Caregiver (new) who recently found out mom has dementia and sundowner's syndrome. Advice?

Have you talked to her doctors?

I would start by getting her checked to make sure she doesn't have a UTI. If that is negative and this is her new "normal" she needs to be seen by a geriatric psychiatrist for meds to decrease her agitation.

Hi Kadey
So sorry your mom has been hit so hard by the UTI. Those infections can come back and as you know can be lethal. There is a product called D-Mannose that some believe to truly protect them from reoccurring infections.
Have your mom tested again with a culture. And also try to get her meds. for anxiety as has been suggested.
Teepa Snow has videos online that are helpful with how to speak with a person with dementia. There is a book called “The 36 Hour Day” that is recommended for caregivers.
Call her doctor today and let us know how you are doing. We care.

Kadybee;
I don't find where you have mentioned what kind of dementia your mom has. My wife is 61 with Advanced Vascular dementia, diagnosed last fall(2020). As the neuro explained it to me, with vascular dementia, patients don't descend on a slow arc but drop like stairs with each "insult" to the body, such as a UTI, pneumonia, TIAs, and other illnesses that are hard on that individuals body. After recovery from each "insult" the individual is at their new normal where as with other types of dementia, the person slowly drops in a long arc that is not noticeable but you begin to see changes over long periods of time.

This has proved accurate with my wife as she has has 4 or 5 major UTIs since her diagnosis, each was a EBSL (extended spectrum beta-lactamase) an E. coli that is resistant to many antibiotics. While the infection was active, she mental status was terrible. Some days not even know who I was or even who I was to her. As the bacteria was being brought under control, her mental faculties improved but not to the point she was at before the incident.

Her short term memory is terrible. She can't remember the names of the aides who come on a daily basis. She has a hard time completing a sentence. She will call me to come to her from another room and by the time I get there, usually within 20 seconds, she has forgotten what she wanted me for.

I agree that your mom may indeed need to be tested for another UTI and if that is negative then a full neuro check-up by either a neurologist or a neuro-psychiatrist

Note: I am not implying that UTI's cause dementia. UTI's can make current dementia worse. Also this info is based on what my wife's neuro has told me in the most simplest of terms.
My wife has had at least 5 strokes over the past 20 years, 4 of them caused by endocarditis and one from a bleed. She was active and able to care for herself, help cook, clean laundry and other household chores until her last stroke in November 2017. She has declined since then . She has been on hospice once for about 11 months but has not been back under their care since the summer of 2019, although after each hospitalization the case manager and hospitalist HIGHLY recommend that she go back on hospice. Due to a bad experience while on hospice before, I decline each time.

I'm so sorry this has happened, I agree have her checked for another UTI. If she's free of UTI have her DR refer her to geriatric pych or a neurologist experienced in dementia and have her seen. If this is her new normal she should be given meds to help calm her. Make sure the DR knows she is having visual and auditory hallucinations. Yes they can get combative caused by their malfunction of their brain. Fear doesn't help - it makes them mistrust even those closest to them. Try not to take it personally, it's not her it's the disease.

You will learn by trial and error how to handle your mother, but its going to be a rollercoaster. You can't argue with her because she can't see what you know is true and it will only agitate her and make her more fearful. What she sees or feels is what is now in her world. You're going to have to take a trip to her alternative world. When she sees someone ask her if she knows who it is? and go from there.

My father would occasionally have delusions (most of them concerned money). He was now living in SNF. One time I got there and he was agitated because he owed some woman $25 and he just couldn't let it go. I finally told him he didn't owe the money because I had already sent her the money. Another time the nurse called and he got on the phone because he needed $660 right then. Again he was all agitated - so much so the nurse actually called me for him. It was about 9PM so I told him I couldn't possibly get him the money then because banks were closed but I'd get the money first thing in the morning and bring it to him. Of course by morning he forgot about it.

As long as visiting her world and the answer doesn't cause her physical or mental harm go with her world and try and redirect her to another subject as soon as possible.

Prayers for you and your mother. Good luck.

Well since you have caregiving experience I would say if possible try your best to take care of her, or you could look at moving her in to a memory care facility. Given her age and her condition personally if financially possible I would put her in a memory care facility where the people taking care of her would be trained on how to help her feel comfortable and safe, along with feeding her 3 meals a day, bathing her, etc. Basically giving her all the needs she needs that unfortunately a lot of elderly people don't get. If it is easier for you and your family though keeping her at home is definitely helpful for her health. It'll help her still feel like she has purpose and independence being in her own home. I have a grandfather who isn't quite as old but he's starting to have cognitive declines and being in his own home is very helpful. He's not super far along yet but he is definitely starting to struggle but having more independence seems to be helping. Many facilities do a good job at promoting independence though. For instance the facility I work at is fairly small, only housing 15 residents max, so it's more like having a house with roommates than loving in a traditional facility. But don't feel guilty if you do decide to move her in to a home. It's a part of life that we'll all eventually face assuming we live that long. And most facilities now a days are really good, and promote independent living, give them a safe place with plenty of food, personal space, but also an area with other people so they can still socialize and get that sense of community. Just look around for a facility that you like, a place you would be ok living there if you had to, and that'll help you feel more comfortable as well as put your mom at ease. But again if you feel like you can give your mother good care I say go for it, but don't feel bad if she is struggling. It is SUPER hard to see our loved ones decline, but I deal with decline by just knowing I'm helping give comfort to both my residents and family members who have had dementia. Giving them comfort near the end of their lives helps me feel much better, just knowing I helped them feel good and loved near the end. Hope this helps and good luck!

It is possible that she will come back to reality. UTI with sepsis is serious. Just a UTI that doesn't go that far has serious side effects on a senior. Most commonly? Appearing to have dementia - acting totally different than before the infection. Accusations, seeing people who aren't there, can't remember things, hard to find correct words to communicate.

If you haven't done so, have her checked for UTI again. Just because she was treated and released from hospital doesn't mean they really cleared it up entirely. UTI can be a chronic problem once it starts in the elderly. Also, if you can get her up and moving around more, you may see improvement with her mind. When a body slows down (and hospitalization) all the working parts of the body slow down. Gut slows creating constipation issues, etc. If you have in-home nursing care (ordered by dr along w/some therapy), the nurse can get dr to order a urine test to check it out.

Same thing happened to my Dad and he went from being ok to dementia seemed like within a week.

Anoway, he has to have a Cathiter and as with Cathiters, even tho they have to be changed every 30 days, ou are prone to get UTI's.

If we don't catch his UTI's right when they start, he literally gets Crazy! He starts seeing things, that aren't there, Big time hallucinations.
He becomes Big Time Paranoid.
He thinks everyone is trying to Poison him.

He wants you to call the Police, ambulance, ect to get him to a Hospital when even under normal dementia he would Never want to go to the Hospital.

When a urine sample is taken, if they don't run a Culture on it, your mom could be given antibiotics that aren't the right ones fir the type if bacteria infection she has, that happened with my Dad.

Berase the Home Health was just doing the urine analysis and not the culture too.
So my Dad would just get a little better but not cured then after a couple months when they finally did the culture with the urine analysis, they found that the antibiotics he had been taking won't work on the type of infection he had so after taking the right antibiotic for 7 days, everything was back to his dementia normal.

Prayers

Best product I've ever used is Uqora it is a 3 part natural medicine. My mom was having back to back to back to back UTIs and she was awful and I know it made her tired. But starting on that regime was the best it has high potent d-mannose which her body can break down well and use. I added also CBD gummies and organic coconut oil to diet.

This will get worse and worse and worse and YOU will be the one to suffer the most as a result. You can't fix it. When you realize how it is negatively impacting YOU and caretakers won't put up with it any longer, then you know it is time to place her in a facility. Sad but true. At this point, YOU come first - you have a life to live.

Ps - in January when mom went in for a UTI the hospital sent her back hone with 2 very different bacteria’s in her urine than she went in with.
Most of the time you cannot retest for a week after as it won’t show up as the urine is still sterile from the first treatment