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.

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.
Helpful Answer (9)
Reply to cwillie

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

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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Reply to BeckyT

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.
Helpful Answer (3)
Reply to againx100

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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Reply to Tunfet
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.
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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Reply to Karenina

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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Reply to SpratChat

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:
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Reply to Kailyn

Dehydration causes UTI's and delirium.
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Reply to southiebella

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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Reply to MargaretMcKen

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