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We are trying to help care for a loved one who lives far away. Local siblings reported that she was extremely confused on Father's Day. They thought the caregiver looked awful too. They wonder if it might be time to look for residential care. Some of them do not see her very often (every three months or so) so I wonder if maybe the decline over the past few months has surprised them. However, if this is a rapid change should we ask to have her urine cultured? She was just at her annual physical but my husband confirmed this morning that a urine analysis was not done. She may have just been having a bad day, too. There was a lot of company. When is it appropriate to ask the doctor to do a urine culture? How long can a urinary tract infection go untreated before it causes symptoms other than confusion? What other symptoms should we ask her caretaker to look for? Will she eventually run a fever or something?

Shakingdustoff, you said "long story short, last spring in desperation i removed all the toilet paper from her bathroom, and stepped up to manage the situation on my own. she has not had a treatable UTI since then. That is Great and all, that you've managed to preempt any new UTI's from occurring,  but you didn't say How you managed her peri-anal care, as I assume you Must be doing.  Are you the using a wipe of some sort,  or putting her into the shower for a wash down? I think it's important to say How you managed to keep her clean, so that other may use Your routine to stall off recurring UTI symptoms. I think taking away the toilet paper is a good idea for obvious reasons,  but what do you do to keep her clean and infection free. Thank you in advance! 
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Moms UTI symptoms are hallucinations, strong urine, and a low grade fever. The NH likes to have at least 2 of these symptoms to do the test. Her temperature is usually around 97 so even getting to 98 is feverish for her and clammy hot/cold. She does not experience pain that she tells us about, unlike the awful pain us younger ladies usually feel. It may be hard for some caregivers to distinguish the UTI hallucinations/ delirium from possible dementia related behaviors, but they are more easily recognized by someone who sees the person daily. Then they look obvious. One other path to pursue however is dehydration which also tends to send Mom off the rails with similar weird behavior. You could also just do an AZO test at home to be able to tell the doctor.
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RE: opinions offered. I would like to say that I appreciate anyone who takes the time to weigh in on a problem. I think we can learn from the experiences of others and it is helpful to me to hear how people think about a situation. It gives me an opportunity to see things with "new eyes." Shakingdustoff isn't the only one posting on this board who had bad NH experiences. However, it's important to remember that there are other posters on this board who are working in nursing homes right now and trying to help people. It's hurtful to them to have to read broad statements that disparage their life's work. Caregivers in a nursing home situation are often angels of mercy on earth! A few bad apples shouldn't cause us to forget that.

Shakingdustoff's point about overuse of antibiotics was helpful and I appreciate the time she took to post.
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Thank you for asking, Barb. He is not doing well at all. He is having back spasms, he can't sleep and he worries constantly. The primary care does not seem to have any special talents with regard to dementia patients but the aging care specialist we hired (social worker ) is very experienced in this area and luckily, he trusts her.  So she can help guide him- if he will listen.   The social worker, the geriatric care team counselor and the patient's Primary Care doctor have all strongly encouraged him to get more help with his wife. Right now, he has a caregiver come in for two hours four times a week. He is eligible for much more help, including a day care program.
He is very reluctant to have the home care providers touch her (although he is letting them help her bathe) and he is also reluctant to have her to leave the house without him.
The social worker thinks there are two reasons for his reluctance to accept help. He's trying to control what he can control, since he can't control her illness. And he is reluctant to admit that she needs help because that is admitting she has a terminal disease. I stated before that in my opinion she would outlive him if he doesn't accept more help and I was not kidding. His family has extreme longevity but his father and grandfather were well cared for; they did not provide care to anyone. Women do the caregiving in his family of origin. Another problem is that he says no to all offers of help unless the helpers are willing to do exactly as he wants. He offers no flexibility or acknowledgement that people can only offer what they have to offer. He wants to dictate the terms. It's a very sad situation. But it could be a lot better if he were more cooperative. But...you play the hand you are dealt I suppose.
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Marcia; Just a follow-up question. How is your FIL doing? You mentioned in your first post that someone said that HE looked awful.

Caring for a dementia patient is NOT a job for one person. Certainly not for one ELDERLY person. Does FIL have help coming in on a regular basis?

Getting a dementia patient to drink more water and follow a bed time routine can be fraught with a LOT of pitfalls. Does the doctor she sees have a lot of experience with dementia patients?
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shakingdustoff,
Just because YOU had a bad experience with a nursing home does NOT mean that Marcia's loved one is going to have the same experience. Marcia stated that "I am happy with the professionals she has on her care team. " Then that should be enough for you. If you had read the previous postings, then you would know that Marcia is very knowledgably about UTIs and if she has a specific question, she knows what to ask.

This is 4th or 5th time that you have repeated this story and you are beginning to sound like a broken record that can't be fixed. I am sorry that your Mom had such a bad experience, but please quit offering such unfounded and weird advice.
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Reply to DeeAnna
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I think you've covered all the ground here; I'm just wondering why kind of PCP doesn't do routine urine testing at an annual?
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Update: The doctor feels that as a rule, he prefers to avoid antibiotics unless truly necessary. He spoke with my FIL about increasing her fluid intake and asked him to keep him posted if she were to develop pain, frequency, urgency or had delusions or hallucinations. A sibling stopped by today and said that his mother recognized him and was much less confused. So it may have just been a bad day. We will wait and see.
I appreciate this doctor's decision to hold off on medicating her. When they discussed her daytime sleepiness, he didn't jump to prescribe a sleeping pill. He prescribed more daytime activity and suggested a routine at bedtime to help her know it was time to go to sleep. I am happy with the professionals she has on her care team.
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In addition to lethargy, and lack of appetite, behavior can become agitated with a UTI -
Cloudy or foul smelling urine would be an indicator as well

If an infection advances to the point of fever, and/or vomiting then a trip to the ER would be warranted
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Has your loved one been experiencing the extreme fatigue for some time or just since the party on Father's Day?

When was your loved one diagnosed with Dementia/Alzheimer's? If it has been more than 6 months and the fatigue seems to have gotten worse, then it might be time to have your loved one see the doctor. Has her eating habits changed? Often, people with Dementia/Alzheimer's will not eat as much as they used to and that can affect their nutritional status. Maybe if her husband gives her a can of supplement every day between meals (like at 10 AM or 2 PM) such as Boost or Ensure or whatever your loved one likes. There are also yogurts and frozen yogurts or smoothies (I like the ones on a stick for myself.) that give protein in a small quantity of food. The protein that is added to most foods is "WHEY" which is "MILK PROTEIN". That is what is in those HUGE jars that body builders buy in health stores.

As your family becomes familiar with your loved one's "Usual Dementia/Alzheimer's behavior", then you will be able to determine when her behavior might be due to disease progression or due to something else. Good Luck and God Bless!
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Marcia7321 Jun 20, 2018
She was diagnosed about two years ago. She was exhibiting extreme fatigue when we saw her last month. She was so tired that I was afraid she was going to fall off the dining room chair so I moved her to the couch. Her husband said she had "lost her balance" and had a fall the week before we came. We hadn't been up there in months and we found her significantly worse than when we had last seen her. She had a doctor visit just last week and I know they discussed her fatigue and suggested some sleep hygiene techniques. They didn't discuss the dizziness or the fall and wrote the increased confusion off to the progression of the disease. I also mentioned to her social worker that she used to be a big water drinker and over the four day visit, I did not see her drink except with meals. And then it wasn't more than a couple of sips.
That article was extremely helpful. I would not have put those symptoms together to think of a UTI! She doesn't see the memory care team until October. Maybe a geriatrician might have known what to ask more than the GP does. Maybe if we give the GP a better picture of the situation, they will investigate a possible UTI.
Oh poor little thing! This stinks. This forum is so helpful. Thank you all.
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Marica, when my elderly Dad had an Urinary Tract Infection he was seeing ants on the walls and in his food. I remember his caregiver calling me, and I said I wonder if it is an UTI. The caregiver took my Dad to Urgent Care where he was tested, and sure enough it was a UTI.
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With both women, we waited until we saw symptoms because their UTI and pneumonia were so unpredictable. Even if we had done urine samples and chest x-rays on a regular basis, the women still could have developed their health problems the week after the tests were done. So it was best to wait for symptoms to show up and then do the testing. It was less costly as well.
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Marcia, I found the article that I was looking this website--AgingCare.com that talks about UTIs in the elderly. I think that this might be more helpful as it has several comments at the end.

https://www.agingcare.com/articles/urinary-tract-infections-elderly-146026.htm
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Marcia7321 Jun 20, 2018
Oh my goodness! She was dizzy and had a fall recently too. I don't think the caretaker told the doctor that. I think I'll write a letter expressing our concerns. Extreme fatigue, dizziness and a sharp increase in confusion certainly sound like a cluster of symptoms that should be investigated. That article was extremely helpful. Thanks so much.
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Here is an example of how UTIs can affect the elderly:
A woman I know was normally very social and active; she loved playing cards, doing puzzles, and bowling (with plastic pins and balls in the facility dining room). She could walk without any assistance. When she would get an UTI, she became a different person. She became withdrawn, would not participate in her usual activities, could not even speak properly, nor could she walk by herself, sometimes she had to be pushed in a wheel chair. Fever?-Nope. Complain of burning with urination?--Nope. Just the behavior changes. Once she received the antibiotics and the UTI was gone, she became her old self again.

Here another example of how infections can affect the elderly:
Another woman I knew was very steady on her feet and was able to walk without assistance. She had a tendency to get mild pneumonia about once or twice a year--easily treatable with antibiotics. How did we know that she had pneumonia? She didn't have any breathing problems. SHE WOULD FALL. We knew that if she fell that we needed to have her see the doctor for a chest x-ray to see if she had pneumonia again...and she did every time.

Do these examples help you any?
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Marcia7321 Jun 20, 2018
Definitely! Thank you. Did the patients get regular urine tests or did you just wait to observe their behavior and test them when it changed?

This morning was the first time we contacted her doctor since she was diagnosed and we don't want to be the kind of family that tells him how to do his job. But if behavior changes are the only observable symptom, maybe she needs periodic testing. Her husband did express at the last doctor visit that he was concerned about her extreme fatigue. I was disappointed that a urine analysis wasn't part of the semiannual exam.

What I would not want is for her to get antibiotics 'just to see' or just to mollify us ! Increased confusion is most likely just part of the disease progression, I would guess. As long as she's not in pain, I suppose we should just wait and see? Maybe they will do a culture for us. What is the harm?
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Thanks, Countrymouse. The woman who took the message said she didn't think the doctor would order a culture without a symptom...which makes perfect sense to me. Unless the patient isn't going to show a symptom. Then what?

I guess as long as she isn't in pain we can wait on this? I agree about using antibiotics "just in case." That's not a good idea. We hired an Aging Care Specialist who might be able to help us but she's on vacation. Thank you all for your responses.
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My dad typically doesn’t have fever when he has a UTI, nor pain. He does seem more tired and lethargic than usual, which isn’t so easy to tell since his activity level is already low. It takes a urine test to confirm, and he gets them several times a year. So far he hasn’t had the confusion some see with them
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Elderly people often don't feel pain or urgency, and failing immune systems often mean there's no fever or other clear reaction either.

I just can't see what conceivable harm it would do to run a culture. Is it difficult to get a clean specimen off her or something? Who would be able to help with that?

There has been quite a lot of debate about the treatment of low grade uti's in elderly patients; it's not always the best idea just to chuck some antibiotics at it and cross your fingers, as has been usual practice in recent years. But to my mind, that's still no reason not to *investigate*.
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Marcia,
Here are three websites that tell you about UTIs, causes, symptoms and treatment. I think that you might find them very informative. Let me know if you have any other questions.

www.womenshealth.gov/a-z-topics/urinary-tract-infections

www.medlineplus.gov/ency/article/000521.htm

www.mayoclinic.org/diseases-conditions/urinary-tract-infection/symptoms-causes/syc-20353447
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Marcia7321 Jun 20, 2018
Thanks very much. I (unfortunately!) know the normal symptoms of a UTI. I was under the impression that in the elderly, they often did not have pain, urgency ect... and wondered how , other than constant testing, these infections could be diagnosed. Maybe they still will run a fever eventually? I guess we will ask the doctor if he calls us.
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Thank you, DeeAnna. We left a message at the doctor's office asking the doctor to consider doing a urine culture. (The woman taking the message wasn't very encouraging, but we asked anyway.) . We are going to ask the local siblings to check in on her in a quieter setting to see if she still seems very confused to them. We won't get up there again until the end of July. If it is a UTI and it remains undiagnosed, what will happen? How do other people with ALZ patients keep tabs on whether or not their loved ones have a UTI? Are there any other symptoms to look for?
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It could be a combination of everything that you have mentioned: your loved one was "just been having a bad day" because "was a lot of company"; that those who don't see your loved one often might have been surprised by your loved one's decline over the past few months; or that it "might be time to look for residential care".

If the change in your loved one has been rapid and you are seeing increased confusion and disorientation along with your love one not act like themselves, then I think that it is time to have their urine checked for a UTI. Ask the doctor for a UA and a Urine culture. It takes about 3 days for the culture to process enough so that the bacteria can be identified and the proper antibiotic prescribed. Your loved one's doctor might prescribe an antibiotic when the UA sample is taken and then change the antibiotic if a different one will work better on whatever is causing your loved one's UTI. After the antibiotic is completed, ask the doctor if he/she will do a follow-up urine sample to check if the UTI has been treated completely or whether another prescription of antibiotics will be needed to completely clear up the UTI. If a regular urine sample is difficult to obtain from your loved one, LO may need to have a "straight-catheterization" done to obtain urine for the Urine Culture.

Let us know what happens with your loved one and if they have an UTI or not.
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