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Thread: New Here and Seeking Answers, Support

  1. #1
    Junior Member Trauma's Avatar
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    New Here and Seeking Answers, Support

    For over 2 years now, I have worked as a home health care nurse. I have witnessed some of the saddest stories - as in the worst things you could ever imagine happening to your family as I met each of my SCI patients. For reasons of confidentiality, I can't divulge specific details about my patients. But I need a place to come to and get out my own frustrations where someone will understand. My Husband, the wonderful man he is is very supportive and has een met some of my patients and their families. But he can't be expected to endure me talking all the time about my frustrations!

    No one in my family is SCI. But I consider my patients to be 'family' in many ways. I don't know if my posts will be welcome here, as I understand that some of you may have very valid gripes with nurses or aides you may have coming to your homes. But I came here wanting to learn more, hoping to find frank discussions on the stress of caring for SCI individuals. Anyway, I thought I'd offer a disclaimer that some of my gripes will be about the parents/legal guardians of the patients - and I wanted to make sure that was OK.

    I am at my wits end. I am ready to quit my job after today, really after a long string of mind-numbing, deeply frustrating events in the past two years in HH. I didn't quit because I care too much about my patients - I have thrown so much of my spirit into caring for them that even though their parents/grandparents (and even the patients themselves!) sometimes drive me crazy and do downright mean and nasty things to me & the other nurses - I just can't bring myself to quit. Nor am I honestly finding any better ways to cope with certain aspects.

    I know I am burnt out. I can't even imagine what the family must be feeling - at least I get to go home! But, like clockwork, I come back and I'm there for holidays, many times night shifts. I drive through blizzards (literally!) at night to get to their homes, come in even when I'm not scheduled to help with a bath & trach tie change, I respect their homes, their privacy and their property, I genuinely care for their children (perhaps more than I should - I get too close), I do small things around the house to help (dishes, dusting, wiping things off, etc) and never mention a word about having done it (till now). I bake for them, pick up diaper wipes or toys or special cushions for them.... No, I don't deserve any awards, but I would like to think that I could at least get some respect as a professional who is there for a reason other than emotional punching bag or psychotic family member whipping girl....

    It sure sounds like I'm playing the victim a bit here. I'm aware. But I guess this is how I really feel inside after some of the things I go thru with these families. Not to mention the guilt for getting upset at all - after all, aren't I, as the nurse, the one who is to have compassion and empathy? To put my own feelings aside and always be understanding? After all, look at the horrible tragedies that have befallen these people! Their entire lives are changed - irrevocably, forever. And here I am, upset because "Mom" had a spaz fit on me because she couldn't find where I put the thermometer (in the usual place), or because I put the wrong chux pad under him (criminy, they're there to catch poop, not line the Pope's Holy Robes!), or whatever.... But here I am, doing the best I can to do a good - no, excellent job in caring for my quads. And all the families can do is nit-pick and find fault.

    I feel bad for them but there are times when I feel like saying, "Grow up, and quit tryng so hard to control everything! You can't help it this happened to you, but people care and are here to help you, so quit being so testy and LET them!"

    I can understand miscommunications and mix-ups. I can understand the nurse having one opinion and mom or dad having another as to how significant a change in a patient's condition is, or how to solve certain problems you run into every day with caring for SCI patients. What is bugging me the most today is how a family member can just outright lie to so many people involved in the care process - from the nurses to their supervisors to the respiratory tech all the way down to the guy who fills the O2 tanks, and wind up turning people in this team against each other, make certain ones look bad. Today, this particular family member (Pt's 'grandmother') outright lied to my supervisor on the phone IN FRONT OF ME and said that I'd never pointed out some edema I'd noted in her grandson (the patient.)

    And this is after I voluntarily worked X-mas Eve day, X-Mas day and New Year's Eve (don't worry, only one of those days was holiday pay, so no it wasn't greed.) This is after I have stayed late numerous times because she woke up late but still wanted to get a shower, after I have done dishes piled up for days in her sink (kinda had to to wash the child's equipment!) mopped her floors, and most of all just genuinel cared for this angel of a little boy. She lies about me, and did her darndest today to make me & the other nurses look bad - basically playing what my boss called the "Blame Game."

    She's taken way too much on, way more than she or any one person could handle, wasn't that stable to begin with, won't let anyone help her because she wants to be in omnipotent control of this little boy's care. But she can't handle it all. And where she's slacking off/forgetting about/mishandling, she is finding ways to blame on the nurses. She has talked about suing people. Well, she very well could - but would it be the right people? It would probably be the nurses for changing his sheets too often, or 'hiding' the themometer. She's even blamed the nurses for her own med errors as well as her own refusla to carry out doctor's orders, or to change them arbitrarily.

    This is why I am so fed up, so ready to leave - and this is only the tip of the iceburg. I'm not even ging into the uad who swaers at me while his parents allow it and make excuses, or tells me how & what to chart. Or the alcoholic mom who chased me down the hall one night in a drunken rage, and suspected I was trying to steal her fat, ugly, balding hairy-eared dope-smoking boyfriend. I'm bitter and I'm mad. Just had to get it out because for once, the nurses deserve to be heard too.

  2. #2
    Senior Member martha's Avatar
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    Welcome. I can't address most of your questions or comments because we've never had a home health care nurse or aide. But, I think you have found a good spot to vent, to share information and experiences and perhaps to find answers as well as to give answers to some who have questions from the other side of the bed. It should be good for us family members to hear your perspective as well as for you to hear ours. From what I've read on this site, for the most part people (patients and families) seem ecstatic once they've found a dedicated, caring health professional and it sounds like you would fit that category. The complaints I've read here are more of the "don't show up" or "show up late" or "have no training" type of problems and not with nursing care per se. But I'm sure those with experience will share it.

    You also might enjoy the posts from the Spinal Nurses who volunteer here. They are THE BEST. Each and every one of them is a life saver and a true gift to this community.

  3. #3
    Senior Member dogger's Avatar
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    welcome to Carecure .

    i hope the caregivers on the forum don't mind me jumping [ or the quad equivalent ] in here . i'm not a caregiver just a C5/6 quad [ who does his own caring ] though unless the standard lifts soon i'm going to fire myself . Trauma could i suggest a little ''makeover'' , trauma doesn't bring back a lot of pleasant memories for me and your avatur makes me want to sprout Shakespeare along the lines of ''Alas poor Yorrick i knew him well ''.
    seriously i admire the time and effort put in by caregivers and in your job you would get to see some of the worst aspects of human nature . i am sure you will get great support here along with a bit of fun and humour .

    it makes me feel humble knowing there are still good caring people in this world .
    dogger

    every day i wake up is a good one .

    [This message was edited by dogger on Jan 03, 2003 at 01:15 AM.]

    [This message was edited by dogger on Jan 03, 2003 at 01:19 AM.]

  4. #4
    Senior Member martha's Avatar
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    Dogger

    You're wrong to say you aren't a caregiver. You always make me smile or laugh, you're always quick to boost someone's spirits or offer a joke. You're a caregiver of the soul and spirit! And that's a much appreciated role.

  5. #5
    Hi, Trauma,

    And welcome to the forums! We're glad to hear from truly caring paid caregivers!

    This is a quick note, because I have to get dressed and venture into the snow to work, but wanted to mention two things I thought of right off the bat about your situation.

    Firstly, do you work for a service? If so, your supervisor, or the person who coordinates all the care from the different specialties - nursing, respiratory, etc. - needs to know what's going on, and perhaps he/she can intervene and work out a reasonable solution with the family.

    My other suggestion is to keep a journal (like nurse's notes in the hospital) every day, and list what you've done; ask mom or whoever to sign off on it every day.

    I'll come back on later - just wanted to say I'm glad you found us!

    _____________
    Tough times don't last - tough people do.

  6. #6
    Junior Member Trauma's Avatar
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    Thanks

    Martha said:

    It should be good for us family members to hear your perspective as well as for you to hear ours.
    Yes, Martha, that's exactly what I was hoping. I was thinking that it would be wonderful to get a better perspective from the family members. SO often I think I just must be not understanding what's going on emotionally with them. And I'll admit, I do like having the chance to spout and be honest (not insulting, just blunt) without fear of losing my job or getting kicked off a case because I finally stood up to a family member.

    The complaints I've read here are more of the "don't show up" or "show up late" or "have no training" type of problems and not with nursing care per se.
    Those are very obvious complaints! For some reason there are a number of HH nurses who really don't take their jobs seriously and they do pull stunts like frequent call offs, showing up when they feel like it, leaving early all the time. To be brutally honest, the agency I work for IMO does not train it's nurses well enough - not the new ones coming in who have never worked with a ventilator, or who have little to no experience with things like tracheostomies, c-paps, SCI folks. A day's training cannot cover all that needs to be covered. Heck, I knew nothing about vents when I started - I knew what they looked like, and that they beeped a lot... lol I was given a crash course in Vent care and trach care and was sent off to fend for myself after a brief (but usually thorough) orientation to each case. No wonder there are somplaints - I always have understood that part of the family's intense frusration.

    Dogger,

    i'm not a caregiver just a C5/6 quad [ who does his own caring ] though unless the standard lifts soon i'm going to fire myself
    lol, Dogger, I think it's great that you care for yourself. I've been lucky enough to have met some quads (hope you don't mind the use of that abbr. - of course they are all so much more than just their injuries...!) who have taught me so much valuable information regarding the care of SCIs. They are the gurus of their own care, wonderful.

    Trauma could i suggest a little ''makeover'' , trauma doesn't bring back a lot of pleasant memories for me and your avatur makes me want to sprout Shakespeare along the lines of ''Alas poor Yorrick i knew him well ''
    You can certainly suggest it, but I chose the name 'Trauma' because the majority of my nursing experience has been in emergency medicine and in working with traumas of all kinds. Also, it just happens the be the name of a band I like. It's a word that's rather seeped into my life and become a big part of it - for better or for worse. So, sorry to disappoint you - in no way meaning to be rude. As far as the icon goes, it's not a custom one, just one of the many offered here. Perhaps you ought to have a word with the admins about this, because others besides me might pick it too. Besides, I love Shakespeare, especially "Hamlet."

    (I'm usually far more conceeding, but I'm practicing standing my ground for a change. This doormat thing is getting old.)

    Marmalady,

    Firstly, do you work for a service? If so, your supervisor, or the person who coordinates all the care from the different specialties - nursing, respiratory, etc. - needs to know what's going on, and perhaps he/she can intervene and work out a reasonable solution with the family.
    Yes, I do work for a service. I just had a discussion with both of my supervisors about this case - in fact we've talked quite a bit about this one. So far, they have both been outstandingly supportive, and are aware that the grandmother is lying, have caught her in a number of lies involving the nursing staff (too bad for her we document stuff!) So, we'll see what happens there from now on.

    My other suggestion is to keep a journal (like nurse's notes in the hospital) every day, and list what you've done; ask mom or whoever to sign off on it every day.
    We actually do that. We call it a 'communication book.' It is a legal document; every nurse must sign her name, date it etc, and the moms/grandmas read it and can add their own commentary. I'm also a fairly prolific documenter in my nurse's notes, which has been to my benefit a few times now.

    Aside from that I think I may need to start keeping a journal of my own regarding these events - just in case.

    Thanks to everyone for your concern and your replies. I know this was a long post and that one thing caregivers don't have a lot of is free time, so it means a lot.

    I am thinking more and more that I just need to find a new job because this just keeps happening - not only to me but the other nurses as well. My agency has the habit of finding the most difficult cases to work on....

  7. #7

    Suggestion

    One issue that I think helps to clarify some of these conflicts is to clarify who you are working for. Working for an agency can be confusing as you may have divided loyalties...to the agency, to the insurance company, and to the client. Is the client the patient? Is that the insured? Then this is the person who should be directing their care...not a family member. I would turn to the patient to make all decisions about their care (as long as they are competent and an adult). Obviously with children it is more complex, but even a teen should be making most of their own decisions...not only the major ones, but the minor ones about the details of their daily care. Sitting down with the family with a mediator (chaplain, your supervisor, a SW, etc.) and getting all of this worked out, and perhaps even in writing, may help with these types of situations.

    People with SCI are often accussed by health care professionals of being rigid and demanding. You have to look at where they are coming from. Most often they DO know more about SCI and their needed care than the vast majority of health care staff, including HH nurses and physicians.

    They often lack a lot of control over their bodies, so in compensation they learn to control their care by being very particular about how and when it is provided. This is actually to their benefit, as it is after all THEIR body we are caring for, and they are the ones that must suffer the consequences of care that is not correctly provided. This is how we train our patients in rehab, and when we hear they are "difficult" we often smile and think that we did a good job!

    Meanwhile, Trauma, find any picture you want for your avatar and then Jeff can help you make it into an avatar (see the members only forum for info on this). I agree...it is gruesome, especially linked with your user name. If you are doing home care now, try to get out of your Trauma thinking and start to think of yourself as a rehab nurse...you certainly are more than half way there already!

    (KLD)

  8. #8
    Junior Member Trauma's Avatar
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    SCI-Nurse,

    One issue that I think helps to clarify some of these conflicts is to clarify who you are working for.
    Therein lies the rub. I'm employed by the agency, but the primary caregivers of the family are also our 'bosses.' Problems can arise when the nurse knows that certain elements of a case are inappropriate, inadequate, etc - especially on a new case. Many times, the family is unapprochable, hostile, and speaking of rigid....For the most part, that's not an issue for me. Each family expects the nurses to adhere to specific standards of care; ie Johnny will be bathed in the tub every day using this soap, that shampoo, and this styling product on his hair. As a parent, I can understand that and happily comply. The problem arises when I have seen changes in a patient's status that I felt warrant a doctor's notification, but the family for various reasons doesn't call, or worse yet is hostile and unapprochable about it - ie "I noticed that Johnny's feet are swollen/has had to be suctioned a lot more and is running a temp/has a strong & foul odor and cloudiness to his urine," etc. But the parent says something like, "oh it's no big deal, it's nothing, he just got over being sick, he can't be sick again, oh his urine looks like that sometimes..." I don't expect them to jump up and call the doctor for every last thing, but at least acknowledge that this may be an issue, rather than making me feel like I'm basiclaly there for decoration as my professional opinion does not count. I'm not always right, but sometimes I am - and I'm right IMO to err on the side of caution. So, problems start up there, because of that kind of difference in opinion. **shrug - what can you do?

    Problems also arise when a parent expects nurses to disregard MD orders, or change them arbitrarily - ie -"I've decided that since he's been urinating on his own that we're not going to straight cath him every four hours. Besides, we don't have the stuff ordered yet, and I think he'll get an infection if you're always cathing him..." Later, the nurse goes to pick up the phone and call _____ County Medical supply... "Who ya callin'? Oh, no, nexttime let me do that, I order all Johnny's stuff because I know what he needs and what his insurance co. covers...." Or how about the mom who just decided one day to stop feeding her daughter her normal Pediasure tube feedings and put in pedialyte, water, gatorade (the little girl had not had any diarrhea, no vomiting, mom just decided one day that this is how the nurses were to do it until further notice. And God help you if you refuse - she scrawls rambling, verbally abusive notes in the communication book and outright defamse the nurses charcters to their supervisors.)

    I feel at the mercy of the family sometimes. I go in and try so hard to do just as they say, but there are times when I have to also be a nurse rather than a babysitter, there are times when I have to make a judgement call or two. That's when the head-butting begins and sometimes abruptly ends.

    I certainly have no loyalty to the insurance companies. The first loyalty I have is to the patient. Next - and a very, very close second is the family, who are the patient's strongest advocates and primary care givers, and are also considred my 'clients.' The supervisors/company is in there somewhere but I've always felt that my most weighty responsibilty is my patient.

    I would turn to the patient to make all decisions about their care (as long as they are competent and an adult).
    All but one of my current patients are unable to make decisions as they are too you and/or too disabled to do so. Most of my kids are vented and trached with feeding tubes - some of them happen to have SCI, others were born with neurological disorders. My one patient who can speak for himself is also unfortunately SCI & head-injured, with questionable reasoning/cognitive processes. Sometimes he responds and acts like a grown man, but in many ways is still mentally stuck somewhere between 10 and 12. Talk about complex!

    People with SCI are often accussed by health care professionals of being rigid and demanding.
    Well, yes, they are BUT, they have to be! It is a balanced, complex regimin that enables SCI persons to maintain good health and quality of life. Everything from the kinds of clothes they wear, to the soap they use, how often bowel care is done, the time meds are given, etc - and once the person and the family finally get it all down to a science that is working for them, then YES< nurses and other caregivers must adhere to this. I don't take issue with that at all, I'm more than happy to just be the grease that makes these delicate wheels turn. I like knowing EXACTLY what's expected, and doing it well.

    I recall working at a VA hospital on the surgical floor when we had Mr. D come in. He was there a few times for surgical proceedures, and always had his nurse from home come with him to care for him. Some of the other nurses took offense. But even then, I understood, and felt a kind of admiration for Mr. D's nurse - for the way he was so relied upon, so efficient, did his job so well. It's like he managed to grab that Brass Nursing Ring of Excellent Unequivocal Care.

    No matter how much I study about SCI, I will never know as much as the patient does. He lives it, and I respect that.

    This is how we train our patients in rehab, and when we hear they are "difficult" we often smile and think that we did a good job!
    I'll have to think of that, if I should ever hear that fome hospital nursing staff regarding any of my patients.

    I agree...it is gruesome, especially linked with your user name.
    Guess I've been feeling rather gruesome myself.

    If you are doing home care now, try to get out of your Trauma thinking and start to think of yourself as a rehab nurse...you certainly are more than half way there already!
    SCI, I'm sure you meant that as a compliment or positive statement. But I guess part of it bothers me - but that's GOOD - help me understand how I am still in an emergency medicine mindset? I don't mean to sound defensive, I just want to understand what the heck it is I'm doing wrong. I thought I was just doing my job as a nurse, period. I understand that not every change in a patient is an emergency or is a big deal in any way, nor do I treat it as such. I'm just sick of my judgement not being respected. I'm not there to wear scrubs and look cute while watching soap operas. I'm sick of family members taking their anger out on me & wathcing it happen to the other girls I work with as well, and them getting away with it because the agency needs their business. I feel disrespected, unjustly treated, and in general fed up.

    One more rant and I'm done. My SCI (C1 subluxation w/ a spinal cord stretch, not severence) baby has been in excruciating pain for months - ever since he came out of the hospital again this past summer. He bucks and spasms, grinds his teeth relentlessly, cries so hard, his eyes get glassy and glazed over, his heart rate sky rockets up to 160's - 170's and he even says he's hurting. His little teeth are ground down so far that nerves are exposed This happens several times a day, spaced with periods of moaning and regular, frequent expressions of pain. Sometimes he has a good day and doesn't cry much all evening. But for the most part he is not sleeping at night, only naps during the day. Because he's so tired and in so much pain, he's having a harder time participating in his rehab therapy.

    His caregiver denies that he is in that much pain, that he is just saying he hurts for attention from the nurses. It is taking it's toll on me watching this little boy suffer, knowing that his caregiver should have taken him to the dentist a long time ago, sitting with her through doctor appointments as she talks about how great he's doing, still in denial of his chronic pain. If I start to speak up, she starts talking over me, saying "we already know it's his teeth!" I am admittedly a bit intimidated by her, as are my supervisors and the doctors. She is very difficult to approach, she is quick to snap at you or stonewall you, and she knows that all she has to do is switch agencies and POOF, she can give us all the finger that way.

    I'm so afraid that he will eventually give up - he's had it so hard already. He needs proper pain management. He needs those poor teeth taken care of, not his caregiver's excuses and procrastination. I can't imagine how sick and tired this child must feel inside - exhausted mentally I am after a shift with him from trying to help palliate him & keep him happy with books, videos, blowing bubbles....I enjoy that. but it's so hard when no matter how much Motrin or Tylenol I've given him, no matter how I have tried to ease his suffering with keeping him occupied or bating him, or just plain physical comfort that he still cries and cries and is in pain. He needs more that what we can give him, and his caregiver is standing in the way.

    Although she can & is allowed to by his doctors and therapists, she won't pick this little boy up and hold him, nor will she let the nurses unless it's very briefly for his physical therapy. His former caregivers used to do it, and this was when he was freshly discharged! They used to hold and rock him. Back then he was still eating, now it's rare if he takes a sip of juice. I think (as do the other nurses on his case with whom I've spoken) that this sort of failure to thrive is caused in part by his pain. ANd I feel like no one is doing anything about it - they're a bit cowed by this woman, and no one wants to step in and do what it would take to get this child properly taken care of.

    I'm not a johnny come-lately to this case, either. I've been with this little boy since the fist day he was discharged home from the hospital following his injury last spring. I know there is a heart-wrenching difference with how he was then and how he is now. I've been with him when he was still in his parents care. So, I know him. And I'm totally frustrated with his guardian. **sigh.

  9. #9

    Just for the record...

    Hi Trauma~

    Welcome! Just for the record...I love your avatar. I have a Bachelor of Science in Physical Anthropology (human origins/evolution) and almost chose it myself! Maybe I'm missing something, but

    a) how can a human skull be considered "gruesome", especially by people with medical training? Does blood make you squeamish as well?

    b) since when does everyone vote on a forum member's name and/or avatar?

    Hang in there, Trauma...maybe there's a full moon?

  10. #10
    Senior Member dogger's Avatar
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    RE: avatur and nickname of trauma .

    SciMom and trauma i was just trying to give trauma a smile , must be a bigger gulf between Aussie and American humour than what i thought . i would never force my opinion on someones choice of what they think suits their personality on anyone . sorry trauma , just thought you would welcome a light hearted diversion .

    dogger

    every day i wake up is a good one .

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