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My mother was sent to the hospital because of an untreated UTI, which turned into encephalopathy. After 6 days at hospital, we decided to send her to a SNF because she was still speaking gibberish, couldn't follow a conversation, and most frighteningly, was refusing to open her eyes when she spoke (so we feared she would fall if she tried walking/getting up). The SNF was to help her with PT/OT.


We are two weeks in to her stay at SNF and while she is objectively better: no longer on antibiotics, her vitals are all "good," and she is opening her eyes and walking with assistance during PT, she is still unable to follow a conversation, stumbles her words, cannot follow reality, confuses objects for other objects, and I think is having hallucinations (last time I saw her, she confused a bag of grapes for a rabbit, and "saw" a dog under the table, there was no dog).


There has been decline these past two years, but when I took her to the hospital 3 weeks ago because of symptoms of confusion (which revealed the UTI) she could still walk on her own and for the most part, could hold a conversation for about a minute or two. Now, she can't hold a thought for more than 20-30 seconds.


Doctors have told me that encephalopathy and its confusion may take weeks to go away. Is this true? We're three weeks in now. Is this her new baseline? That is my fear...

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Has she been retested?
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primiana Mar 2021
Thank you! After 5 days of pleading with the rehab center to retest her, they did. And it came back that she still has the UTI! The NP said it's a particularly bad one and they will start her again on different antibiotics.

This doesn't solve everything but the relief I feel... thank you SO MUCH for suggesting this.
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She may not return to her previous cognitive ability.
I would ask that she be retested for the UTI. Some can be VERY stubborn.
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I agree with gladimhere, she should be retested. UTIs in elders can be very tenacious. My MIL gets them often and sometimes 1 course of antibiotics is not enough.
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primiana Mar 2021
Thank you @Geaton777! Yes, she still has a UTI. I feel so grateful to you all for listening to me when no one else around me was. It might not solve everything, but I just knew she was acting too strange/too quickly... this is the first step.
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Thanks G. Takes me back to the time when my mom had 7 UTI's in nine months. Then we finally figured out how to keep her from getting them so often.

The antibiotic that has been prescribed may not work on the type of bacteria. Have they cultured the specimen?
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horseTrotter Mar 2021
She needs to be rinsed out down there in the bladder - that\s the only way believe me. Only takes 30 minutes and after 2 weeks with anti biotics she will be a new person again. Trust me on this one. Are you in Canada?
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Primi, the key thing is for them to get a CULTURE of the bug causing the UTI.

Then they know which antibiotic will work, as opposed to giving her random stuff.

Congratulations for getting the SNF to listen to you!!!!
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primiana Mar 2021
Yes! The NP is waiting on the culture. Fingers crossed we get somewhere.
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Hello Prim, it make take another round of antibiotics to clear the infection. She needs another culture and sensitivity. Her doctor needs to obtain a urine culture and sensitivity. to see which antibiotic is best. My mother has many UTI's, she just got over one a few weeks ago and we had her retested to make sure it cleared which it did and was negative, no further confusion which is her usual symptom when she gets a UTI. Is she seeing a urologist? My mother lately is sensitive to oral meds but in the past she needed IV antibiotics to eradicate the infection. Good luck I know it is stressful.
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Last January my mom went through the same thing - FYI it was the cephalosporins class drug and her neuro told us to never have her on them again. She had severe delirium and encephalopathy from 3 cephalosporins and then by the time infectious disease switched her to cipro she was already so sick it reacted the same - it was the most horrible thing I have been seen sometime go through as well as the severe decline. She still gets milder symptoms but still delirium with other antibiotics but nothing like the cephalosporins. She is a stroke survivor so it affects her brain much harder. She loses a lot of her gains but does get them back - sometimes it take longer than others. But you should see small improvements even minor little ones every day - though it can take weeks and I have heard months to get back to where they were if they can.
I’m glad you got retested - but please please ask them NOT to put her back on whatever they had her on - that type of delirium is from toxic and metabolic encephalopathy and should not ever be put back on that whatever class drug they were using. I am right now treating a uti at home after literally coming home after them treating one in the hospital and sending her home after going through pure hell for 3 weeks. They sent her back home with 2 different hospital acquired bacteria’s vs the one we went in with.
I can tell you we have since used Invanz IV and now at home doing Invanz antibiotic intramuscular injections (as I do not want to treat in her in hospital setting anymore - too many screw ups- delirium is worsened and additional bacteria’s as I’m trying my hardest to treat at home with home health. The Invanz still brings on delirium because she is just vulnerable now woth the injury to her brain - but she does much better on that class antibiotic. Ask for infectious disease consult to get her on an antibiotic that she will not have such an awful toxic reaction too. I did so much research after watching what happened to my mom with encephalopathy - cephalosporins are bad for many with dementia or older or those brain injuries. Wishing you the best - keep us posted and praying for your mom 🙏🏼
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Gladimhere - what are you using to help keep from any other UTIs? The only thing we have added in is cranberry with d-mannose and that did keep mom clear for an entire year. What helped your mom?
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gladimhere Mar 2021
I took her to a urologist. The meds prescribed included low dose antibiotic daily. I am going to see if I can find what else was prescribed. It has been about eight years. Mom passed four years ago.

One thing is they need to culture the specimen to determine the type of bacteria. Antibiotics are not a one size fits all.
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You describe my mother exactly.
She needs to have her UTI clean out from within by a trained Urologists'
My mother had Chronic UTI but this doctor saved her life.
Now 3 years later, dementia has set in and its frustrating for all.
I am ready to leap off my balcony but I only live on the second floor condo.
Would love to talk more with you. I thought I was the only one going through this.
We love our mothers but gee ... how much more can I take of this insanity.
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I found going to WeHonourYou.com and buying a little robotic cat or dog does wonders for people with dementia.
My mother is a whole new person and she is 91. There are also gratitude seals there and we honour you seals ... your way of saying how much you love them.
They have a great music video where they include your mom in the song in the first 24 seconds with photos. They love it - heart warming!
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