessary discharges to be the case.
My friend a fellow Navy vet a decade my senior was recently diagnosed with ALS and his wife early Alzheimer. The diagnosis is relentless. He was behind me in church talking to someone saying Mayo was considering some kind of brain -itis as a possibility. His final statement to his correspondent: never give up hope. He moved to the nursing home 2 weeks ago. I was talking to his daughter last Sunday, he hates it. She asked if I were to win the lotto could she have some to home health her dad.
I always take my 90 year old mom out for dinner on Sunday after church. She has a touch of dementia at least the perseveration part and definitely some increased chaos in her life. She’s not Alzin but slowly failing. I think it’s the chaos that is the thing that upsets people. People don’t do well in the face of chaos, but chaos is the natural history surrounding tragedy. The solution to chaos is to embrace it’s reality and not try and deny it. When chaos happens you have stepped into a new river and the old river is gone. Instead of local I take mom 45 minutes away. She gets some shrimp or steak or a lobster and enjoys the ride through the country and then home again. I take the back roads andit’s mid afternoon and the scattered clouds are rolling in from the ocean and the sun is usually bright. I hear all about what my sibs are up to, and then drop her off once we’re back in town. I see her a couple other times a week but Sunday anchors her, so I’m committed to Sunday
On the way home I bought a lotto ticket. Sometimes hope takes on a different form. I’ll buy another next week, it’s only 300M:1 I might hit! We do what we can do.
Sometimes hope takes on a different form.
That was really impactful for me – thank you. You’re right… learning how to negotiate the chaos without allowing it to consume you is key to surviving it all. And I must admit, I don’t always see or understand the different ways other people carry their hope. This was a good reminder.
I know what it’s like to take some time away.
This post really took me back to when I’ve been in similar situations. Begging the specialist to please come and review a patient. I once had an endocrinologist ask me why they needed to come and see the patient if the patient was mute (after a stroke) I had to hold back from saying “because it’s your job”. I was so taken aback by the question
Ugh.. on one hand, I understand the specialists not wanting to do all the paperwork if there’s nothing of value they can add, but on the other I also struggle with tempering my initial reflex to say, “It’s your damn job.”
I think a lot of it stems from the fact that we’re so overloaded that we start to push back on the things that are put on our plate. Sometimes it’s appropriate, sometimes not. But it still sucks when you’re the one left holding the bag.
I’m pretty late to the comment game (again!). But thanks for checking back in to let us know you’re okay. Although I see you on IG every now and then so I knew you were doing fairly well 🙂
It’s the people who hate social media who sent me messages 😂. Not that I blame them since I pretty much withdrew from the other platforms. It takes a lot of time and effort to maintain an online presence as you well know… might as well stick to the one app I enjoy!
This was gripping writing, and terrifying. Thank you for writing it. In the past I’ve had loved ones get to the point where they can no longer recognize me or anyone else in the family. It’s awful. And the system is not set up to cope with it – there’s no inpatient options that are adequate, and of course outpatient options for people with that condition are a sad joke. The family had over twelve agencies, residential care facilities, and other potential sources of help all tell us the same thing: “We’d really like to help, but…” and then they refer us to someone else, assuring us what they believe that person or agency can supposedly do. The next day, that agency gives us the same “We’d really like to help, but…” line. It feels like everyone’s sole job is to say “No” then hand out brochures. As a result, I’m about as scared of living through that kind of nightmare myself one day, as I am of falling into a shark frenzy. At least the sharks would be quick.
As medicine has advanced to help people live longer, I don’t think the system adequately anticipated the amount of dementia we’re seeing as a direct effect of that. You’re right – the system is not set up to cope with this and I’ve seen a lot of families spinning their wheels trying to figure out what to do. It’s heartbreaking and everyone feels helpless all around.
I actually had this conversation with my father who’s been trying to save enough for retirement to make it to 92 years old, which is apparently where they’re projecting people to live to these days. I was trying to encourage him to take more vacations NOW, but he adamantly refuses to take breaks more than once every 3-5 years. “Papa, you don’t want those years,” I told him. Odds are, either he’ll have dementia then OR he’ll still have his sharp mind imprisoned in a body that can’t do what he wants it to. It’s a cynical way of looking at things, but I’ve seen way too many regrets to not want to take advantage of my good health now.
social media who sent me messages 😂. Not that I blame them since I pretty much withdrew from the other platforms. It takes a lot of time and effort to maintain an online presence as you well know… might as well stick to the one app I enjoy!
Hello
I didn’t wonder where you went, but I did check for new content. I don’t know what kind of dissipation your posts provide you and I figure you may not always need to discharge. I hope less necessary discharges to be the case.
I wish that were the case, but unfortunately there’s still plenty to be riled up about and I’ve just been having difficulty finding my words.
Thank you for continuing to check for new content – I hope to have a new post up this Sunday. I’ve been very erratic with posting the last 2 years, so if you’d like to be notified when new stuff comes out, feel free to sign up for the email list or follow me on Instagram where I’m much more active!
Take care,
M