Pediatric patients...parents are KILLING me!

Nurse4life2006 · Aug 13, 2019

On 8/29/2017 at 5:01 AM, smartnurse1982 said:
I am pretty sure that is not true.
It is the state board of nursing that determines what the nurse can and cannot do.
For example,I had a family that tried to make me give a OTC med that was not prescribed for the patient. Told them over and over I could not do that but they were welcome to.
I also told them I would not take a vented/trach/NGT child outside for a walk without a Doctor's orders.
But you seem like a reasonable and awesome parent from your posts!
I think some of the frustration on here is due to some of the bad apples out there,which lately there seems to be a lot more of now.
I do not know what has changed,but things were so different when i started out 10 years ago as an LPN.
Like some parents will watch you struggle to place their 100 pound child into a wheelchair without offering any help.
I think it is expected that the parents will help out somewhat with the nurses.
The only time I need help is with transfers,and with some families it is like pulling teeth.

Emily Lou · Apr 17, 2022

I am a single mother of my disabled son. Some of these comments. Remind me of the 7 RNS/LPNS, I fired.

I've had bottom of the barrel nurses. Ones whom openly admit they choked their daughter for sleeping with her bf to one having his son hide in her car. Abide and leglect. To the pt, I had to get cameras. I can't trust any of them. They all have lied. Are late and think it's okay bc my job isn't set hours. (No it isn't okay to be rude 90% of the time and you're getting paid for it). It's a slap on the face. It doesn't matter if I sit on the toilet all day or sleep! A job is a job. And nursing is their job. IDK any other job that allows me to be late every day, day after day. I wouldn't get moved to another location. I'd be fired.

Second... they know about the cameras. I shouldn't need them to begin with. Do you think I like worrying about my son. No. They play on their phones ALL day or laptop ( notes don't take 8 hrs(, lie to my face, ignore my son and don't aknowl3dge them let alone spend 4 hours per day playing with them! I am hurt and digusted. Every new interview-- I say time is very important. Wearing a mask if not vaxx. Giving my son attention. Don't let him unattended. He's behind on crawling but he CAN move fast.

About to fire the 8th one. Same stuff. Why even work this field if you hate it? We as parents are not all "lazy".

Emily Lou · Apr 17, 2022

FYI I work. I also need a break myself. I play with my child. Read to him. How I'd that too much to ask for. That isn't lazy. And if I wanna be lazy I sure can. A job is a job. Inyresg them kindly and its abused too.

JessH26 · May 7, 2022

On 8/17/2012 at 7:00 PM, tri3mom said:

I know it must be frustrating to see your client's parents relax and go about their life as "normal" people, all the while you are left caring for their own child in what seems to be a prison...right? Have you ever thought that these parents NEED you to care for their child so that they CAN do a yoga class, watch some TV or go out to dinner? Granted, they probably "get away" to a job, some may even be stay-at-home parents, but then it is full-on with no break 24/7...FOREVER. Blessed are those home health providers that give some respite from never ending care to allow a snapshot of "normal" life for special needs parents! It may seem to inconvenience you, but to a parent that has a special child, being able to go to a gym, eat dinner or quietly engage in down time is a time-limited gift! If it wasn't for you (or other home health providers), these parents would NEVER get a "break". Nobody ever signs up for a child with special needs...but you love that child, and martyring any and all personal time to be with that child is no more healthy than being a "helicopter" parent to a typical child. This is YOUR job, this is what YOU signed up for...not these parents! Be proud that you can give these parents a taste of what most "normal" parents experience! You can leave at the end of your shift, and you can change jobs...these parents are here to stay.

I know this all too well, because I am a (single) parent of a child with special needs. I have been getting home health care for several years. Sometimes, I am in school in pursuit of my RN, sometimes I am working...but many times I just need a break! It hurts to move 75 lbs all day long, it is exhausting to constantly travel to appointments, it is upsetting to put my other child on hold, it is tiring to have interrupted sleep, and it is impossible to work on therapeutic exercises while managing everything else. These special kids do not get play dates or sleepovers like typical kids...nobody wants to care for them but their own parents and hired help. If you do not want to be that hired help, you best change your job! There is nothing I dislike more than to RELY (because there is no one else) on home health providers that do not embrace the care of my flesh and blood. Your job is VERY important...even if it is just to sit there in the living room, watching TV, just in case....

I agree 100% with you. My nephew has Down syndrome, a geriatric feeding tube, and sleeps with oxygen. My sister has not had a full 8 hour sleep at night since he was released from the hospital. She is a stay at home mom, and yes she will sleep when the respite worker is there. That’s the only time she has to sleep or rest.

Crystal-Wings, LVN · May 23, 2022

I’m so glad I left private duty. I got sick and tired of dealing with parents just like you. We didn’t go to nursing school to figure out what games to play with your child nor are we the “help”. If you’ve gone through 8 nurses perhaps it’s you who is the problem.

TravelnursePA · Jan 31, 2023

To Emily Lou....

Emily Lou said:

I am a single mother of my disabled son. Some of these comments. Remind me of the 7 RNS/LPNS, I fired...[...]...About to fire the 8th one.

No it isn't okay to be rude 90% of the time and you're getting paid for it.

It doesn't matter if I sit on the toilet all day or sleep! A job is a job. And nursing is their job.

Notes don't take 8 hours...

..ignore my son and don't acknowledge him, let alone spend 4 hours per day playing with him!

Give my son attention. Don't let him unattended. He's behind on his crawling but he CAN move fast.

Every new interview-- I say time is very important. Wearing a mask if not vaxx. Giving my son attention. Don't

Emily Lou....I just posted certain parts of your comment that I wanted to respond to. Overall, given the amount of nurses you've been going through, and some of your word and phrase choices, I have to say that it seems as though you see nurses as beneath you- and like you are their boss ("interview", "fired", and your bossy tone). Our agency has us meet with a potential patient and family ahead of time (prior to a first day), to see if we BOTH feel it would be a good fit - for ALL of us. The nurse has a say as well, and I have turned down some patients due to caregivers personality that I don't think would "click" with mine, or the home environment was loud and chaotic, very unorganized and dirty. One of the nursing duties is to provide teaching, but there are certain parents that are easy to tell pretty early on if they are the type to be receptive to teaching of any kind, even in the form of recommendations or advice. There are a lot of parents who believe they know more than every nurse and doctor, and while they do know their child best, they are often not open to any new ideas or ways of doing things (even if it's the way the nurse always performs certain aspects of her job). I will usually not work with those parents unless I really need the work, but will likely continue to look for another patient in case my feeling is correct. And if you don't wish to have a nurse back, you tell the office you don't want them back, but it's not really "firing" them. Our boss is the company we work for, not our patients' parents.

While you want your nurses to spend every minute caring for your son ("Do not leave him unattended"), when do your nurses get to go to the bathroom? Or eat something? And while charting does not take 8 STRAIGHT hours, we are supposed to be charting throughout the day. Agencies probably differ slightly in their charting requirements, but in addition to a 7 page electronic assessment documentation (including their comprehensive head-to-toe, clicking many boxes that don't pertain to your child's issues, charting more than you would think-- many many details...the same ones every shift!), then we have to type up freehand notes every 2 hours. Charting takes up a HUGE chunk of time that parents really don't seem to understand or realize that we NEED to have time to complete before we leave.

There seems to be an enormous misunderstanding of a home care nurse's (private duty/shift work) responsibilities during our shifts. I would refer all parents to review your copy of the PLAN OF CARE (POC) from the nursing agency. That includes all of the doctor's orders for us, the nurses, to follow. THOSE are our "to do list" so to speak. If something on there is not accurate, we need to have a doctor's order to add or discontinue something (medication, treatment, etc.). The POC may or may not include things like bathing, brushing teeth, preparing food, etc. That doesn't mean we can't do anything beyond our POC, but we FIRST have to complete what's on that, including above all else, that your child is safe, and document everything. Sometimes all of this can take up the whole shift -- the ACTUAL nursing care. Nursing care is not running after your child, following them everywhere all day long, entertaining them for 8 or 12 hours straight. I say this, but I still play, sing songs, etc. with my patients, as I also WANT to have that rapport with those patients (my current patients are mobile, with no to minimal cognitive delays). However, the parents are home getting high, they leave him in his crib with a diaper that leaks diarrhea and just put the TV on to wait for me, everything is unorganized (even after helping them to organize). Dad plays video games in his room all day, screaming obscenities at the TV and yells at child if she wanders in and touches any of the food and drink they have all over the place or anything with his gaming system. If something even drops on the floor, mom wouldn't pick it up because she knows I would (now I don't). She works but makes herself busy on her days off to avoid spending time with her child. One of her days off is always spent in bed with a "migraine" (watches TV all day). Neither parent spends ANY quality of time with this child AT ALL. Filthy floors, sink full of dirty dishes every day, starting to look like hoarders. But no one lifts a finger to help care for the child because I'm there. I finally told them that I have a lot of stuff I need to get done and they need to watch her. We are there to PROVIDE NURSING CARE above all else and teach parents to care for them if they are not comfortable. I talked to my agency and they agreed that it wasn't right, that I was being used as a babysitter. It would greatly help if the agencies discussed this with families at the very beginning so they understand the parents aren't meant to disappear when we arrive (unless we are there so the parent can go to work).

I had an infant with a G-Tube and other issues many years ago with home care nurses (prior to becoming a nurse). He was not allowed to come home until we were educated on his care and showed that we knew what to do to care for him. But I was ALWAYS with the nurses when they were there, I never ever left them to care for my son and wash my hands of my responsibilities during their shift. They were the nurse, I was the parent. We worked together and sometimes they took over if I had to tend to my toddler.

OK, I think this got long enough!!

Kitiger, RN · Feb 3, 2023

TravelnursePA said:

"There seems to be an enormous misunderstanding of a home care nurse's (private duty/shift work) responsibilities during our shifts . . .

. . . But no one lifts a finger to help care for the child because I'm there. I finally told them that I have a lot of stuff I need to get done and they need to watch her. We are there to PROVIDE NURSING CARE above all else and teach parents to care for them if they are not comfortable."

You seem to imply that the nurse is there to assist the parent, while teaching the parent how to care for their child. I must respectfully disagree with this.

During your shift, YOU are responsible for the child. You are there to give the parents a break.

Here are some goals that I wrote up a while back:

1) To provide home based skilled nursing care of the medically fragile child, keeping him healthy and safe while promoting normal growth and development and keeping family life as normal as possible. To help his parents become competent, confident caregivers while allowing them to have times of respite.

2) Keep my patient safe: "Normal child" safety issues, issues specific to this child, basic medical problems, problems that his parents can tell me about.

3) Keep him healthy: skillful care, parent teaching, PRN.

4) Promote normal growth and development, prevent further disability, regain lost ground when possible, work with Parents, PT, OT, Speech Therapist, Dietitian, etc.

5) Make his life happy and interesting: play with him, doing things that he enjoys, try to make therapy fun; give him choices when appropriate, read to him, talk to him, tell him stories and write down his stories, include siblings where appropriate

6) Help his parents become competent, confident caregivers: identify their abilities and skills (strong points), encourage them by pointing these out. Learn from them, identify deficits in motivation and try to discover the reason, work with parents to identify goals & ways to meet those goals, identify and address knowledge deficits

7) Allow his parents to have times of respite: give skillful, competent care, allow them to have their own space, encourage them to take time away, respect their choice to check in on you.

? Make his parent's load easier to bear: do routine equipment cleaning and maintenance, keep child's area neat and tidy, allow parents to do as much as they want to do (don't just take over).

9) Be aware of their losses and stresses: their child's disease and/or disability (the day to day care), the loss of a dream (that their child will grow up healthy ... or even grow up!), loss of freedom, of time (every minute scheduled), lack of sleep, feeling alone, lack of physical help, lack of friends who understand, financial difficulties, potential marital problems, difficult decisions that have to be made (Code or No-Code, Treatment goals, What treatments are OK, Which school to get the help he needs while letting him have as normal a childhood as possible.)

Be ready to help them deal with their losses. Listen with empathy. Allow them to talk it through. Allow them to find their own answers. Help them find the information they need. Inform them of support groups, both community and national support groups.

Kitiger, RN · Feb 4, 2023

Kitiger said:

7: Allow his parents to have times of respite: give skillful, competent care, allow them to have their own space, encourage them to take time away, respect their choice to check in on you.

? Make his parent's load easier to bear: do routine equipment cleaning and maintenance, keep child's area neat and tidy, allow parents to do as much as they want to do (don't just take over).

I don't know why my computer put in this smiley face with sunglasses. It did that with a lot of the numbers, and I thought I had removed all of them.

My main point was #7; Respite for the parents.

TravelnursePA · Jul 21, 2023

I'm sorry for the delay in my reply. At the time, there was too much I wanted to say and I just couldn't (or maybe didn't want to) at the time and I ended up not coming on here since. But just to give a response, I wanted to thank you for your time in your reply and all the points you made. I do agree with them and these are things I incorporate into my time spent with my patients and their families. In re-reading my comment above, I didn't make it clear, but I was describing 2 different patients and their families. I ended up choosing not to go back to one of them because the mom got mad at me after we needed to leave for her son's doctor's appointment and her boyfriend wasn't back with the car, so she asked if I could drive us there. We are not allowed to do that, but I had gotten permission before for my other patient because that family doesn't have a car (mom doesn't drive) and my pt needed to go to the hospital. So I told this mom that I would have to call to get permission from my office first, but then I asked her if she had another corificeat we could take. She said "No, I'll just hold him on my lap. It's only down the road." I didn't say anything. And it's not just don't the road, it's about 10-15mins away, but regardless, she could tell I had an issue and said if I wasn't comfortable with it, she'll just call an Uber. I said I wasn't comfortable, as that's not safe for him and suggested calling to reschedule the appointment or calling her boyfriend to see if he was going to be back soon. She just called an Uber and wasn't talking to me. When Uber got there and I went to leave with her, she just took the child and the bag I packed and said it was just them going (not me). I was done for the day, after only a few hours into my 12 hr shift. She continued to have a chip on her shoulder with me after that and start arguments whenever I did anything or suggested anything, saying very rude things that were out of line. So I refused to go back and be treated like that. That was months ago and I still miss her son, as I love my patients and get attached to them. He was the cutest, sweetest and smartest little guy and it was a hard decision because of how I felt about him.

In regards to your points though, especially your main point about being there to care for the child completely and provide respite - while I do agree with this, I also think it depends on each case and circumstance. For instance, my other case, I've been with her for about a year and a half and she is 2 1/2 now. While reading through your response, I kept thinking how it all sounds good on paper..... "in a perfect world" ....but it's not a perfect world and even though my heart goes out to any parent who has to deal with the difficulties of health issues and all the mental, emotional, and physical pain and burdens that these issues can bring, the fact is that not all of these parents rise to the occasion. Not all of them were good parents before and the health issues and stressors they bring can cause some to be worse parents, depending on the person. Unfortunately I believe that is the case with my pt now (and the main one I discussed in my comment). There are 3 adults living in that home and 1 watches tv allllllll day long from the time she gets up to the time she goes to bed (gmom in her 60's). She's a hoarder, she yells a LOT at everyone and doesn't care what any doctor or me, or ST, OT, etc. orders, suggests, recommends..... she thinks everything is "stupid" and she will do with the patient what she damn well pleases - even behind mom and dad's back, she doesn't care. Dad is in his room the ENTIRE day on his bed playing video games and he has his door open, yelling and cursing with the F bomb flying off and on all day. Mom is the only one who works (dad refuses), and she walks about a mile away to her job. She works 40hrs/wk and that is her reason for not spending time with her daughter - because she's too tired. She is home by 3pm and will make dinner, then they all eat in front of their tv's. Mom and dad eat in their bedroom so she can watch dad play video games and she has big headphones that she has on 99% of the time to listen to books on tape (about warewolves). They all stay in these spots until it's time to put their daughter to bed around 6:30ish, which they do and then go to bed. There is no playing with her, no stories, playing with her toys, she would NEVER sing to her. She won't even hold and cuddle with her and neither does dad. Grandmom will only when the little girl wakes up from a nap (which is wherever she falls asleep... usually on the living room floor). She'll climb up and cuddle with grandmom and usually fall back to sleep a little more. I'm 100% serious when I say they do not want to do anything with their daughter. They NEVER brush her teeth - EVER!! I am the ONLY person to do it and I'm only there 3 days a week. I have been telling them for months that she NEEDS to see a dentist as she has signs of tooth decay everywhere, and she needs her teeth brushed twice a day, everyday. Both parents have dental problems. Months later, no appointment. They are non-compliant with her feedings and meds but lie to me about it (even the gmom has confirmed this to me). If nursing wasn't in there, this child would be neglected and nursing won't always be in there. So I'm very nervous about this little girls future. I have spoken to those I needed to but it's out of my hands and because her needs are being met, she is not currently neglected so nothing can be done. She will soon have a transplant. They don't clean - ever!! I will finally clean (like on all fours scrubbing their kitchen floor) because I can't take it. I always clean my patient's spaces but things aren't baby-proofed, despite my countless suggestions, and things like their kitchen trashcan will get moldy with ants crawling around and they'll still have trash piled up and dishes piled up everywhere. They don't understand things after explaining so many times - or they do but they don't care, I just don't know. I have tried SO many different techniques to try to get through to them about safety, potential risks, appropriate toys for her age and developmental stages and milestones and support groups, books, on-line books, YouTube videos, etc Literally anything I can think of to help them gain some parenting knowledge because they really don't have a clue about any of it. They both escape all types of responsibilities, around the house and with the patient. And mom used to complain that she couldn't spend time with her daughter because she had to wash all her syringes and bottles and prep her meds, call her doctors to make appointment, then call and schedule transportation to those appointments, call to refill her meds, call the supply company to reorder what's running low, etc. She seemed so upset about it and of course I offered to take every single one of those things off her plate and do them all, so she could spend time with her child. Instead she stays in her room on her day off or after she's home from work and spends no time with her at all. I called her out on this and asked if she'd like to spend some time with her little princess while I do "abc and xyz", reminding her that's why I took on some of those extra tasks. She will go in the child's room and get a ball or something and say a few words to her then her daughter runs out of the room with the toy and the mom stays in the room on the floor and just goes on her phone.... doesn't move a muscle. She'll call out her daughter's name a few times to make it seem like she's trying but won't get up won't go after her, won't really try to do anything. It's pathetic to be honest. I really wish everything you mentioned worked on every family but there are some that just refuse and will do things their way no matter what.

Emily Lou · Feb 21

Edit: I'm the mother above. My son is now 3. He's had 10 surgeries. I'm still a single, mother, AND full-time nursing student.

When I wrote my original post, I was upset. I am no better then anyone. I agree with 2 of you. Thank you for understanding and posting the duties of said nurse. ?

I was never a helicopter mother. Negligence wad happening DAILY. I'm thankful it's over. There are good nurses and not so good aka bedside, performing duties. Performing practices within scope. Etc.

If you're NOT a special needs parent--- you don't understand how nice it is to get a BREAK. There isn't a dating life. Nothing. My date night, is running to the grocery store by myself.

It's studying ATIS & Foundations; to provide a life for my son.

My son is my life. Hence the momma bear. I expected the same kindness and treatment as I provided. I didn't except anything in return but I did expect JOB duties to be performed. I never was the mother whom got mad if they ate lunch, needed to use the restroom, etc. LOL. That's nuts. I'm not crazy. LOL.

Some of the comments are absurd. You have zero idea of what some of them did or didn't do. Basic duties. It made me saddened and sickened, sometimes. It wasn't because they were busy with chating.... they were glued to their phones, abusive, and didn't appear to want to be there.

Once again. This doesn't apply to everyone. It wasn't personal. It was venting because I felt so alone and couldn't fathom ignoring anyone's child. Maybe there was burn out.

P.s. don't judge me and presume you know me from a snippet of info nor a situation you were not there for. I wasn't rude to anyone whom cared for my son. Was I fed up? yes! Also, unless your special needs child was neglected, don't assume. Not all of us parents are horrible "Karen's " either. ?

And thank you to the nurse that kindly outlined the duties one would perform in home health care.

I'm going into this field now and have been for the past 2 years. I love it. I love providing for others and helping. I'm going to the the nurse that I wanted for my child.