How do you deal with crazy phone calls from someone with Sundowner's? It's tearing me apart!

I think that the first way to deal with what MAY BE permanent impairment of this type is that the access to phone is removed, and medication to calm is sought. That means this is both a problem you can handle yourself by speaking to her long term care facility and a problem that you need to be certain is addressed with her doctor.

The fact that this UTI is being treated inadequately is allowing that only the weak bacteria get killed off each time, with the stronger ones remaining, making it more and more difficult to cure. She may need prophylactic antibiotic, a good one such as cipro. MDs no longer like to treat using it as it has complications, but the complications of her UTI, IF that is what this is, are life changing and severe enough to make this a life not worth living for her. If there's incontinence or inadequate cleansing (and even without those problems) this may be an ongoing problem.

Meanwhile, this is a problem for Medical treatment AND a problem that you need the LTC facility to understand must be addressed with removal of the phone past a certain hour. There is also, sadly going to come a time when you may need to turn off your own phone, and turn it on every few hours to collect messages.

There is also Telecalm at 888 701 0411 and telecalmprotects.com. Has certain phones that are scam and spam blocking, and stops multiple outgoing numbers repeated over a short time with family of facility notifications of any 9ll calls. It can also work on corded phone without internet access, so you may want to check this company out. It has been mentioned on AC in the past and I made note of it to pass on. I have no personal history of using it.

Good luck, and I am sorry you're going through this.

My mother was doing the same type of thing shortly before she passed, but w/o having a UTI. She was obsessed with her deceased parents and riding the NYC subway to see them (we live in Colorado). It was awful. Her agitation level was thru the roof, so I asked her PCP for Ativan which did help, thank God. Then I got her evaluated for hospice, and she was approved under the Medicare reason of Senile Degeneration of the Brain. This was in Nov of 2021. She passed in Feb of 2022.


When my father kept getting back to back UTIs, he was at end of life and I got him on hospice too.

I don't know that your mom is approaching end of life herself, but it may be a good idea to get her evaluated for hospice to see what they think. It seems to me when an elder starts talking about seeing their deceased loved ones a lot, they themselves are getting ready to transition.

It's very difficult to get these calls and to stay composed, I know.....its very unsettling. This whole journey is so fraught with worry and uncertainty, it's mind boggling. I pray for inner peace for YOU, my friend, knowing that you're doing everything humanly possible for your mom right now. Be kind to yourself.

I would say she needs to be taken to the hospital and a culture done to find out what bacteria is causing the UTI. Then she needs IV antibiotics. This cannot be done at the facility. Then, she needs to be taking something to keep it from recurring. My Mom was on cranberry tablets and a probiotic. Mom could become septic.

LTC facilities are limited in their care.

You can ask the nurses to not allow her to call you, or better yet, just don't answer your phone. I'm sure her facility will contact you if there is a real problem.
There are medications for sundowning, so I would most certainly talk to her doctor about putting her on some of them.
And definitely stay on top of her UTI's as they can turn septic if not treated properly.
And I'll say it again....dementia sucks!

Tell the nurses not to let her call you every day after dinner. Limit the phone calls to a couple evenings a week.

I did homecare for many, many seniors with dementia over 25 years in the caregiving field. Some of them were completely invalid, bedbound, incontinent clients in diapers 24/7 and they had less problems with UTI's than your mother does. Your mother needs more hygiene care done more often than it's being done now. The best way to treat a UTI is to prevent one.

It's a given that any LTC facility no matter how high-end or expensive is going to cut corners on CNA staff and the patients are going to suffer for it.

Would it be possible to hire a part-time caregiver for your mother? Someone who will go to the facility a couple times a day to make sure she's clean and dry? Even just once a day will help in addition to the CNA toileting/diapering schedule at the facility. It's terrible that families often have to hire private help for a loved one in a fully-staffed LTC facility, but it's reality so much of the time.

It took a number of years but I learned UTI's can be caused as a side effect of some prescription drugs. Is she on Memantine? Or C-Memantine? This can cause the urinary tract issues and cause the user to hold urine and get a UTI. We stopped the C-Memantine and then had zero UTI's after that.

Don’t answer! It’s okay not to be available.

Maybe just don’t answer the calls from that person . If they have memory issues they won’t remember you not answering the calls anyways .. I mean not to be rude or not compassionate but truly they won’t

Wondering if this LTC is not competent about UTIs or if you are not clear what’s happening. UTIs are normally diagnosed very quickly on the spot to see if the dipstick turns red, and if so the most common antibiotic is given immediately. However there are several UTIs, so my doctor has always sent the sample off to the lab to be checked, even if I am taking his antibiotic. Twice I have been called back because it wasn’t the common one, and I needed to take a different antibiotic.

Can you compare this with what is happening for your M?

Recently my DF sister was having problems with a UTI. Went to see her primary, culture ran, on meds, didn’t resolve, repeated it. Still having problems. DF called her sis to check on her, sis said she was in bed for three days. Sounded out of it. Said she didn’t know what to do. DF called 911 for her sis. She lives in a different state.
Another relative met sis there. Sis told the nurse that she had been bleeding 3 months. The nurse didn’t believe her. Blood work done. She was admitted in ICU and given 6 pints of blood over 6 days. Diagnosed with bladder cancer. In rehab now and has to get stronger before options can be considered for treatment.

Everything isn’t dementia and sometimes a UTI is more than a UTI.

Sorry you and mom are going through this.

When mother got really bad from dementia I stopped taking calls and let them go to voice mail. They were very upsetting and there was nothing to be gained by me taking the calls and there was something to be gained by me not taking them - better peace of mind for me. Later I did listen to the voice mails to see if there were any real issues, but, honestly, that wasn't necessary as the staff were very good at letting me know about any problems.


I hope the UTIs get sorted out. Sounds like they need to check which antibiotics will work on that bug,

Does she get Cranberry pills or D-Manoose to help prevent the UTI's? I believe the cranberry pills can be prescribed.

It’s worth repeating that UTIs are INFECTIONS, and they come from feces. This happens when people sit in unchanged diapers, or when they wipe back to front so that feces on the wipe gets to the vaginal opening.

Cranberry helps to keep urine acidic, which makes a UTI less likely to take hold, but it is a minor improvement. If UTIs are recurrent, by far the important thing is to check how the infection from feces is getting from back to front, from the anus to the vagina.

Remove your mom's phone. Tell the administrator that you are no longer having phone service for your mom. The PC will call you if there is an emergency. No more calls = no more stress.
I know this sounds cold, but your mom will get over it.
I took my mom's phone privileges away because she kept calling me all day and night. Dementia and UTI is a rough combination. Lexapro has calmed my mom down too.

Responding to your reply to me.

My Mom had Dementia and had a bad UTI. Antibiotics by mouth are not enough. Its usually a broad spectrum antibiotic. A culture will show what bacteria is causing the continuing UTI and the correct antibiotic will be given. IV is the best way to get rid of the infection. Don't tuink that can be done in LTC.

My mother is still at home with me. She has lived with me for years before the dementia as she is a widow. I disconnected her personal phone line when she started getting delusional. One time she thought I was “playing tricks on her” and caught her just in time before she called the police. Do an internet search on what can happen. It’s not pretty. I’m surprised the facility allows access to phones.

We have been on several medications to calm my Mother, she sundowns and can be out of control screening and such when she doesn’t get what she wants , a new car, cell phone, thinks someone has stolen things from 40 years ago. I completely agree it can ware you down. Recently she was switched to Ambilify it is a sister drug to Rexcility (spelling isn’t correct) , so it is 20.00 for a 30 day supply as opposed to 500.00 for th Rexcality. I still get unusual calls but far more calmer and less frequent.

It sounds like she (who is this person ?) is having hallucinations.
From the little you've indicated, it sounds like she needs to be in a facility to receive 24/7 care. ... If she is in a facility, clearly tell the staff not to allow her access to the phone - as you deem necessary.

The other alternative is to tell her you got your phone # changed and when she calls it, it doesn't work - tell her you are working on it. She may not understand although she can perhaps go through the motions of 'calling' - she may not even know who she's calling or understand the message when she does call. In any case, if she understands - tell her that "I will call you in the evenings" - and change the subject.

She will not have the cognitive ability to manage calling you in reasonable hours/amounts. She is lonely / alone / scared / exhibiting dementia.

* See if you can find volunteers to visit her in the events - or when this behavior occurs.

* Yes, it will wear you down and you need to put new procedures in place to adjust as needed. "Might have to tell the nurses not to let her call me ..." is a given. The question is: Why are you not doing this now? what is keeping you from making needed arrangements? Guilt ? you need to deal with how you are feeling although you first need to identify how you feel.

Dementia is never easy to manage. However, YOU need to take care of yourself. Otherwise, you will burn out and not be there at all for this person.

Gena / Touch Matters

againx100: A rare side effect of Macrobid is pneumonia. I was hospitalized with bilateral pneumonia three years ago as a result of having been given it. I changed urologists once recovered.

Very simple. Block her every day from 4pm or whatever time it starts. Her calls will go to your voicemail. You an unblock her in the morning and during the day until it starts again. This way you don't have to ask staff to do anything, which surely they won't do consistently anyway.

Here's the deal with infections and antibiotics. When somebody has an infection - any kind - the provider writes a prescription for the usually most effective antibiotic for whatever specific infection is detected. This is not specific to the infective organism because it takes at least 3 days to grow specimens in a lab and test for sensitivity to individual antibiotics. If the usually effective antibiotic doesn't work, then the provider will switch to another antibiotic in hopes it will cure the infection. Astute providers will ask for not only a check for a UTI but also for culture and sensitivity - so will know in about 3-4 days which antibiotics will actually work well. Why prescribe something that might not work? Because, the person is obviously suffering from an infection and usually the "most often prescribed medication" usually works.

Seems your mom may have a difficult to kill strain of E. Coli, a common GI tract organism. If the urine was tested for sensitivity and culture, she is probably getting the right antibiotic. If one was not ordered, ask her doctor for one in 7 days if her symptoms do not clear.

Her confusion is a result of the toxins released by the infection into the bloodstream. It takes time for the body to fight the infection, deal with the toxins, and recover. Since older bodies do not work as effectively younger bodies, it may take a little longer for her mentation to clear. She should go back to the same level of thinking she had prior to her infection.

You disconnect her phone, so she can't call the police on you, or similar behaviors they do from dementia.
You have already suffered enough, haven't you?

It’s called caller id

Talk to the community about palliative or hospice. This might come as a shock or relief to you, but chronic UTI's, anxiety,agitation, increased sundowning might mean stage 7 of dementia now entered. Now it becomes the next fall, incident, high risk behavior, infection, UTI that will cause the end, or she might stop speaking, stop swallowing, bed sore causing sepsis, etc, not holding her head up or getting out of bed. Dementia stages may drag out for even decades. Just like 2 babies never have the same cry or smile, never seen 2 of these cases end exactly the same. I don't mean to alarm you but anyone may self refer to hospice, and most states allow next of kin to sign for medical choices if the person disoriented to person place or time. I work in hospice eldercare about a 1/3 or more of our cases involve the later stages of dementia to qualify, and all of these symptoms of late stage would get dealt with by the hospice team. You might get a bunch of bossy opine from clinical hospice about end of life care or their opine about care, but at end of day most of time family gets relieved to have those comforts brought in for dementia as it just goes on for so long, and so difficult for family who has to deal with the slow painful loss of their loved one, and she already spends her time in the best possible place, her current home. Hospice a DAILY benefit, as long as the person declines they may continue for an unlimited number of days or graduate if they get better, and could always shop another hospice, but would it not give some relief to have a hospice nurse or doctor team deal with some of this? I have seen people go on and off hospice for 3 or 4 years or more in late stage dementia as like I said before no 2 births should ever look alike, same thing with end of life. I have had to deal with this in my father who refuses all care. I had to wait for calls from authorities asking me to get involved as his sundowning so bad he would drive his car into things, or take bad falls, or get lost wandering, or yelling at someone on the street due to agitation, or might risk getting sepsis from incontinence.... But some people stubborn and tends to get worse in men who sometimes became addicted to making every decision. I will tell you as a hospice professional, I find it so much easier to deal with things as a professional where I may help more willing participants... I also go read and write anonymously on these sites to get perspective for both my work and my own parent. You might find this weird but I wish my Dad would call me directly every day to state his wishes or call me willingly to dump the sundowning upon me directly, and in the bizarrre way, ask that I help him with the sundowning. Instead I have no other choice but to "catch him in the ACT" of sundowning where every time the phone rings I don't know what he has done now, and he also has some spectacular showboating skills to, and nobody wants to deal with the angry, demented, incontinent man so he often gets passed back to me or homeless women try to exploit him. I constantly deal with authorities to try to help or protect him but have my boundaries as well, so I envy you that at least the situation seems more under control and she knows to trust you directly, and you both do the best to get your needs met. Mine I have to wait in fear for the MAJOR incident to happen where the authorities will tell him he has to appoint someone to act on his behalf as he does not willingly participate in his own care.

I let them go to voice mail then listened to them afterwards to see if there were any real issues. They were pretty crazy and it was hurtful listening to them but at the time I felt I should. Thinking back it may not have been necessary. If you can stop the calls happening, so much the better.