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Mom's sundowning got worse, starting at about midmorning instead of early afternoon, a few weeks ago, and was started on a course of Cipro for a UTI without testing, saying that if she was going to get better it would be in about 3 days...which would have been Monday. She is still starting to be belligerent, angry and mean (not her usual mental status) since then, Would it be reasonable to ask her to be discharged from hospice and admitted to the hospital to see if she has some other sepsis going on that might be treated, or is this just the "new level" of dementia going on?


My SIL is taking care of her and does not appreciate any of my input (though I took care of Mom for over 2 years before I was too worn out to continue) but if anyone thought it might be worth considering, I could mention it to my brother, who might be able to convince her. But if you all say it's probably not going to do any good, I won't say anything.


I appreciate your support. I have hardly had time to visit the forum, (or breathe with my husband's 2 caths in the last month and possible need for an ablation for atrial fibrillation) but I still want what is best for mom.


Thanks to all of you

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DF, back off SIL. Let her figure it out. She has made it clear she does not appreciate your input so stop.

You have enough on your plate.
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You bring up a great question... What is the doctor's take on this? This is too long for the treatment to not be working for a UTI... Could it be another type of infection? COVID? Plain old dehydration?
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Our hospice agency was willing to order in home blood work if needed. That should tell the story if there’s infection going on. I wouldn’t think stopping hospice and being hospitalized would be required
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FWIW, my mother is acting the exact same way with her advanced dementia & there is NOTHING organically wrong with her. Not a thing. She's angry, belligerent, down in the dumps, super angry at me (angrier than usual), refusing to take her pills, and meaner than a snake, all due to her taking another step down with her dementia. The doc has started her on a .25 regimen of Ativan at 5 pm every night b/c her Sundowning is horrible *and going on longer & longer daily*. We'll see if that helps. The whole idea of hospice is to avoid unnecessary treatments to aggravate end of life experiences, but like Daughter said, they are normally willing to order blood work if you feel that would help. I'd back off if it were me and just let your SIL manage the situation.

It's hard and it's ugly and it doesn't get easier with dementia. It's terrible, too, to sit around and feel helpless to 'fix' things, isn't it? I hate dementia with every ounce of my being and watching my mother turn into just an angry, miserable person 24/7. I hope this ends for both of them sooner rather than later, b/c it's no way to live.
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Mom is on hospice and it was decided appropriate to treat the UTI with Cipro.
This sets a precedent for allowing treatment for a UTI while on hospice. So, no, you would not need to cancel hospice to get her treated for a UTI.

The treatment is not working and may be causing her harm. It is my understanding that Cipro is not a good medication for the elderly:
" Adverse reactions of the CNS are of particular concern for the elderly population. Elderly patients with impairments of the CNS (e.g. epilepsy, pronounced arteriosclerosis) should be treated with fluoroquinolones only under close supervision. Probably, many signs of possible adverse reactions such as confusion, weakness, loss of appetite, tremor or depression are often mistakenly attributed to old age and remain unreported. Fluoroquinolones can cause QT interval prolongation." Time is of the essence, persuading sister and brother may take too long.

You are correct, she should have been tested, and now changed to the correct antibiotic. Just because someone is on hospice is no excuse to allow the wrong treatment or care. Hospice provides comfort...can you imagine how uncomfortable Mom is having these behaviors and a UTI?

Next protocol would be medicating her for her behavior(s), making it worse.

Address the proper treatment for the UTI. Try to get the Cipro changed, STAT!
Right away.

You sound powerless to effect a change in treatment. Any good you try to do has to be done right away. Changing from Cipro did my elder loved one good, and he lived a better life until his end.

So, I am going to ask, how are you going to be able to push for cancelling hospice and having her sent to the hospital? I would do it for my loved one. My sister got a different hospice when we disagreed with their treatment/
mistreatment. But sister and I agreed. You might need to be present to get this done.

Proceeding with the current treatment is just wrong, imo. Ignoring that Mom has the wrong treatment is even worse. Do it today.
1) Call the doctor to report side effects of Cipro. Get it discontinued, imo.
2) Get a urinalysis, with a culture and sensitivity.

These are times when I wish I was wrong. I could be wrong, but how is finding out what is the right treatment is going to harm your mother?

Disclaimer: I could be wrong. Every patient is different. But going by what you said: They said she should be better by Monday, and she is not, plus added behaviors....
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Sendhelp Nov 2021
My job is done here for today.
Best wishes for you, your Mom, and family.
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Who is your Mom's POA?
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First - they should have taken urine sample (even if they were going to start treatment and then once the culture was in switch meds if needed) - I would 100% request a sample - and change in antibiotic (but make them get a sample now - even though it may not grow anything since she was on cipro for a few days but it could still grow if the cipro wasn’t clearing it).

My mom had a severe reaction to cephalosporin antibiotics for a UTI - she got worse and had a toxic reaction which caused toxic encephalopathy. So yes it could also be just the medications.

She should not have to suffer through that type of delirium - I would get the hospice nurse out ASAP make them get a urine catch and switch meds only after the urine catch was done. 🙏🏼🙏🏼
So sorry it is so awful to watch our loved ones go through this .
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Maggie61r Nov 2021
Yes! And thank you. I've tried explaining this to people many times and people just don't get it. They need to do a culture & sensitivity test to see which antibiotic will work for her. Just because one antibiotic worked previously, doesn't mean it will work this time. It may be a different bacteria or it may have become resistant to Cipro.

I can understand why they would prescribe Cipro without a sample because it generally does pretty well against UTIs, but it may not work in this case and that's why they need a urine sample.
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Funny we thought the same thing on my father-in-law. It ended up he was hospitalized and they put him on an antipsychotic drug. It took six weeks for him to snap out of the place he was but he had the same symptoms as your mother-in-law. Good luck it was a long road and the end result was assisted living as well as antipsychotic meds he will be on for the rest of his life
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I had the same situation. Hospice won't do a culture they're just guessing. It turned out my dad was dehydrated. One occasion I took him to the hospital. They drugged him up so bad. I told them this is unnecessary. They don't listen or care when it comes to people with dementia.
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For what it is worth, placing a urinary catheter in order to obtain a urine specimen for culture and sensitivity is necessary for patients with dementia who cannot follow the instructions required for a 'clean catch' urine specimen. Most dementia patients perceive the experience of catheter insertion (even one that is removed after the specimen is obtained) as invasive and become quite combative. So, this is not seen as a benign procedure for someone who cannot understand why it is being done.
Many elderly women have a variety of resident microorganisms in their urinary tract. If she is dehydrated then her decreased output of urine means germs dot get 'flushed out.'
Understanding the goals of hospice care (quality of life until a natural death) is important.
The actual process that leads to a natural death often involves infection/deydration/loss of organ functions, and death.
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I would ask Hospice to do a Urinalysis on mom's urine and a Culture.
It may be that the antibiotics that were given was not for the type of infection she has and needs a different type of Antibiotic. That happened with my Dad a couple times.
Hospice doesn't like doing it but if you tell them you want both a Urinalysis and Culture done or you will be checking her out of Hospice, they will probably do it.
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Maybe suggest to your brother she increase her water intake, as this can be a symptom of dehydration. If no improvement have them recontact her doctor for a urine culture. I daresay no one wants to have her hospitalized with Thanksgiving looming. Taking probiotics during a course of any antibiotic is helpful. Once this issue is resolved, look into the supplement D-Mannose if UTI's are a chronic problem. I found it very helpful for my Dad.
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Myownlife Nov 2021
Not all people can tolerate probiotics; my mom is one of those and had diarrhea with it.
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Since your mom is on hospice, you and the family needs to decide what the level of intervention will be in her life. If somebody has a medical POA, this person should be talking to mom's doctor and making those decisions. Usually, hospice is to treat pain and not try to cure illness. The goals is to keep her comfortable so she can enjoy the life she has left and for others to be able to be with her.

A compromise would be to have mom go to urgent care to do a urinalysis with culture and sensitivity. Cipro should manage most organisms that cause UTIs. She may still have increased confusion until all the toxins from this infection have cleared her body. Having her drink a lot of water (unless she has heart failure) should help clear the toxins a little faster. If she does have a UTI, ask her doctor to prescribe pyridium which helps to anesthetize the bladder spasms and pain that accompany this disease.
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How is the hospice affilated with their hospital? Is direct admission possible? Or does it need to be reviewed first?
Next, if your mother does get admitted to the hospital for treatment(s), I would strongly reccomend she be seen by a hospitalist. This is their expertise, of untangling complicated patients, the medications and to stabilze them. This is what my husband did for over 30 years, he was well known in the field. Most are trained to talk to patient's families about various courses of treatment too.
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Usually a UTI in elders is caused by E. coli., quite often because of improper wiping when toileting. My mom just had one ( again ) as noted on a urine dipstick test. Unfortunately that was on a Friday afternoon after the office was closed. We had just come home from a vacation. I called the on-call who prescribed the antibiotic Macrobid, which is strong and the only one that works for my mom. She couldn't get a urine culture done because the office closes at 12 Friday and doesn't reopen till Monday. Rather than wait till Monday to get a urine done, the antibiotic was prescribed ( 2 x day x 5 days ), luckily, which gave Mom 6 doses of the total 10 by Monday... sometimes, a culture just can't get done, so a dr. will order a broad-spectrum antibiotic and/or what has worked best in the past. Each one of my mom's previous UTI's was caused by E. coli., so it was a fair assumption that that was the cause this time. I am a big advocate of using the urine dipsticks ( available on Amazon, but if you buy a bottle with a lot of sticks, be sure to check the expiration date; once opened usually only good for up to 3 months ). I periodically check, esp. if Mom seems "more confused" again.
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Clairesmum Nov 2021
yes, this is the way that hospice often treats a UTI - a broad spectrum antibiotic that covers most likely germs that could cause infection. OR if patient has had repeat UTIs, checking medical records and/or asking family. members about past treatment history and what worked best gives a guide to what to start with.
Both of these are 'educated guesses' and saves the hassle of getting an uncontaminated urine specimen in an elderly woman.
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By all means you should have her evaluated - it is better to know and to tend to it than ignore it and things get worse. Expect problems but be tough and insist she get medical help for everyone's peace of mind. Stand tough and firm until you know. I sense you are worn out and have enough on your plate. Do NOT bring her home - it will be too much for you and you have a right to live your life now. Don't give in.
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That's not your SIL's Mother, so you should have the last word if your brother doesn't have an opinion either way. Unless your SIL has medical POA. You should speak to the hospice company and request a urine specimen to rule out a UTI, or it'll tell them the specific bacteria that is causing the UTI so your mom will receive the correct antibiotic. Cipro is generally used for UTI's but in the elderly, that's like spraying water into smoke, and hoping it puts out the fire. Due to changes in hygiene practices, it could be other kinds of bacteria causing the problem, so always, always ask for a clean catch urine specimen BEFORE allowing any antibiotics to be given. Best of luck to you.
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Yes, get your mother re-evaluated. She just might have sepsis. My mother had a UTI. She was taken to the hospital treated for a 7 day course then discharged w/o any secondary test to make sure the UTI was cleared. I found out the reason is because the antibiotics remain in the body for a week. However, they can test the blood to see if the UTI has infected into the blood (sepsis). My mother was discharged after the week, came home for a month then clasped one morning. She was taken to the hospital again this time with sepsis. She thinks that the original UTI never was cured. She remained in the hospital for about 4 weeks. since, she has had recurrent UTIs until finally her doctor put her on a preventative dose of macrodantin. It did take her a while to recover mentally. She though she was back living on the east coast in her home town.
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daddysfavorite: A complete urinalysis, aka Clinical Urine Test, is needed STAT and not a simple dip stick test.
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