Published Aug 18, 2012
You are reading page 2 of Pediatric patients...parents are KILLING me!
"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.
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?
wooh, BSN, RN
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, ADN, BSN
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.
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
There are parents that do a good job of caring for their patient-children and those who seem to take advantage of the help they receive, with all kinds of behavior between two extremes. In all cases, though, it is the responsibility of the paid caregiver to provide professional care and to maintain appropriate boundaries while doing so. You are being paid to care for the patient for the eight hours that you are in the home. The parents can choose to be gone for those eight hours if they want. They are not obligated to come into the room and do the care that you are being paid to do, although many of them will help out to varying degrees. Be careful not to let judgemental attitudes show, it can poison the atmosphere to the point where the parents decide they need a different nurse. Then your complaint will be that you don't have a job.
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....
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....
Just an fyi as a PDN-RN peds and a mother of three myself, I NEVER get time to go to the gym, food store, hair dresser, shopping, or ANY adult outings. PERIOD. granted my children are not technology dependant but each has thier own medical and emotional challenges that tax our family to the limit. I feel for the OP. Ive been a PDN for 6 years and I can tell you the majority of peds pt families take advantage of the nurses, treat them like crap and the DRAMA oh the drama!
Life is hard. For everyone. All the time. And yes its also unfair to boot. Free childcare sounds amazing to me, however ill never havr it at my disposal.
Honestly, I would prefer to do my job in peace rather than have a hyper-controlling, judgmental mom peering over my shoulder and criticizing to compensate for the crushing guilt she feels. My favorite cases are the ones where the parents leave me alone and let me do my job.
I like to tell parents that I am here for the patient, but I am also here to support the family and allow them to lead normal lives. I hate the idea that Moms alone must sacrifice everything and wait at the bedside with baited breath else be labeled a "bad mom," while the rest of the family isn't held to the same standards. I also detest watching marriages fall apart over the stress of a medically fragile child, and people missing out on the simple joys in life because it feels "inappropriate" to have fun with a sick child.
So yes, I'll be the first one to encourage Mom to run out the door and act like a functioning human being with a healthy social life. I'll be on board with Mom and Dad focusing on their marriage and going out to the beach, or to dinner, or a BBQ with friends. I'll reassure them that it is perfectly acceptable to seek personal happiness and satisfaction, and politely lower my head when they emerge from the bedroom all ruffled and pink-faced doing their "walk of shame" post-coitus.
I've got a case where the patient receives 24-hour nursing and the family is emotionally distanced, coming in twice a day to say hello and that's it. The patient is vegetative and has nothing remotely resembling consciousness, so contemplating the nature of her relationship with her parents isn't my concern. I do my job, they leave me alone with a wifi password and a comfy chair. We're good. :)
I encourage parents to live their lives as nekozuki does, but with the last one in particular, I found her to be argumentative as with everything the "babysitter" (her term for me), had to say. If I told her the sky was blue, she would give me a dozen reasons why it is not, to include "who are you to tell me the sky is blue?" You can't win against stubborn.
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