tracyIngalls

Hello again My mom did get worse, she is in the hospital with sepsis and other problems. I wanted to come back and thank you all and to thank Veronica for telling me to be vigilant about her open wound. It looked to me like it was getting worse and when her temp got up to 100.5 the nurse poo-pooed the idea that she needed to go to the hospital "yet" but I decided not to take any chances. At the hospital they said that she has a good chance but only because we got her there right away. She has been in the hospital for about 8 days now and seems to be a lot better though the wound is worrysome still. Her spirits are much better now that she is getting better care. Hopefully we will get her into the other facility when she is discharged from the hospital, they still have a bed available. If not I will take her home and take a family care leave from work. She does have Veteran's benefits that will help with home care. And yes I am filing a complaint with the state regarding her previous facility. Thank you for your concerns and for your good wishes, she is a trouper!

Hello again Well we have decided to move my mother. It is too far from my home and work but actually will be 20 minutes closer for my sister each way. We have visited the new facility and were assured that they will have no problems with the feedings, in fact they said they seldom use "temp" nurses. We spoke with another patient who refered us to her local doctor there in town and my mom's current doctor knows him and gave the thumbs up. So while I will be doing a lot more driving, I already feel a little less stressed about the whole situation. One problem though is that my mother now has an open pressure wound. I guess we need to find out if the new facility will accept her with this wound, if not this would be a real letdown. Mom REALLY wants to get out of the current place and when we told her she has to wait for an open bed at the new place, she said "I'll sleep in the hall". Thanks again and I'll try to keep you posted.

Thanks to all for taking the time to advise me. Yes, my mom needs her therapies and works hard, I think that the therapists here are very good. It just adds to my frustration, however, because when they bring these temp nurses on and they can't figure out how to feed her until almost 11pm, she isn't ready in the morning for her therapy. And the therapists just seem to move onto the next patient whenever that happens, so she has missed maybe 6 out of 18 days of her therapy. You have made me think and I have come up with a great idea however. My sister's husband is not good with my mom and not good with hospital rooms/visitation in general, but I know he wishes he were more help. I think he would be great at meeting with the heads of staff and following up and filing complaints if it comes to that. He probably is better at making demands than I am and would be a good advocate and could make things happen. I think my sister will ask him to step in here as I would prefer to spend all my free time helping my mom and not waiting for a meeting or writing letters to the conglomeration that owns this place and to medicare. This joint gets one-star out of four ratings on most points from Medicare and I'm sure they want to improve that but they're not doing a very good job of it. I feel badly for the therapists who want to help but enter the room and encounter patients who are fed-up with the place and ornery. I have seen my mom take out her frustrations on the wrong person more than once and we are working on that but it is difficult and after 8 years of living with tube feedings I can see how she has a short fuse nowadays. Hopefully we can get the doctor's order for me to be able to hook-up my mom whenever needed , we'll see. Thanks again I hope you all are having a better weekend than I am, you have really helped me to simmer down.

Thanks for the quick Ipod reply. I understand what you are saying about "don't touch my pump" but actually it's MY pump. LOL. We had to lug it from home because the nurses didn't know how to use the one in the room. Well, a couple of nurses did but most just spend an hour trying to figure it out and then left. Some nights she didn't get fed at all. So they actually agreed that we should bring our own pump from home. Oh, and we had to bring our own jugs of Jevity as well. Usually they didn't have the right size and gave her less than what the doctor ordered by about 30%. Other nights they just plum had none AT ALL. I had to chuckle when you said to talk to the director of nursing, her reply about the nurses who couldn't work the pump was "OH, that was not one of our nurses!" Right, it's a temp nurse from an agency, but you know what, she might not be one of "your nurses" but SHE IS ONE OF MY MOTHER'S NURSES! FEED MY DAMN MOTHER! I WROTE THE INSTRUCTIONS OUT FOR YOU and taped them to the wall, WHAT THE HELL IS THE PROBLEM HERE????? Sorry to vent but you have no idea......yesterday she got somebody elses meds. Last week she woke up in a big puccle of Jevity, none of the food had gone in all night. I could go on and on....it's gotten so that my sister or I have to be there around the clock, but my sister is almost 2 hours away. God bless her she comes often. Believe me I watch the nurses and the assistants and I would not want to / could not do their jobs. I understand....overworked, understaffed....the whole nine yards. And you are probably saying "girl...you have no idea!...." , but like I said, it's my MOTHER! I'm going to lose my job because i am so worn out and it's not fair. I don't mind spending 4 hours a day there, I don't mind paying someone to be there with her for as many hours as I can afford, but I cannot be there from 7am to 9am, then go to work, go there at lunchtime and have her begging me to stay longer, then go back at 5:30pm until 9:30pm and all weekend. Plus all the medicare paperwork and the insurance forms, I'm at the end of my rope. I've done it for weeks. WHY CAN'T THEY JUST LEARN HOW TO FEED HER???? So, I thought we could make it easy for them. I'd turn on her machine, like we did for six years, and sleep easy knowing that she was going to be okay that night, not wake up in a panic because she's getting dehydrated again. You're probably thinking "You need to find another place for her". Well the closest one is 22 miles and how am I going to make it back and forth 14 miles to work then 22 miles in the other direction to this supposedly-better facility? Anyway, just wanted to make it a little clearer why I wanted to give my mom her Jevity. It's not that I'm what you probably call a meddler. I am going to try to hire a private nurse to come in just for 90 minutes on as many nights as possible or that I can afford, and make sure that she is well versed in everything my mom needs. I am assuming they would allow this, even though she is not a nurse on staff? I'll have to check further. I have taken good care of her for 8 years since her stroke and I thought that now the nursing staff could take over some of the burden. But apparently the regular staff is not around much at night and its all temps. And the reason I can't care for her at home is mobility and transfer issues as well as other things I won't get into here. Thanks for listening I just needed to vent before I can sleep!

Hello all from the confused daughter of a patient. My mom has been on Jevity for 8 years now, fed through a drip all night long, peg site. For years she hooked herself up at night at bedtime etc etc. Now she is in a nursing home. She likes them to start her feeding at 9pm so that she can be finished at about 8am. But sometimes the nurses don't get to her until 11pm or midnight so the feeding time throws off her whole morning. Since my mom and I are experienced with her feeding machine etc (we had to show the nurses how it works)....if I'm at the hospital I was turning on her machine for her at night. (She can't reach it herself). Now the nurses tell me that Jevity is considered medicine and I am not allowed to do this for her. I don't want to be Miss Unco-operative Patient but I don't know the reasoning behind this. If Mavis next door can feed her husband his applesauce, I don't know why I can't get my mom her Jevity. And I'm wondering, if my mom could reach the on switch herself, would they allow HER to turn on her machine at night? She can't wait until 11pm for them to feed her, that's way too late. She rings her call button around 9:15pm if they haven't hooked her up but they don't answer until 10pm....the CNA who answers doesn't know how to turn on the machine and gets a nurse...it takes way too long. Any words of wisdom are appreciated.