Mom, 81, in LTC. Is on a new anti-biotic for a UTI. The first time, they put her on Marcobid and I did not notice any cognitive improvement after a HUGE decline. So I asked for a retest (at her new LTC facility) which they said was fine. Then a few weeks later they said, hmm, there's a bad pee smell so they retested her again and not surprisingly, another UTI. Treated her with Macrobid again. Since she was still being totally crazy, I asked for a retest and for some general blood work. Retest said - still have a UTI! E-coli. So this time they put her on a different anti-biotic. On day 5 of 7 (or 10?) and she's still crazy. She is seeing her dead relatives and thinks I'm driving her to grandma's house (dead for 30 years) and picking up dad (died in 2016). I play along but it's wearing me down. If this new anti-biotic doesn't help her cognitive situation, I will accept the fact that this is just where she is now.
BUT - how do you deal with it??? I'm thinking that I might have to tell the nurses not to let her call me after dinner any more.
You have already suffered enough, haven't you?
Seems your mom may have a difficult to kill strain of E. Coli, a common GI tract organism. If the urine was tested for sensitivity and culture, she is probably getting the right antibiotic. If one was not ordered, ask her doctor for one in 7 days if her symptoms do not clear.
Her confusion is a result of the toxins released by the infection into the bloodstream. It takes time for the body to fight the infection, deal with the toxins, and recover. Since older bodies do not work as effectively younger bodies, it may take a little longer for her mentation to clear. She should go back to the same level of thinking she had prior to her infection.
From the little you've indicated, it sounds like she needs to be in a facility to receive 24/7 care. ... If she is in a facility, clearly tell the staff not to allow her access to the phone - as you deem necessary.
The other alternative is to tell her you got your phone # changed and when she calls it, it doesn't work - tell her you are working on it. She may not understand although she can perhaps go through the motions of 'calling' - she may not even know who she's calling or understand the message when she does call. In any case, if she understands - tell her that "I will call you in the evenings" - and change the subject.
She will not have the cognitive ability to manage calling you in reasonable hours/amounts. She is lonely / alone / scared / exhibiting dementia.
* See if you can find volunteers to visit her in the events - or when this behavior occurs.
* Yes, it will wear you down and you need to put new procedures in place to adjust as needed. "Might have to tell the nurses not to let her call me ..." is a given. The question is: Why are you not doing this now? what is keeping you from making needed arrangements? Guilt ? you need to deal with how you are feeling although you first need to identify how you feel.
Dementia is never easy to manage. However, YOU need to take care of yourself. Otherwise, you will burn out and not be there at all for this person.
Gena / Touch Matters
My Mom had Dementia and had a bad UTI. Antibiotics by mouth are not enough. Its usually a broad spectrum antibiotic. A culture will show what bacteria is causing the continuing UTI and the correct antibiotic will be given. IV is the best way to get rid of the infection. Don't tuink that can be done in LTC.
I know this sounds cold, but your mom will get over it.
I took my mom's phone privileges away because she kept calling me all day and night. Dementia and UTI is a rough combination. Lexapro has calmed my mom down too.
Cranberry helps to keep urine acidic, which makes a UTI less likely to take hold, but it is a minor improvement. If UTIs are recurrent, by far the important thing is to check how the infection from feces is getting from back to front, from the anus to the vagina.
I hope the UTIs get sorted out. Sounds like they need to check which antibiotics will work on that bug,
Another relative met sis there. Sis told the nurse that she had been bleeding 3 months. The nurse didn’t believe her. Blood work done. She was admitted in ICU and given 6 pints of blood over 6 days. Diagnosed with bladder cancer. In rehab now and has to get stronger before options can be considered for treatment.
Everything isn’t dementia and sometimes a UTI is more than a UTI.
Sorry you and mom are going through this.
Can you compare this with what is happening for your M?
I did homecare for many, many seniors with dementia over 25 years in the caregiving field. Some of them were completely invalid, bedbound, incontinent clients in diapers 24/7 and they had less problems with UTI's than your mother does. Your mother needs more hygiene care done more often than it's being done now. The best way to treat a UTI is to prevent one.
It's a given that any LTC facility no matter how high-end or expensive is going to cut corners on CNA staff and the patients are going to suffer for it.
Would it be possible to hire a part-time caregiver for your mother? Someone who will go to the facility a couple times a day to make sure she's clean and dry? Even just once a day will help in addition to the CNA toileting/diapering schedule at the facility. It's terrible that families often have to hire private help for a loved one in a fully-staffed LTC facility, but it's reality so much of the time.
There are medications for sundowning, so I would most certainly talk to her doctor about putting her on some of them.
And definitely stay on top of her UTI's as they can turn septic if not treated properly.
And I'll say it again....dementia sucks!
She is on trazadone which the staff thinks is helping but in light of all these calls about dead people, I'm not really sure. Or maybe it would be worse with a lot of agitation along with the conversations? IDK.
LTC facilities are limited in their care.
When my father kept getting back to back UTIs, he was at end of life and I got him on hospice too.
I don't know that your mom is approaching end of life herself, but it may be a good idea to get her evaluated for hospice to see what they think. It seems to me when an elder starts talking about seeing their deceased loved ones a lot, they themselves are getting ready to transition.
It's very difficult to get these calls and to stay composed, I know.....its very unsettling. This whole journey is so fraught with worry and uncertainty, it's mind boggling. I pray for inner peace for YOU, my friend, knowing that you're doing everything humanly possible for your mom right now. Be kind to yourself.
Typically, my mom doesn't seem agitated as much as just talking crazy about dead people. She's usually pretty calm about it and easily distracted like when I told her that I already called grandma to tell her that we wouldn't be able to make it to her house tonight. She bought that quite calmly.
I have been wondering when the appropriate time to ask for a hospice evaluation would be. I guess in the next week or two, if she does not rally at all, then it becomes something more considerable. Her life sucks and I do not believe in artificially extending it. She has level 5 dementia so I don't know if that's enough to qualify. I just want her calm and pain free and comfortable, both mentally and physically.
This dementia journey is certainly unsettling and mind boggling. Seriously, my mind gets blown with the new and strange places her mind goes. It's kind of interesting but mostly just so damn sad.
I know I am doing a lot for her and I feel good about that. If I didn't push this UTI retest, would they do it on their own? Doubtful. Which kind of sucks. I'm trying to be kind to myself but just don't have enough hours to do enough for myself. Hey at least I already got in a nice hot whirlpool tub today!
The fact that this UTI is being treated inadequately is allowing that only the weak bacteria get killed off each time, with the stronger ones remaining, making it more and more difficult to cure. She may need prophylactic antibiotic, a good one such as cipro. MDs no longer like to treat using it as it has complications, but the complications of her UTI, IF that is what this is, are life changing and severe enough to make this a life not worth living for her. If there's incontinence or inadequate cleansing (and even without those problems) this may be an ongoing problem.
Meanwhile, this is a problem for Medical treatment AND a problem that you need the LTC facility to understand must be addressed with removal of the phone past a certain hour. There is also, sadly going to come a time when you may need to turn off your own phone, and turn it on every few hours to collect messages.
There is also Telecalm at 888 701 0411 and telecalmprotects.com. Has certain phones that are scam and spam blocking, and stops multiple outgoing numbers repeated over a short time with family of facility notifications of any 9ll calls. It can also work on corded phone without internet access, so you may want to check this company out. It has been mentioned on AC in the past and I made note of it to pass on. I have no personal history of using it.
Good luck, and I am sorry you're going through this.
She doesn't have her own phone anymore but has to ask the nurses to call me. It would be easy for me to tell them not to have her call me after X hour. I am the one you might have heard about telecalm from. I used it for awhile and really like it but the router kept needing to be reset and there's no way my mother could handle that, never mind remember how to make a phone call. I think I'll give it a day or two more to see if the new anti-biotic helps enough to get the convos more into a tolerable level of confusion. It not, I'll ask them to tell her something like "Oh your daughter said she would be going out to dinner tonight and wouldn't be available to talk tonight" or something like that.
She is currently being given trazadone at 2 (25mg) and bedtime (50mg). The staff thinks this is working pretty well. Me? I'm not so sure. When I ask my mom to give the phone back to the nurse, I usually tell them about the crazy things she is saying and they often say that she's not telling them these kinds of things. Oh boy. So, by a calming med - do you have something other than this one in mind? I know people often mention Ativan. I wonder if that can be paired with the afternoon trazadone which is to try to keep the sundowners at least somewhat under control.
I understand what you're saying about the stronger bacteria surviving. I am going to ask them to retest again after this current course of treatment and lobby for a different and longer course of treatment if the UTI is still active. She is mostly incontinent - tries to make it to the bathroom but pees whenever she stands up at the very least. An aid always helps her as her strength isn't what is could/should be. I really don't want her in the hospital so I'll see what I can push for in LTC.