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Pediatric patients...parents are KILLING me!

lovelane78 specializes in Hospice, Adult and Pediatric Home Health.

Ok I have to rant and I know some of you feel me! I am BEYOND sick and tired of being taken advantage of by my pedi parents. They just flat out don't take care of thier child and expect you to do everything. And WHY am I here taking care of your child when you and your husband are here just lounging around the house, running errands, and going out to eat? Why am I here if YOU are here? You come in every few hours to see how your child is doing and then out the door u go! Why am I here stuck sitting in a small room for 8 to 10 hours while mom is at work and dad is sitting in the recliner ALL day playing XBOX? Why are you throwing a damn fit when I call you an hour before my shift and tell you my daughter is very sick and I have to cancel my shift...because you are going to be home all day but now you can't go to your yoga class and meet a friend for lunch. OMG, you have to take care of your own child! What a horrible thing it must be not to have a nurse there to be a parent so you don't have to! UuuuuGgghhhhh these parents are ruining my desire to do private care. TAKE CARE OF YOUR CHILD!

Ok I have to rant and I know some of you feel me! I am BEYOND sick and tired of being taken advantage of by my pedi parents. They just flat out don't take care of thier child and expect you to do everything. And WHY am I here taking care of your child when you and your husband are here just lounging around the house, running errands, and going out to eat? Why am I here if YOU are here? You come in every few hours to see how your child is doing and then out the door u go! Why am I here stuck sitting in a small room for 8 to 10 hours while mom is at work and dad is sitting in the recliner ALL day playing XBOX? Why are you throwing a damn fit when I call you an hour before my shift and tell you my daughter is very sick and I have to cancel my shift...because you are going to be home all day but now you can't go to your yoga class and meet a friend for lunch. OMG, you have to take care of your own child! What a horrible thing it must be not to have a nurse there to be a parent so you don't have to! UuuuuGgghhhhh these parents are ruining my desire to do private care. TAKE CARE OF YOUR CHILD!

It may be Overwhelming for them at times. Sometimes you just have to step away and live life. Or else you'll go nuts! Do they have a 24 hour nurse? Or just you once a day for 8 hrs?

eatmysoxRN specializes in Med/Surg,Cardiac.

Sounds terrible. I've never done private duty. Not sure that I could hold my tongue in your situation. I'd probably let it fly. I almost did when working peds in a hospital. I had to check my badge a few times because I was sure they were reading "vending machine" instead of "eatmysoxRN"

lovelane78 specializes in Hospice, Adult and Pediatric Home Health.

These patients have 16 plus hours of nursing a day. The parents just are so accustomed to not having to care for thier special needs child. I have patients whose parents are working all day then take over care when they get home, but most parents just act like they have free babysitting. Dealing with the families of patients is what makes nursing so stressful. I've lost hope in compassion of human kind since becoming a nurse.

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....

lovelane78 specializes in Hospice, Adult and Pediatric Home Health.

It is my job...however you are the type of parent I DO respect and like to work for. My pt. has 16 hours nursing per day. Her mom NEVER cares for her child...but takes her Ambien at night so when she cries (during the 8 hours she doesn't have a nurse) she doesn't have to be disturbed...my other pt. also has 16 hrs nursing per day. Mom could do without child but has others to care for her during the day and evening. At night she ignores child then gets ****** if her diaper is full in the morning. Another mom drinks all day and night while nurses care for her son. No, I don't have a special needs child but I sure as hell would take care of him because that's my responsibility. The excuses are BS. It disgusts me.

SDALPN specializes in Peds(PICU, NICU float), PDN, ICU.

That behavior is common. Nobody tells these parents how things should work because the agencies are scared if running the parents off to another agency. Right now I'm lucky that I have a parent that is involved without being over the top. But she is home all day, sleeps til 2p. Then watches tv the rest of the day. She whines about how hard the work is to take care of the patient. But acknowledges the hard work we do. She complains about how hard 4 hours is with the patient while we do 12 hour shifts. But I've seen worse. We enable these parents to avoid being parents sometimes. We do need to be there so they can go out at times. A babysitter wouldn't be able to do what we do and give the parents peace of mind. However, so many take advantage that it ruins our view of things. I have some parents that refuse to change a diaper. They walk in and tell the nurse to do it. But then they don't change the kids diaper and wait for the next nurse to arrive hours later. We are there to be nurses and give the parents a chance to work our take a break. But so many get greedy and take advantage. Then they go through nurses quickly and complain they can't keep nurses. The good families keep nurses for years. Sometimes I wonder if these parents with special needs kids weren't meant to be parents but our medical technology saved the kid. I had another case where the parents flipped out if they didn't get a nurse on Fri nights so they could go out. They both were home all day living off the system. But they couldn't be flexible to choose a night when they had nurses and be appreciative of that. They act like its owed to them. Luckily not all parents are like that. Its just hard to find the good ones. But yes, it can be extremely frustrating dealing with that day in and day out. It may be time to find a new case or float for a while so you can find greener grass!

nicenurselpn specializes in Pediatrics and geriatrics.

My son was special needs. Severe brain damage, blind and deaf. Fed by g-tube and had a colostomy bag. I was blessed to have home care nurses help me with my son. They were there to take care of him during the day, so myself and husband could go to work. However, when I came home from work, I took over. I enjoyed taking care of my child. I had a certain way I did things, and never once did I expect the nurses to do anything else, but take care of my child.

Now that I am a nurse myself, I work with special needs children in a LTC type facility. I see all types of parents, from the extremely involved in the care of their child, to the haven't called or visited in years and years. I understand your frustation, but since I was in a situation similar, I can offer a different viewpoint if I may.

Regarding the father who plays xbox, maybe he feels overwhelmed or even scared of taking care of his child. My husband loved our son, but had no clue about his meds or his gtube care, or his colostomy care as well. He was scared to even be left alone for even for a few hours.

The only thing you can do is continue to take good care of this child and bite your tounge. Or perhaps look into another type of nursing. I am sorry you are going through this, it is a tough situation.

I think sometimes, not all cases but some, the parents are scared. Either they don't know how to care for their child or they're afraid of stepping on the nurse's toes. I agree that it's important for parents to get away, etc, just as it is for parents of "normal" children to have time away from their children.

I'm sure there are some parents who DO take advantage because they may not *want* to parent a child with special needs. I don't do private duty, but maybe there's another reason, besides being lazy, terrible, uncaring parents, that they act the way they do. I've also known nurses who are *very* controlling. Maybe a previous nurse set the expectations for the parent and told them to stay away while the nurse was there.

Have you tried to talk with the parents? What is your relationship with the parents? If they don't care for the child because they're scared or don't know how, then maybe there's a great opportunity for you to do some education.

mustlovepoodles specializes in OB/GYN, Peds, School Nurse, DD.

Hmmmm, I get what you're saying here but I have a different perspective. Obviously, I don't know this family and maybe they are just a bunch of lazy warts. Maybe not. Sometimes a situation isn't all it seems to be.

I have a 17yo son who is severely mentally disabled.My DH is also severely disabled with heart/lung disease. We took total care of DS for the first 14 years until we were awarded funding for a part-time CNA, a few hours a day 5 days a week. I cannot tell you what a relief it was to have someone else take over some of the load. DS operates at about a 6-18mo old level, so he needs full assistance with everything. He's also a "runner", so keeping him safe was a HUGE part of our day and night. Having our nurse here meant that i could continue to work during the day and have some down time with my DH in the evening while his CNA took over for me for several hours.

By the time DS was 15, he was as tall as me and strong as any ordinary teen boy. Unfortunately, that was also about the time that I suffered a serious nervous breakdown partly due to the enormous pressures at home. I was hospitalized at one point and it took me nearly a year to get back on my feet again. It was clear to us all that DH & I were not going to be able to take care of DS much longer. We started working actively on finding DS a permanent place outside our home. In the meantime, DS suffered 3 significant falls resulting in fractures, one a hip fracture, due to difficulties monitoring him 24hrs a day. The state granted us more CNA hours but it still wasn't enough.

DH and I were utterly exhausted with the constancy of the supervision, not just the physical aspects of the daily care. If you haven't walked the walk, you really can't understand how it drains you to be on call 24hrs a day for years and years on end. Even with CNAs helping with the heavy lifting, we were still so worn out with DS that it was hard to manage on those weekends or holidays when they had the evening off. Although we had CNAs to help us take care of DS, sometimes we just wanted to be able to go away for the weekend or just have a romantic night at home without the eyes of our paid caregivers on us. '

In July, we received final approval for DS to be moved to a group home. A lot of people have commented to us that we must be so sad to "give our child away." Not exactly. The new caregivers are fabulous. They're younger and stronger and there are more of them, too. I think it's very easy to pass judgement on parents. Sometimes parents are just not good parents. Some are lazy. Some suffer physical and mental illnesses. And some have just given up entirely due to the sheer weight of responsibility.

DS is thriving in his new home and we are thriving again in ours. Now, when we go visit him we get to just be his parents. We get to enjoy our time with him because we aren't having to be in charge all the time. Looking back on it, I don't know how we did it for 17 years. Well, 14 years by ourselves and 3 years with CNAs. I know that some people have passed judgement on us and found us lacking. But I never saw any of them lining up to take our place to give us a few days respite.

I think nurses have to walk a fine line when judging the parents of their little charges

nicenurselpn specializes in Pediatrics and geriatrics.

Hmmmm, I get what you're saying here but I have a different perspective. Obviously, I don't know this family and maybe they are just a bunch of lazy warts. Maybe not. Sometimes a situation isn't all it seems to be.

I have a 17yo son who is severely mentally disabled.My DH is also severely disabled with heart/lung disease. We took total care of DS for the first 14 years until we were awarded funding for a part-time CNA, a few hours a day 5 days a week. I cannot tell you what a relief it was to have someone else take over some of the load. DS operates at about a 6-18mo old level, so he needs full assistance with everything. He's also a "runner", so keeping him safe was a HUGE part of our day and night. Having our nurse here meant that i could continue to work during the day and have some down time with my DH in the evening while his CNA took over for me for several hours.

By the time DS was 15, he was as tall as me and strong as any ordinary teen boy. Unfortunately, that was also about the time that I suffered a serious nervous breakdown partly due to the enormous pressures at home. I was hospitalized at one point and it took me nearly a year to get back on my feet again. It was clear to us all that DH & I were not going to be able to take care of DS much longer. We started working actively on finding DS a permanent place outside our home. In the meantime, DS suffered 3 significant falls resulting in fractures, one a hip fracture, due to difficulties monitoring him 24hrs a day. The state granted us more CNA hours but it still wasn't enough.

DH and I were utterly exhausted with the constancy of the supervision, not just the physical aspects of the daily care. If you haven't walked the walk, you really can't understand how it drains you to be on call 24hrs a day for years and years on end. Even with CNAs helping with the heavy lifting, we were still so worn out with DS that it was hard to manage on those weekends or holidays when they had the evening off. Although we had CNAs to help us take care of DS, sometimes we just wanted to be able to go away for the weekend or just have a romantic night at home without the eyes of our paid caregivers on us. '

In July, we received final approval for DS to be moved to a group home. A lot of people have commented to us that we must be so sad to "give our child away." Not exactly. The new caregivers are fabulous. They're younger and stronger and there are more of them, too. I think it's very easy to pass judgement on parents. Sometimes parents are just not good parents. Some are lazy. Some suffer physical and mental illnesses. And some have just given up entirely due to the sheer weight of responsibility.

DS is thriving in his new home and we are thriving again in ours. Now, when we go visit him we get to just be his parents. We get to enjoy our time with him because we aren't having to be in charge all the time. Looking back on it, I don't know how we did it for 17 years. Well, 14 years by ourselves and 3 years with CNAs. I know that some people have passed judgement on us and found us lacking. But I never saw any of them lining up to take our place to give us a few days respite.

I think nurses have to walk a fine line when judging the parents of their little charges

You have summed up my thoughts exactly!! Some parents are just scared when it comes to taking care of a special needs child. I was scared to death at first, but with awesome nurses teaching me and helping me I got through it.

There is nothing wrong with placing your child in a group home or ltc for special needs kids. That is what we are here for. I have walked in these parents shoes, so I am very aware of their feelings. I tell parents it is ok to ask for help. That doesn't make you less of a parent. Some parents do not have family to help them.

I kept my son at home for years. I was eternally grateful for the nurses that helped us. At one point, when my daughter was born, we made the decision to place him in the ltc that I now work at. (this was over 20 years ago). I know the guilt and anguish parents face when they have to make a decision like this. I didn't have family who was willing to help me at all. My parents lived cross country, and my inlaws were frightened of the thought of hurting my son.

The person who criticized me the most, was my mil. She never once offered to help with our son, or even come over to learn to help take care of him. In fact, she only held him a handful times in his life.

Point is, there are good ones and not so good ones. You need to make a decision. Yes, there are parents who take advantage of the help they receive. There are some parents who are just over whelmed with the prospect of taking care of a special needs child. Parents need a break sometimes. It is both mentally and physically exhausting at times. Add to the mix "normal" children and it can get more stressfull. I have seen cases of where the healthly sibling ends up resenting the special needs child due to the amount of attention they need.

I wish you good luck in whatever path you choose.

Edited by nicenurselpn
added another thought......darn sometimers!

I'm not in this field, but I was wondering what the job description is when a nurse cares for a peds patient in home. Is it total care? Does that mean total responsibility for the child during your shift, as though the parents aren't there (even if they are in the other room)? Would families expect the same of a home care nurse of an adult patient or Alzeheimers? Interested in details before I explore this career option. Thanks!

lovelane78 specializes in Hospice, Adult and Pediatric Home Health.

"Sometimes I wonder if these parents with special needs kids weren't meant to be parents but our medical technology saved the kid." EXACTLY! After working with some of these kids who have no quality of life and never will AND the parents knew early in the pregnancy that there were severe issues, I have changed my stance in abortion. These kiddos are suffering because the parents were selfish, and now hate taking care of thier own child ....sorry but true.

lovelane78 specializes in Hospice, Adult and Pediatric Home Health.

Yes, pretty much. U have a shift and your pt is total care during that time. Beware, sometimes the families make it hard

Ok I have to rant and I know some of you feel me! I am BEYOND sick and tired of being taken advantage of by my pedi parents. They just flat out don't take care of thier child and expect you to do everything. And WHY am I here taking care of your child when you and your husband are here just lounging around the house, running errands, and going out to eat? Why am I here if YOU are here? You come in every few hours to see how your child is doing and then out the door u go! Why am I here stuck sitting in a small room for 8 to 10 hours while mom is at work and dad is sitting in the recliner ALL day playing XBOX? Why are you throwing a damn fit when I call you an hour before my shift and tell you my daughter is very sick and I have to cancel my shift...because you are going to be home all day but now you can't go to your yoga class and meet a friend for lunch. OMG, you have to take care of your own child! What a horrible thing it must be not to have a nurse there to be a parent so you don't have to! UuuuuGgghhhhh these parents are ruining my desire to do private care. TAKE CARE OF YOUR CHILD!

I have worked private duty in the past and witnessed the same parental behavior you are talking about. I had a very different perspective on it, though.

These people are just trying to have a few hours a day where they can have "normal lives," free of worrying about the needs of their disabled child, and I was more than happy to provide that. Yes, having a "normal life" might mean lounging around the house, playing video games, going out to eat, and running errands. What's the problem?

I feel bad for the parents you are judging so harshly. They didn't choose to be parents of special needs children but you DID choose to be a private duty pediatric nurse. Maybe you're in the wrong field?

My sister is special needs. My parents have been taking care of her for over 30 years all on their own. They've NEVER had a respite. My mom is in her 60s and has to lift a full grown adult 2+ times per day. I actually keep trying to convince her to take advantage of some home care services that I know they'd qualify for.

I thoroughly believe in the respite theories. I get that it's exhausting. I understand when things are new there is fear and being overwhelmed and intimidated. But what I see in the hospital, and I think makes the difference between the annoying families and the families that you'll do whatever you can to help in any way possible is the sense of responsibility vs. the sense of entitlement.

There are families like my parents, and quite a few of my frequent flyers, that feel it is THEIR responsibility to care for their child, and are appreciative of the help they get fulfilling THEIR responsiblity at the hospital, from home care, etc. These are the ones that if they're in the hospital, I try to give them a respite, a break from the exhaustion of caring for a special needs kid.

Then there are the parents that feel they're entitled to have someone else care for their kid. Basically they popped out a kid, it wasn't what they ordered/expected, and now it's someone else's responsibility to take care of their kid. If their kid came out without the special needs, they'd likely be taking advantage of their family and friends to babysit all the time and getting mad when they won't help.

poppycat specializes in pediatrics; PICU; NICU.

I've been doing private duty Peds for over 5years & in that time I've only had 1 family that I couldn't tolerate. The solution was simple: I told the agency I would not work with that patient any longer & they found me a new patient. I have been with the same patient now for 4 1/2 years. I work nights with him & his family is awesome. He has a trach & is on a vent. His parents change the trach instead of the nurses doing it because that's what they're comfortable with. Other than that, the nurses do total care. His parents are very open to suggestions of how to do things differently or easier and they have no problem caring for him when there's no nurse scheduled.They appreciate all the nurses on the case so much that we even get gifts from them for Christmas & Nurse's week.Not all families are this appreciative but they're not all "lazy" either. I can't even imagine how exhausting it must be to have a special needs child. We are there to help them cope with a difficult situation & to allow them to have some semblance of a "normal" life.If the situation is so horrible that you're not sure private duty is for you, then you need to leave that patient. Your attitude is most likely coming through to the parents whether you know it or not.

SDALPN specializes in Peds(PICU, NICU float), PDN, ICU.

Its interesting that the nurses posting haven't worked private duty or have only worked a few cases. Not all parents are like that. But the ones that are like that act entitled and unappreciative. It does make a nurse frustrated. A lot of parents like this type if parent are the ones living off the system and taking advantage. Then they get mad if they don't get their free services. Some of these parents get 20 hours a day. 4 hours is not too much to ask the parent to do. If they can't handle that, they need to out the child in a facility. Saying these parents are scared is an excuse. I've seen the type. They aren't scared, they are lazy. If they are that scared, they have no business taking care if their child. I watched 2 parents in a case who stayed home all day with 20 hours of care. They also took a nap every afternoon after an exhausting day of watching TV. Then they got up and watched more TV. Then would sleep for 12 hours. As long as they slept they were happy. If they were interrupted from even watching TV, they let the nurse go.

Im blessed to have awesome parents for my private duty case. They are totally involved and usually by the time I get there they have all the cares done except meds. Lol I think they like to give me something. They always ask if I need help and know how to do and actually do everything im able to do. So maybe you can just find another case? Not all parents are disinterested. Dont lose faith!

I do understand where you are comming from, I once oriented on a case (that I didnt take) because the mom had hired help for EVERYTHING, a nurse for her son a nanny for her daughter, an assistant type woman who did cooking/cleaning/shopping and this woman was on the phone THE WHOLE 8 HOURS i was there... Never wrnt back to that house... Otherwise favt is that most caregivers are burnt out... They may sleep during the day but maybe the child kept them up all night or they stayed up worried. When my mother was caring for my grandma the only time she got aides (2hrs 3x wk) was when my grandma came from a hospital stay. You have no idea what it will do to a person until u do it 24hrs 7days a week. The only time my mother got a real break was when my brother or I stayed with my grandma so my mom could go out with friends or sleep at her boyfriends for a night, otherwise she was exhausted mentally emotionally and physically... She never slept more than 3 hrs in fear of my grandma wandering or hurting herself...she lost weight and her appetite and looked like hell... She couldnt go anywhere unless she brought my grandma who was like an 80 year old 150lb toddler. I wish my mom would have had more help, and even if she slept the whole time the nurse or aide was there... It was what she needed... IMO i am a home health LPN and i know that my patients caregivers need breaks... Its not my right to judge weather they sleep or watch tv or go shopping... I am there for 8,10,12,14 or 16 hours not 24

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