trachmom

I'm not shooting down ideas; either I've tried them, or they are NOT OPTIONS for me. And yes, I've had many, many conversations with our agency, including a face to face sit down. I am not here looking for you all to solve my situation (though if some new idea is out there, yes I'd love it.) I am angered and pointing out how obxnozious it is to ignore the fact that FAMILIES ARE THE CUSTOMER. Not nurses. Not agencies. Yet if you look at who gains from home care nursing, they way many of you describe it: Agencies make money. Nurses get flexibility. Families get what's left. And we families have very few options. Coming back and telling me I don't really know my options... or I'm possible wrong when I say they are not options for me... Not helpful advice, just condescending. Also, whatever a family does on their own time -- and you do not describe my family in any way, in case you are wondering -- has nothing to do with whether they require nursing care. As for what I wish to gain, I joined only after reading the initial posts and feeling frustrated at the attitude, about schedule, about families chosing this lifestyle... I didn't wish to gain anything; I wished (and still do) to speak up for people who really don't have much voice.

If this is directed at me, I have only ever fired one nurse for stealing morphine (and quite possibly giving it to my son). You would not believe the stuff we've put up with. Oh, there was also the nurse who showed up for 2 out of 4 night shifts, and on one of the one's she showed up for, decided to change all of his tubing... without needing to, without knowing how, and wihtout calling us for help when she wasn't getting it right until my son was desatting. Yes, I asked that she not return. I've dealt with "personality" issues as best as I can, and have never fired anyone for it. Even competency is something we attempt to redress. Stop. Blaming. Families. Does it make you feel better to do this...? I do not get it.

I'm not new at this... We're on the wait list for the waiver, but it is small and will not cover nursing when it finally comes thru. It's grating that you again bring up getting rid of nursing. I fantasize about being able to do this, and I am glad other families can. My guess is that there is a stay-at-home parent full time, and even then, it is a very hard life to never have respite. Even if I did not work, full-time care for my son would preclude full-time care for my other children. I have a support system. But honestly, even for my healthy kids, at the drop of the hat I cannot just call someone and be sure they will be able to show up. My friends and families have full lives and other commitments including full-time jobs and children of their own. My son is reportedly the most complicated case in the entire state -- all three agencies I worked with said as much, the hospital said as much. No, I do not have back up. No, I do not have another agency I can work with. No, I do not have the means to provide full-time care and that is not a reflection of selfishness or lack of love. No, I do not have access to privately managed nursing. I am part of a system that favors nurses over clients, money over service, laxity (of professionalism) over accountability (except of course if someone's legal ass is on the line). I'm part of a system where saying "The family doesn't have to like it" is acceptable. My family's life and wellbeing are tied intimately with it, trapped in it. It is aggravating to insinuate that we have choice in this. I would never willingly choose this relationship, EXCEPT as the alternative to abandoning my child. THAT is the choice I made, without hesitation or regret. That so many posters feel the need to act like famlies like mine have sooo many options begs the question: Why are you blaming the needy (I really don't want to say "victim")? Usually this is to avoid dealing with the truth.

We can't do without nursing, and my insurance will not cover privately paid nurses. I have no other agencies in the state to work with, as I mentioned, so I can't fire my agency to get these nurses that I need to work and care for my other two children, one of whom also has special needs. We have neither a family member nor a friend who has both the time and willingness to be trained to care for our son. And I do not expect agencies to cover last minute call outs.

We tried this route a couple years ago. We had three alternative agencies: Maxim, which our agency (thank God) flat out refused to work with and that is now out of business in our state. And then two others - One provided only a single nurse, not a good fit; and zero nurses after that, and I checked in regularly. The other provided a great nurse who was with us for 18 months until we needed to fire this agency for being a complete nightmare. In that time, they provided only one additional nurse who filled in a handful of shifts before we dumped them. So neither of them are options. We are stuck with our agency, thankfully it's a relatively a good agency. Normal call outs for true emergencies happen in life, I consider coverage in that case to be a true blessing. For scheduled absences, how many of you work on cases/for agencies where there are nurses availabl to cover? And, they'd have to be trained on the case, no? No one could reasonable step in to care for my son wihtout at least a full day of training. Are there exceptions to this? We requested a trained back up nurse in February....... It's the end of June...... I understand the nurse's situation, especially after really thinking about it this past week. What I don't like is that the family has no control at all... I can't say, ok let me work to hire a substitute. Like almost everything else in the medically complex world, we are at the mercy of others to work to address our situatino. So saying we don't have to like it... yet, we're the customer, and in my case with private insurance, we are the financiers of this business exchange. Saying we don't need to like the care we receive is exactly the problem. Who answers to us? Who sees us as the customer in this situation? Who sees us as the reason everyone in this industry is in business? Who sees our *suffering* as the reason you all are in business? I'm a freelancer in real life, but I've got a committed client month-to-month. My benefit is that I have flexibility scheduling my time. But. I have to deliver on my product no matter what -- if I do it in the middle of the night, no problem. But it needs to get done. And I see no problem with this. I *could* just tell them, I'm taking this month off. But I wouldn't. Why? Because they are the customer. They may not fire me, though they could. But I will damage my relationship with them. So, I bend. If I miss my normal working time during the week, I make it up. Why do PDN nurses *require* more flexibility than this? Surely the needs a family with a medically complex child are at *least* as important as the needs of a corporation? The answer is: We are a vulnerable population. We have very few options, and in many cases like mine, zero other options. We must put up with it, regardless of how unstable it is. We *can't* fire the agency, and we many times feel we can't fire the nurse -- it's slim pickings out there. So, where normal market forces would demand higher professionalism, the market forces of the sick population is very low. There will ALWAYS be another vulnerable customer with no recourse but to put up with crappy service.

She's not calling out (anymore) 2-3x per month. Now, when making up the schedule, she is taking 2-3 days off, even though her commitment at the outset of the arrangement, as in last October not month to month, is that she works Mon-Thurs and Saturdays. The agency is fine with this. They fail to recognize that, just as many nurses like to have a stable full- or part-time schedule of certain days every week, month over month, so do families... So that when a nurse benefits from these stable hours, so should a family. Right now, only my nurse benefits from this stability; she has her pick of 6 eight-hour shifts each week to get the 35-40hrs she seems to need financially. I really don't know why this is so hard to understand as a problem... My solution, as I've mentioned, is finding a different regular Saturday nurse, something she was very surprised by. I offered her later hours during the week, and/or random Sundays... she likes early days and she likes all Sundays off. No problem. But flexibility goes both ways... want the extra hours but don't want to truly commit? Then you gotta work some shifts that matter less to me, than I can afford to have you come and go when you please.

I know exactly why she is taking the days off and they are overwhelmingly for completely optional activities. She commited to 5 days a week, she very often works 4. Why this is so hard for you to compute I do not know, except that you all clearly have axes to grind about being called in to cover for others -- I do not, have never, and never will expect a nurse to cover for another nurse. Clear? Wow, just so much empathy oozing from you. I think I have more empathy for my boss's work situation than you do for us families. Also, please save the condescending advice as to how to make this work. My husband and routinely -- and i mean at least once a week for the last 4 years -- regroup to figure out how we are going to make this work. We are hopeful, faith-filled people who do not wish to have another's life or lifestyle, we wish to make this puzzle work. And this: "I bet those nurses have no clue you are bothered. And its not their fault due to the nature of the job. They are just trying to make a living and hopefully a difference in a childs life." -- Holy ****. First, yes this nurse knows how I feel. Second, so families with special needs should just suck it up b/c dang you chose this. But... poor nurses who overcommit at the outset, it's just not their fault they are takign all these optional days off! Poor nurses, they're in a flexible field with almost zero oversight of professional demeanor (beyond legal CYA to the agency and nurse don't get into trouble) -- how dare I hold them to normal standards of professionalism. You're so right, I shoudl go think about this. I'll do that while I'm workign on my positive attitude.

Posts should not bring tears to my eyes, this one did. Yes, this is exactly what we're saying. I've refrained from even acknowledging the repeated insinuation that families with medically complex kids have chosen this difficult path. Any more than an adult who drove a car one day and got hit and is now a quad chose that path. Of course there are consequences to any decision, no one is saying otherwise. And jsut to be crystal clear: Nurses in the home do not somehow remove the difficulties of our lives. Nurse in the home are deemed MEDICALLY NECESSARY by doctors and insurance companies alike, so that these children can receive the care they need -- and no, it's not because nurses come in and do this care. It's so that parents can oversee this care, but have the respite we need to do it adequately. When I say I want a nurse to honor his or her commitments, I do not feel entitled. I do not even feel happy. I HATE IT. I hate every single second that I *need* another adult to help me care for my child.

Yes. Exactly this. When they call out the day of, the family has to speak up if something is to be done about it. When they *schedule* a day off almost every week it is not much better. I would rather they just commit at the outset to one less day, so that I can have a chance to fill that day with a stable situation.

I would never argue that a nurse should not take a planned vacation, 2 weeks, 6 weeks (so long as they know we may have to replace them) - I get that that's part of the job. What is much harder are the random days every month that can't reasonably be filled. Like I've said, it's rare, has only happened with 2 nurses. I have a nurse right who has commited to 5 shifts/week with us, and 1 shift with another family. She takes almost a shift off each week between the two cases. She clearly does not need to work all these shifts or almost a year later she would not do this. So I feel like she is indeed overscheduling as RNathome alluded to. I'm told that some of the nurses where my husband used to work did the same thing -- signed up for OT, then called out of their regular shifts. Same pay, more flexibility, but gray to say the least when it comes to commitment and professionalism. THIS is what I feel screws us. Or our nurse who told me last Friday that this Friday she won't be coming. A week's notice is better than no notice, but wow, when this means i have to reschedule an out-of-state full day of appts that took months to book b/c the other nurse ALSO took a day off... and reschedule not only the appts but the childcare for my other kids and my work... It's inconsiderate. Agency ruling: Per diem means SOL. Yet you better believe she's expecting to remain our Friday nurse, so I have no leverage at. all. Also, I'd question whether you don't get any benefits... "glorified babysitter" is what I've seen you all refer to yourselves at times (and I get it for some cases, don't get me wrong.) For many nurses I've spoken with, this job is much easier job than hospital nurses, and I'm all for it. Not many jobs can you binge watch Orange Is the New Black, or work on your BSN. And I encourage all of that as well. But it's not like you're not getting anything out of this set up.

I don't think we're discussing the same thing... I would never expect a nurse to cover for another nurse, or to come in after an accident or while sick. I would never expect a nurse to not take days off or go on vacation, or to clear their vacation dates with me. When you say you show up for the shifts you've agreed to... that's all I wish for. And honestly? I have gotten that from most nurses. But. I also consider a commitment to cover regular shifts each month means just that: A commitment. Just like any other job. I'm not ok with missing multiple shifts each month out of your regular shifts, not at all. Do you do this? Does anyone responding here do this, b/c I'm getting the impress you don't. And I've only had 2 nurses who do. And there have been a few times when I've pushed back on days off -- because a day is a random beach day and the night nurse is already going to be out the night before and after... because I have an important appointment... because it's my son's camp week... This is all I mean with I say having some regard for what's going on with the family, with your place of work. This is no different than any other place of work -- ususally you can take any day you want. Very occasionally, it's your turn to bend to accomodate the place you've committed to. And I give as much extra flexibility as I can -- leaving early, coming late, random stuff the agency would discourage, but things change sometimes last minute and we are super flexible whereever possible to accomodate this. Need long term time off? I get it. I've had nurses take 4-6 weeks off for medical conditions or hospice/funeral/grief, and we hold their spot without a thought. But to basically hold your spots from month to month on the calendar by being the nurse on a regular shift, and then scheduling exceptions every month knowing that a) the family is probably going to keep you b/c you're trained and it's slim pikcings, and b) the agency doesn't care about anything besides something that's going to be a liablity to them... You don't think that at least professionally speaking that this is pushing it? You also mention control. I think you hit the nail on the head. We families depend on nursing care for any amount of control of our time. When we have zero say as to whether a nurse can jsut call out last minute or multiple shifts... yes, we do indeed lack any control. And that feeling is not good. Maybe that's not important in terms of policy. But in case it matters: Not knowing for sure what your family's schedule is month to month, or even week to week, is a depressing loss of control. And it happens all the time in home care nursing, with impunity.

Your attitude is the problem to parents like me (or at least what I can infer - I may be off base.) My point is not that any nurse or agency is responsible for my child. It's that once you've committed to a schedule, you should feel responsible for keeping that schedule -- whether we're talking about taking care of a complex child, mowing someone's lawn, or filing someone's taxes. People count on those they hire. I'm not suggesting that nurses should cover other nurses, or that nurses can't take vacation, or sick days, or make doctor appts, or shoudl drive in a foot of snow. I'm only agreeing with the OP that once you've committed to covering a shift with regularity, you should show up most of the time; and that vacations and time off should be reasonable, not unlimited, unless you're willing to be taken off the case altogether. You say on the one hand it's the agency's job to fill spots. And you're right. And they do that when the say Nurse A will work Monday through Friday. You also say that it is very rare -- and understandably so -- that the elusive unicorn of a nurse who is not only fully trained but also free to cover random days off doesn't really exist. So, how can agencies simultaneously keep their commitment to the families who are paying them (and do not forget THAT is where YOUR money comes from -- families, not the agency, they just do us the favor of taking a cut of our insurance benefits before passing on your cut to you -- we pay you both) when nurses who commite to, say, all weekdays, then take far more than the typical 4 weeks off a year of sick + vaca? What you're really saying is you don't care. At least own that. Stop implying that families are holding your responsible for their child's wellbeing. That is a straw man. We're holding (or wishing we could!) nurses responsible for holding up their end of the commitment. And stop implying that families want you to have no life, or never take a day off. On the contrary, the families I know very much expect and encourage nurses to take scheduled vacation time. The issues are: 1) call outs 2) excessive time off and 3) time off with no regard to what else is happening in the family or to the schedule. Again, these things are tolerated because agencies are usually only very minimally invested in families, and because families are desperate. Not because it's ok. Workers in offices or hospitals or any other area of life have private lives too, hobbies, vacations, sick days, and they do not expect unlimited time off. You take advantage because you can. End of story.

I just wrote a long response, and lost it. I'm a mom of a complex child and SDALPN I have to say you really don't seem to get it. I have no back up for my complex child. That's why insurance is willing to pay for nursing -- b/c my alternative is institutionalizing him. If my healthy kids lose their child care, I have back up fairly easily (relative to medically complex children.) If my healthy kids lost their childcare 2-5x/month, I'd switch baby sitters or day care -- it's hard enough setting child care in teh first place. Rearranging not only chld care, but appointments, work commitments, etc, is very stressful, very distracting, and very time consuming. No one would tolerate that... unless they were desperate.... Which is what families with complex kids often are. The number of nurses to care for kids like my son is low, as I've learned in these 4 years. . The number of competent nurses who also have a good work ethic is very, very low. When you get someone who fills even some of the requirements, it is very tempting to make due and hold on to them. Combine this wtih the fact that agencies usually don't give a crap enough to advocate for families... and voila, that is why "flexibility" like you're describing is tolerated. If it is understood that you are just filling in random days in any particular scheduling period, then scheduling different days every time makes sense. But if it is understood that you are THE Mon-Fri nurse, or the Weekend nurse, etc. than you're taking a position that someone else could fill. Finding back up for random days you want to take off -- above and beyond a day or two a month -- is very difficult. Our agency has never found one for us, and I don't know many families that have actually found one. Do you really commit to a family that you're going to be their regular nurse for days or nights, and then just take whatever days you want to, without even a thought as to what that will do to the family? I don't mean guilt, I don't mean you don't have a life. I mean you do whay anyone at any job would be required to do -- check in, give a ****, asking if teh week you want time off works, negotiate. They are holding these shifts for you from time period to time period. I have a nurse right now who commited to Saturdays, except "maybe one a month", and has yet to come thru for this in 9 months. She was surprised, even offended, when I told her I needed to find a different Saturday nurse -- those were *her* shifts. This is not about entitlement. And saying things like there are no guarantees really misses the point. There is no guarantee you won't need a c-section at birth either -- does that mean that its ok if you dont' have access to one? Doctors and insurance companies have agreed to providing medically competent care so that parents can sleep, work and have a small (very small) amoutn of respite is medically necessary. You're job is to fill a medically necessary roll. That you can dismiss this as easily as you do -- just not your problem -- is troubling.