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I am upset that mom's PCP did not suspect this possibility instead of dementia. Her meds for HPB have never been adjusted despite her extreme weight loss in the last 4 years. I took her to ER after reading an article about UTI's and dehydration causing confusion and memory issues. I feel terrible !
What should I do next ??

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The exchange of information,experiences, and opinions on this site are often more valuable than a costly visit to a doctor. This being said, doesn't mean you should forego an office visit. Oftentimes, trying a a simple remedy is all that is needed. However, if an office visit is warrented for your elderly parent, then it is certainly helpful to be armed with informed questions. Our roles as sons and daughters of our parents now include being their health advocate, it is a role which is ever expanding .
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Liltdogtoo in retrospect I should of taken my mom right to the lab that day and got her urine sample checked. As I recall my mom was tired that day and assured me that she would get it there. I know in the past they used to check your urine right in the office.I know some places still do.

Would of, should of, could of...... Hindsight is twenty twenty I guess. :(
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It's not your fault, until you've had these experiences or been exposed to medical issues you might not know. any time there is a sudden change in behavior, not eating, increased confusion, agitation, pacing etc. then you should suspect that there is something medical happening. Just because she has dementia doesn't mean she won't exhibit signs of confusion or strange behavior when she is sick. She's luck to have you. Some doctors don't explore that possibility with there patients with dementia. When my dad became ill, I thought a UTI, he was on the floor crawling, pacing, in and out of bed--he had pneumonia. I stress to family members to learn what you can about dementia and other ailments that can plague the elderly such as UTI symptoms. It may appear differently each time. Make sure you have plenty of drinks on hand for your mom such as water, juice (if her medications allows for juice), tea, not so much soda. People with dementia may need a reminder to drink. You can contact your local chapter of the Alzheimer's Association to learn more about dementia, what's 'normal', behaviors and how to manage them etc. You can also contact your local Area Agency on Aging for more info on caregiving and/or in home assistance programs. Love your mom each day and enjoy the time you have left with her.
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Good grief how much does it cost to have a nurse stick a test strip in a paper cup of pee.
It is good to remember that all nurses and Dr's are not necessarily trained in all the areas they are practicing in. A very good PCG may have absolutely no experience with dementia and not know what to look for. A nurse with an acute care background is used to infections presenting with high fevers. yes she should know if she is working with hospice patients but anyone new to hospice has a very steep learning curve to climb and there is no special training. Another thing to consider is whether you want to put your loved one through the discomfort of antibiotics when they will feel nausious, off their food and have diarrhea.
Anyone who feels their loved on has a lot of quality of life ahead of them and wants agressive treatment for things like UTI should take the patient to see a specialist. Some Drs will treat frequent UTIs with various combinations of continuous antibiotics. Maybe 2 weeks on drug A then 2 weeks off and two weeks of drug B. the caregivers do have to do their part though keeping the patient really clean and changed as soon as they are wet. a warm wet depends is an ideal breeding ground for nasty bugs. You changed your babies every few hours and washed their nether regions so it is just as important to do the same with the elders. As we age weare less concerned with personal hygiene and consider a quick swipe with a wet wipe is good enough. It isn't, the genital area needs to cleaned with warm water and possibly soap at least twice daily with someone who gets frequent UTIs. use good quality paper towels for this Handwashing must also be supervised. yes you may have a fight on your hands but that may be better than three nights of hallucinations and wandering till the antibiotic kicks in.
It is also very very important for the correct antibiotic to be prescribed and this means a specimen has to be sent to the lab for what are called culture and sensitivities. The urine is spread on an agar plate and discs of common antibiotics are spread around. the pathologist looks at the bugs that have grown and can identify them and sees which areas are clear around the antibiotic discs. that way he knows which antibiotic shouls be prescribed. That may be the test the Dr said would not be covered frequently by Medicare as it is probably quite expensive.
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I went through the same thing and it is scary. One of the first things that alert me to a UTI with my mom is the odor in her urine. You'll know from that as will everyone else. Then we face at least 2 nights and days without sleep along with the delirium usually.My mom has been getting them about every 3 weeks. I asked our pcp why they don't run a urine sample on a regular basis just like blood work and he said medicare doesn't pay for it. I'd rather pay for the urinalisis on a regular basis than go through this. Hang in there
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Gershen - usually when the doctor gives you a cup, the patient goes in and immediately gives the sample. I'm wondering why the doctor allowed the cup to go home with the patient and why the doctor didn't follow up to find out what the results were?
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How would a "lay" person know to look for the possibility of a UTI when dementia-like symptoms show up???? It is sad, but unfortunately not unusual that doctors miss these things. As others have asked, has your mom's mental status gotten better and returned her old "normal" since being treated? The one thing we look for in terms of a UTI is a SUDDEN change in mental status. It's like the symptoms of dementia appearing very rapidly, instead of gradually.
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you should not feel bad, I had the bad luck of feeling like that also. However if you don't get the correct diagnosis for an UTI then it is not any ones fault except the medical professionals. I have gone out of my way to "educate" people I come in contact with at work that have elderly parents. Most like us have never heard of such a thing. But the doctors should know and to send someone away with a diagnosis of dementia seems inhumane to me.
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I know where you're coming from. Feel bad because it's human nature but don't beat yourself up over it. You sensed something was wrong & you sought medical attention. Your mother's PCP failed your mother. A UTI is something her PCP should have considered because it is very common in the elderly. Let this be a teaching moment. Now you know what to look for & be adamant if you are uncomfortable with the direction of your mother's care. Who is going to know your mother better than yourself?

Speaking from experience dealing with my grandmother, she never presented with the telltale sign of fever or complaining about pain. This very own sight mentioned this is due to the aging process. Don't let anyone be flippant about this. When I took my grandmother to her PCP, he told me "We don't have to treat this. We can let it run it's course." To get to the point, I had to fight for the med. After he told me this twice, I decided to change tactics. I developed some sudden "delicate sensibilities" & started to whine about her confusion, the smell & whatever I could whine about I did. My brother, who accompanied us, said to me "I get the impression that (he) gave the script for your benefit but grandma has to take the antibiotic." Ultimately, a UTI will result in death & I just feel you don't live to be 99 & not taking any medications whatsoever to end like this. I asked my grandmother point blank if she ready to be with grandfather yet or does she want to live? She told me she wants to live. I asked her what does that mean. She replied she doesn't want to be pushing up daisies. Have the talk your mother. Know what her wishes are.

My grandmother also had a short stint in hospice (PCP's 3rd attempt) & had problems treating another UTI (UTIs don't get you accepted but I was told to not mention this during the intake). I am going to put this out there. Is the medical community using UTIs as euthanasia? I told the hospice intake I don't want her dying of a UTI & was assured this would be treated because it is comfort care. Her damn nurse told me she was fine because she did not have a fever & like your situation it was dementia. I should mention I wasn't POA but when I got it done, guess what? It was then treated. Are you POA? If not, get it done.

Make sure your mother is drinking plenty of fluids & also try to incorporate 4-8 oz. of cranberry juice into her diet. Don't get the kind that is essentially glorified apple juice because how much cranberries is one really consuming? Look for the one that is 100% juice. You can dilute it with some water. Also, if your mother is wearing depends, don't let her sit in a soiled diaper for long & it may be better if you clean her up rather than having her do it herself. I noticed my grandmother was wiping too far back to front & fecal matter was getting smeared all over.
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We all seem to get on that merry-go-round of blood tests, MRIs and specialists ' visits. My mother who suffers from diverticulitis is 90 and has recently been diagnosed with dementia, unknown cause, of course, and now is recommended to have a pacemaker inserted to help with her fluctuating blood pressure. This present hospital stay has been prompted by her losing consciousness and rushed to the A &E of the local hospital where they took more than a day to decide which ward to assign her to.
She has had recurring UTI in the recent past and also has had short term unexplained fevers. I'm beginning to think that many of her symptoms, including confusion, delirium, hallucinations may be caused by UTI and not dementia as suggested.
My sympathies and admiration go to all carers who are struggling to make the right medical decisions to keep their loved ones comfortable.
Thank you for your wonderful website.
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I'm happy for you and your mom glasshalffull!!
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UTI's are a big problem with my mom too (90 years old). She ended up in the hospital with a septic infection because a UTI went undiagnosed. We now always suspect a UTI no matter what seems wrong. She has had 3 in last 90 days.

Hardest part is finding new ways to get liquid into mom. She just does not feel thirsty as often as she needs. We have tried check boxes and various flavorings and etc. Suggestions?

There are test strips you can buy that indicate possible UTI. We are going to invest in some if we can ever get further than 3 weeks from a UTI treatment.

Primary care Dr has orders for Urine check at lab...I can take sample down.

my biggest complaint is that all the docs keep using the same antibiotic (which I can not touch due to allergy) and I keep suggesting that they consider longer term and a different antibiotic and maybe we could stop this cycle.

After hospitalization and treatment of UTI and Septic infection, Mom was thinking clearer than she has been in YEARS! Yay - not dementia!
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It was a UTi that ended up with my Mom in a nursing home. In summary I had taken my mom to her doctor last year worried she may have dementia. He immediately gave her a cup to collect a urine sample. My mom stuck it somewhere and forgot about it. Three weeks later my mom was in the hospital with sepsis due to a severe kidney infection.After a prolonged stint in hospital, then rehab she is now in a nursing home. If she had just given the urine sample as requested who knows where she would be now.

Moral of the story if you suspect beginnings of dementia with a loved one or even yourself, get checked for a UTI first!
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I think Katie really hit on something. Since the elderly are prone to certain infections - why wouldn't a hospital, nursing home etc. test for these first? Money, plain and simple. I think this forum has helped me so much when I have questions. I feel so lost but then so many help me gain my sanity again. We learn from each other. Cheers to all, we are stronger together.
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I am still surprised that a nursing home handling many older people for rehab would not have nurses that are knowledgeable about UTIs causing sudden odd behavior in seniors. From what I understand, dementia doesn't hit full blown overnight and the urine test should be the first step with sudden uncharacteristic behavior...then see if the behavior clears after the antibioticif there is a UTI, and if not then test for other potential conditions.
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Just sharing here. ..don't feel guilty or afraid to bring your loved one to the ER "just in case". We caregivers are always in the position to have to determine if something is serious or not and we deal with symptoms everyday so it can be really hard to tell. In my case, the nearest hospital is a dump and I try to avoid it at all possible costs so when my parents reqiured what i thought was immediate medical attention I drive over a half hour to a much better hospital. However, private ambulance companies have told me if they deem it life threatening we have no choice my parents are going to end up in the local dump anyway so number one I use it almost as a threat to them so they won't resist me wanting to take them to the ER. I tell them I hope this doesn't turn into an emergency because you know where you're going to go to that hospital that we don't like. I don't just go for the sake of it but sometimes it can be a hard call. My mother's geriatric doctor is the one who made me feel better about this and told me do not feel bad about bringing them in because better safe than sorry and it also will establish a case if you need future care if there's also a history that develops on file...
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Great answers here. Indo, You just keep up the good work. We are always learning! blou
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@Darcy - I am the victim of UTI's over the past forty years. Every six weeks or so! They are painful (at least for me) and depressing. I've seen specialists, still nothing other than the recommendation of the 'real cranberry juice). One specialist recommended the thirty dollar a bottle kind (I think he owns stock)....I settled for the $10.00 bottle.

I've tried everything, the 'real' cold pressed all cranberry juices which I put in a shot glass and drink it like whiskey, i.e., fast) to lots of water, and the list goes on. Years ago, as a preventive, I was given Bactrim that I could take upon the first sigh, but apparently in an effort to stop needless antibiotic prescriptions, doctors don't prescribe as a preventive anymore.

I finally started the cranberry capsules that I thought weren't going to work. First thing in the morning, before I even enter the kitchen, I take one with a large glass of water. Last thing at night, one with a large glass of water (yes, I have to get up to pee, but it's better than the alternative).

It's been eight weeks. My fingers are crossed.

p.s. a UTI is why I brought my mom to the doctor after she was using the bathroom numerous times. She fell after giving a sample in that office, landing in rehab. Turns out she did have a UTI, but that was missed in the chaos of the fall. I had to ask the doctor again to test her because after a few weeks of rehab, she was still presenting with the need to pee. It's a shame when you have to ask the doctor for something she should be doing anyway.

I'm tired of doctors. I'm tired of caregiving. I'm tired of having to apply to Medicaid, having to listen to my mother complain about a beautiful place she's in, and the list goes on.

I'm just plain tired! Stick with us, kid, and you'll learn a lot :)
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Someone asked why Drs don't just "do" a UA to rule out changes in behavior? I obviously can't answer that for every Dr. I can't read their minds. I do know that your average Dr doesn't know that much about GERIATRICS. It is a whole different science that what they generally treat. Someone mentioned having a UTI at 30. I bet you didn't get confused or have behavior problems from it, did you? (Just making a point.) 98% of GERIATRICS will. If they aren't complaining of the usual symptoms (for some reason, elderly don't always have the same symptoms either.) That is why I stress the importance of finding someone who ONLY treats the elderly. (It can also be lack of experience. Someone who has spend a lot of time treating the elderly, they come to know more of these things with time.) Just as it is important to have a pediatrician for a small child. It is also important for us to be educated to their needs as an elderly person. (When our children were little, we studied child rearing in depth, right? Vaccinations, dos/don'ts, colds, mumps, measles, etc) We need to put that same effort into raising our elderly parents, etc now. Know enough that you can present INTELLIGENT questions for the Dr. (Just don't presume to know more than the Dr., and they HATE it when someone says, "I read on the internet....." It is the fastest way to get a Dr to shut down and STOP listening to you!) BUT, that being said, if you don't agree with your Dr on any issue (pick your battles) get a second opinion. Hope this helps some.

Darcy!
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Given the propensity for the elderly to have more frequent UTI's, shouldn't the doctor have checked for the simple stuff, first?

It's not your fault.

That being said, is her 'dementia' better?

One person above suggested geriatrics doctor. I've got nothing but good things to say about this specialization, however, you need to understand that not all doctors are board certified in this field.

I was of the opinion when I studied this back in 1999/2000 that this would be a growing field. Unfortunately, it is not given the gross income is not as good as it would be if a doctor was to take up being a PCP.

As usual, unless you find someone who isn't out for the monetary aspects of a profession, we'll have to bone up on our medical knowledge and seriously ask the doctor to check these things first.

Sad, but true.

I've met up with such incompetence everywhere I've turned for professional 'expertise' lately that I'm sickened. Just because a person has that degree under their belt, doesn't mean they've kept up with the current practices or what's available out there.
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After reading the comments about Cranberry Juice... I abhor cranberry juice, and cranberries in general. I am sure I am not alone. My mom had a hard time drinking enough to be medicinal, so we got her cranberry CAPSULES. They are an awesome thing!! We just started giving them to her daily with her other pills. She NEVER had another UTI (2 years?) after that. We also have a dog that the vet prescribed them for her! They did the trick. Just throwing that out there as an option for people who can't tolerate the flavor and tartness of Cranberry! I also do not work for the cranberry pill peoples!! :p
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Do you know for sure that the UTI is completely to blame? UTI can and do cause horrible "dementia like" symptoms!! Many a person has had UTIs and mistakenly diagnosed. BUT, on the other hand... It is possible (without knowing the time frames on this, I am guessing this wasn't an over night thing, since she lost a considerable amount of weight?) that she has dementia and THEN suffered a UTI. It can go either way. Don't get a head of yourself. Make sure that she has NO signs of dementia after a full round of antibiotics. Don't rush to make a ruling. I know my mom, she had dementia, then she got a UTI. WOW! She really went over the edge. She got "better" after the Antibiotic. But not CURED. She still had dementia. Just not as bad as it was with the UTI.

I know when I worked at the Nursing home (for many years as a charge nurse) it got to the point when someone suddenly had a change in mental status, we would first run a UA to rule out UTI. BUT, if the Dr isn't used to working with Geriatric, they don't always think along those lines. If you have a General Practitioner it might be a good idea to find someone who specializes in Geriatrics! I switched my parents to a ARNP (Nurse Practitioner) who studied IN DEPTH geriatrics. I had the advantage of knowing her skills by working in the Nursing home, but you can do some homework and find someone who knows the issues your mom is facing. Geriatrics is a special field, much different from their needs even just a few years ago.

Hope this helps. Keep an open mind.
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Okay, last plug for cranberry juice here (I promise I don't work for a cranberry juice company). Here's a study from 2010 documenting how it could be that the juice prevents UTIs from becoming worse. Apparently it doesn't kill the bacteria, just makes the urinary tract an inhospitable environment for it to grow & multiply. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3133681/
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I can't tell you how many times I fretted over the possibility of a UTI to explain a change in behavior. My pharmacist suggested a home test strip for those times. I really recommend them. You need a toilet hat or something to collect a sample in easier then a cup. UTIs are a plague among the elderly and their caregivers.
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Oh, and here's another thing. I got bad UTI when I was in my early 30s. I had no idea what it was - I'd never heard of a urinary tract infection - and when I went to the doctor, after getting a prescription for sulfa drugs to deal with it, a friend told me about cranberry juice. Ever since then I drink cranberry juice whenever I feel like I might have an infection and it goes away. I'm happy to know my folks' new "home away from home" (ALF) has the stuff on tap in the dining room.
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The other thing to realize is that even if you had known about UTI's and dementia symptoms, at the time of her original diagnosis she may not have had a UTI. As another member said, they are fairly common and some people get them often. My mom has a mild dementia and the first thing I thought of (desperate for some other explanation aside from dementia) was that maybe she had a UTI. So I asked for her to be tested. There was no UTI.

I wonder, though, having read these responses, why geriatric doctors don't just do regular UTI tests? Does anyone reading this know why that might be?
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Guys, you have no idea how grateful I am to this site. There are so many things I didn't know and it looks like I'm entering the eldercare phase with my parents.
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I agree. You would think that the first thing they would do would be a simple urine test...then they can always test for other things if it is not a UTI. How could something so simple be so overlooked? Perhaps it would just be too easy and not bring in so much money for them as other tests and ER visits, so they choose to ignore the obvious first.....I just don't trust the medical industry or the nursing homes at all anymore after all the bad experiences we have been through these last 9 months.
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I have learned after spending the night in the ER thinking my dad had a stroke or something, the signs of an UTI. They are very common in the elderly and I now keep a urine sample cup at his home and whenever I suspect a problem, I can drop it off at the doctors. My dad slows, down, becomes confused and sometimes is flushed but without a fever. The one to be angry at is the doctors because they often put this test off as a last ditch instead it should be the first thing as it is a really easy test. By the way, the ER visit was $7000. What a crock of ------.
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Though you feel terrible, I hope you all are also excited anout this really good news! She may need lots more nutritional support for a while with her body having been through so much.
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