It's been a long time of fighting it. It's been wearing on my controlling nature. Shouldn't a mother be able to take care of her child herself? My mom did and her mom before her. What's wrong with that mother if she can't? Am I going to hate having someone else in our home or will it fit like a glove and just work?
I'm a picky person. This first nurse may not be the perfect fit. She might be Glenda The Good Witch.....you never know.
I have to tell ya...at this point I wish I had the money to hire a nanny that could help with house duties and Caleigh. A nurse doesn't do that. You should see the notebook that has Caleigh's plan of care in it. The nurse is a nurse. Charting throughout the day. Filling out incident reports. Checking off medications at the beginning and end of every shift. A nanny wouldn't even have those things on their mind. I seem to have a stereotype set up for a home nurse. Like they start off looking at your child in a different way. A disabled way. A medical way. I don't want that for Caleigh. Or maybe I don't want that for me? A nanny is in your home to help the child and you in a different way. A more naive way. Maybe my predisposed stereotypes are wrong. I hope so. For right now, nursing is covered by our insurance and Caleigh's MDCP medicaid. It's covered and it is accessible to us right now and we need the help.
If Caleigh has a doctors appointment, we have to take our nurse with us. If she has a therapy appointment out of the home, the nurse goes. I feel like the public perception of that is that I can't do it by myself. Why should I care about the public? I shouldn't.
I can do it by myself, with my amazing, supportive husband, but I can't do everything else too. What I can't do is keep up with the laundry, clean the dishes, vacuum, go shopping, go running. I can't be the friend I used to be, the daughter or granddaughter I once was. And my gosh, if you could see my scary eyebrows right now! There's just no time to get them waxed. I cancel one hair appointment after another. I'm still lucky if I get a shower everyday. Although Caleigh never misses her bath. Priorities change when you have a child no doubt about it, but when you have a special needs child your life tends to stop in it's tracks. I'm not complaining, don't get me wrong. I'm just yearning for some balance in our life. Eric and I have been treading water for so long now, it's time for help.
I went to the doctor this morning. I've got an upper respiratory infection with lots of fluid behind my ears. No wonder I don't feel good. I don't know if tomorrow will be the best day to start nursing, but in all fairness I don't think it will ever be the perfect time.
So those of you out there with home nursing....how did you start out? Do you have a routine in place for your child that the nurse follows? Does your nurse help with therapies as part of that routine? Do you treat her/him like an employee or like a friend? What have your unique experiences been with nursing?
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13 comments:
1. LOVE THE NEW BLOG DESIGN!!!
2. Whatever you do, don't read my stories about nursing. On second thought, do!
3. If you are as controlling as me,which I suspect you are...the transition may be tough on you. The first few weeks you can let them watch you...then release duties as you see fit. kwim?
We have had some GREAT fits and some not so great in the interim. Hopefully you will get lucky.
((HUGS))
Jude's seizures picked up to the point that he received a nurse about a week ago. So far we just adore her. She only comes 9-1 M-F, but she has been a blessing. She is so attentive, and does so much for him. Plus, she does his linens, sterlizes his toys, etc. I hope you find one just as wonderful. The best thing is we can tell she truly cares for him. I will say a prayer all goes well.
I have nursing for my 4 1/2 yr old son. I too am a control freak, not wanting someone else to do my job. I am also a nurse myself so I am very critical. THe best advise I have is to not settle. I had a few nurses till I found the right fit. The nurse I have now is amazing she does all his therapy, etc and that allows me to just be his mom, not his therapist or his nurse when she is there. It takes some getting used to and will be stressful but once you find the right fit it will be totally worth it. Take the time for yourself as your daughter will need you for a long time to come!
Nursing care is my dirty little secret. Or my guilty sanity saver. Or just an incredible blessing. It can be taken away with the switch of a pen. But we've had it since the day I started back at work full-time.
We've had one full-time nurse for a year and a half and a new full time nurse since Thanksgiving. There has been a highly volatile cast of part time nurses, but we've settled into a very nice pair. The quality of home nurses is all over the map and I've had my share of nurses who lasted one shift, exactly. But there are some really good ones out there. We try and keep them.
They are nurse-nannies. Washing Bo's excessive laundry, doing all the medical stuff you mentioned, and helping with appointments. It's so wonderful having another pair of hands to catch the vomit from motion sickness so you can keep driving and get to the appointment on time. Not to mention, give you time to shower (bliss!), or carry the diaper bag and pumps and, and, and, all that. We keep our nurses apprised of all the therapy goals and excercises. They help with that, and reading to him, and putting together his bag and doing medical inventory. It frees up your time for you to be the mom and NOT the nurse, as much.
Plus, if they are experienced, they can help you tweak your current set-up of give you advice and be a sounding board for things Caleigh is going through. We treat them like an aunt who is technically competent. Respectful, correcting technique in a professional co-worker type way, and always with love, as they both show that love to our child.
With your persistance, you will find a nurse to match your needs, even if you don't really know what those are yet. And once you find her/him, it will make your whole family's life easier, more relaxed, and more fun. We schedule a late Friday each week so Jose and I get a datenite, weekly. It is an indulgence, but has been so important to our marriage's stability.
Good luck!
Well, you know my story. It is definitely a process for everyone involved.
I'm so ready for you to get in the swing of things....so we can go running and get our eye-brows done together :)
This is going to be a good thing.
Agreeing with the others....time to form a relationship, someone who will do more than nursing. I am picky about the nurses I work with during therapy visits. Some want nothing to do with me - and therefore not learn ways to handle the child to promote development.
When you are well settled with a particular nurse, you can teach her to put Caleigh in the stander - or ask the PT to teach the nurse - whatever works best for you.
I think you have reason to hope for a good relationship. Barbara
I hated home nursing, I felt like i couldn't be myself in my own home. Home nurses are usually ones who cant work in real medical world and want a easy job.
You have no privacy till they go home. Just be careful!
I don't really have advice to share. I am praying that all will go well and you find a nurse that is a good fit for your family. Once you find a good fit, I think you will enjoy the break. And by all means, do not feel guilty about it. You need to be recharged so you can give your best to Caleigh. You both deserve that!
I think it is a wonderful idea for you guys! Keep an open mind and perhaps it will be the right person! I know that I feel that way with Rocio...and it took going through someone I didn't like to find her. Positive thoughts coming your way...can't wait to see y'all. Hugs, Jen
Holly!
You have done an AMAZING JOB! I cant say I have been in your shoes because I haven't but what I can say, is that Caleigh deserves a fabulous mother, as you already are plus some brain cells left after all her cares. She needs a well rested mother, who is comfortable in her own skin from working out, and or getting a girl's eyebrows did! Caleigh, also deserves to witness an awesome marriage which takes time to nurture with a special needs child. Movie dates or a short dinner, can jump start the week with so much joy. My husband is a firefighter too, so knowing you do this alone every third day by yourself is pretty courageous.!
Wish I had some good advice to give, but it's just me at home with Charlie! I wish you luck and hopefully you'll find someone who is a good match.
I would say that i know some families who have hired respite workers that have practically become members of the family. Good things can happen.
I am a nurse who works in a few different homes- it's an extra job in addition to my NICU position- so I am not just looking for an easy job and I do work in the "real medical world".
here are some things that help...
1. set your "home rules"- where they can go (living room, basement, etc), what you would like them to wear (scrubs or nice street clothes), and your expected extra duties (like sanitizing her toys or cleaning her equipment).
2. A routine to follow is WONDERFUL. It sets a clear guideline of expectations. It also helps to have a book or binder that you can keep with all of Caleigh's updates- like new OT or PT exercises that the RN can work on. A quick browse through the book and she can be updated on everything that has happened since she visited the last time.
3. The nurse will only feel as comfortable as you make her. I have worked in wonderful homes where the professional boundary was maintained but it was clear that they were appreciative of my presence. I have also worked in homes where the parents were upset that they needed the help and made it clear I was unwelcome and unwanted. It is miserable on everyone's part.
4. Just a little extra touch- if you clear a tiny space for the RN for her lunch on your counter or in your fridge it is such a nice gesture! I have worked with many families who do not remember that during our 8 hour day, we do need to eat lunch. I always bring mine from home but many times there is no where to put it.
Good luck!
I have been in this same situation. You have no problems taking care of your child; it's the REST of your life that is getting neglected. And for me that meant 2 other children as well. It is rough, I truly know. At one point I thought the hairs on my legs were going to be longer than my husband's!! :)
But, not only am I a mother of a severely involved special needs child, I myself am a nurse.
You would think that all nurses are caring, compassionate and competent but so not true (as you already know). Nurses are human and nursing is no different than any other job in the sense that you've got your good ones, you've got your bad ones and all personalities in between. To have a blanket mindset of "Home nurses are usually ones who cant work in real medical world and want a easy job" is right up there with racism.
I am glad you are accepting the help! Don't stress yourself out more by worrying if you are going to find "the perfect fit". You will. It might take a little time but you will. Just like you chose her doctors that work well with you, and therapists, and even as simple as choosing the perfect diaper bag you will find her and it will all work out!
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