View Full Version : we will get burnt from caring for our son?

04-15-2009, 05:18 PM
still in hospital, Jasper now has a uti poor guy... the heads from the nursing company came to "visit"

we had cut our nursing hours, Jasper is very easy to care for and we do not need the nurses. We kept one lady, as she is great with J, reads to him, does exerices etc, researches things for us, but the other two just sat on the couch and watched tv, I am home all day, I work freelance, if I get a job, dh stays home, this is what we planned before all this anyway, so they tell me I will get burnt after a while, I will want to get out, and yeah on saturday or sunday I can go out when dh is home from work, but really, who has money to go out? I am not a glamorous person, I like to garden in the back yard, practice my banjo, that's my life, read a book, Jasper is on mist only, the equpiment isn't hard to carry or bring anywhere, now that we are comfortable, and I said I am more tired of people telling me what I want than anything else.

sorry to vent, I know people need nursing hours and they don't have them, I wish they were better at looking at situations and judging them properly instead of assuming what we need, hey how about listening to the parents? If we need help we are not afraid to ask

04-15-2009, 05:29 PM
We never got nursing for our son. Before we discharged, they told us we would NEED nursing because we would get burnt out and that it would be too much. But we have done fine now for 8 months. I work in the eves part time and my hubby works during the day. I think it just depends on you and your son.


04-15-2009, 05:31 PM
I get crazy looks when I tell people we don't have nursing as well. We were not approved for nursing. Now that we are used to the trach, caring for Addisyn has been no different than caring for any other baby. She sleeps in her room on her mist collar and oxygen. She is attached to her pulse-ox and has a baby monitor. It has worked out just fine. I don't get burnt out caring for my other kids, and things just seem easier now. It has been 3 months since discharge and we are all doing well.
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04-15-2009, 06:03 PM
we never had nursing either, we would get strange looks everytime the hospital people would ask about nursing hours, but to be honest I just didn't want one more non family person coming into my house, what with the ot, pt, st, early intervention blah blah blah...plus I am just horrible at firing people, we had a wonderful lady who came to clean our house 2x a month, she was pretty short and didn't clean below her knees or above her head...but we loved her and so she was with us for 11 years till we moved...I think it all depends on the situation but they should never assume that everyone needs nursing. you do what is right for your family!

04-15-2009, 06:12 PM
Do what is best for you. Assuming what you need, is no ones place.

We didnt have nursing until Emma got on her vent, then we had it for years and it was so unneeded. When we finally went to no nursing it was a great day for us and has been ever since.

That said, a lot of people do need it and can't get it, and that is just sad. I think drs and insurance companies should leave it up to parents what they need. Some needs lots and others none at all. We really felt the nursing care was forced on us and it just did not work well for us at all.

04-15-2009, 06:55 PM
We did not have nursing in the beginning, but as Tommy's heart grew worse and he required O2 24/7, and he got older and more active, we really felt we needed nursing just so I could get some rest. It started a long, drawn out fight to get it approved for our situation and even then, it ended up being a nightmare for us.

04-15-2009, 07:11 PM
We used nursing. For our situation it made life a lot easier to have night nursing. ONce we got a team of great nurses we rested easily at night. But what we also had was a stock of available hours. So when we went out and got a sitter for our other kids we had a nurse there for Parker. Things will come up. Maybe you can keep some hours available for use as needed.

04-15-2009, 07:22 PM
I was approved for nursing, and it lasted 5 weeks- I couldnt stand other people telling me what was right for my son(especially since he was so long in NICU and I felt so out of control with his care then) I havent had anyone now for 2yrs and it is great..I had much more stress when nurses were here- and felt trapped in my house cause they didnt know what to do for him(loved to watch soaps and hold him all day so he was up all night, and when I was on my own he was spoiled into thinking he should not be put down) - - I am not overwhelmed or exhausted because I care for Joseph anymore that I would be if he was a "typical" nonmedically dependent child. We have him in his own room, with a very loud baby monitor so I can hear if there are any alarms. I think I actually got less sleep with my other kids- at least with Joseph there are alarms if he were to stop breathing or desat. (Yes, I am the type of mom who checks on all the kids at least 3times a night- used to drive DH crazy when I woke up the the girls when they were little to see if they were breathing)

04-15-2009, 07:42 PM
Everyone is different... If you have one nurse that is flexible and is willing to work hours you are wanting, go with what works. For us, we had a bunch of NICU/PICU nurses from the hospital that were willing to work through our home agency and they only wanted 4-6 hr shifts or a few weekend hrs, so they split days or "babysat" him Friday or Saturday night.

When Ayden was little, we would have date night and he would just sleep in his stroller. We went to dinner about 8pm and he would sleep and we could eat and get out of the house. :)

We knew Ayden was in good hands and that is what mattered.

04-15-2009, 07:52 PM
There are times I think having poor nursing is more frustrating and exhausting than not having any nurses (even the good nurses)! You know your needs best, and if you don't want nursing or as many hours and they are trying to give you, just tell them no thank you. But you do have to understand that you run that risk of never getting those state approved hours back again once you give them up. As long as you understand that, do what YOU want for YOUR family!

04-15-2009, 10:55 PM
I'm having a hard time with nursing as well. I can not decide on what I want to do about them. It is nice when they are here and I can spend one on one time with my other kids without having to run into my daughter's room with every beep but I also hate having someone else taking care of my child. I think this summer we are going to experiment with not having nurses on the nights my husband is off (he works the night shift) and use a little more day nursing so I can spend some time with the other kids during summer. I am going to just test and see if I will get burned out or not. Like everyone else says it really depends on your family. I already asked my dr. if it was okay and he said he felt like we could handle it but he said there are a lot of families he feels like could not take care of their kids well enough without having nurses. We have to remember they see it all and not every family can handle what they have been given to deal with. Just try out a little less nursing for a short time and see what you think. I feel so much better when I'm alone all day with my daughter and don't have nurses giving me their "suggestions". My nurses though pretty much sit in her room watching TV or on the computer and there to check on her when she beeps and they change diapers. It frees me up enough to get a few things done around the house--we also take advantage of them for date nights and church but I hope soon they will be gone for good. ;)

04-16-2009, 07:40 AM
like you say, every situation is different. we don't have nursing but i am aware that we also have it easy compared to most people. we still dont' get a night's sleep cos of suctioning etc, but you get used to it.

if you don't need/use nursing then there is a good reason for it and i would guess that even if you maybe did get "burnt out" there are other cures and ways to help yourself than relying on a nurse.

if you don't have nurses and you are happy that way then go for it!!!

04-16-2009, 09:04 AM
Everybody has a different level before burnout. Our kids and family/sibling situations all affect how we can handle our situations.

we had a low reserve when we came home from hospital after a 2 year stay. But the help we got was hard, because it wasn't quality, just quantity.

I have carried on with help and we have been home and on the vent for 3 years. Vent vs trache/O2 present different scenarios. If you want help at home it can take time to get the help that really is HELP and not interference. We now have a stable team of 2 main carers/1 nurse and a few casuals. I got frustrated with using agencies, all our carers are employed directly - it still is a curse having people in your house and getting a balance for your child and discipline etc. You have to be clear about how you want thngs done.

We came home with inadequate care, our funding was not approved initially. It was tough and I wouldnot wish that on any family. However, Mitch vomited frequently as well as desating. It was just dangerous.

If you are offered hours, don't turn them down, just find creative ways to use them (if you can).

I believe living with a trache child can be like having a newborn, you have sleep deprivation and you cope for a while. If the child starts sleeping thru the night without episodes you come right, but if they continue to need suctioning, or desat, or vomit etc. Take the sleep, with overnight care, and BE awesome to your child in the day. It took me a long time to accept help.
But help is only help if it is quality.

Do what works for your family, but guard your access to help - in case you need it and in case your situation carries on for a long time.

04-16-2009, 03:33 PM
Nursing is a mixed bag as presented by the pp. I will just say for us nursing was not covered until Austin was a year old. It was never really an issue to not have nursing -UNTIL- he learned to remove his trach, pmv or trach guard. Now we have safety issues. Prior to this I felt VERY comfortable driving alone with him etc. So for us to travel to multiple appointments (8 different specialists 45 minutes away) we NEED the nurse. I tried 8 hrs per day 5 days a week to start. The agency did warn me that I would "lose" the other hours. I was ok with that -UNTIL- he got pneumonia and we were released from the hospital. That week I got sick too, it really made me appreciate the nurses then!! Yes, we have "issues" but for the most part they are a welcome addition and just something I need to suck up and do for now. As a single mom there is no way I could do it all, even with some family help. So the nurses will stay until 1. he has his trach removed OR 2. learns not to pull it out. He is 17 months now so I am hoping that day comes soon!!!

If you like that one nurse and the time is sufficient for you then I say go for it. Just think a bit down the line and keep your bases covered.

04-16-2009, 04:13 PM
This is such a complicated and personal issue. I think it is important to acknowledge that there is something about the nursing that is not sitting well with you. There is nothing wrong with feeling that way, no matter what anyone in the medical world tells you.

We discontinued nursing last summer for a whole lot of reasons, including the sense on our part that we just needed to move on to a more "normal" family environment. There were a lot of things that were not working well with the care we were able to get, but in hindsight, a chunk of the problem was me. I just couldn't adapt to the idea. Even worse, I let some people who didn't know me decide that I couldn't do it. Worst of all -- I believed them for a time. Not at first, but after a little bit. Importantly, though, it was OKAY for me to feel that nursing was a greater imposition than we really needed. Maybe with another child with different problems, it would have been worth it, but not with Alex. There was a nurse in the NICU who stopped to see me a few days before our discharge. I told her we were still in the hospital because we were waiting for nursing. She said, "Karin, candidly, I think you will hate nursing. I just don't see you tolerating that level of intrusion." She was more right than anyone else, although I tried to adapt. I thought this was probably a criticism, but it wasn't. It was an observation on her part, as she had spent many hours with me in the hospital.

But, I have to say that if you can find one or two nurses you can trust for a few hours, hang on to some hours for "respite". Give yourself a chance to have a break later, even if you don't think you need it now. You might eventually find a family member or friend or hired nanny that you can train to your satisfaction, but don't leave yourself without any options.

I have to echo what some of the others have said. Our doctors supported us getting rid of the nurses. They were familiar with the available care, and they concurred that we were capable of caring for Alex without "trained" assistance. (I put that in quotes because I did most of the trach training for our nurses.) They also said that there were families who were NOT capable, and they would NOT consent, but they trusted us. In general, Alex was better for the switch, too. He was not ill-cared for (most of the time), but he was no longer spoiled, didn't have to sleep with the light on/nurse's computer movie blaring, have his diaper changed every three hours, or any of the other irritations that I simply could not manage to change. He slept in longer, and was happier. Plus, I can't rule out that he felt our stress and was reacting to it.

Long story short -- I'd keep your options open, but do what is best for your family. But, if you stop nursing, be prepared to be lectured for it every time you go in to the hospital or by every medical busy-body that comes into contact with you. I had a PICU social worker tell me that my son would get a plug in his trach and would die if I wasn't watching him with my eyes every minute -- just to scare me into bringing back the nurses. By then we had been months and months without them and alex was in the hospital for the first of the 3 surgeries he would need to be decanned. I don't know what kind of expression I had on my face, but she backed away from me and left the room. :devil: No joke.

I hope everyone understands that I mean no disrespect to those who love and work well with their nurses, or those of you who feel you really can't manage without them. I think many of you are better "people managers" than I am. I really despise confrontation, and even though I am very open with you guys, I am deeply private in my home and resent intrusions. I didn't know how not to let the nurses take over, and I didn't want to confront them when I had to. Maybe next time.

04-16-2009, 05:18 PM
Karin--I loved reading your post because it sounded like me and what I am going through right now. My nurses are good but I hate the intrusion and that they are constantly messing with my daughter at night. I though want to keep my options open for when situations come up but I also know I can handle more than everyone says I will want to or be able to. I've made a decision this summer to scale back on nursing hours just to see if the adjustment works better for our overall family and if not at least I tried and will know for sure how much nursing I should have. It is a sensitive subject but something just isn't sitting right with me and it has been 3 months that we have been home with nursing and it's still bothering me even though I do like my nurses. I just want my privacy back.

04-16-2009, 05:39 PM
We need nursing, because Angus has been trached and ventilated since he was 4 months old and is very care-heavy when he is ill. My partner and I both work 5 days a week and have a 9 year old daughter too. Once Angus is off the ventilator more than 16 hours a day, we won't get any nursing. On nights when a carer phones in sick we do manage, but I am the one that hears him and gets up several times during the night to suction him. I don't sleep well in between this either. I get depressed if I don't get enough sleep, but that's just me.

You know yourself, your lifestyle and your strengths better than the medical staff. If you feel that you can cope, you probably can! It won't hurt to try. I can see why you'd get hacked off with people telling you what to do. That would bug me too. It doesn't happen in my house - I know my son and what he needs better than anyone else. :D

Note - all our carers are hired and trained by the Home Ventilation Service which is a department of the kids' hospital where Angus gets his medical care. Apart from one, they have all been brilliant and know how to take care of a child with a trach. Apart from one, none of them would dream of keeping him awake at night. His team of carers work day shifts and night shifts on a rota basis, so they wouldn't want to make him shattered for the person working day shift to deal with - they know that what goes around comes around, LOL! They have written rules for how to conduct themselves in people's houses. At night, apart from chatting to me initially to see if anything's changed and to check Angus' status, they are very unobtrusive.

04-16-2009, 08:06 PM
As others have said nursing is a very personal issue. Almost as personal as discussing your politics I think. We have been very very lucky with the nurses we have had. I know I couldn't have done it without nursing when we first came home because Natalie was on the vent. My dh works late hours, I work part time, and we have a 5 year old.

Now that Natalie sprints all day and is only on the vent at night for sleep things do seem much easier. We are thinking about what we want to do with our weekend day hours because cold and flu season is soon over and we can take Natalie with us much more safely now. But I'm also afraid to loose hours too because we still need the help Monday through Friday.

I think that going with your gut is best. Nursing is not for everyone and people can't know how you will feel or what you will do. Try to take their comments as looking out for your well being. As a social worker in hospice I always try to convince our caregivers to take the help offered because being a caregiver is physically and emotionally exhausting at times. Best of luck and I hope whatever path you takes works out well for your family.