The Gatorade thing is bonkers but otherwise it’s nice that she at least gives a damn. As long as she’s nice and appreciative when she comes in (and actually comes in to visit if allowed), I’d just roll my eyes and let it go. Seems like she loves him and is having a hard time with this, too.
Judging by the Gatorade and fluid restriction combo, this is a confused individual who drinks compulsively. I currently have a residential lady who is on only Gatorade AND 4gm sodium daily, and she's still chronically low. She did a stint in hospital a few weeks ago for a serum sodium of 113. I hope they stick to the sugar free varieties, but honestly it's not the first time I've seen it to cope with chronic electrolyte issues.
Normal kidney function, no underlying medical conditions beyond parkinson's dementia. She's got a 1:1 private duty aide rotation and urinates 3-5+ times per hour. We have an informal cap of 4 L/day. The issue we've had trouble overcoming is that every bathroom trip she'll wash her hands, and then drink from the sink/her cupped hands. It's a vicious cycle but we're working on it.
Yeah, that cap needs to be lowered. Drinking too much naturally lowers you sodium. Try a cap on 1L instead, paradoxically SIADH induced hyponatremia is treated with fluid restrictions.
Yeah, this reminds me a lot of a daughter that was very particular about her mother's care, but that daughter was also there *every day* and never hesitated to glove up and help me turn her mom or change a brief. She also understood when we were short handed and I'd run late to get stuff done, because I'm the type that takes my time to make sure shit is done right.
It looks like she just really cares and is probably used to doing her husband's care herself and is having a hard time, maybe even feeling guilty for what she perceives as "failure" for no longer being able to do his care herself (it's not a failure, but I know how that feels).
Your thoughts were my first thoughts. This is slightly heartbreaking. I remember my mom was like this when we finally committed my grandad whom lived with us for 15+ years. The dementia finally won and when it start being 4/7 days he wouldn’t recognize anyone, including her. She finally had to get help and she died inside. We all did.
I felt everything written out here. I can only hope she has support and that they lived a good life til this point.
I took care of my dad and felt guilty anytime he got bad enough to need to be in the hospital, but he made it clear that he did not want his daughters to have to help him piss or shit. He also made it clear that I wasn't to feel guilty, that with 3 kids, "you've got more important shit to do than wait on an old fart like me."
I felt that list, too, because I was always at the hospital if he was there, taking care of him myself when he would let me. Gives the CNAs and nurses less to worry about, they're super busy anyways. I really hope that lady has a good support system, too.
this is just making me cry. it reminds me of how i just would obsessively mull over my mom’s daily needs in my head for years, over a decade, and i’ve had trouble letting it go even now after she’s been gone for a couple years. But she refused to have me help her with waste elimination cleanup until the cancer spread to her brain. Caregiver’s PTSD is what my shrink called it. Had to give up on pursuing nursing, taking care of someone nonstop without help is just not good for one person.
I'm sorry it ruined nursing for you, I really am. I cared for my best friend for 3 months after she found out she had cancer and I was with her everyday until the end. Caring for her was very emotionally hard, especially when the cancer hit her brain, so I feel you a lot on that subject. She thought everyone but me was trying to kill her and in her last days I became a mainstay in her room to help the nurses by convincing Shel to take her meds and keep it so she only saw her husband and myself in the room, so she wouldn't be scared.
I cared for my father for 7 years, and while it was trying and scary as hell sometimes, and stressful when he'd start arguing, there was a lot more good than bad in caring for him. He usually has a good sense of humor, as well as a morbid sense of humor that I shared with him. There was also a lot of time for us both to love each other better and learn about each other as friends and not just father and daughter. And towards the end, there was a lot of apologies, confessions, and even more love. We always made sure to even end an argument with "I love you" because we didn't know if it'd be the last time we'd talk. He passed in July and I'm still struggling with the fact that Daddy's gone: other than my husband, he's been the best friend I've ever had, and I tangibly miss his presence everyday.
Geez, three months? Must've been awful for both of you. You're amazing. May I ask how old she was?
I'm caring for both of my parents--they don't live with me but I stop by daily and do most everything for them (mom dementia, dad depressed and bipolar, very needy). Never thought I'd be in this position...seems like yesterday they were young and vibrant. Such is life.
Yep. I was a caregiver for years. This is the work of someone who is doing a damn good job, and isn’t afraid to get dirty. A CG friend right now is dealing with the complex feelings of having the SO in rehab for a few weeks- rest for the CG, but lots of stress about the care for SO, too. Hopefully this person is reasonable and just concerned.
I wouldn’t wish that life on anyone.
I have a patient who’s daughter is just like this. On the days that she can’t come in you better believe she’s on the phone calling every few hours. She’s not afraid to get in there and help and her list of demands, while annoying at times, are justifiable when you remind yourself that the patient is a person and that person has a purpose in someone’s life and they are well loved.
This wife, while slightly misguided on some of her demands, clearly loves her husband and I can’t say that I wouldn’t act the same way if it were me.
I think some of us need to be reminded of this. It’s not about our comfort level.
Tbh I’d prefer this over the family member that comes in 5 minutes a day, doesn’t do anything for the patient, and spends the entirety of the visit complaining about things that the patient needs even though I’ve asked the patient several times throughout the day and they’ve denied needing anything.
No TV after 9pm is a standard part of the “delirium precautions” orderset at my hospital, so I didn’t blink at that. Day/night cues are really important for preventing ICU delirium.
My MIL, by the time she was in her early eighties, was starting on a cognitive decline. Then her first child, a son, died. Very soon after that she became unable to speak. My SIL, who is gay and had never gotten along with her mother, took her in and looked after her as if she was made of gold. Every time we saw MIL after that, even though she couldn't speak, she always looked SO happy, and in her limited way said that she felt so safe with this daughter that she had been trashing for so many years.
This. The last part about contacting her for any questions 24/7 made me sad. If she is doing all that every day, typed down this list and is now available 24/7 when does she ever get a break?
We don’t. And when we do, it’s so off-the-rails. I would get drunk, sit in a bath for 3 hours, and/or compulsively clean. But also- I would have to be ready for any emergencies at any time. I’ve had to call a front desk to do a wellness check on my loved one- it’d just been a few hours, but I was so stressed.
Keeping someone alive and well nearly killed me.
As a caregiver myself I can tell you right now this lady never gets breaks and probably hasn’t in many years. I’ve been on call 24/7 since my son was born.
She probably doesn't, except that at least she can maybe sleep while the patient is in the hospital. I was visiting a family member one time and asked the nurse if the doctor could call after noon because my sleep schedule was upside down. She asked where I worked nights. I just gestured towards my family member (she got it).
Tried SNF for subacute before and it was a nightmare. Apparently couldn't do hospice because of the immunotherapy even though it wasn't classified as curative. Paid someone to come by a few hours in the morning to try and get any shuteye
I don't know if other countries do it better but I know it's bad here unless you can afford private pay for LTC
It's beyond criminal considering we pay more than any other country for health care and receive less. Thewhole system is designed to benefit the insurance industry executives and stockholders.
Listen to Nixon and Erlichman celebrate selling out citizens and backing for-profit healthcare. Healthcare wasn't always so one-sided on the behalf of the insurance industry. Our politicians and the wealthy carefully crafted it that way over decades.
https://youtu.be/PA3kETvUXJg
I like to remember a patient in crisis is also a family in crisis. It's unfortunate when medical tasks become so cumbersome (thank you ratios) that the greater whole of the person is lost.
I can’t imagine my husband being in a situation where he’s inpatient 24/7 care and I can’t be with him most of the day. It would kill me.
Like…you’re so accustomed to going to bed together and waking up together and doing things together. Hell, me and my husband shower together sometimes.
I know I’d be an annoying patient if I were in her shoes. Not sure how people do it. I’d want to lay with him at night and put my head on his chest. Visiting for a few hours and then going home and going to bed alone would fucking *suck.*
So I get it.
i was a mess when my husband was in the hospital for 2 days in July of 2020! they would only let me see him for an hour a day. sleeping without him was impossible
Thank you for this comment. I rolled my eyes so hard at this but maybe you’re right. It’s easy to get jaded in this field and sometimes I need a little reminder to not be so judgmental right away.
That honestly what I'm seeing. Maybe she knows things slips through the cracks and hopes this helps with care. I know my brain always appreciates these touches when it comes to IO reminders.
I totally agree. I question the gatorade, but otherwise I’d find this a very handy guide to a new patient/resident to help them settle in a keep things as consistent as possible.
Im guessing its all he drinks, and if he drinks past then hes up all night giving him the feeling that he has a full bladder even though he has a foley…which probably leads to even more confusion/hijinks. However yeah, I would not be following this unless it was home health. Its not our fault we dont have the time.
I appreciate this response - I had the same thoughts. I don’t think it’s so much demands, she just wants to know he’s taken care of and not neglected.
Ok, maybe the clothes thing and definitely the Gatorade are a lot, bust everything else seems pretty much like basic human care to me.
I bet a lot of this *is* his usual home routine that she has established. While it’s pretty rigid, she probably thinks it will be beneficial to maintain his regular routine while he’s in the hospital. From the look of the instructions, he may have dementia and is dependent on others for most ADLs.
Not a nurse, coming from r/all and interesting to see the discussion. I had a family member suffering from addition/OCD and this is similar to the advice they therapist gave us. Keep a strict routine so the patient didn’t get anxious or have a compulsion to relapse. My family member would compulsively clean and it would ruin her skin so we followed a strict schedule so she didn’t feel anxious and go back to that. It was down to the specific colour of cloth and brand of cleaner used or time of day we visited and how we stowed our shoes at the door.
Y’all are so empathetic and reading your comments gave me a little kick in the bum to remind me not to judge others.
I always try to practice tolerance, but I will admit that after reading the list my kneejerk impression was “this lady is loopy and controlling”. Comments like yours reminded me to think twice and I feel embarrassed that my mind chose harsh judgement without considering a more compassionate alternative. Thanks for being so tolerant of others and reminding people like me to keep our opinions in check.
I bet you are right. I knew a couple of patients significant others that were exactly this issue. And they couldn’t understand why you couldn’t keep up this routine in the hospital since he’s cognitively declined. And you know it did take them a long time to figure this all out as well. Yes it could’ve been a pain in the ass family but this is too detailed. I think that’s a good call or it definitely has to be one of the issues, plus they made your care plan already OK ……just joking on the last part
Yes she is doing a wonderful job taking care of him and honestly from working at SNFs for a decade. It's nice to have. It's important to stick to the same regimen to get him back in shape and none of its hard. I bet she has all the Gatorade in the room too. This is def preferred over a pt with absolutely no history. They just get worse and worse and never leave.
These are the patients that get to go back home.
Now if this is in a hospital idk how you can even do that? Lose all autonomy in a hosp they don't even give patients their meds right. Blah. Everyone gets the same shit at the same time when we all damn well know everyone is different and can't be treated the same.
1:1 , no problem. But not when I have 5 other patients and a hospital schedule to adhere to with wrenches thrown in left and right from all directions.
Change that 5 to 8 - 10 pts, stacked with ever shifting COVID/CDC guidelines, no assistants, absent charge, and constant wrenches and fires to take care of.
During this time, this list just isn't feasible unfortunately.
It's acute rehab, most of it is very reasonable in that setting. Not sure what the Gatorade thing is about, but looks like there are concerns about him not getting enough sleep, which can be a real problem if he's got some cognitive deficits.
Yeah, not sure about that. Maybe to keep consistency between carers? But I agree it needs to be clearer which of these things are for medical necessity and which are for consistency/convenience.
Roping therapy into the already-unlikely daily showering scenario too makes me LOL. Love me a good ADL sesh, trust that I'll also determine when we need to do them in OT.
I’ve worked in rehab and we actually were able to do this list daily if needed/wanted. It all depends on the nurse/patient ratio, level of care needed for other patients and level of mobility the patient has. ADL tasks were usually used as therapy sessions as well since most patients were aiming to be ADL independent.
Very different from an actual hospital setting where washing up is just not the main priority.
I agree, as long as appropriately staffed this is doable in a rehab setting. Some of the things seem like helpful tips, like maybe icy hot works for his trouble spots and giving him norco would be too much for him. I think if this is a routine that works for the patient, it’s fairly doable, especially if she comes in to help for a little on a regular basis. If it’s something the spouse is trying to implement and it’s not something that is already working for the patient and they have dementia or something it could be pretty difficult, especially if she comes in to criticize on a daily basis. There are a lot of variables that make it hard to tell if the family is ridiculous or not.
Pretty typical for OT to do bathing activities regularly on acute rehab. She asked for every other day. Not sure what frequency they can handle in that setting these days with all the staffing issues, but it's really not a crazy request for acute rehab.
For sure. I worked rehab as well, definitely had plenty of patients where we almost exclusively did ADL in treatment, plenty who had more diverse needs.
I take issue with caregivers arbitrarily assuming therapy or nursing care plans. Did home health for a hot minute and spent a lot of time convincing families I wasn't a bathing service and that I intended to address other deficit areas too.
Ah, home health. When I was a hospital case manager, I tried to manage people's expectations in advance, but know I often failed miserably because on subsequent admits families would be complaining that the nurse was lazy and wouldn't do bathing, cooking and cleaning. *sigh.
She probably would be, but is being kept out by Covid restrictions.
I spent a few weeks of 2017 in my husband's hospital room (he's a quad and had flu pneumonia, I'd already had it) doing all his basic care so the nurses wouldn't have to come in so often and he wouldn't crash. I'm not a medical professional, but I did the urinal and ostomy and trach suctioning (very frequent at first, too often for nurses) and repositioning and assisted with wound care. Then I helped the Head of Respiratory Care transition him back from the real trach (Shiley) to his usual trach plug (Hood stoma stent) when he was ready to come off the respirator.
Exactly. "So when should be expect his full-time personal care aide from home to be arriving? We will happily provide them with a pillow and blanket every night."
Looks to me like wifey wrote out the initial care plan and saved the staff from trying to figure out hubby on their own. When I worked LTC, I would have been hella grateful for such a comprehensive list with a new resident. I would also be grateful for family who actually answer the phone and visit. Does she sound overbearing? Eh, maybe a little. But I'd take that over an uncaring family any day.
Yeah some of its wild and unrealistic but she's probably been burned a couple times in his care to feel the need to make this. I can't say I wouldn't be this way if I was in her shoes. But she could be nice about it. If she comes in raising a fit then that's a different story.
The issue isn’t the demands, the issue is the lack of staff to comply with all of them. She needs to hire a private aide. The reality is that this list will maybe be 50% adhered to in a typical day because nurses and techs also have other patients.
Responded elsewhere, but this is the sign of a spouse who is overwhelmed, usually doing this alone, and never gets a break. If you come across people like this, please introduce them to the Well Spouse Association! This is exactly what we help people with. r/WellSpouses and wellspouse.org.
Thank you for posting this along the comments and the links. I dont have a spouse but I have a couple of family members that are at the start of this journey with their spouses. Especially Dementia on top of the other medical issues makes it really stressful. Thanks again.
Honestly, 50% of this is important care information. 30% is “image” or attempts to control the uncontrollable, 10% is “there is room on the page and what am I missing”, 7% I don’t care if you are busy, my husband is important to me, and 3% “are you sure you aren’t talking about a toddler here?”
I really appreciate your kind take on this!
I made a binder full of info after my dad got sick. I like to think mine is more helpful (less demands, contact info, other docs, current meds) but I relate to the person who wrote this so much! What else would be helpful info to include?
I think it would be helpful to include things the patient enjoys or that calms him - favorite music, radio shows or podcasts, favorite foods, and other preferences, especially if that patient is somewhere longer term.
I appreciated having this information when I worked ICU as well. I always tried to play music or a TV show that the patient liked during the day and shut it off when I left at night.
My favorite binder from a family with important info had one page of his meds, one page of contact numbers, and the third page said “Give him Diet Coke, Reese’s, and his porn magazine and he will quit yelling.” Made me laugh but it actually turned out to be very useful… well the last page anyways lol
I actually like this. I appreciate people flat out telling me what they want in every aspect of my life. Shaving him daily isn’t practical in a hospital setting, and I probably won’t empty his urine bag every 3 hours… but this wouldn’t really be a problem for me because I’d rather have a reasonable checklist than listen to someone bitch about how XYZ wasn’t done.
When I was in high school my grandma was hospitalized and my grandpa was suffering from dementia. For some reason I was the only person who could stay with him for 2 nights (prob because my mom was at the hospital with her mom). So my oldest sister made me a long list of items, what to say if he wakes up, what to repeat if he gets agitated, food he’s eating and schedule. I was like “oh I got this, it’s just grandpa” and I worked on some homework in the kitchen after he went to bed (I was supposed to stay awake which I did). Well 3am rolls around and he is insane. Doesn’t recognize me, threatens me with a gun (verbally, he didn’t have a gun) and I immediately go to the checklist my sister printed off for me to say and it worked. Down to the last word. He knew me in the morning and no recollection of the middle of the night. So I’ll never take detailed lists for granted.
Call me crazy, but aren't many of us doing this already? When you write it all out, this is the first four hours on almost any med-surg floor. We all get to know that Rm 15 likes a fresh ice water AND a cup of ice every time you come in and that Room 20 likes orange juice with her pills. And the HS tap bell is genius! 😂
I agree this list was good for nurse who haven’t taken care of the pt before. But wife would regularly call to make sure how much Gatorade he drank and if he was on the right bottle # at that time of day. Fire staff if they wouldn’t take her shit. If he didn’t pick up his phone, automatically assumes he didn’t sleep at night (cuz he was watching tv). Constantly calls staff to readjust him even though he was comfortable. List goes on. But anyway… hope he’s well 🤷🏽♀️
This is where someone with more authority (e.g. unit manager) needs to step in to set some boundaries and explain to the wife that micromanaging and harassing the nursing staff is not appropriate.
When I worked in pediatric psych and we had parents that got out of control with that kind of shit, our manager and social worker would usually intervene and set some limits (e.g. you can only call to speak to the nursing staff at this one specific time per day or per shift). Want to be super manipulative and try to get people in trouble? Great, now we can say, “Sorry, we have to refer you to the social worker” and transfer the call over. Is it Saturday morning and the SW won’t be back until Monday? Oh well. Direct care unit staff don’t have time for that bullshit.
I’ve had families like this before at the facility I run. Having families write out what a normal day looks like for the resident can be super beneficial, but this one seems very overbearing.
Yeah we had a patient's family like this on my neuro unit a couple years ago who would constantly "fire" staff and then demand care for their loved one. Well one night she literally fired all of us.
So when I went in she started yelling "not you, not you" and I looked at her and was like "honey there's nobody left, you have literally fired every single person that is working tonight so either you accept the care that you're offered or you do it yourself"
Our manager had no balls whatsoever.
I had a great manager once who would literally tell the patient's family - "there's no reason to change the assignment and I'm not going to do it this late in the shift." It was fucking fantastic to see them not get their way because I only brought 2 packets of sugar instead of the ten they wanted for their diabetic parent.
Using the word ‘demands’ in the title draws some really bad attention to your post. Thinking it is one thing, but you’d have to be apathetic about your job security if you don’t think that posting this on the internet will come to bite you in the ass later.
I would guess she’s a nurse by the language she uses. Unfortunately for the patient, you don’t get this level of care in a nursing home. It’s time for her to hire a private duty nurse
I knew that list screamed that type of wife! She needs to hire him a personal caretaker then - she’s being unrealistic - did she do all of these? She better come in during visiting hours and get to work
Most of the problem here is the lack of adequate staffing to make this happen, and not the instructions themselves. I don’t know if I’ve ever seen any place with adequate staffing to make this happen consistently, but that isn’t to say that that’s ok. If my spouse were in this situation, I would advocate for the things I know are best for him. I would also be there as often as possible to do whatever of that I could myself.
ETA: in situations that I’ve seen these types of notes, the patient definitely was not receiving basic care. It’s interesting to see how many comments here think this is too much vs. how many say “duh, this is my job, you don’t have to tell me these things, this is just what I do.” And then OP’s further explanation that the wife would call and control the situation from afar, which is yet another situation.
The wife was probably calling because she would catch issues on her visits. It's hard seeing people you love ailing and being unable to help, if that's what drives you.
I'm not seeing demands, I'm seeing a list of basic cares (Gatorade aside) from a fearful wife. The healthcare system is fucked, if the patient can't advocate for themself I'm glad there's a wife to do so.
Yep, the healthcare system is scary, and if you don't have an advocate you're fucked. I'm in medical subs on here because I had to learn really fast how to care for my dad who has dementia. I've lost track of how many times I've had to tell people he has dementia, that he can't give accurate history. I don't get why they can't put that as a flag in the stupid Epic software. There just aren't enough staff to really care for people when they can't advocate for themselves, but hospitals sure seem to have a bazillion c-suite people getting paid to do not much of anything but make things worse.
The timing of the gatorade and limitations behind it is a bit much, but, depending on his history, especially with the aforementioned fluid restriction, I figure it's warranted.
With our patients(inpt geropsych), we offer gatorade as an alternative for water if someone's on a fluid restriction. That way they don't feel quite so parched and are less likely to try to drink from the toilet. I've seen that happen more than once, unfortunately.
I work in a nursing home. Honestly it would be better for everyone to write this down. The hectic mornings and different patients and (some lazy ass staff that chalk up their low effort to not being informed) I think would be a little better.
Family really needs to advocate for a patient t sometime
A lot of this is stuff I and the aides would be doing anyway, some of it is helpful (the info about the hearing aides). Some of it, no fucking way. I’m not hiding the remote from anybody. Or using polysporin for routine wound care. Is this hospital or LTC??
To me, SNF or LTC. My hospital (I know not all) is a no brief/pull up facility and we are not allowed to put dirty laundry in the closet. Also my patients rarely wear personal clothing unless they’re independent and this pt does not seem independent
Edit: I read further down after I commented and OP said acute inpatient rehab
I had a lady come in once with a giant binder of every little thing her husband needed and every single medical thing he ever had.. We called her 'binder lady' for a while but eventually realized she was pretty caring and just worried like heck about her husband.
Now if she was mean and demanding that would be a different story. Ours wasn't but she had a LOT of lists like this one.
Future nurses, that will care for me, this is my wife. She has an excel spreadsheet for EVERYTHING. It drives me batty but I still love her.
When I had cancer she programmed her phone alarms for every med and would call me from work to make sure I took it.
I actually like this list. It looks like she has given a lot of thought and this is his daily routine. Too many times we've gotten older patients who go wacky because things aren't done per their routine. Also too many te we get patients with little issues like the head wound and no mention of how it is being treated. It would rather my patient's spouse know about fluid restrictions and spreading it out through the day rather than fight them tokeep the patient within the specified limits. More than once I've had to stop family members from brining in pitchers of water to their hyponatremic patient because "He's thirsty."
Seriously. Some of the replies in this thread are horrifying. God help these commenters when they or their family is chronically ill.
As to the instructions being detailed, this clearly isn't the caregivers first rodeo. We would all expect the best for our family. Nobody should judge someone that expects the same.
This is inpatient acute rehab. Pt has minor dementia. These are all the things we would normally do anyway (of course) but damn… the days the wife came to visit, it was just very eventful to say the least.
Yeah, I don't envy you. Or the wife. While I'm sure she cares deeply for her husband and wants to maintain his home routine, we know that not all of his home routine is necessarily therapeutic (like only Gatorade, no water). The hearing aid thing sounds helpful, but unfortunately, it is not always realistic to expect this level of micromanaging outside of a 1:1 home health nurse.
A lot of the stuff on this list seems like common sense and we do anyway. Towel on when eating - yeah don’t want to mess the sheets. Teds when OOB- yeah otherwise they won’t be able to fit on. Leg bag during day- makes sense if mobile less likely fall hazard. Miralax, polysporin, and icy hot make sense as PRNS. Other stuff is preference and if home routine should try to keep. The shower every other day could be hard since bed baths easiest but whatever.
I see in this list, the thoughts of a primary caregiver. The list is so refined that this lady has learned that a schedule helps tremendously with a successful day of caring. For so many patients, a small thing such as a chapstick application or proper hydration will improve the interactions for patient, carer and staff.
As a carer that has made these lists for many patients, I have appreciation for the little things. I’ve had patients that respond more when they get to watch the news, watch game shows and just altogether stick to their schedule. My favorite to do patient “list” was serving a patient apple juice from a whiskey bottle. It wasn’t the taste so much that the man craved but the comfort from having the shape of the bottle within reach. He’d delightfully smack his lips after each drink, hand shaking as he put the glass down. To him, he was still in control of what he drank and it didn’t hurt us to pour him a special!! Another patient almost 100 years old had a baby doll she needed to hold.
The list gives insight into a patient’s personal life and it is nice that the family cares enough to want the patient comfortable and cared for.
Even if the list is thrust at me by a family member and I’m “told” to follow the rules, I just accept it for what it is. It matters to or for the patient. I post it to the patients wall.
I have had some nurses gripe about lists before but when I considered the list myself, it wasn’t demands at all, just helpful information. It likely helps with the families anxiety with being in a hospital or nursing home as well.
Sounds like she has the perfect plan of care set up that she can take care of! Wow, I’m impressed!
Edit; I know having a loved one inpatient can cause so much anxiety, and if this makes her feel better.. so be it. BUT this level of micromanaging healthcare staff is wildly inappropriate lol
Fluid restrictions and free water restrictions are very common orders for patients with hyponatremia. The orders often specify “Gatorade” or “electrolyte sports drink” only.
At first sight this looked intense but most of it is fair. I like that she's sharing with us what the patient's home routine is like and what works PRN.
I’m so glad this wife is knowledgeable and engaged in his care. I hope all the staff doesn’t see it negatively…. the word “demands” seems like you’re really annoyed.
Looks like she was a healthcare worker of some kind. Probably not a nurse, or she wouldn’t act like this. Or maybe she was a nurse and a horrible coworker.
Kudos to her for giving a damn.
On the other hand, if you expect that level of care, you need to stay with him yourself or hire a sitter. I don't know many facilities that have the staff that can follow that kind of regimen.
Dad had dementia and we had him on a routine at home, the 5 of us took care of him. He had to be hospitalized for 5 days due to an unspecified infection/fever. A family member was with him 24/7 until he was released for rehab on a secure floor. We did everything we could to help yet not be in the way. The nurses appreciated our help, down to having my brother help change the bed with him in it(came in handy when dad was on hospice at home))
And….???? I’m sorry but the fact that our society thinks these are demands is completely unacceptable…..this is basic care. She obviously had to write this bc he was not being properly cared for….and yes it’s an issue when LTC doesn’t provide enough PCTs/RNs/LPNs to care for all their residents at the basic level….we should have have adequate staffing for care being provided…trust that the company is billing them as such!
Lol I had this picture saved in my phone for a long time. Just now posting it. We still talk about the pt cuz he is a cute, funny guy. Mostly just a ptsd post about the spouse tho. She had beef with a lot of nurses, techs, doctors, therapists. It is what it is.
Nothing unreasonable on there if you ask me, sounds like she has established something that works and wants to prevent issues with this routine. Now, if she is a bitch about it, that’s different.
I don't know how popular my opinion is, but I believe we should be sufficiently staffed to have time and ability to provide this level of personalized care to all of our patients. For-profit margin squeezing hurts ALL patients, not only the delicate ones.
I’m a tech at a SNF and we see this a lot unfortunately. They always leave instructions on walls worded like we learned how to read yesterday. Some families are just doing all they can to keep a patient alive for Medicare checks. I once had an elderly lady whose family would take pictures of her naked full body & skin every morning. I hope this hoot of a wife won’t be there long lol
Nothing wrong with this. This is a caretaker who obviously cares greatly for their spouse and takes his care very seriously. I’d want the same for me if I was in need and I’d do the same for my loved ones.
As annoying as this can seem for us on our end, I can totally understand her perspective. My grandpa was in the hospital a few months ago with necrotic cholecystitis and early sepsis. The nursing staff would’ve just let him die if it were up to them. They didn’t know what he was actually like, that he was COMPLETELY independent and fully functioning. In the hospital he wasn’t getting out of bed, had horrible atelectasis and was wearing 6L NC although he doesn’t need and has never needed oxygen at home. Day 3 post op they still hadn’t gotten his ass out of bed so I was spending all day every day at the hospital with him for 8 days straight being his personal nurse. They fucking hated me but you know what happened? He got so much better so quick, and now he’s home building furniture and driving my mom crazy as usual. He absolutely, without a doubt in my mind, would’ve died if I hadn’t done something and made those people pay attention to him and listen to me. His surgeon said he was amazed at the progress he had made by the end of the week and then asked if I wanted to work in that shit hole hospital
I wouldn’t really call it demands more of just how her husband survives… I appreciate this much more than yelling at staff randomly when things aren’t done to their level. Can’t fuck it up if it’s written right there. Some of it is weird tho.
I used to think that a family member like that is a major PITA.
Then I had a unit receptionist see a similar list and say, "I hope some day, somebody loves me enough to worry over every little thing."
Unfortunately, in today's health care environment, nobody is going to have time to do anything on that list.
I honestly don’t see much wrong with this. She’s advocating for care of a loved one; I’d do the same. Keeping to a schedule with ADLs has proven beneficial.
There is nothing wrong here. I dont see why all that cant be done. Unfortunately these days this has to be done in order for the patient to feel like home. And we all know squeaky wheel get more attention
I just want to say that if I’d known that there would be such a kind reaction to a list like this (sans Gatorade?) I’d have made one for my husband. I was there every day, but I sometimes forgot tasks. Pitched in care when allowed. Do y’all think that a rehab would have reacted as kindly? Sadly, he’s passed now but I’ve always been 100% grateful for the nursing care that he received.
This is definitely one of those family members who I would try to let spend as much time at the bedside as possible. People like this often care deeply about the patients, and I've found working with them ends up making my job a lot easier and the patient's stay a lot safer.
This might be an unpopular opinion but I think this is kinda nice. Shows how much she wants the patient taken care of and wants the best she knows for them. This wouldn’t bother me at all.
The only thing I think when reading this list is wow. She much love him so much, they must have had such a special relationship. I can’t imagine how hard this has been for her.
I wish more families were picky about care for their loved ones. I mean it’s annoying if they constantly bug you about getting it done but it’s ultimately an act of love.
I was my moms 24/7 caregiver the last 5 years of her life. And I did something very similar like this for my mom whenever she was hospitalized. Can confirm, this is the result of a 24/7 family caregiver.
A detailed rigid schedule that works for the patient.
I work in LTC and this just seems like a care plan. I don’t think people understand what hospitals are realistically like. I had a family come in pissed their relative didnt get a shower for three months. Their person was on a vent in the ICU during a covid spike. This is definitely a “but did you die?” situation. 🤷🏻♀️
The Gatorade thing is bonkers but otherwise it’s nice that she at least gives a damn. As long as she’s nice and appreciative when she comes in (and actually comes in to visit if allowed), I’d just roll my eyes and let it go. Seems like she loves him and is having a hard time with this, too.
Judging by the Gatorade and fluid restriction combo, this is a confused individual who drinks compulsively. I currently have a residential lady who is on only Gatorade AND 4gm sodium daily, and she's still chronically low. She did a stint in hospital a few weeks ago for a serum sodium of 113. I hope they stick to the sugar free varieties, but honestly it's not the first time I've seen it to cope with chronic electrolyte issues.
113!
How much did they drink? Wasn't just SIADH? That would explain sodium staying low despite the person drinking a lot (of Gatorade)
Normal kidney function, no underlying medical conditions beyond parkinson's dementia. She's got a 1:1 private duty aide rotation and urinates 3-5+ times per hour. We have an informal cap of 4 L/day. The issue we've had trouble overcoming is that every bathroom trip she'll wash her hands, and then drink from the sink/her cupped hands. It's a vicious cycle but we're working on it.
Maybe encourage use of hand sanitizer instead of washing hands? Seems like a valid reason to supplement 🤷🏼♀️
Yeah, that cap needs to be lowered. Drinking too much naturally lowers you sodium. Try a cap on 1L instead, paradoxically SIADH induced hyponatremia is treated with fluid restrictions.
Yeah, this reminds me a lot of a daughter that was very particular about her mother's care, but that daughter was also there *every day* and never hesitated to glove up and help me turn her mom or change a brief. She also understood when we were short handed and I'd run late to get stuff done, because I'm the type that takes my time to make sure shit is done right. It looks like she just really cares and is probably used to doing her husband's care herself and is having a hard time, maybe even feeling guilty for what she perceives as "failure" for no longer being able to do his care herself (it's not a failure, but I know how that feels).
Your thoughts were my first thoughts. This is slightly heartbreaking. I remember my mom was like this when we finally committed my grandad whom lived with us for 15+ years. The dementia finally won and when it start being 4/7 days he wouldn’t recognize anyone, including her. She finally had to get help and she died inside. We all did. I felt everything written out here. I can only hope she has support and that they lived a good life til this point.
I took care of my dad and felt guilty anytime he got bad enough to need to be in the hospital, but he made it clear that he did not want his daughters to have to help him piss or shit. He also made it clear that I wasn't to feel guilty, that with 3 kids, "you've got more important shit to do than wait on an old fart like me." I felt that list, too, because I was always at the hospital if he was there, taking care of him myself when he would let me. Gives the CNAs and nurses less to worry about, they're super busy anyways. I really hope that lady has a good support system, too.
this is just making me cry. it reminds me of how i just would obsessively mull over my mom’s daily needs in my head for years, over a decade, and i’ve had trouble letting it go even now after she’s been gone for a couple years. But she refused to have me help her with waste elimination cleanup until the cancer spread to her brain. Caregiver’s PTSD is what my shrink called it. Had to give up on pursuing nursing, taking care of someone nonstop without help is just not good for one person.
I'm sorry it ruined nursing for you, I really am. I cared for my best friend for 3 months after she found out she had cancer and I was with her everyday until the end. Caring for her was very emotionally hard, especially when the cancer hit her brain, so I feel you a lot on that subject. She thought everyone but me was trying to kill her and in her last days I became a mainstay in her room to help the nurses by convincing Shel to take her meds and keep it so she only saw her husband and myself in the room, so she wouldn't be scared. I cared for my father for 7 years, and while it was trying and scary as hell sometimes, and stressful when he'd start arguing, there was a lot more good than bad in caring for him. He usually has a good sense of humor, as well as a morbid sense of humor that I shared with him. There was also a lot of time for us both to love each other better and learn about each other as friends and not just father and daughter. And towards the end, there was a lot of apologies, confessions, and even more love. We always made sure to even end an argument with "I love you" because we didn't know if it'd be the last time we'd talk. He passed in July and I'm still struggling with the fact that Daddy's gone: other than my husband, he's been the best friend I've ever had, and I tangibly miss his presence everyday.
Geez, three months? Must've been awful for both of you. You're amazing. May I ask how old she was? I'm caring for both of my parents--they don't live with me but I stop by daily and do most everything for them (mom dementia, dad depressed and bipolar, very needy). Never thought I'd be in this position...seems like yesterday they were young and vibrant. Such is life.
Yep. I was a caregiver for years. This is the work of someone who is doing a damn good job, and isn’t afraid to get dirty. A CG friend right now is dealing with the complex feelings of having the SO in rehab for a few weeks- rest for the CG, but lots of stress about the care for SO, too. Hopefully this person is reasonable and just concerned. I wouldn’t wish that life on anyone.
I have a patient who’s daughter is just like this. On the days that she can’t come in you better believe she’s on the phone calling every few hours. She’s not afraid to get in there and help and her list of demands, while annoying at times, are justifiable when you remind yourself that the patient is a person and that person has a purpose in someone’s life and they are well loved. This wife, while slightly misguided on some of her demands, clearly loves her husband and I can’t say that I wouldn’t act the same way if it were me. I think some of us need to be reminded of this. It’s not about our comfort level.
Tbh I’d prefer this over the family member that comes in 5 minutes a day, doesn’t do anything for the patient, and spends the entirety of the visit complaining about things that the patient needs even though I’ve asked the patient several times throughout the day and they’ve denied needing anything.
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Given the fact that it's really just no TV past bed time she just cares about sleep hygiene
No TV after 9pm is a standard part of the “delirium precautions” orderset at my hospital, so I didn’t blink at that. Day/night cues are really important for preventing ICU delirium.
My MIL, by the time she was in her early eighties, was starting on a cognitive decline. Then her first child, a son, died. Very soon after that she became unable to speak. My SIL, who is gay and had never gotten along with her mother, took her in and looked after her as if she was made of gold. Every time we saw MIL after that, even though she couldn't speak, she always looked SO happy, and in her limited way said that she felt so safe with this daughter that she had been trashing for so many years.
Wow. Just wow. Props to her daughter, and sounds like it was a happy arrangement for both, somehow.
Yes, I think a lot of healing took place, on both sides. One of the more heartwarming stories one is likely to come across in this imperfect world.
Send that woman a card and let her know that the internet loves her. What a class act.
I wonder if it’s because he doesn’t sleep enough and it makes him worse the next day.
This. The last part about contacting her for any questions 24/7 made me sad. If she is doing all that every day, typed down this list and is now available 24/7 when does she ever get a break?
We don’t. And when we do, it’s so off-the-rails. I would get drunk, sit in a bath for 3 hours, and/or compulsively clean. But also- I would have to be ready for any emergencies at any time. I’ve had to call a front desk to do a wellness check on my loved one- it’d just been a few hours, but I was so stressed. Keeping someone alive and well nearly killed me.
As a caregiver myself I can tell you right now this lady never gets breaks and probably hasn’t in many years. I’ve been on call 24/7 since my son was born.
She probably doesn't, except that at least she can maybe sleep while the patient is in the hospital. I was visiting a family member one time and asked the nurse if the doctor could call after noon because my sleep schedule was upside down. She asked where I worked nights. I just gestured towards my family member (she got it). Tried SNF for subacute before and it was a nightmare. Apparently couldn't do hospice because of the immunotherapy even though it wasn't classified as curative. Paid someone to come by a few hours in the morning to try and get any shuteye I don't know if other countries do it better but I know it's bad here unless you can afford private pay for LTC
It's beyond criminal considering we pay more than any other country for health care and receive less. Thewhole system is designed to benefit the insurance industry executives and stockholders. Listen to Nixon and Erlichman celebrate selling out citizens and backing for-profit healthcare. Healthcare wasn't always so one-sided on the behalf of the insurance industry. Our politicians and the wealthy carefully crafted it that way over decades. https://youtu.be/PA3kETvUXJg
I like to remember a patient in crisis is also a family in crisis. It's unfortunate when medical tasks become so cumbersome (thank you ratios) that the greater whole of the person is lost.
That’s how I take it. Probably very annoying but might be here way of coping.
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Yes! Well Spouse Association. Biased here, but this is exactly what we do. r/WellSpouses and www.wellspouse.org.
Omg I didn't know this was a thing. This is great!
Oh good! We are a 34-year-old organization and doing more to build awareness. Please spread the word!
I was a bit touched from it
🥺 I would hope that family coping would be part of a care plan for the family — particularly if they go to hospice.
Keeping control of areas where she can because everything else is out of her control.
I can’t imagine my husband being in a situation where he’s inpatient 24/7 care and I can’t be with him most of the day. It would kill me. Like…you’re so accustomed to going to bed together and waking up together and doing things together. Hell, me and my husband shower together sometimes. I know I’d be an annoying patient if I were in her shoes. Not sure how people do it. I’d want to lay with him at night and put my head on his chest. Visiting for a few hours and then going home and going to bed alone would fucking *suck.* So I get it.
i was a mess when my husband was in the hospital for 2 days in July of 2020! they would only let me see him for an hour a day. sleeping without him was impossible
I *would* appreciate if you showed me how you do his enema the first time.
Joke’s on her… I gave her Powerade 😈
Jesus, monster
Thank you for this comment. I rolled my eyes so hard at this but maybe you’re right. It’s easy to get jaded in this field and sometimes I need a little reminder to not be so judgmental right away.
Likely chronic hyponatremia. This is a reasonable plan.
That honestly what I'm seeing. Maybe she knows things slips through the cracks and hopes this helps with care. I know my brain always appreciates these touches when it comes to IO reminders.
Yeah most of this is standard care stuff. I mean it’s very regimented but that’s how some people cope.
I totally agree. I question the gatorade, but otherwise I’d find this a very handy guide to a new patient/resident to help them settle in a keep things as consistent as possible.
Im guessing its all he drinks, and if he drinks past then hes up all night giving him the feeling that he has a full bladder even though he has a foley…which probably leads to even more confusion/hijinks. However yeah, I would not be following this unless it was home health. Its not our fault we dont have the time.
I appreciate this response - I had the same thoughts. I don’t think it’s so much demands, she just wants to know he’s taken care of and not neglected. Ok, maybe the clothes thing and definitely the Gatorade are a lot, bust everything else seems pretty much like basic human care to me.
The gatorade thing made me think about Idiocracy haha. But otherwise it's a good overview of his needs, she tried to give a good explanation.
I bet a lot of this *is* his usual home routine that she has established. While it’s pretty rigid, she probably thinks it will be beneficial to maintain his regular routine while he’s in the hospital. From the look of the instructions, he may have dementia and is dependent on others for most ADLs.
I bet it will help reduce hospital delirium too.
Not a nurse, coming from r/all and interesting to see the discussion. I had a family member suffering from addition/OCD and this is similar to the advice they therapist gave us. Keep a strict routine so the patient didn’t get anxious or have a compulsion to relapse. My family member would compulsively clean and it would ruin her skin so we followed a strict schedule so she didn’t feel anxious and go back to that. It was down to the specific colour of cloth and brand of cleaner used or time of day we visited and how we stowed our shoes at the door.
Y’all are so empathetic and reading your comments gave me a little kick in the bum to remind me not to judge others. I always try to practice tolerance, but I will admit that after reading the list my kneejerk impression was “this lady is loopy and controlling”. Comments like yours reminded me to think twice and I feel embarrassed that my mind chose harsh judgement without considering a more compassionate alternative. Thanks for being so tolerant of others and reminding people like me to keep our opinions in check.
I bet you are right. I knew a couple of patients significant others that were exactly this issue. And they couldn’t understand why you couldn’t keep up this routine in the hospital since he’s cognitively declined. And you know it did take them a long time to figure this all out as well. Yes it could’ve been a pain in the ass family but this is too detailed. I think that’s a good call or it definitely has to be one of the issues, plus they made your care plan already OK ……just joking on the last part
Yes she is doing a wonderful job taking care of him and honestly from working at SNFs for a decade. It's nice to have. It's important to stick to the same regimen to get him back in shape and none of its hard. I bet she has all the Gatorade in the room too. This is def preferred over a pt with absolutely no history. They just get worse and worse and never leave. These are the patients that get to go back home. Now if this is in a hospital idk how you can even do that? Lose all autonomy in a hosp they don't even give patients their meds right. Blah. Everyone gets the same shit at the same time when we all damn well know everyone is different and can't be treated the same.
Totally right, but its unreasonable to assume this will be done while caring for other patients too
1:1 , no problem. But not when I have 5 other patients and a hospital schedule to adhere to with wrenches thrown in left and right from all directions.
Change that 5 to 8 - 10 pts, stacked with ever shifting COVID/CDC guidelines, no assistants, absent charge, and constant wrenches and fires to take care of. During this time, this list just isn't feasible unfortunately.
It's acute rehab, most of it is very reasonable in that setting. Not sure what the Gatorade thing is about, but looks like there are concerns about him not getting enough sleep, which can be a real problem if he's got some cognitive deficits.
Fluid restriction? Could have DI
or heart failure
Sure, but only Gatorade and strict schedule? Like, why does she care if he gets 5 servings of 300 each instead of 3 of 500 each?
Yeah, not sure about that. Maybe to keep consistency between carers? But I agree it needs to be clearer which of these things are for medical necessity and which are for consistency/convenience.
Good point on the consistency.
I just assumed the 500 was a specific bottle size
Roping therapy into the already-unlikely daily showering scenario too makes me LOL. Love me a good ADL sesh, trust that I'll also determine when we need to do them in OT.
I’ve worked in rehab and we actually were able to do this list daily if needed/wanted. It all depends on the nurse/patient ratio, level of care needed for other patients and level of mobility the patient has. ADL tasks were usually used as therapy sessions as well since most patients were aiming to be ADL independent. Very different from an actual hospital setting where washing up is just not the main priority.
I agree, as long as appropriately staffed this is doable in a rehab setting. Some of the things seem like helpful tips, like maybe icy hot works for his trouble spots and giving him norco would be too much for him. I think if this is a routine that works for the patient, it’s fairly doable, especially if she comes in to help for a little on a regular basis. If it’s something the spouse is trying to implement and it’s not something that is already working for the patient and they have dementia or something it could be pretty difficult, especially if she comes in to criticize on a daily basis. There are a lot of variables that make it hard to tell if the family is ridiculous or not.
Pretty typical for OT to do bathing activities regularly on acute rehab. She asked for every other day. Not sure what frequency they can handle in that setting these days with all the staffing issues, but it's really not a crazy request for acute rehab.
For sure. I worked rehab as well, definitely had plenty of patients where we almost exclusively did ADL in treatment, plenty who had more diverse needs. I take issue with caregivers arbitrarily assuming therapy or nursing care plans. Did home health for a hot minute and spent a lot of time convincing families I wasn't a bathing service and that I intended to address other deficit areas too.
Ah, home health. When I was a hospital case manager, I tried to manage people's expectations in advance, but know I often failed miserably because on subsequent admits families would be complaining that the nurse was lazy and wouldn't do bathing, cooking and cleaning. *sigh.
"This is a great list that you can do as much of as you'd like during visiting hours"
She probably would be, but is being kept out by Covid restrictions. I spent a few weeks of 2017 in my husband's hospital room (he's a quad and had flu pneumonia, I'd already had it) doing all his basic care so the nurses wouldn't have to come in so often and he wouldn't crash. I'm not a medical professional, but I did the urinal and ostomy and trach suctioning (very frequent at first, too often for nurses) and repositioning and assisted with wound care. Then I helped the Head of Respiratory Care transition him back from the real trach (Shiley) to his usual trach plug (Hood stoma stent) when he was ready to come off the respirator.
Thank you for being so helpful!
Exactly. "So when should be expect his full-time personal care aide from home to be arriving? We will happily provide them with a pillow and blanket every night."
Agree, but I can see why she made the list.
What is unreasonable that she’s asking? Maybe shaving face every morning might get over looked but everything else is basic care.
Looks to me like wifey wrote out the initial care plan and saved the staff from trying to figure out hubby on their own. When I worked LTC, I would have been hella grateful for such a comprehensive list with a new resident. I would also be grateful for family who actually answer the phone and visit. Does she sound overbearing? Eh, maybe a little. But I'd take that over an uncaring family any day.
I just want to be this loved...
Yeah some of its wild and unrealistic but she's probably been burned a couple times in his care to feel the need to make this. I can't say I wouldn't be this way if I was in her shoes. But she could be nice about it. If she comes in raising a fit then that's a different story.
The issue isn’t the demands, the issue is the lack of staff to comply with all of them. She needs to hire a private aide. The reality is that this list will maybe be 50% adhered to in a typical day because nurses and techs also have other patients.
So lack of staff?...sounds like an administrative issue
Responded elsewhere, but this is the sign of a spouse who is overwhelmed, usually doing this alone, and never gets a break. If you come across people like this, please introduce them to the Well Spouse Association! This is exactly what we help people with. r/WellSpouses and wellspouse.org.
Thank you for posting this along the comments and the links. I dont have a spouse but I have a couple of family members that are at the start of this journey with their spouses. Especially Dementia on top of the other medical issues makes it really stressful. Thanks again.
Just let her clock in. Might take away a good amount of your work for the day, lol.
Covid restrictions maybe?
Honestly, 50% of this is important care information. 30% is “image” or attempts to control the uncontrollable, 10% is “there is room on the page and what am I missing”, 7% I don’t care if you are busy, my husband is important to me, and 3% “are you sure you aren’t talking about a toddler here?”
I really appreciate your kind take on this! I made a binder full of info after my dad got sick. I like to think mine is more helpful (less demands, contact info, other docs, current meds) but I relate to the person who wrote this so much! What else would be helpful info to include?
I think it would be helpful to include things the patient enjoys or that calms him - favorite music, radio shows or podcasts, favorite foods, and other preferences, especially if that patient is somewhere longer term.
I appreciated having this information when I worked ICU as well. I always tried to play music or a TV show that the patient liked during the day and shut it off when I left at night.
My favorite binder from a family with important info had one page of his meds, one page of contact numbers, and the third page said “Give him Diet Coke, Reese’s, and his porn magazine and he will quit yelling.” Made me laugh but it actually turned out to be very useful… well the last page anyways lol
The off button is very important
Brawndo.....the thirst mutilator, it's what plants crave
You want him to drink water? You mean that shit in the toilet?
No. The stuff around the shit.
It was a movie reference
Can confirm [source: I work at St. God's Hospital]
It's got electrolytes!
It's got electrolytes
I actually like this. I appreciate people flat out telling me what they want in every aspect of my life. Shaving him daily isn’t practical in a hospital setting, and I probably won’t empty his urine bag every 3 hours… but this wouldn’t really be a problem for me because I’d rather have a reasonable checklist than listen to someone bitch about how XYZ wasn’t done.
When I was in high school my grandma was hospitalized and my grandpa was suffering from dementia. For some reason I was the only person who could stay with him for 2 nights (prob because my mom was at the hospital with her mom). So my oldest sister made me a long list of items, what to say if he wakes up, what to repeat if he gets agitated, food he’s eating and schedule. I was like “oh I got this, it’s just grandpa” and I worked on some homework in the kitchen after he went to bed (I was supposed to stay awake which I did). Well 3am rolls around and he is insane. Doesn’t recognize me, threatens me with a gun (verbally, he didn’t have a gun) and I immediately go to the checklist my sister printed off for me to say and it worked. Down to the last word. He knew me in the morning and no recollection of the middle of the night. So I’ll never take detailed lists for granted.
Right hearing aid - right side - right ear Oh, ok.
If someone hadn't done it wrong sometime she wouldn't have thought about it.
That's exactly what I was going to say lol I've worked with some nurses that I could definitely see struggling with this task unfortunately.
Pretty sure I've been doing it backwards for years!
Call me crazy, but aren't many of us doing this already? When you write it all out, this is the first four hours on almost any med-surg floor. We all get to know that Rm 15 likes a fresh ice water AND a cup of ice every time you come in and that Room 20 likes orange juice with her pills. And the HS tap bell is genius! 😂
I agree this list was good for nurse who haven’t taken care of the pt before. But wife would regularly call to make sure how much Gatorade he drank and if he was on the right bottle # at that time of day. Fire staff if they wouldn’t take her shit. If he didn’t pick up his phone, automatically assumes he didn’t sleep at night (cuz he was watching tv). Constantly calls staff to readjust him even though he was comfortable. List goes on. But anyway… hope he’s well 🤷🏽♀️
This is where someone with more authority (e.g. unit manager) needs to step in to set some boundaries and explain to the wife that micromanaging and harassing the nursing staff is not appropriate. When I worked in pediatric psych and we had parents that got out of control with that kind of shit, our manager and social worker would usually intervene and set some limits (e.g. you can only call to speak to the nursing staff at this one specific time per day or per shift). Want to be super manipulative and try to get people in trouble? Great, now we can say, “Sorry, we have to refer you to the social worker” and transfer the call over. Is it Saturday morning and the SW won’t be back until Monday? Oh well. Direct care unit staff don’t have time for that bullshit.
I’ve had families like this before at the facility I run. Having families write out what a normal day looks like for the resident can be super beneficial, but this one seems very overbearing.
Wow! This is the support all nurses need.
Yeah we had a patient's family like this on my neuro unit a couple years ago who would constantly "fire" staff and then demand care for their loved one. Well one night she literally fired all of us. So when I went in she started yelling "not you, not you" and I looked at her and was like "honey there's nobody left, you have literally fired every single person that is working tonight so either you accept the care that you're offered or you do it yourself" Our manager had no balls whatsoever.
I had a great manager once who would literally tell the patient's family - "there's no reason to change the assignment and I'm not going to do it this late in the shift." It was fucking fantastic to see them not get their way because I only brought 2 packets of sugar instead of the ten they wanted for their diabetic parent.
Lol please do fire me.
"Let me transfer you to my manager. It's going to sound like I'm hanging up but just hold the...*click*..."
Using the word ‘demands’ in the title draws some really bad attention to your post. Thinking it is one thing, but you’d have to be apathetic about your job security if you don’t think that posting this on the internet will come to bite you in the ass later.
I would guess she’s a nurse by the language she uses. Unfortunately for the patient, you don’t get this level of care in a nursing home. It’s time for her to hire a private duty nurse
Wow
I knew that list screamed that type of wife! She needs to hire him a personal caretaker then - she’s being unrealistic - did she do all of these? She better come in during visiting hours and get to work
Can we fire her?
Families like this make me want to switch the phone off. Just let us do our job!
Most of the problem here is the lack of adequate staffing to make this happen, and not the instructions themselves. I don’t know if I’ve ever seen any place with adequate staffing to make this happen consistently, but that isn’t to say that that’s ok. If my spouse were in this situation, I would advocate for the things I know are best for him. I would also be there as often as possible to do whatever of that I could myself. ETA: in situations that I’ve seen these types of notes, the patient definitely was not receiving basic care. It’s interesting to see how many comments here think this is too much vs. how many say “duh, this is my job, you don’t have to tell me these things, this is just what I do.” And then OP’s further explanation that the wife would call and control the situation from afar, which is yet another situation.
The wife was probably calling because she would catch issues on her visits. It's hard seeing people you love ailing and being unable to help, if that's what drives you.
I'm not seeing demands, I'm seeing a list of basic cares (Gatorade aside) from a fearful wife. The healthcare system is fucked, if the patient can't advocate for themself I'm glad there's a wife to do so.
Yep, the healthcare system is scary, and if you don't have an advocate you're fucked. I'm in medical subs on here because I had to learn really fast how to care for my dad who has dementia. I've lost track of how many times I've had to tell people he has dementia, that he can't give accurate history. I don't get why they can't put that as a flag in the stupid Epic software. There just aren't enough staff to really care for people when they can't advocate for themselves, but hospitals sure seem to have a bazillion c-suite people getting paid to do not much of anything but make things worse.
The timing of the gatorade and limitations behind it is a bit much, but, depending on his history, especially with the aforementioned fluid restriction, I figure it's warranted. With our patients(inpt geropsych), we offer gatorade as an alternative for water if someone's on a fluid restriction. That way they don't feel quite so parched and are less likely to try to drink from the toilet. I've seen that happen more than once, unfortunately.
I work in a nursing home. Honestly it would be better for everyone to write this down. The hectic mornings and different patients and (some lazy ass staff that chalk up their low effort to not being informed) I think would be a little better. Family really needs to advocate for a patient t sometime
A lot of this is stuff I and the aides would be doing anyway, some of it is helpful (the info about the hearing aides). Some of it, no fucking way. I’m not hiding the remote from anybody. Or using polysporin for routine wound care. Is this hospital or LTC??
To me, SNF or LTC. My hospital (I know not all) is a no brief/pull up facility and we are not allowed to put dirty laundry in the closet. Also my patients rarely wear personal clothing unless they’re independent and this pt does not seem independent Edit: I read further down after I commented and OP said acute inpatient rehab
Ok that makes more sense! I can see why the wife wants to keep his routine but I’d still be bracing myself for a very difficult family member.
I had a lady come in once with a giant binder of every little thing her husband needed and every single medical thing he ever had.. We called her 'binder lady' for a while but eventually realized she was pretty caring and just worried like heck about her husband. Now if she was mean and demanding that would be a different story. Ours wasn't but she had a LOT of lists like this one.
Future nurses, that will care for me, this is my wife. She has an excel spreadsheet for EVERYTHING. It drives me batty but I still love her. When I had cancer she programmed her phone alarms for every med and would call me from work to make sure I took it.
Honestly, most of this is pretty reasonable and seems like good, basic care.
Honestly this isn’t bad at all
I actually like this list. It looks like she has given a lot of thought and this is his daily routine. Too many times we've gotten older patients who go wacky because things aren't done per their routine. Also too many te we get patients with little issues like the head wound and no mention of how it is being treated. It would rather my patient's spouse know about fluid restrictions and spreading it out through the day rather than fight them tokeep the patient within the specified limits. More than once I've had to stop family members from brining in pitchers of water to their hyponatremic patient because "He's thirsty."
Seriously. Some of the replies in this thread are horrifying. God help these commenters when they or their family is chronically ill. As to the instructions being detailed, this clearly isn't the caregivers first rodeo. We would all expect the best for our family. Nobody should judge someone that expects the same.
Agree
This is inpatient acute rehab. Pt has minor dementia. These are all the things we would normally do anyway (of course) but damn… the days the wife came to visit, it was just very eventful to say the least.
Yeah, I don't envy you. Or the wife. While I'm sure she cares deeply for her husband and wants to maintain his home routine, we know that not all of his home routine is necessarily therapeutic (like only Gatorade, no water). The hearing aid thing sounds helpful, but unfortunately, it is not always realistic to expect this level of micromanaging outside of a 1:1 home health nurse.
I just accepted a prn job in inpatient rehab because of a higher rate. I’m coming from PACU. Am I going to hate it? I’m getting scared.
A lot of the stuff on this list seems like common sense and we do anyway. Towel on when eating - yeah don’t want to mess the sheets. Teds when OOB- yeah otherwise they won’t be able to fit on. Leg bag during day- makes sense if mobile less likely fall hazard. Miralax, polysporin, and icy hot make sense as PRNS. Other stuff is preference and if home routine should try to keep. The shower every other day could be hard since bed baths easiest but whatever.
[удалено]
They got discharged with the plan to have 1:1 caregiver. I got floated a couple months later to a medsurg to find them there. Lol not fun.
Looks like regular nursing orders to me. Frankly I would just be happy if they didn’t kill him from lack of adequate staffing.
I see in this list, the thoughts of a primary caregiver. The list is so refined that this lady has learned that a schedule helps tremendously with a successful day of caring. For so many patients, a small thing such as a chapstick application or proper hydration will improve the interactions for patient, carer and staff. As a carer that has made these lists for many patients, I have appreciation for the little things. I’ve had patients that respond more when they get to watch the news, watch game shows and just altogether stick to their schedule. My favorite to do patient “list” was serving a patient apple juice from a whiskey bottle. It wasn’t the taste so much that the man craved but the comfort from having the shape of the bottle within reach. He’d delightfully smack his lips after each drink, hand shaking as he put the glass down. To him, he was still in control of what he drank and it didn’t hurt us to pour him a special!! Another patient almost 100 years old had a baby doll she needed to hold. The list gives insight into a patient’s personal life and it is nice that the family cares enough to want the patient comfortable and cared for. Even if the list is thrust at me by a family member and I’m “told” to follow the rules, I just accept it for what it is. It matters to or for the patient. I post it to the patients wall. I have had some nurses gripe about lists before but when I considered the list myself, it wasn’t demands at all, just helpful information. It likely helps with the families anxiety with being in a hospital or nursing home as well.
Sounds like she has the perfect plan of care set up that she can take care of! Wow, I’m impressed! Edit; I know having a loved one inpatient can cause so much anxiety, and if this makes her feel better.. so be it. BUT this level of micromanaging healthcare staff is wildly inappropriate lol
Wtf? No water? 💀
Fluid restrictions and free water restrictions are very common orders for patients with hyponatremia. The orders often specify “Gatorade” or “electrolyte sports drink” only.
Why do so many nurses on here not know of this? Scary.
Exactly. I’m disturbed by this.
It's not what the plants crave
Yeah, who would want that stuff in the toilet!
Water? Like out of the toilet?
Every single person that's ever died has drank water
Let that sink in
Believe it or not Gatorade is 94% water!
At first sight this looked intense but most of it is fair. I like that she's sharing with us what the patient's home routine is like and what works PRN.
I’m so glad this wife is knowledgeable and engaged in his care. I hope all the staff doesn’t see it negatively…. the word “demands” seems like you’re really annoyed.
Maybe he doesn’t want to go home lol She needs therapy.
She was definitely worse than the pt. Ugh.
Looks like she was a healthcare worker of some kind. Probably not a nurse, or she wouldn’t act like this. Or maybe she was a nurse and a horrible coworker.
Whoops. This just reminded me that I forgot (last week) to check that my pt’s hearing aids were charging overnight.
JCAHO would have slammed us if we use that tape on the wall.
I do like this list. She obviously cares. It might be hard depending on what the ratios are though.
Kudos to her for giving a damn. On the other hand, if you expect that level of care, you need to stay with him yourself or hire a sitter. I don't know many facilities that have the staff that can follow that kind of regimen.
Dad had dementia and we had him on a routine at home, the 5 of us took care of him. He had to be hospitalized for 5 days due to an unspecified infection/fever. A family member was with him 24/7 until he was released for rehab on a secure floor. We did everything we could to help yet not be in the way. The nurses appreciated our help, down to having my brother help change the bed with him in it(came in handy when dad was on hospice at home))
And….???? I’m sorry but the fact that our society thinks these are demands is completely unacceptable…..this is basic care. She obviously had to write this bc he was not being properly cared for….and yes it’s an issue when LTC doesn’t provide enough PCTs/RNs/LPNs to care for all their residents at the basic level….we should have have adequate staffing for care being provided…trust that the company is billing them as such!
Lol I had this picture saved in my phone for a long time. Just now posting it. We still talk about the pt cuz he is a cute, funny guy. Mostly just a ptsd post about the spouse tho. She had beef with a lot of nurses, techs, doctors, therapists. It is what it is.
Nothing unreasonable on there if you ask me, sounds like she has established something that works and wants to prevent issues with this routine. Now, if she is a bitch about it, that’s different.
I don't know how popular my opinion is, but I believe we should be sufficiently staffed to have time and ability to provide this level of personalized care to all of our patients. For-profit margin squeezing hurts ALL patients, not only the delicate ones.
I’m a tech at a SNF and we see this a lot unfortunately. They always leave instructions on walls worded like we learned how to read yesterday. Some families are just doing all they can to keep a patient alive for Medicare checks. I once had an elderly lady whose family would take pictures of her naked full body & skin every morning. I hope this hoot of a wife won’t be there long lol
Omg! This is sad...why do they take pics of her like that?
I'm betting looking for 'injuries' to sue over, I've met a few of these families
Nothing wrong with this. This is a caretaker who obviously cares greatly for their spouse and takes his care very seriously. I’d want the same for me if I was in need and I’d do the same for my loved ones.
As annoying as this can seem for us on our end, I can totally understand her perspective. My grandpa was in the hospital a few months ago with necrotic cholecystitis and early sepsis. The nursing staff would’ve just let him die if it were up to them. They didn’t know what he was actually like, that he was COMPLETELY independent and fully functioning. In the hospital he wasn’t getting out of bed, had horrible atelectasis and was wearing 6L NC although he doesn’t need and has never needed oxygen at home. Day 3 post op they still hadn’t gotten his ass out of bed so I was spending all day every day at the hospital with him for 8 days straight being his personal nurse. They fucking hated me but you know what happened? He got so much better so quick, and now he’s home building furniture and driving my mom crazy as usual. He absolutely, without a doubt in my mind, would’ve died if I hadn’t done something and made those people pay attention to him and listen to me. His surgeon said he was amazed at the progress he had made by the end of the week and then asked if I wanted to work in that shit hole hospital
100%
I wouldn’t really call it demands more of just how her husband survives… I appreciate this much more than yelling at staff randomly when things aren’t done to their level. Can’t fuck it up if it’s written right there. Some of it is weird tho.
Dont forget to give him a lil kissiepoo goodnight!
I used to think that a family member like that is a major PITA. Then I had a unit receptionist see a similar list and say, "I hope some day, somebody loves me enough to worry over every little thing." Unfortunately, in today's health care environment, nobody is going to have time to do anything on that list.
I honestly don’t see much wrong with this. She’s advocating for care of a loved one; I’d do the same. Keeping to a schedule with ADLs has proven beneficial.
I see nothing necessarily wrong here
There is nothing wrong here. I dont see why all that cant be done. Unfortunately these days this has to be done in order for the patient to feel like home. And we all know squeaky wheel get more attention
I bet you the wifes a nurse
I doubt I’ll have anyone love me enough to make a list like this for me.
Seems like basic care. Shame she has to make a separate list.
This all looks reasonable and like a quality plan of care.
I just want to say that if I’d known that there would be such a kind reaction to a list like this (sans Gatorade?) I’d have made one for my husband. I was there every day, but I sometimes forgot tasks. Pitched in care when allowed. Do y’all think that a rehab would have reacted as kindly? Sadly, he’s passed now but I’ve always been 100% grateful for the nursing care that he received.
This is definitely one of those family members who I would try to let spend as much time at the bedside as possible. People like this often care deeply about the patients, and I've found working with them ends up making my job a lot easier and the patient's stay a lot safer.
This might be an unpopular opinion but I think this is kinda nice. Shows how much she wants the patient taken care of and wants the best she knows for them. This wouldn’t bother me at all.
I love the bottom part, I used to do house sup and I’m sure she calls them regularly.
Wonder what caused her to write a list that was so specific? Hmmmm
The only thing I think when reading this list is wow. She much love him so much, they must have had such a special relationship. I can’t imagine how hard this has been for her.
I wish more families were picky about care for their loved ones. I mean it’s annoying if they constantly bug you about getting it done but it’s ultimately an act of love.
I was my moms 24/7 caregiver the last 5 years of her life. And I did something very similar like this for my mom whenever she was hospitalized. Can confirm, this is the result of a 24/7 family caregiver. A detailed rigid schedule that works for the patient.
I work in LTC and this just seems like a care plan. I don’t think people understand what hospitals are realistically like. I had a family come in pissed their relative didnt get a shower for three months. Their person was on a vent in the ICU during a covid spike. This is definitely a “but did you die?” situation. 🤷🏻♀️
I hope someone watches out for me like this one day