Pediatric patients...parents are KILLING me! - page 2

by lovelane78

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... Read More


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    Quote from mustlovepoodles
    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.
    Last edit by nicenurselpn on Aug 18, '12 : Reason: added another thought......darn sometimers!
    umcRN likes this.
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    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!
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    "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.
    wooh and whichone'spink like this.
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    Yes, pretty much. U have a shift and your pt is total care during that time. Beware, sometimes the families make it hard
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    Quote from lovelane78
    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?
    mustlovepoodles likes this.
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    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.
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    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.
    mustlovepoodles likes this.
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    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.
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    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!
    elprup likes this.


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