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I have been through the ringer over the past couple of weeks with my father, 90, who's in a SNF after a bad fall in May due to progressing Parkinson's Disease. He also has CHF, Afib, T2 diabetes, incontinence, & stg 3 kidney disease. FYI...I am an only child, no other living relatives to help me except my husband when he can, & we have a teen at home, so SNF was the only answer.
My father got his 1st UTI back in July. I was familiar with the confusion & delirium it causes in elderly after seeing my aunt go through it her last year of life. He was treated & returned to baseline. He has some very mild dementia that only started after the fall & subsequent surgery, probably due to anesthesia & worsening PD.
Then, a few weeks later, he became severely confused suddenly. Diagnosed another UTI. They gave him Cipro, which seemed to make the delirium much worse. He never seemed to get back to baseline after Cipro was finished, & was often agitated and confused. Over the next few weeks, it kept getting worse. I had them retest for UTI, they said negative. So the SNF doctor tried to convince me that this level of delirium that came on suddenly over the course of just a couple weeks was dementia. I know enough to know that's not usually how dementia develops. One day they gave him Ativan without my knowledge, which caused a horrible reaction & he was out of his mind. Then they put him on an anti-psychotic, Zyprexa, & it made things even worse - it caused agitiation & agression, and he tried to hit me. He has NEVER done that. It was traumatizing & upsetting. After that incident, I went thru my dad's med lists and saw that they'd also been giving him Flexeril since late-July, right after the first UTI, and right when I started to notice the big shift in his cognition and the delirium began to worsen. A quick Google of Flexeril comes up with all sorts of info on how it causes confusion & hallucinations in elderly.
The next day, I spoke to the doctor and had her take him off both the Flexeril & Zyprexa. They did a blood test that showed elevated white blood cells, so of course, as I suspected, he had another UTI, or the other one never cleared completely, which is what I'd been saying all along. After 2 days off of Flexeril & Zyprexa, I visited my dad over the weekend, & he was so much better. Still confused but times of being lucid, not agitated or aggressive, and much more himself. We were able to have a conversation, whereas the previous week or so, he was so delirious that he was in a loop of believing very specific crazy delusions.
But that was short-lived. I visited yesterday & he was back to wandering (he never left his room before all this unless I made him), and in a delusional loop. He called me last night and this morning asking crazy questions but was calm. I am now convinced it's the antibiotic causing worsening delirium after some research on Levoflaxcin. Dr doesn't want to switch it & said he may just have this reaction to all antibiotics and it's clearing the infection as his white blood cell count is normal again.
I cannot get him an appointment with a urologist for at least 2 months. I don't know what to do at this point, He's so distressed from this delirium. There is no quality of life at all. I am so stressed out because all I have done for a full week and a half is try to advocate, and I feel like I am doing the right things to get some improvement, then have it revert back to the delirium. I understand it can take time to clear but I feel like we are in a cycle of UTIs/delirium. He is now taking a D-Mannose/Cranberry supplement daily.



Has anyone experienced anything similar? I am at the point where I don't know what else to do. I asked a couple months ago about Hospice consult and social worker said we weren't there yet. But that was before recurrent UTIs and constant delirium, which to me, seems to be causing further decline. There is no quality of life, this is highly distressing for him and us.

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I am so glad that he will be eventually able to see a urologist because she can look for the cause of the recurrent UTIs, formulate a plan to prevent future recurrences, and effectively treat any breakthrough infections. My mom has Lewy body dementia and recurrent UTIS, and the combination makes her psychotic and stuck in a delusional loop just as you described for your dad. Like your dad, she was actually worse with the antipsychotic, not Zyprexa but Abilify (aripiprazole). However, one that is working really well for her is Seroquel (quetiapine). Maybe you could discuss it with his doctor. The major thing, though, is to get rid of the UTI and try to keep it from returning. The urologist is your best resource for that,
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Reply to Iamtired
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My dad found that he had both a bladder stone and kidney stone that were causing recurrent UTI's. They've just been removed and we are hopeful the infections won't be coming back.
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I was thinking again about UTIs in men, why they might be more difficult to cure, and the different plumbing issues. For men, there are longer pipes for the infection to linger in. UTIs in older people don’t usually have the screaming pain that can happen for young women, and delirium may be the only symptom. It could be worth going back to the advice to ‘drink lots of water to flush it through’, this time to flush it through the pipes. Has this been happening? It might also help to finish with cranberry juice as the last mouthful after a lot of water gulps. Just a thought!
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Speak with your father's physician and tell him/ her that you want your father to be evaluated by hospice for hospice appropriateness. The physician will write an order for this. You, as the POA, have the right to request and to have hospice assessment done . The "social worker" needs to be bypassed . Hospice evaluation order comes from physician and should be honored upon POA request. Then, you will hear from hospice if " you're there yet". My bet is hospice will say " yes" and you can go from there based on what the hospice RN evaluation shows.
Peace.
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Cdriver Oct 26, 2022
Thank you. I was always under the assumption the dr had to bring it up, didn't realize I could, and now with him in a SNF I was under the assumption they had to. So thank you and thanks to everyone who clarified that for me. I will def be looking into that next week.

Thankfully, once off then2 psych meds, my dad is a little better. There is still periods of confusion, and that may be the new normal, but he is calm, in good spirits and is acting more like my dad again. I think the UTI plus 2 pysch meds caused him to get aggressive and just out of his mind.
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You should ask your neurologist about the possibility of Lewy Body Dementia. It’s commonly associated with Parkinson’s. LBD might explain the hallucinations and the extreme and persistent reactions to common drugs.
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Cdriver Oct 26, 2022
Yes, I have read about that. I am having him evaluated by a geriatric psychiatrist soon and def asking about LBD.
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Cdriver: A urinary tract infection requires a complete urinalysis and not a simple dip stick test for dx. Some U.T.I.s are resistant to a few antibiotics and oftentimes a stronger antibiotic must be prescribed. Once the urinary tract infection is clear, the patient can begin a regimen of drinking pure cranberry juice (not a cranberry juice cocktail) and also a cranberry tablet. Extreme caution should be exercised in an elderly patient to make sure that the U.T.I. does NOT affect the kidneys, e.g. a kidney stone or worse CKD. After having two U.T.I.s, I did have a kidney stone develop two months later. A kidney stone in an elderly gentleman is quite serious and EXTREMELY painful. I hope that your father's delirium can be abated.
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Tinaejs Oct 28, 2022
My father just had a kidney stone removed. It was lodged and not moving or causing any pain. Just want to clarify that if they aren't "on the move" they may be in the kidney forever without issue.
He had his removed because it could have been 1 of 2 things (the other was a bladder stone) causing UTI's and the Urologist gave him the option of removal out of an abundance of caution.
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A couple of UTI things:

1) Some UTI can be resistant to some antibiotics. That is why the doctor sends the sample away for a culture. It happened to me once years ago, and I had to go back for a different antibiotic script. I raised it recently, and the doctor printed out a list of the antibiotics for UTIs. I looked them up on the net, and the most common one was also the one with the most resistance. So yes, I would check up on the antibiotic for your father’s actual UTI. The doctor should know already, and if not, follow it up.

2) The net says that UTIs are most common in women, because of the plumbing locations down below, but they are actually more difficult to counter in older men.

I hope that it can be sorted out. Best wishes, Margaret
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You need an advocate Elder Law or odomen to speak up . You can call Area for Aging Agency for this assist
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Dehydration causes UTI's and delirium.
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You and your dad have really been through some emotionally-rough waters lately! I hope you two are able to find a way that works for you both. Have you heard that the gut biome is tied directly to the brain? Or that antibiotics can kill off the gut's biome? Your dad may have been on antibiotics after surgery, which may have resulted in reduced numbers of good bacteria throughout his body, but especially his gut and bladder. Perhaps you could research probiotics to take after a round of antibiotics, as well as probiotics for urinary health. Get some good, quality ones (i.e., not from a drug store or WalMart. Try a nutritional supplement store near you so you can discuss the matter with someone who works there, or, online, try Dr. Berg or Dr. Mercola.) Here's a web md link on the connection between gut and brain health: https://www.webmd.com/digestive-disorders/what-to-know-about-gut-brain-link
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I’m just going to throw this out there. I absolutely agree with all of the advice about the UTI’s. But Parkinson’s Dementia with Delusions is a valid thing too. My Papa would be completely fine 28 days out of 30, but those other 2 days? One day he thought a lady at the SNF was my Mom, no convincing him otherwise - her relatives were beyond upset! A week later, he tried an imaginary key in every patient’s door in the SNF, trying to leave! It took him 2 full days, scooting along in his wheelchair, before he crashed and slept finally.
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I too spend hours reading updates, going over his meds, for my dad when he's in the hospital - SNF cycle. I spend even more time in a rage that sooooo many people - who are paid healthcare workers employed by companies with bloated profits - can't do a simple Google search to discover what so many of us know - you don't give PD patients Ativan. Shame on them and props to you for being such a dedicated, caring, loving person. My main concern with your post isn't your dad. This is an awful, horrible way for him to have to "live." My main concern is what you're doing every day to take make sure you still have a good quality of life. Do you make time every day (more than once per day) to do the things that make your life joyful? It's a fine line. I used to tell myself, "Well...I'll put off my needs because my dad won't be alive forever." And guess what? He's been going on this way, with little quality of life, for years and years and years.
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Cdriver Oct 26, 2022
Thank you for this msg. It made me tear up because no one rarely asks about me! I am exhausted after all this, and yes, I have made a conscious decision to not visit daily anymore and I take breaks. In my own life, I still have my teen at home finishing last 2 yrs of HS so I need to be ok for her. My husband is good about doing little things for me to help when I am super stressed so I am doing ok. I have my moments, as we all do, of feeling overwhelmed and just wanting to not do this anymore, but we soldier on as we must. We are taking a little vacation over Thanksgiving that should help. Thankfully since posting this, my dad has improved some, still confused but calm and happy, no more crazy agitation because I had them remove all pysch meds and have instructed no more for him unless things get very bad then I need to be notified before he gets anything. So far, so good. He's actually made 2 friends and when not at meals or chatting with them there, he's resting. So right now, I am grateful for that even though he still has quite a lot of confusion still but it's kinda like his baseline before all this.
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I agree with lealonnie, did they do a culture? If not they should to find the correct antibiotic. UTIs are very serious in men.

When My Mom was in the hospital for a UTI, they gave her a broad spectrum antibiotic that had penicillin in it. Her admittance records showed she was allergic to penicillin. Dad could be allergic to some. Even a sensitivity will cause problems.

There are antibiotics that rupture tendons. Seems Cipro is one of them. My friend was on Levaquin and now needs a boot to walk. Tendons cannot be repaired. Below is the pharmaceutical name of the antibiotic and the Brand names associated with it.

"Fluoroquinolones: Cipro, Levaquin & Avelox. Fluoroquinolones such as Cipro, Levaquin and Avelox are antibiotics approved to treat or prevent serious bacterial infections, including skin, bone and joint, lower respiratory tract and urinary tract infections. They work by killing or stopping the growth of certain bacteria ..."
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Taking the D-Mannose/Cranberry supplement is a good idea, but it is only a starting point. Check to see if he is drinking sugary, acidic, or carbonated drinks (including orange juice, coffee, and carbonated beverages like CocaCola) and eating other very sugary, spicy, or acidic (tomatoes!) foods as part of his meals. Those are directly counteracting the D-Mannose and may be contributing to his recurrent UTI episodes. Basically, any drink or food that can irritate the bladder should be avoided until this is straightened out.
Tell the staff to keep those sugar beverages away from him and see how he does if he starts drinking plain water instead. The more water, the better usually, unless his urologist feels that it should be restricted since your dad also has kidney disease.
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I feel your pain I’m going through this with my elderly aunt who is single I’m her oldest niece. On top of all the allergies that she has to anabiotic‘s including Cipro and sulfa drugs; we also have problems with her dehydration being constant there’s no way to really monitor it because I don’t live with her she’s in assisted-living. I’ve asked Activities Director and some of the other people to put a drink in front of her several times a day. If you ask her she won’t want one, but if you put it in front of her, she should drink it. She doesn’t like water anymore so we’ve had to get flavored water like propel or lemonade without too much sugar. We also have trouble with her eating fast and not chewing well so the speech therapist is working with her on that. I find the therapists are more attentive to the actual patient then the doctors or in our case a PA. PA in our place took her off all supplements she’s been on for 10 years and she’s had more UTIs , than ever. I’m going to take her to an outside integrative doctor and hope that they’ll listen and help get the supplements put back together. I find that overall busy nursing and med techs do not like to give lots of supplements, so they try to get the doctors to prescribe less because it’s a hassle for them every morning and every night. I agree that you shouldn’t give supplements without consulting a specialist If there are other issues like kidneys or heart. However I find that vitamin C, Cran tabs, B12, D3/K2 and calcium magnesium really help because they don’t get nutrition in their food, if they even eat enough food. Most food there is bland, starchy and greasy.
Some assisted living formularies don’t include many supplements just drugs. So you have to get outside doctor to prescribe a script for each supplement. Finally I would say anything you find that does not work well, then put on their allergy list so if they go to the ER or the hospital they don’t get those, (my aunt can’t have any muscle relaxants or her BP drops very low and she goes into a zombie state for 5-6 min. ) or Cipro, etc. otherwise their reactions to those cause more drugs to be given and it just spirals out of control. Bless you for advocating! It can be a full time job!
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Too much supplimental vitamin C can cause urinary urgency. My mother (no UTI) was taking a 500mg capsule & felt like she had a pee every 10 minutes. Stopped taking it 5 days ago. Frequent urge to pee is gone.
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JoAnn29 Oct 25, 2022
Thats interesting
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My mom started in with constant UTIs after breaking hip last Dec. The rehab hardly ever gave her liquids, then back at ALF, continued UTI all with increased delirium. After a big fall in June, the visiting physicians suggested hospice explaining it was for increased needs especially with dementia. Since being on hospice mom has had no UTIs. They visit 2 x per week plus aid visits as well as social worker and rarely, a volunteer. All are supposed to call me with updates. They generally call with updates in meds as well. Even the visiting phys. svc would call about med changes. We went round a couple times about Ativan which is contraindicated for dementia. It makes her agitated.
Upshot is yes, you should call some hospice agencies and they will do eval. After that last fall it would have been a reasonable next step. I credit them with finally getting her meds balanced. And the ALF should be calling you with med changes anyway. Good luck but I think you will be pleased with hospice. It certainly took a lot of stress out of our lives.
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You should also include Vitamin C(1000 mg/day) as a supplement which decreases the acidity of the urine( UTIs thrive in acidic urine) AND methanamine which prevents reoccurring UTIs in individuals. My wife had multiple UTIs over the last 3 years and the D Mannose, cranberry tabs, Vit C and methanamine has helped her tremendously.
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Deb555 Oct 25, 2022
No supplements should be given unless cleared by his doctor. The kidney disease and heart disease are sensitive to supplements. Supplements are not safe for everyone even though they are sold without a prescription. They can interact with medications. (High doses of vitamin C for instance can actually cause kidney stones in some people.)
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Was dad's urine cultured to find out what specific bacteria was growing to know for sure THIS antibiotic is the right one? If not, it's just a guessing game which can keep the poor man on a roller coaster until the proper med is prescribed. My mother always had THE worst side effects from all meds she was prescribed and dad was a close second. Neither one of them had ever taken meds before, so in their old age when suddenly they had to, their bodies strongly protested. I had a heckuva time with mom especially and trying to find meds to keep her moods leveled out and her pain controlled but not give her horrible side effects. Ativan worked for agitation and Wellbutrin for depression. Everything else made her dementia 1000% worse and caused unbelievable chaos!

Flexeril makes ME loopy as heck, so I can't imagine what it would do to an elderly man.

Some antibiotic has to be found to cure your dad of this UTI and keep him normalized. Even hospice will want to treat his UTI. And it's true that the social worker has no say in whether a hospice evaluation is in order.....that falls to dad's PCP. I suggest you get the PCP to write an order for one asap.

I hope you can get dad stabilized and to stop with the delirium which is awful. Sending you a hug and a prayer for a resolution to this madness.
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Reply to lealonnie1
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Your poor dad, and YOU, have been going through a lot. He is very lucky that you are paying close attention, are knowledgeable, and are such a strong advocate for him.

Sometimes, changes in cognition can come on quickly. It could be med related, or his PD or just time. He does certainly appear to have had further decline so I would agree that a hospice eval is appropriate. Don't even ask the social worker. Ask the doctor or call a hospice organization to check him out.

It's so sad when their quality of life is so low as to be nonexistent.

Best of luck.
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You don't need the social worker's permission to consult a hospice agency, the agency's own staff will evaluate him to determine eligibility. And it might be wise to consult more than one agency to find the one that fits your needs and values.
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