crystleshoe Posted November 8, 2006 Share Posted November 8, 2006 MY moms been in the hospital since her diagnosis(sept 25). We had to move her to a nursing/rehab home because she is not stong enough to go home. she was moved on friday and seems like there isnt anyone coordinating her care. The rehab place was not aware that she had to go get chemo the begining of the month so i had to set that up and now the nurse there tells me that she has pnumonia again so i have to cancel those appointments. I guess my question is ... is it unusual for her to not have come home yet? It seems that there are people in worse shape that are living at home so im not sure. And is pnumonia just something she will continuosly be getting? Also since she was moved it seems like the nursing/rehab home doesnt have her info from when she was in the hospital...should they? Thanks in advance Quote Link to comment Share on other sites More sharing options...
Nick C Posted November 8, 2006 Share Posted November 8, 2006 crystle, Wow, this sounds like quite the challenge. Can you call her doctor and prod him to get in touch with the rehab facility and find out who there is charged with her care? I found sometimes the loud care giver gets the response. It is not neccesarily right that that is the case, but nonetheless that might be what needs to be done. You may also want to ask for a copy of her medical records. If they give you a hard time, again the loud take no answer but the one you want caregiver. Hammer home the point that her records aren't transferring to where they should be so you are going to make sure all bases are covered. And don't leave and keep in their faces until they do so. It is frustrating. And your mom getting "lost in the shuffle" isn't right. But when that type of thing happened with mom, I made sure to just care for her, even if it meant doing someone elses job...and then said I'll catch up with those that didn't do their job later. Quote Link to comment Share on other sites More sharing options...
Linda661 Posted November 8, 2006 Share Posted November 8, 2006 Crystleshoe: Answers to your questions probably vary around the country; I know the particulars to some of your issues varied between nursing homes in my area. See if this helps: it's at least how it generally works in my area -- Your mom's doctor in the hospital was probably the one who determined that your mom isn't strong enough to come home yet -- s/he probably ordered a short-stay in a nursing home for rehab (or "transitional care") where professional physical and occupational therapists could help her regain the skills/strength she needs to function better on her own at home. Something about your mom's condition must have made this option preferable to receiving home therapy and that usually means the patient needs skilled nursing supervision as well as therapy assistance right now. Not sure whether that's unusual or not -- it's based on the particulars of your mom's situation. In a perfect world, the coordination of care would run smoothly between the doctor (your mom's primary care physician) and the nursing home staff (generally through the nurses station assigned to your mom) -- I have yet to see that ever happen without intensive advocacy from the family member. The breakdown in medical community communication is horrendous from my experiences so far. It's in your mom's best interest to know absolutely everything she's getting and where she is supposed to be and when to assure things don't get mixed up and that changes to things like your mom's meds get communicated between doctor and nursing home staff when they actually occur (I used to hand carry instructions and records back and forth from doctors to the nursing home all the time). Yes, the nursing home should have received instructions from the hospital on her medications, follow-up appointments with doctors that need to occur (including chemo/radiation needs), special instructions if your mom requires particular monitoring, and what therapy she is to receive. That should have transferred with her when she was admitted to the nursing home. The nursing home should be coordinating this with a family member (usually the one with healthcare power of attorney), particularly if the family is responsible for transportation to/from those appointments. If your mom has pneumonia, there should be more going on than simply cancelling appointments -- in our area, pneumonia was grounds for being in the hospital. Pneumonia is something to watch out for and take precautionary measures to prevent with this dx -- it shouldn't be something she gets all the time. Keep us posted. Linda Quote Link to comment Share on other sites More sharing options...
crystleshoe Posted November 9, 2006 Author Share Posted November 9, 2006 thanks for all the input. I guess I thought that all of the doctors and nurses would c ommunicate and want the best for her and would be available when we needed answers from them, I forget thet just because my mom is the most important to me that is not the case for everyone. I have called to set up a "care plan meeting" with the doctors in the nursing home so im hoping that will help us out some. My goal is to get her strong enough to come home with some visiting nurses and stuff like that. I would rather have her for a shoter period of time if she could enjoy her life than to have her suffer and be around for a long time. Does that make sense to anyone? Quote Link to comment Share on other sites More sharing options...
Linda661 Posted November 9, 2006 Share Posted November 9, 2006 Your plan makes perfect sense Crystle. And, the care plan meeting will definitely tell you what direction they all believe they are heading in and when your mom could come home. All the best to you and hang in there. As a caregiver, it can be very shocking & disappointing to find out just how broken-down "the system" can be with communication issues like you're experiencing -- it happened to me as well. Linda Quote Link to comment Share on other sites More sharing options...
Nick C Posted November 9, 2006 Share Posted November 9, 2006 Crystleshoe, That is a wonderful action you are taking for your mom. It isn't that the doctors don't care, it's just they are caring for so many. Doesn't mean we shouldn't take them to task, WE SHOULD! Just have to expect that we may need to be the ones to initiate certain aspects of care. I would rather have her for a shoter period of time if she could enjoy her life than to have her suffer and be around for a long time. Does that make sense to anyone? It made sense to my mother. She didn't want quantity. She said no thanks to those treatmetns which would prolong her life at the expense of her lossing too much quality and did those treatments which would in her estimation increase the quality of her life. My mother and I were of one mind...she made the decision. I understood exactly where she came from. It wasn't approval or disapproval. It was what it was. But I completely understood it. Quote Link to comment Share on other sites More sharing options...
Martha02 Posted November 9, 2006 Share Posted November 9, 2006 My mom went to the hospital and than the rehab. We were on top of them everyday it took about 2 weeks of yelling to get on the same page. Can you take care of your mom at home? At that point my mom prognosis was really bad the doctor told us 2 weeks maybe a month. She was on 2 oxygen tanks. She could barely walk so she wasn't ready to come home. At that point I call hospice (I don't know if you mom is even close to that I don't mean to scare you) at they took over and everything ran really smooth. But one thing I learned that when the doctors find out you have terminal illness you don't get the best care that you should. So that is why I called hospice. They care about their patients having the best care and make them feel comfortable when need it. And you will get that support system that you need too. I pray that you mom gets better and come home. Take care Martha Quote Link to comment Share on other sites More sharing options...
kamataca Posted November 9, 2006 Share Posted November 9, 2006 I'm just sorry you have to deal with the red tape along with everything else. Your mom is so lucky to have you advocating for her! You are doing a great job. Kelly Quote Link to comment Share on other sites More sharing options...
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