Bad Day!!!
Today has been a bad day. I spent most of the morning & part of the afternoon crying. I did not sleep last night, I was in too much pain to sleep. The last 4 days have been bad for pain. When I do not sleep I am more emotional. I am very worried about Bruce. He still has fluid on his belly & chest. The last two days he has allot of chest pain. He said he can not move without chest pain. He also went through another arrhythmia spell. For almost 7 hrs his heart beat was out of whack. It scares me so.
Once again had a problem with my nurse. It is only a few of them that I do have problems with. Over the months there has been problems that come up. I have been upset but let them drop not wanting to make things worse. Bruce said one day he would like before he dies to know I will be taken care of. We are both afraid if I lose my mental abilities mistakes with med's or treatment will make me sick or cost me my life. So Bruce suggested that I write down all of the problems that has happened & the nurses I have problems with. The ones who make comments that are not fair or refuse to do their jobs (like the other night) in some cases it has caused me pain. I have done this on my pc Bruce says I should print it out & have them make a written response to it. Make them acknowledge the problems.
Today was sooo bad I was tempted to give up fighting them. The nurse did not want to change my dressing. He said they do not do that everyday. I went through that back in Sept. They did not change it for two days & it was infected. They cleaned it everyday but the infection did not get better, nothing was done about it here. I went to my urology appointment to get my super-pubic catheter changed over to a catheter instead of the first set up. He said he could not do it at that time b/c of the infection. He ordered for me to get a new set up & for them to clean out the wound. It hurt like H*** & I was put on antibiotics. I did see the wound care team & they said for it to be cleaned out daily using a sterile products. Also b/c the first set up for the super-pubic cath has a hard plastic piece that is in the bladder. My bladder felt like raw meat. I could not move without blood coming out in my urine. I hurt badly for 2 months. When I went back to urology I told him I was still getting blood clots in my urine he said I should not be still getting them. When he was done & I was leaving I looked at the set up he took out & it was covered in blood. Those set ups are not supposed to say in for 5 months. My bladder was scraped raw.
So that added to my upset for the day. He was not going to change the dressing said it did not need to be done. I told him to ask the other nurse who was on & the problems I had. He did change the dressing once he talked to her. Then he told me I had to see the wound care team & they will have to write it down & he would follow it. I told him that was already done. He said it was just a mistake that one of the night nurses just did not copy it when they changed to new forms. THAT IS SUPPOSED TO MAKE ME FEEL BETTER. Oh no problem just another mistake. I asked him what would happen if I was not mentally with it. He said it would not be a problem it would not be done as often & when it got infected I would be treated. It is me or should I be upset.
So anyway I am going to talk to the head nurse & I think I want to talk to the head of the department.
To me it is bad enough I have MS. That I have to live here & not be at home with Bruce (I may not have him long) but I have to fight to get the care I need. Every time things happen like that it give Bruce chest pain. He worries for me so.
I do want to mention as far as personal care. They are great. I get bathed, dressed everyday. They make sure I eat a balanced diet. But with mistakes in med's & medical care & some attitudes I feel I am fighting everyday,.
Once again had a problem with my nurse. It is only a few of them that I do have problems with. Over the months there has been problems that come up. I have been upset but let them drop not wanting to make things worse. Bruce said one day he would like before he dies to know I will be taken care of. We are both afraid if I lose my mental abilities mistakes with med's or treatment will make me sick or cost me my life. So Bruce suggested that I write down all of the problems that has happened & the nurses I have problems with. The ones who make comments that are not fair or refuse to do their jobs (like the other night) in some cases it has caused me pain. I have done this on my pc Bruce says I should print it out & have them make a written response to it. Make them acknowledge the problems.
Today was sooo bad I was tempted to give up fighting them. The nurse did not want to change my dressing. He said they do not do that everyday. I went through that back in Sept. They did not change it for two days & it was infected. They cleaned it everyday but the infection did not get better, nothing was done about it here. I went to my urology appointment to get my super-pubic catheter changed over to a catheter instead of the first set up. He said he could not do it at that time b/c of the infection. He ordered for me to get a new set up & for them to clean out the wound. It hurt like H*** & I was put on antibiotics. I did see the wound care team & they said for it to be cleaned out daily using a sterile products. Also b/c the first set up for the super-pubic cath has a hard plastic piece that is in the bladder. My bladder felt like raw meat. I could not move without blood coming out in my urine. I hurt badly for 2 months. When I went back to urology I told him I was still getting blood clots in my urine he said I should not be still getting them. When he was done & I was leaving I looked at the set up he took out & it was covered in blood. Those set ups are not supposed to say in for 5 months. My bladder was scraped raw.
So that added to my upset for the day. He was not going to change the dressing said it did not need to be done. I told him to ask the other nurse who was on & the problems I had. He did change the dressing once he talked to her. Then he told me I had to see the wound care team & they will have to write it down & he would follow it. I told him that was already done. He said it was just a mistake that one of the night nurses just did not copy it when they changed to new forms. THAT IS SUPPOSED TO MAKE ME FEEL BETTER. Oh no problem just another mistake. I asked him what would happen if I was not mentally with it. He said it would not be a problem it would not be done as often & when it got infected I would be treated. It is me or should I be upset.
So anyway I am going to talk to the head nurse & I think I want to talk to the head of the department.
To me it is bad enough I have MS. That I have to live here & not be at home with Bruce (I may not have him long) but I have to fight to get the care I need. Every time things happen like that it give Bruce chest pain. He worries for me so.
I do want to mention as far as personal care. They are great. I get bathed, dressed everyday. They make sure I eat a balanced diet. But with mistakes in med's & medical care & some attitudes I feel I am fighting everyday,.
Replies
I think the worst part is the fear. Fear of not being able to fight for yourself when and if the time comes where you are not able to speak up for yourself and demand the proper care. It is a helpless feeling, probably worse than not being able to move the way you once did, to be like puppets with others pulling the strings.
You and Bruce are always in my prayers.
Gentle hugs and joined at the heart, Linda
kayce, i am crying right along with you...as an rn, this half-a** care is unacceptable, unethical, unprofessional and a million other \"un\" words i can\'t think of. set up a family (if bruce can go even better) meeting with the director of nursing and the nurse manager. go over all your orders and all the doctor\'s orders for meds, dressing changes, etc. you need to sign, they need to sign. get copies. if they need to they can post it discreetly in your room, bureau, whatever, for reference. it needs to be updated as your doctor\'s orders change. the nurses need to include this info at every report at change of shift for continuance of care...you have so much going on with your love (bruce),and yourself. the very, very least they can do is provide you with the care and RESPECT you richly deserve. make them accountable, you are your best advocate. empathy is not an easy word to teach, and if i could shove it down their throats for you i sooooo would...my prayer are for your continued strength. connie
forgot to mention, i am now also \"disabled\" due to ms...con
Kayce, Im so sorry you are in such pain. It seems that the Home should be flexible on their treatment of pain, and ordered you some additional instant relief pain medication on top of whatever long lasting pain medication you are on. I think it really is inhumane when doctors dont acknowledge the pain their patients are going through. Of course you are not sleeping, and are more emotional. From your journal entry, I can see why you would have so much on your mind. When you feel like giving up, remember why you held on for so long in the first place. My thoughts and prayers will be with Bruce and you now as you go through this difficult period.
I think Bruce has a great idea about writing down the problems you are having and making the Home acknowledge them. Maybe with the help of your social worker, together you two should be able to conquer this current set back? If you do become so disabled that you cannot look after your own care and what is best for you, wouldnt the social worker you have step in and provide assistance? I never thought about this situation until now. What happens to people when they cannot care for themselves and make decisions regarding their health care. And having no family to rely upon to provide oversight. Maybe you need to hire a lawyer to help you work through this problem of not having anyone to provide oversight into your health care? I just don\'t know.
When faced with a challenge, look for a way, not a way out. Dont give up Kayce. Don\'t let setbacks get you down. Studying successful people will show you that they did not attain their success without first overcoming challenges. Do talk to the head nurse, and the head of the department. Let them know your concerns and they may be able to lighten the load for you.
I wish I was there with you, to talk to you and to give you a big bear hug. Consider a virtual hug from me, a long one with gentle words to comfort you.
Kayce, you have been given great advice and encouragement by those above. All I can add is that I keep you and Bruce in my daily prayers. {{{hugs}}} to both of you.
I am so sorry that you are having all these problems. Nurses should be kind and caring. Dressings should be changed daily if not more often. Fight for what you need and don\'t let them push you around.
I hope Bruce is on medication for his arrythemia. Has he had a paracentisis to remove the fluid off his belly?? Is he on Lasix??
Good luck
Lori (RN)
Hi Kayce,
Sorry to here some of the medical staff are dropping the ball, If only they could live in your shoes for a day.
Here\'s a document shortcut you might want to print out and hand to them which explains MS in more detail.
www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/carepartners/download.aspx?id=522
Hang in there and don\'t give em an inch, I read a study that found the most difficult patients usually have the best outcomes, the adage..... squeaky gate get the most oil comes to mind haha
having trouble with the above link maybe try this?
choose the download option
http://wikisend.com/download/563864/10.1.5.4.3_Assisted-Living.pdf
or maybe try this
choose Assisted Living for Individuals with Multiple Sclerosis 10.1.5.4.3_Assisted-Living.pdf
http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/carepartners/index.aspx
good luck you may need it haha