M1 or other health folks

May flowers

We still feel like my FIL has not beat this UTI, he has been treated three times since Jan (well, four if you count the hospital treatment during his stay)  first was nitrofurantoin, the second was sulfa(something), the third was Cipro. He does well for a week following but we feel he is not beating it.

Now his urine smells strongly of ammonia. He is drinking about 60oz of liquid daily so I dont think it’s dehydration. They started him back on a prostrate med over a week ago and while it has made him pee in the daytime, we still have this strong smell. Hospice tried to cath him (second time) for a sample on Friday but were unsuccessful.

Anyway, we are stumped at what to do next and hospice is not offering suggestions. They can bring out a different cath and try and get a sample. They said we can take him to a urologist.

Thing is, if it’s something treatable,we want to treat as he is very uncomfortable. If it’s not, at least we know and we can focus on comfort care/pain meds only. Any suggestions on where we go from here?

Ed1937

I'm sorry May. I'm not in the healthcare field, but cipro is known for not being a good choice for people with dementia. Many professionals do not know this. This is only one link. You can google others.https://medicalxpress.com/news/2018-07-fda-stronger-potent-class-antibiotics.html  

easy23

I'm not a healthcare person but my husband had UTI's that he couldn't beat with antibiotics.  He went to an urologist, who ordered a CT scan, which showed diverticulitis which caused a fistula from his colon to his bladder.  He wound up having surgery, but the CT scan was key in getting the proper diagnosis - thanks to the urologist.

sandwichone123

My mom had a recurring UTI over several months which turned out to be appendicitis. Appendectomy, no more UTI.

May flowers

Wow, just goes to show you never know. I think a urologist appt is in order, we will have to use a medical transport. He’s stage 7, but even so, if it’s treatable we don’t want him suffering unnecessarily.

ButterflyWings

May flowers - another lay person here...but was a culture done? Our hospice does not do the them but before he went on palliative, then hospice, DH had 2 or 3 UTIs in < a year without checking to see exactly what bacteria was causing his issues. I learned what to ask for here, but the team we were dealing with at the time was less than responsive to this spouse’s non-professional suggestions. (Note: we are no longer with that medical team).  

Without testing a urine sample and doing the culture/s, the antibiotics prescribed by his prior PCP weren't completely clearing up the infection. I think it was Cipro (?) Is that the giant white horse pill? Anyway, I was able to get his new Geri doc’s home visiting staffer to bring us a sterile cup and return for it when the deed was done. 

With results from the culture, they decided to give him Keflex (sp?) cephalexin - which cleared the UTI up. His off the charts problem behavior was back to baseline within 24 hours, with a couple of minor blips a couple of times over the next 2 weeks. That was last year and we have had other issues & obvious progression since then, but not the UTI drama.

If you can get a sample to a lab, it is worth it. They have suggested I keep some sterile cups on hand for that purpose. If I can get out to the pharmacy anytime soon I will do that, just in case. In the meantime, our hospice team says the nurses do have them and can provide me with one as needed, if his Geri PCP will order the lab & share the results. They will.

I think you and DH are doing the right thing to press for better assessment of your FIL’s blockage or whatever is going on. Maybe they can do a culture as part of that. 

M1

Difficult question MF.  How can you tell he's uncomfortable, is he complaining about pain in his pelvis?  I would want to know what prostate medicine they put him on.  If he really can't pee, he may need an indwelling catheter, but those are also very uncomfortable (and with dementia, a lot of men try to pull them out).  

Hard to say much from a distance.  I would not try to force fluids, that could make an overextended bladder worse.  

I would suspect he is not completely emptying his bladder, which can cause discomfort, and the urine just sitting there is certainly prone to get infected.  Certainly, a urine sample if available should be sent for culture and antibiotic sensitivities, because antibioic resistance is entirely possible too.

Very hard call.  This is likely not easily treatable, I hate to tell you.

May flowers

ButterflyWings -I agree about a culture. We asked for one before they started Cipro too.  hospice tried to get a culture Friday, but can’t get the catheter in. Second time they haven’t been able to cath him - this time it was the clinical manager trying. I think the idea about keeping some sterile cups is good… sometimes he will start peeing when I’m changing him… I’d have to be pretty quick!

M1, they suspected he isn’t able to empty his bladder. He wasn’t emptying at all during the day, and peeing all night.  They tried to insert a catheter 2 weeks ago and couldn’t, then they put him on Doxazosin Mesylate in case it’s a prostrate problem. He is peeing some during the day now. He does not complain of pain, but he never has. He appears extremely uncomfortable, agitated and restless whenever he has had a UTI in the past and that is what is happening now. 

If he ends up with a catheter, I suppose we will need to put him in his zip-back onesie. It has been effective at not allowing him to not take his diaper off at night, and might work for that. I don’t know.

Jo C.

I am so sorry;  it may take a visit to the ER and even perhaps with a urologist meeting you there to achieve success.  Hospice can indeed approve of medical needs that they cannot meet.

Let us know how it is going,

J.

M1

I can guarantee you he won't like a catheter.  And even with onesies, I've had demented male patients rip catheters out--with the retaining ballon up--and destroy their urethras.  You would have to keep his hands away from the tube completely, maybe even with restraints--this is where it gets to be a terrible downhill spiral.  So be prepared, they may end up talking about placing a suprapubic catheter--through the abdominal wall--very invasive, for sure.  But a distended bladder is indeed extremely uncomfortable too.  I'm so sorry.  It does sound like an ER trip with a urologist to meet you there may be in order.

Joydean

May flowers, hope you get the right help for your fil. I don’t have any advice, but I sure can pray for each of you!

May flowers

M1, he for sure won’t like it and I hope he won’t need it. I do think the med is helping him empty some during the day and his bladder does not feel as full.

 I was really hoping they could get a urine catch Friday so we had an idea what (if anything) is going on. His urine smells really strong of ammonia, which is new. When she couldn’t get a catheter in to get a sample, we tried everything to get him to pee in a  cup, put his hand in warm water, ran the sink, stood him up, etc. I have a condom catheter and I wonder if catching in that bag (never used) would be sterile enough for a sample.

Anyway, I’ve passed along you and Jo’s suggestions to DH. He has to make that call. He doesn’t want to take his dad to the hospital or doctor if there is anything that can be done through hospice because it’s so hard on his dad.

Joydean, thanks for your prayers, much appreciated!

Jo C.

I am so sorry; if it is decided that being seen in the ER setting would serve him best out of necessity, be sure to insist that Hospice covers an ambulance transfer both ways to and from the hospital; that should be what is done.  That is a last ditch effort at getting that catheter in if it is considered appropriate for what is at hand; getting the ER MD or having an appointment for a Urologist to meet your LO in the ER would be the next step due to necessity as decided by the Hospice doctor, (who usually does not make home visits.)

J.

J.

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MN Chickadee

Have they ruled out him being "colonized" and C-Diff? Near the end they thought my mother may be colonized, she had recurrent UTI.  I think that means she would no longer respond to antibiotics. I got the impression it would have been more managing comfort via hospice than any other interventions. She didn't live too much longer to find out. 

My father (no dementia) had an enlarged prostate which caused the distended bladder problem and he had very similar problems to what you are describing. Recurring UTIs that were hard to successfully treat, cloudy smelly urine, sometimes blood in the urine, emptying the bladder all night and not during the day. He had the TURP procedure on the prostate to help the problem but I'm not sure that would be doable in your situation. It involved general anesthesia and a foley catheter for 10 days after to recover. Not a particularly hard recovery but he hated having the cath in, didn't sleep well with it and it was hard to manage for him with a fully functioning brain. The alternative to the surgery would have been continuing with some limited success taking Flomax, which my understanding is not great for dementia. Hopefully they can get a sample and culture it and know for sure what is going on. That seems like the only way to know for sure if there is a way to treat it at the moment. 

May flowers

Thank you all for the helpful advice and … DH and I were wondering how exactly we go about getting a urologist to meet him at the ER. He does not have a urologist so is this something the hospice doctor would arrange or do we need to just start calling urologists?

M1

May flowers you certainly could ask the hospice folks, but I think you might have better luck calling the triage nurse in the ER ahead of time. unfortunately, you'll probably just have to go and wait for the er to call a urologist down. But it can't hurt to ask.

Jo C.

There are options for this: 

One:  Hospice, when they cannot provide the care needed, can have the patient seen in the ER, or admitted to the acute hospital for a short term stay.  Your LO does seem to meet criteria for such an admission at either point of care. Hospice does not like to do this as it requires much paperwork, and can affect method of reimbursement and requires the case being audited which is normal oversight; BUT it is done and is permitted by Medicare.  Ask about that and when doing so, be a bit firm about it.

Two:  If Hospice will not permit an ER visit or a short acute hospital admission then what is usually done is to disenroll the patient from Hospice for that day or those days. When the treatment is completed, the patient is readmitted to the same Hospice again, (or you can make a Hospice change if you want to.)  This also happens in some instances and can be a normal course of events as necessary.  Hospice staff can discuss this with you.

For other Members here who may have a need for a specialist but do not have Hospice:  What I did before I had Hospice, was to call the acute hospital med center and get transferred to the Medical Staff Office. This is the office where physicians are "credentialed" to work within their facility.  The Med Staff Secretary gave me the names of specialists on staff and their contact phone numbers.

This enabled me to contact the office of the specialist that was needed to see if I could get accommodation.  When the speciality call is made, do not speak to the nice person/clerk answering the phone; instead ask if there is a licensed nurse on staff; ask to be transferred to that person, if there is not, ask to speak to the Office Manager.

One can then state their need (and again with a bit of urgency) ask them if you can speak to their physician with his/her calling your back, if so - good. If not, ask them to plead your case and get back to you.  This did help the one time I had to do it.

Even better, is the idea of having one's own physician contact the specialist and make the request for the ER appt. need if one does have a primary care MD: not all folks do.  Using one's non-Hospice primary care MD is often helpful.  A collegial contact is often much more successful.  NOTE:  Could be that the Hospice MD could make such a call re an ER visit, but you would have to ask if they would be willing to do this.  Some are more beneficent than others.

Whew!  It is a lot, I know. But there can be success; one just has to make a few contacts and hang on.

Let us know how it goes; so hope that assistance can be gained for the urinary retention with distended bladder; so uncomfortable and hope that Hospice will be able to manage this for you.

J.

DrinaJGB

In 2010 during the 4 months my DH was hospitalized in ICU and acute care and rehab facilities he had recurrent UTIs. He was kept in isolation the whole time and he came home with the "VRE" UTI (vancomycin resistant enterobacter).

  I took him to many urology doctors to have a positive culture treated with oral anbx.- only to have it return repeatedly.I could always tell when it had returned because he became bats**t crazy in his behaviors.

Out of sheer desperation  I finally got a referral from his physical medicine doctor (also chief at Baylor)- to the chief of urology at Baylor who suggested --if I was willing--to write DH a prescription for a compounded antibiotic that would have to be irrigated into his bladder daily for several weeks until 3 cultures came back negative.

  I agreed to do it. It worked and has never returned. DH had also had a neurogenic bladder due to the viral brain injury which had further complicated the issue. Twelve years later and he still struggles with some incontinence issues, but it is worlds better than it used to be.

It is a tough road for sure on top of so many other things to be dealing with. Good luck.

dj

June45

Jo C. wrote:

Two:  If Hospice will not permit an ER visit or a short acute hospital admission then what is usually done is to disenroll the patient from Hospice for that day or those days. When the treatment is completed, the patient is readmitted to the same Hospice again, (or you can make a Hospice change if you want to.)  This also happens in some instances and can be a normal course of events as necessary.  Hospice staff can discuss this with you.

When my husband broke his hip and required a visit to the ER, subsequent hospital stay and rehab, I went with Option Two above.  I understood the dynamics of what hospice covered. He was dis-enrolled with a quick signature and we were on our way to the ER.  The day after my husband was discharged from rehab, the same hospice quickly enrolled my husband again and things resumed as before.  The ER, hospital stay and rehab were completely covered under medicare so it wasn't a financial burden being off of hospice. But be aware, if you have any medical equipment provided by hospice they will most likely pick it up but they will promptly return it when you get back on hospice.

May flowers

Fortunately, his urine has stopped smelling so strong of ammonia and he is now filling his depends regularly during the day. So that’s good.

I have a condom catheter and bag (I bought for night time peeing issues but never opened or used), the hospice nurse says they should be able to use whatever we catch for a urine culture if we refrigerate it before she arrives. I’m going to try that in the am. Fingers crossed. 

New hurdle, this prostrate med that is helping him pee is causing strange  behaviors (much like Tamulosin which made him berserk). This one is not as bad but he is definitely reacting badly to it. I couldn’t give it today anyway because his BP was 75/45. Phew, it is always something

Edited to add: we did get a catch today, hopefully it’s clean enough to get a culture (fingers crossed).