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Am I wrong here?


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I have a 14 yo profoundly disabled son - he is very medically fragile. I have a nurse two afternoons a week so I can take my younger children to dr. appts., piano, therapies, outings etc... The nurse takes care of him: changes diapers, colostomy, catheter, meds, central line care, baths, transfers him with a hoyer lift, stretches him etc. My son is like an infant: blind and can't communicate in any way.

 

The agency has been terrible about staffing this summer. We requested additional hours because our other children are involved in activities in June/July. We are supposed to receive a calendar at the beginning of the month with staffing, ideally a regular nurse. They haven't done that at all - just sent random nurses to my house each time for me to train. A different one each day! Well, that had meant that I haven't been able to leave my oldest to take my other son to his special ed summer day camp and my daughter to ballet. My husband and friend from church have had to help me with the driving.

 

Today, I had no idea anyone would even show up. And a strange looking man rings the door. Really strange looking. He says he's our new nurse :(. And it is his literal first day with the agency!!! I was furious. I had told them when I signed up with them I didn't ever want a male nurse. Just not my preference. I called the agency and spoke with the district manager to request a new scheduler - our summer schedule has been a disaster. Also, every date we have requested respite this spring has been forgotten. Forgetting that I had shared in writing at our orientation I didn't want a male nurse was the last straw. And that he looked creepy was just upsetting.

 

The district manager was so condescending. She kept insinuating that I was neurotic to not want a male nurse, she said we sometimes get requests from mothers with daughters, but not sons!!! I just think that's rude, my child is totally helpless, and it's a vulnerable thing to leave him with people when he can't communicate in any way to me if he is being well cared for. What are your thoughts?

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My thoughts? Pitch a screaming mimi. Tell them that if they can't find a regular nurse to come in consistently, that you approve, that they will have to pay you for the time it takes for you to train each one.

 

Take your own words and repeat after me: "Don't sit there on the phone and try to make me look neurotic for not wanting a creepy male stranger in MY house watching MY helpless child." I find that sometimes when you say outloud what people are thinking (but not saying) you get great results.

 

Are they idiots?? When you have to sit there and supervise how are you suppose to get anything else done? Gah!!! Just send me the phone number, I haven't been in anyone's face for a while.

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I wouldn't leave him with that guy either! I also would prefer a female, and probably would insist upon it. Especially with a son who can not communicate to tell you how he was treated. Can you find another placing agency?

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My thoughts? Pitch a screaming mimi. Tell them that if they can't find a regular nurse to come in consistently, that you approve, that they will have to pay you for the time it takes for you to train each one.

 

Take your own words and repeat after me: "Don't sit there on the phone and try to make me look neurotic for not wanting a creepy male stranger in MY house watching MY helpless child." I find that sometimes when you say outloud what people are thinking (but not saying) you get great results.

 

Are they idiots?? When you have to sit there and supervise how are you suppose to get anything else done? Gah!!! Just send me the phone number, I haven't been in anyone's face for a while.

 

 

:iagree::iagree:

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I don't suppose you have the option of utilizing another agency? So it isn't as if you can take your business elsewhere, so to speak. Nonetheless, you can insist upon having your very reasonable needs met. I will gladly speak to them on your behalf and make my point clear as crystal.;) I would first speak again to the district manager. If she begins telling you how your requests compare to the requests made by others, cut her short: "I'm not particularly interested in the preferences of your other clients. That has no bearing on the matter at hand." If she's condescending, let her know: "Your condescending attitude is less than professional. I'm sure you don't intend for me to train nurses on your behalf. To that end, I'll no longer be able to accept the revolving door staffing I've received this summer." If necessary, go over her head ~ even the district manager must have a manager.

 

I'd also put my complaints and requests on paper. Keep track of which nurses arrive on which days. Note that you didn't receive a calendar schedule. Be very specific about the unsatisfactory service. Keep a letter of the letter and send a certified copy to as many people as possible: Your insurer (if they pay for the agency); the district manager; anyone else in managerial positions. Perhaps laying it out there in black and white will get better results. So sorry you've had to deal with this.

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My thoughts? Pitch a screaming mimi. Tell them that if they can't find a regular nurse to come in consistently, that you approve, that they will have to pay you for the time it takes for you to train each one.

 

Take your own words and repeat after me: "Don't sit there on the phone and try to make me look neurotic for not wanting a creepy male stranger in MY house watching MY helpless child." I find that sometimes when you say outloud what people are thinking (but not saying) you get great results.

 

Are they idiots?? When you have to sit there and supervise how are you suppose to get anything else done? Gah!!! Just send me the phone number, I haven't been in anyone's face for a while.

 

 

:iagree: Remudamom, do you happen to come in a pocket-sized version that I could carry along with me where ever I go?

 

LNC, I would be extremely frustrated, too. No, you are definitely not wrong.

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Remundamom rocks!

 

With two exceptions, it is my policy not to leave my children, boys or girls, alone with any man. I would not hire a male nurse, especially one that makes me uncomfortable. And I would *not* be bullied by some dysfunctional agency into going against my God-given maternal instincts.

 

Go get em, Mama!

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My thoughts? Pitch a screaming mimi. Tell them that if they can't find a regular nurse to come in consistently, that you approve, that they will have to pay you for the time it takes for you to train each one.

 

Take your own words and repeat after me: "Don't sit there on the phone and try to make me look neurotic for not wanting a creepy male stranger in MY house watching MY helpless child." I find that sometimes when you say outloud what people are thinking (but not saying) you get great results.

 

Are they idiots?? When you have to sit there and supervise how are you suppose to get anything else done? Gah!!! Just send me the phone number, I haven't been in anyone's face for a while.

 

What she said. :) Rah Rah go Remudamon, go!

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:grouphug: LNC :grouphug:

 

I also have a profoundly disabled 14yo son. With a few medical exceptions, he is much like yours.

 

It is so unfortunate that this has happened, but it happens a lot. Don't let them get away with it. You got as far as getting the nursing help, that couldn't have been an easy path; I know because I'm still on it. So stay strong. You must have known in your gut that something wasn't right about the situation.

 

Our children cannot fend for themselves. I have had times when I just knew that the caregiver wasn't "right" and I have stayed home. You just need to let them know that this isn't just a preference, but you will not allow a man to take care of your son and that you expect the nurses schedules on a certain date and that you will not train the nurses unless you are compensated with additional respite hours or pay or ...

 

It's easy for me to say to do these things and another to do them, but along the line, you just get tired. Some days it's hard to fight, but I just keep in mind that its for my kids who can't fight for themselves. Unfortunately, these places all know that a lot of moms get tired and do stop fighting and they count on it.

 

So stay strong and we are behind you 100 % :toetap05:

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Do you have any type of mediation available? My son has a case worker that will go to bat for us on different issues-schools, insurance problems ,etc. I really don't need her help that much but it's nice to have her if needed. My son is also registered with the Dept of Mental Retardation. They offer assistance with issues and help us with funding for handicap accessibility.

 

If you don't mind the question-Who is paying for the nursing care? If going up the chain at the nursing staff isn't helping then speak with the one who pays them. If it is through insurance then maybe complain to your insurance company. If it's through the state then complain there. Write everything down, dates , times, number of different nurses, etc. Keep a detailed record and try to keep as calm as possible. *I* would be upset but you can't act upset. Then you would appear as "unreasonable" or "overemotional" This would hurt your credibility. Ask me how I know.

 

I total agree on the male nurse thing. My son is almost 9 and I worry about the fact that he can't tell me if someone hurt him at school(he's perfectly fine and I'm not worried about his teachers) I would certainly never allow him to be alone with some creepy guy all by himself at our house. You keep trusting those mom instincts. They are usually right.

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Now, I have to stand up and defend the THREE wonderful male nurses from my church. Two of them are homeschool graduates and I think it is an EXCELLENT field for a compassionate Christian young man. If I had a 14yo ds like the OP I would prefer one of these young men to care for him over about 2/3 of the female nurses I have met. However, it is wrong for the agency to go against your wishes and I am sure if your male nurse seemed creepy you should always follow your instinct.

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Document, document, document.

When ds was living apart from us, we documented every. single. thing. that went wrong with his placement. Because my husband put every incident in writing, appeared professional/calm/rational, and did not let one single thing go by, our county no longer recommends the facility that our son attended (at least I've been told this). Hopefully changes are being made. They could lose their accreditation. (Here's hoping..)

 

Be the squeaky wheel for your son, but stay calm, polite, and firm.

 

I'd be tempted to blast the h out of them all, but don't give in to that. Vent here. We all share your outrage. Stay on them.

 

And no, you are not being the least bit unreasonable/demanding, whatever inappropriate thing they were calling you. You are right, 100%.

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Thanks so much for all of the replies! Our case manager from the insurance company came out this morning - I called her this afternoon to let her know what happened today. She said she would handle it herself if things don't rapidly improve.

 

I've used most of the agencies in our area over the last 14 years that serve pediatrics. So, it's not so easy to just switch again! It's hard to find an RN willing to come regularly 2x a week for only 4-5 hours, so our case manager recommended increasing our hours to 7 hour shifts to see if that helps. I don't like having someone around during school, but it will be okay if we must.

 

I don't have anything against male nurses in general. I've had many in ERrs and PICUs over the years. We keep in touch with several. But, to me the difference is having one unsupervised in our home with no accountability, while I'm gone with my other children. Also, the creep factor was serious! I was firm but cordial to the agency, so I think things will improve. Or we'll have switch in two weeks. Thanks for the reassurances that I'm not some kind of neurotic, crazy woman!

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. The district manager was so condescending. She kept insinuating that I was neurotic to not want a male nurse, she said we sometimes get requests from mothers with daughters, but not sons!!!

 

It sounds like you did get some results today, so I'm glad of that.

 

I just kept thinking about this part of your post. Being a mother of an only child who happens to be a BOY, I take issue with comments like hers...as if a male child is less of a child, less vulnerable to being harmed in any way than a female child.

 

:grouphug: to you...

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My thoughts? Pitch a screaming mimi. Tell them that if they can't find a regular nurse to come in consistently, that you approve, that they will have to pay you for the time it takes for you to train each one.

 

Take your own words and repeat after me: "Don't sit there on the phone and try to make me look neurotic for not wanting a creepy male stranger in MY house watching MY helpless child." I find that sometimes when you say outloud what people are thinking (but not saying) you get great results.

 

Are they idiots?? When you have to sit there and supervise how are you suppose to get anything else done? Gah!!! Just send me the phone number, I haven't been in anyone's face for a while.

 

ITA! Let 'em have it!

Holly

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Your own personal insurance covers these visits? So, are you using a private service? If so, I would make *darn* sure the management knows who is paying them. While there is a big turnaround for oncall healthcare providers (ie staffing businesses, which is what most of them use), I would suggest scheduling a meeting or phone meeting to discuss who/when will be at your house. If I misunderstood and this is taken care of by medicare or county/state $s, you might consider contacting your local ombudsman (sp?) because, even though your ds is not an adult, they will have the proper information for you. Last I checked, the ombudsman is a very scary individual to healthcare providers.

 

I also agree that you need to document everything; names of everyone you speak to, times, everything.

 

All in all, YOU ARE NOT WRONG here.

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you haven't gotten any respite. The number one purpose of respite care is for you to get a break. A different nurse who must be trained by you each visit is not respite. If you can't leave and do "normal" activities with your other children, it's not respite.

 

I see the male nurse request as secondary. The agency has failed in its primary purpose. The male nurse was again someone new who you would have had to train. And with all these new people the agency is rotating through you've got to wonder about the background, education and references.

 

I would insist they provide you with someone who can commit to consistently coming. Since you desire someone female, then insist the person be female.

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