How many days off are appropriate?

trachmom · Jun 27, 2014

Every state has a waiver program and perhaps you need to apply for it based on your child's medical needs so that you can have self-directed care instead of agency care.
It's not easy to choose to get rid of nursing but there are numerous other families with tech-dependent children and other children, including other SN children, that do get rid of nursing.
That's unfortunate that your support system is so lacking. It's always helpful to have reliable friends and family for last minute call-outs or scheduling issues.

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.

trachmom · Jun 27, 2014

Maybe you might need some self reflection to see if some of your reasons for firing a nurse are "unreasonable".
Nurses never leave cases they love.

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.

JustBeachyNurse, LPN · Jun 27, 2014

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.

It's a two way street.

There are nurses that are sloppy, cross boundaries, have poor attitudes, chronically late, lazy and self entitled in every area of nursing, not just PDN pediatrics.

There are families that see their special needs complex child as a badge of honor, their goal is to have the most complex kid known to man as the parent thrives on the attention, textbook sized MARs, seeks any handout, notoriety or donation they can get their hand on. Often has several social media pages to document their "difficulty " seeking pity and sympathy. All at the expense of the child. Often several online personal fundraisers for life expenses that typical families find ways to pay for like basic supplies (diapers, wipes), modest electric bills.

Sometimes yes, the family is to blame. Sometimes the agency is to blame. Sometimes the nurse is to blame. Sometimes it's all 3.

Your frustration is palpable but I do not understand what you wish to gain by posting on a nursing message board. The experiences and suggestions posted by nurses and vent mommy are knocked down by you at every post. I really don't know what more any of us can tell you at this point. I understand your desire for a nurse to commit to a specific schedule from day one until they leave the case but that is a contract case. Many nurses wish to commit to a set schedule but life changes and priorities change. What worked for the nurse you refer to last October clearly does not still work 9 months later.

There are only so many nurses that are qualified and competent in pediatric trach/vent. ( it frightens me to see new grad nurses post that they are being recruited to work pediatric trach/vent once they pass the NCLEX with an 8 hour class and two shift preceptorship. Not all families are experienced & competent to support a new grad nurse , and a family is less so if nursing is in place so the parent(s) can work and/or care for their other children. )

You say you tried other agencies.

You say you tried speaking with the nurses.

You say you are on the waiver waiting list.

Have you had a meeting with the agency branch director and/or clinical manager to ensure that your wishes and expectations are clear?

I know in some areas the last resort is medical day care or inpatient pediatric long term care, not optimal but at times the only option.

(Almost) no one wishes to have a medically complex & fragile child that requires a trach and/or trach-vent. I'm sure you would much rather NOT need strangers (nurses) in your home 8/12/16 hours a day.

I do this work because I can, I have the skills, knowledge and seek out continuing education to improve my ability to care for my charges. My job is not to replace the parent but support the child (and family) so the child can be as much of a part of the family and society as possible while meeting their complex medical needs.

trachmom · Jun 27, 2014

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.

Esme12, ASN, BSN, RN · Jun 27, 2014

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 obnoxious 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 choosing 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.

It is clear that you are frustrated. I am so sorry.

It is a difficult path for families with children that require care. It is a long and difficult road and burden to bear. I can see how life can be riddled with frustrations and road blocks. Vent Mommy KNOWS where you are coming from....there is a reason behind the name. Beachy is a highly qualified and experienced PDN for complex children and infants. There is no way they can possibly "know" your situation but have honestly tried to give you good advice.

Yes there have been some comments that were, in my honest opinion, out of line but that was pages ago.

It must be difficult for a parent and a family to have to depend on complete strangers for everyday needs. It is clear you are angry and frustrated and for that I am sorry. Have you though about reaching out to a support group? Maybe they have ideas that would be useful to you.

The fact remains that the nurse is employed, technically, by the agency. If the agency approves her schedule, or the lack thereof, it is their responsibility to find another nurse...the nurse is allowed (I hate to use the word entitled) to have a personal life and needs. Like you...her job is necessary...but it is NOT her life. Like any job. profession....the employee is allotted time off. They are supposed to use it. A per-diem employee is just that...per-diem. They make their own schedules and time. That is the beauty of that position. Yes it impacts you and your family but that is not her responsibility...it's the agency.

I am so sorry that you are frustrated and angry. I do not know how I would deal with all that you deal with...but we are here to listen.

Esme12, ASN, BSN, RN · Jun 27, 2014

Back to topic....The original poster had an original question

I'm wondering how other PDNs with regular full-time assignments schedule time off? I've pretty much followed the standards of regular office work -- 3-5 sick days/year, and 2-3 weeks worth of vacation or personal days, scheduled in advance and in after discussing w/the family.
I haven't had any problems with this, and only rarely need to negotiate a day off. But other nurses I've worked with think nothing of taking 2-3 shifts off each month, and often that's not even scheduled. This is very stressful for the family, and it puts more pressure on the other nurses in the home. The agency just says, well their per diem so we can't do anything.
I guess I don't think of this as per diem work. I committed to a schedule, and it's my job to do the work. No, I don't benefits, yes I wish I did. But I don't think it's fair to take that out on the family. I get other perks from this job, and I chose it.
Am I being too conservative? How do you all deal with time off?

Per-deim is a recognized position. It saves the agency money on benefits. They make their own schedules. Nurses who take these positions do so because they want that flexibility...as a fellow staff nurse with that agency it is not your responsibility to worry about the others nurses time.

JustBeachyNurse, LPN · Jun 27, 2014

I wasn't implying that your family was anything like the extreme example posted above, I sincerely hope not! Sadly I know at least 3 families like that, if not more.

Just like what you do with your family in your own time is your business, what I do in my own time is my business. If I make arrangements within my agency policy for time off directly with agency personnel , quite frankly it is not your business. The agency is responsible to cover my time off. If I accepted a case that was 8-5 MTThS with a client and my needs changed. I would discuss my schedule change needs with my agency and do my best to stay on until a competent replacement is oriented but there is a deadline. If I request a schedule change in January to be fulfilled by the end of Febrary/beginning of March I cannot help it if the 6 nurses trained do not meet the mother or father's expectations. This would be a reasonable effort to fulfill my obligation that exceeded company requirements.

If a nurse constantly requests off 2-3 out of 4 Saturdays a month then she/he should not be shocked when a replacement willing to work 3/4 or 4/4 Saturdays a month. The flexibility goes both ways.

If my availability does not meet the needs of the patients or agency for my per diem job I am not scheduled. In my case I am a qualified as a highly competent nurse for my per diem agency and can fill in any case within my skill set with short notice and a verbal orientation for a premium pay rate. Fortunately for the families, the premium calls are few and far between but I do not rely on premium call (I have 30-60 minutes to be at the case to secure the highest rate) as a source of income, it's a bonus of sorts for me. This arrangement works for me

It's uncomfortable when parents discuss concerns about other nurses with me, I redirect to agency management. It's more concerning when a fill in nurse asks if another nurse is being pulled from the case as s/he wants their steady hours. It's not up to me and I refer back to the office. If nurse A tells a parent they want time off (instead of the agency) the parent shouldn't be asking me to cover. I've had parents go bonkers because guess what I work more than one case and sometimes the reason I cannot jump and cover Jane's call out for you is I am scheduled for another child. I do not have to explain why I am unavailable.

I do not work for the child.

I do not work for the parent.

I work for the agency. I have no desire to direct bill insurance a and work directly for the family for a multitude of reasons.

While I would love to make the parents happy, my customer is not the parent/family but the patient/child

My job is to ensure that my patient is receiving safe and competent care and is in a safe, healthy environment. Hence why if a patient is not being cared for safely or the environment is unhealthy I am legally obligated to call child protective services on behalf of the child (and supported by both agencies I work for) to advocate for the child. Unfortunately I've been involved in a case where a child and siblings had to be removed. I was not the one who had to call CPS but I was required to verify my documentation for the deciding judge. It's unnerving but ultimately in this case it was best for the child especially since kinship care was an option.

The family is an indirect customer but my direct customer is the patient/child.

caliotter3 · Jun 28, 2014

You might try advocating with your insurance company to get rid of the agency. A former client of mine was not afraid to speak up about her patient's care with whoever was involved. After years of poor coverage from the various agencies that came and went, the insurance company came up with the idea to cut out the agency middleman. We all know their reasoning, as they didn't pass on the cost savings to the nurses working the case, but the family benefitted by having better control over who was placed on the case.

caliotter3 · Jun 28, 2014

Another thought to keep in mind, and one which I sometimes bring up to incredulous clients from time to time, is that the agency, as the employer of the nurses, has the final say over where those nurses work. Their obligation to the client is to provide a qualified nurse. They are under no obligation to provide the same nurse over a consistent schedule; they can send a different qualified nurse for every shift if they want. While most agencies don't work under that policy, out of convenience and efficiency concerns, it is always a possibility. We are far from a perfect world in extended care home health.

SDALPN · Jun 28, 2014

Another thought to keep in mind, and one which I sometimes bring up to incredulous clients from time to time, is that the agency, as the employer of the nurses, has the final say over where those nurses work. Their obligation to the client is to provide a qualified nurse. They are under no obligation to provide the same nurse over a consistent schedule; they can send a different qualified nurse for every shift if they want. While most agencies don't work under that policy, out of convenience and efficiency concerns, it is always a possibility. We are far from a perfect world in extended care home health.

Very true. I always say we are pawns in their chess game. I can't tell you how many times I've been asked to work at a different place than scheduled because a nurse can't go to a case, but can go to the one I'm on. Of course they will try to move me so they can have two cases covered instead of one.

rnrg · Jul 20, 2014

I do get it...been doing this for 10 years...I really get it. I work for the agency, not a parent. If a parent has a problem with staffing they can take it up with the agency. I'm not a slave to any parent. I chose this job for many reasons including flexibility. I work because I chose to, not because a parents expects me to jump when they say jump. I happen to take a vacation or two a year and a few weekend trips. I work a very stay schedule and overtime most weeks. But if I need off for a break or Dr appt, I will take it. If I can't take care of myself, I won't be taking care if anyone else. If the agency can't staff a case, that's not my problem. Typically the hard to staff cases are the parents that are never happy anyway. Any parent that has a problem with a nurse working for an agency and choosing their own schedule needs to hire privately if they want a different situation. With an agency, that's how it works and you accept that when you use the agency. You are ultimately responsible for your child, not us. Our responsibility ends when we are off the clock. There will be days a patient can't be covered...that's life. Its hard for agencies to find nurses that only want to work call outs and open shifts. On top if that, most open shifts are cases nobody wants to work anyway. Most nurses need full time hours and can't sit at home waiting on a call. That means the nurses already working for the agency may be working another case and can't be in two places at once. I don't get benefits, I don't get anything other than hourly pay. So my benefit is flexible scheduling and that works well with my life. Someone elses child is not my full time responsibility. I didn't make the choice for that child to be brought into this world, the parent did. I don't work for the parents. I work for an agency and for the childs best interest. I almost never call out and I cover call outs when I can. If a parent doesn't want to worry about call outs and missing work, they can put their child in a facility and then they won't have the problem of missing work. Don't forget facilities get short staffed and then the child in the facility won't get the care you can give or the one on one care that is better for the child.

Holy crap SDLPN I think I love you. Im currently paired with a case that is clean spacious and th pt is adorable. The parents on the other hand, passive aggressive manipulative users. I am sincerely empathic concerning the stressful nature of having a medically complicated child. I am a compassionate nurse who goes above and beyond to meet the needs of pts and families. I am NOT slave, and as much as its pertinent for me to work my scheduled shifts its outrageous that parents feel they have the right to give my shifts away to other nurses simply because THEY FEEL LIKE IT. Bogus. Im moving on. Guess I prefer to be a rolling stone with multiple cases filling in somewhere new.

caliotter3 · Jul 20, 2014

When a parent successfully gives away your established shift hours to another nurse, your problem is with the agency. At that point it is time to find another agency. A good agency won't go along with clients pushing their nurses out the door to new employers.