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

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

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She was fine, has a great memory at 94 then got a UTI, it turned sepsis and she nearly died. I moved in with her and kept waiting for 2 months and her mind is worse. She gets extremely nervous, agitated, even angry and even throws objects, sees people that aren't there, is afraid, etc... it gets worse from 4-early the next morning. She has never done this. She even distrusts ME, her daughter and thinks I lie to her all day, and thinks we are being held hostage by "THEM". I need advice.

Alzheimer's & Dementia New to Caregiving Sundowner's Syndrome

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PS: Dad is in a nice memory care facility and it has really helped me stay "daughter" instead of caregiver. I can go and visit and leave. I still micromanage everything and it takes a good amount of time. I still try to anticipate his every need and bring him things that will bring joy to him. I can't imagine having to do all the care at home, although a few months ago he was here and I cared for him just fine. He is not the same guy and this recent change . Get some help and use the respite care to look around so that when you are ready, you know where he might go next. All memory cares are not the same. Pick one you won't mind visiting.

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It sounds like she (and you) need some new medication to calm her and/or keep her asleep at night. You may need a "sitter" at night. You need to realize you cannot do this by yourself. You need to get help in order that you will have the health to see this through. Often the caregiver gets very sick and then, what good are you to her?

Does she have other health issues as well? I would give a hospice a call and just have them come evaluate her and explain what they can and cannot do for her. If they accept her just with the diagnosis of dementia then you can still get other specialized care for other diagnosis and future issues. In the meantime, they will help with adjusting her meds, getting a sitter if needed and with other care needs (showers etc). And just because she is on hospice doesn't mean she can't get better and get off hospice. I have found them to be very helpful although I still have to advocate for my dad to get the most out of their services.

I'm so sorry. It's very hard to watch someone go downhill quickly like this. But at this age (dad is 93), I know it can happen that way. In March he was walking 1/4 mile. By May, he's bedridden and only coherent 1/2 the time. For him it was like falling off a cliff versus stair steps. Sounds like the same for your mom.

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I bought TEST STRIPS from AMAZON that have instructions and prevents having to collect and test urine through a LAB or UROLOGIST. I test my Aunt every week and the test strips work well to also check pH, glucose, protein in urine, etc... in addition to Leukocytes and Blood in Urine. I call the MD and get an antibiotic if Leukocytes high but if the UTI does not resolve from retesting about 4 days after completing the antibiotics, then off to the Urologist for a Clean Catch Urine to find the pathogen. My Aunt with dementia cannot urinate on command. The TEST STRIPS have saved my life. I still have the option of medical and testing the urine for pathogen and treatment if the first treatment does not work. For behavior following her 2 sepsis hospitalizations, I just keep her well hydrated and test weekly. I also swear by Metamucil daily in between lunch and dinner to keep fiber and bowels regular. As long as my Aunt is without UTI, she is wonderful.

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Sun-downing is the most dreaded part of my day. It’s when mom changes—mean, crying, angry. You cannot calm or control her during this time. I give her lots of lorazepam so that she’s slowed down. It helps only a little bit. I’ve tried sun lamps, music therapy, baby dolls, CBD oil, fidget blankets, etc., but nothing solves sun-downloading. I just have to take each day at a time. The sundowning time always shows up.

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This will sound harsh but --- Your mother will never really "get better". The Sundowning can be helped with Sun Lamps. It will never really go away. As the dementia (and that is what is actually going on) progresses she will forget many more things.

This is exactly what happened to Mom. She was also in her 90's. It was so difficult to both deal with and understand. The first thing I did was to do some research on both dementia and sundowning. Then I had to get her doctors involved. Has she ever been evaluated for dementia or memory issues? When was her last full physical/check up. Why/ how did the UTI develop.? These are answers you need to discuss with her doctor. A really Serious UTI also put Mom in the Hospital and then Rehab for Antibotics and strengtening work, but her mind never really recovered, and it became a issue of keeping track of the possible UTI's.

I found with Mom that the Sundowning was at it's worst in late afternoon and evening. That is when she would usually see things that weren't there. Or because her eyesight was getting worse what she did see she would be something other that what was actually there.

Her reactions are somewhat normal. She is both confused and most likely frightened by what is happening. I found with Mom that when she was trying to point out the things she was seeing, I would answer her with "Yes, I can see how that looks, but I am not sure that is what is actually there". What she heard was "you are Okay and what you see, it is OK". It worked wonders to defuse anger.

I'd start with a frank discussion during a checkup with her doctor about all these issues. Then follow through with what the doctor thinks should be done. Mom may not be exactly thrilled, but if it helps her in the long term both of you may get some relief.

Another thing to be aware of is her POA(P:ower of Attorney) and Medical POA (Medical Power of Attorney). Does she have either. If not I'd be looking into it right away - before she gets any worse. The other piece that becomes important is the DNR (Do Not Recesitate). This will be necessary while taking care of her.

Being a caretaker is a tough job. We want to "FIX" when what we really need to do is make some alterations and new ways of doing. And in the process don't forget that you also need to take care of yourself. Don't give up doing things that make YOU happy and feel good.

God Bless and Good Luck.

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Kadybee: Imho, your mother almost passed away from sepsis so that, in and of itself, is going to take a while to recover from.

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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.

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I've been there. My mom had Alzheimer's, and she too, distrusted me, her only child. I was once trusted and confided in. Once Alzheimer's hit, she'd accuse my husband of going through her purse. She had $5 in there and a lipstick; let him knock himself out. My mom also became paranoid. I even wrote a book about taking care of her called, "My Mother has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." I include chapters such as, "Steel Yourself for Stealing, " Paranoia Can Annoy Ya," and "Lia, liar, Pants in Dryer."
I'd check with the Alzheimer's Association, www.alz.org, to see if they have any suggestions. Good luck.

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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

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The Delirium does take time to clear after UTI and antibiotic side effects but not this long.
I would suspect she still has an infection. I now have a new sample done a week after the last antibiotic dose as some are harder to treat and take a different medication.
Also try getting some of the at home testing strips (at any cvs or Walmart) for times like this over a weekend and you can test it on your own and then call the doctor to have them collect a sample to send out.
The above behaviors can fall into so many categories but this is exactly what my mother exhibits with a UTI. Best wishes

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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.

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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.

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I have been looking at starting my mom on this. Do you use just the UTI one called target? Please lmk I would greatly appreciate it! Thanks

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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.

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Excellent info, thank you for sharing

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Please have her evaluated by her doctor. Sepsis usually does not lead to dementia. She has something else going on: return of UTI, blood chemistry imbalance (maybe kidneys are slightly damaged after UTI), problem oxygenating, small stroke... Treatment will depend on the problem.

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Do you have POA? If not it may be too late to get it. You may have to go to guardianship. You may be looking at a need for placement. Sepsis is awful (my brother died of sepsis almost exactly one year ago) and it involved near universal systems failure. It isn't unusual to come out of this battle with severe deterioration of the mind. It seems that your Mom may need to have some medication help. That will require you monitoring as her POA, and will involve likely some experimentation as to finding what medications WORK without making Mom into a someone whose mind is numbed beyond being able to act.
Please consider placement. I doubt this will get better for you.

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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

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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!

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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.

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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.

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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.

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

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