Mother has been experiencing frequent UTIs & her only symptom is extreme confusion. I have to battle nurse manager & nurse practitioner of the nursing home when I recognize increased confusion in my mother. Each time I have finally gotten her urine tested she has been positive for UTI. She never has a fever and she does not complain with pain. When she is successfully treated with antibiotics her confusion goes away. When I initiate concern I am almost always told it is just that her dementia is getting worse. I must raise my concern repeatedly and typically have to wait until her symptom: confusion becomes extremely problematic & reach a Backshift supervisor that will listen to me. I cannot simply discuss with floor nurse because they are not suppose to talk with me; rather they have been directed to tell me I must speak with supervisor or manager. As I am my mother's medical power of attorney and the doctor activated it they have to talk with me but I am tired of being dismissed even when correct. Now they give her half doses and least powerful/effective antibiotic stating they fear "superbugs" and don't want to overtreat. Her recent bout was not cleared with the course of "treatment" & second lab test confirmed but because she is incontinent requiring catheterization to take proper lab sample they will not repeat the test nor treat further unless she has a fever. I feel I am at my wits end & don't know what else to do. Over a year ago I entered her into hospice program because she was sent to emergency room and they could not find a specific reason why she was in respiratory distress so the doctor said it might be "end of life". I explained to him that her history with bronchitis was rapid onset so he sent her back to NH with order for antibiotic that was good for bronchitis saying "it could not hurt". Because he documented his thoughts of "end of life" the NH wanted me to consider hospice. Since I was told the hospice had nurses and doctors that would provide additional help I agreed. The next morning Mom's fever went up and lots of congestion that was not present during ER visit occurred. The antibiotics took hold and eventually resolved with Mom getting back to participating in activities. The respiratory infections and the UTIs have had deteriorated her health such that she continues to meet continuing hospice criteria. I have not seen any support from the hospice group other than the aide that visits during the week has been good companion to my mother. So between battling the excuses of dementia and she is on hospice, I am not sure what else to do. I want her quality of life to be maintained and in my mind, confusion brought on by untreated UTI does not meet quality of life. The NH management obviously does not agree with me. At this point the NP and nurse manager will only "prescribe" cranberry pill supplements. I have also asked about more frequent changing of mom's diapers but was told that her inability to completely empty her bladder is more problematic with UTI than dry diaper. All this screams BS to me and I have considered contacting the ombudsman office. Am I off base and being too intrusive?

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I am pretty disgusted reading what is going on in that "nursing" home. :( Thank god she has you to advocate for her. Urine infections are terrible and can make someone go completely loopy, and its not dementia! Shame on them for not taking your concerns or your mother's seriously. I think a complaint to the government body with records of every time you have complained and every time she has tested positive would be worthwhile if you had the time and inclination. I wouldn't be surprised if aren't within your rights to sue this nursing home for medical negligence?
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Thank you all for your insights & input. I will follow up with mom's PCP and the ombudsman as discussed in the answers. Mom was able to live a productive, active,independent 87 years. These last 4 years have brought significant challenges. Her greatest fear was "losing her mind" and my charge as I see it is maintaining her current quality of life to the fullest possible. Each of you have given me nuggets to research and work with the NH to find best options for her health challenges. Thank you for your time, shared experiences, and knowledge. It is good to know I'm not alone. That has been the greatest challenge as I have transitioned from daughter to caregiver/protector: remembering that it is not me against the world.
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Thanks for a great answer that I will find effective, I think.

Mother pretty much always has some level of a UTI, luckily she doesn't go "bonkers" but every 3rd month or so, she insists on antibiotics, which really just set her up for more, much worse GI problems.

Mother will not eat yogurt or take probiotic capsules. She SAYS she drinks cranberry juice, but the bottle in her fridge is at least a year old. She is always dehydrated, as she keeps her apt at 85 degrees and is always swathed head to toe in blankets. Getting her to down 8 oz of water while caring for her over 2 hours is monumentally hard....she only wants to drink full sugar Coke...

She is supra-pubic cathed, but will change that this week to a "normal cath" which sounds just absolutely horrible.

In the "chronically sick" elders, it's a crapshoot with the antibiotics. They can cause such damage--and not even effectively tx what they're prescribed for. I'm going to ask her PCP for Hiprex...that may help, At this point, I'm just frustrated!
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Stillawoods - I can’t help with the hospice aspects, but I do have experience with the main issue of medical personnel not wanting to “over-treat” recurrent UTIs. My 96-year-old mother with moderate dementia has had serial UTIs for several months and is also incontinent (requiring the in and out catheter method of collecting a clean urine sample) and also usually has just one symptom: increased confusion, agitation, and combativeness (that is, increased “delirium,” to use the medical term precisely). So, after 3 or 4 days, I ask for a urine sample to be taken and tested. So far, the attending doctor has agreed to have it done, so the nursing home (rehab) staff does it.

However, the doctor does NOT want to treat … same reason, not encouraging drug-resistant bacteria and possible overgrowth of c. diff., and “no” symptoms of an infection … so he referred my mother to an Infectious Disease specialist. The ID specialist also does not want to treat with antibiotics if it isn’t truly necessary … say, if the white blood cell count sky-rockets, or the temperature rises to 100.5. They say to drink lots of water, and they use IV fluids if they think dehydration might be a cause. (My mother’s own PCP is of the same opinion, so no, what the nursing staff is telling you isn’t necessarily BS.)

In my mother’s case, a month ago, her white blood cell count rose abruptly, so they treated with IV antibiotics, then followed up with a prophylactic regimen of Hiprex (methenamine hippurate), which is an anti-bacterial, and premarin cream applied vaginally. Since Hiprex requires acidic urine to work, especially with the two resistant bacteria types my mother has, I’ve also been working to acidify her urine by giving her prune juice, cranberry extract capsules, ascorbic acid (vitamin C), lots of bread and eggs, and less calcium. ID doctor says the acidifying additions shouldn’t be necessary, but I’m doing them anyway.

The ID doctor told me that my mother has resident/colonized bacteria in her urinary tract. All of her urine samples will likely contain bacteria, going forward. The Hiprex is meant to kill off as many of the bacteria as possible, so that they won’t proliferate and cause actual infections.

Two weeks ago, they took another urine sample after 4 days of my mother having growing confusion and combativeness. It came back “positive” for a UTI but not too bad. We hit the water and the acidifying diet hard. By the time the culture/sensitivity results came back, my mother’s agitation/confusion had cleared up a lot, so the attending doctor just ordered follow-up blood work … which came back with a normal white blood cell count. We watched her temperature … no fever … and mental state.

Scary, to not treat with antibiotics, but I understand the reasoning. Today they took a follow-up urine sample, and she sees the ID doctor on Tuesday.

Anyway … while I do get immensely annoyed to have doctors and nurses tell me that “no symptoms of an infection are present” when confusion/agitation/delirium ARE recognized symptoms and I DO know my own mother … I do understand where the “don’t treat if not necessary” thing is coming from.

My suggestion is to ask if there is some sort of medical prophylactic treatment available and to request a consult with an Infectious Disease specialist, if one is available. Also do some research on reading lab results, types of bacteria, and available treatments (hopefully the doctors can explain to you). What type of bacteria does your mother have? My understanding is that cranberry extract is effective particularly against e. coli. I’ve read that sometimes doctors will prescribe low doses of common antibiotics to prevent infections with non-resistant bacteria. My mother has proteus and pseudomonas, which ARE resistant to most antibiotics, so the Hiprex anti-bacterial is one of the few choices available for preventing infections.

Come back and let us know how things are working out.
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There is a doctor for Moms care? You need to set up an appt with him. He is the one who reviews her records. Nursing staff cannot give her less unless the doctor orders it. My Mom was given cranberry tablets and a probiotic to help stem the UTI and help for the antibiotics. UTIs can become septic and cause death. The earlier u get to them the better. Not sure if spelling is correct but you can contact the umbudsman of ur state and file a grievance. They will send someone to the NH to check out whatvis going on. I was given the ph# in my pkg of rights given to me by the home. You should be able to find it under Government in ur phone book.
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