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It's now been 3 weeks since my mum was discharged from hospital & she's not showing signs of improving cognitively, if anything her memory seems to have taken a further tumble -even though she did have a fairly good day at the start of the week. My brother and I are at our wits end with worry that this could be rapidly progressing dememtia or something, but 3/4 weeks for her to decline this fast makes us think perhaps it could be persisting delirium meaning something is still not right with her physical health.
She had bloods taken last week and a urine dip test done which was clear, but I am going to push her doctors for another urine culture. We are so out of our minds with worry that I called the docs yesterday expressing our concerns that after 3 weeks she is still persistently confused and her cognition is shot, she can't carry out even the simplest of tasks like making a coffee or doing the dishes, and gets confused about the day and time. I noticed earlier that she'd gotten dressed and put two pairs of underwear on. The home visit doctor pressed her stomach and she did have some sensitivity and pain, but they've not followed up on this with us today, despite me chasing the issue with the surgery.
I keep thinking, how can my mum who was occasionally forgetful (forgivable for her age) but otherwise fine cognitively & independent prior to her UTI/kidney injury, already be at the stage where she is dependent on my brother and I for almost everything and cannot do even the simplest of tasks?
Has anyone had experience of this - is it normal for delirium to last this long or should we be pushing the doctors to do more tests to check if there is a persisting physical issue which could be exacerbating her confusion and memory issues? I just keep thinking, surely it can't be dementia, surely this is too fast even for RPD.
Sorry for the long message. I just don't know what to do or where to turn next- the doctors are telling us it may be weeks for an MRI and memory clinic referral but I'm scared there is something else going on which they're missing.
My brother and I have been taking turns to stay with Mum but we also both work full time from home, and I live 40 miles away so haven't been home to my husband much at all in the last few weeks. We are both already exhausted physically and mentally with the worry of it all and we don't know where to turn or what to do next. At the moment it just feels like a waiting game, but not having any support or idea of what we're dealing with is making things so much harder to cope with.
—on the one hand, it’s true that the more severe the UTI, the more it’s possible to have brain damage. UTI can spread to other organs (in particular dangerous: kidneys, liver, heart). if UTI gets worse, it can spread to other organs, and into the blood = blood poisoning = blood infection = sepsis. to avoid sepsis, every hour counts; the sooner it’s treated the better; the more likely the consequences are temporary/reversible, and not permanent. sepsis can damage the brain. small UTI can even go untreated and be OK = just drink more water both to prevent and cure small UTI. more serious UTI = needs antibiotics. signs of more serious UTI = mind strange, very tired body, sometimes fever (but not necessarily). sepsis = must be treated in hospital, asap.
—on the other hand, doctors won’t admit to you, that while your elderly LO is in hospital, it’s very likely they’re drugged a bit, so they’re quiet and don’t bother staff. these drugs affect the mind of the elderly = slow thinking, bad memory. hopefully it wears off with time. my LO was very lucky = after 3 weeks of being home, bounced back to a normal mind, every time.
doctors will never admit that the hospital stay is sometimes the cause of the mental decline (i’m not saying it’s always the cause) (sometimes it is) (in other words, sometimes the sudden mental decline after hospital has nothing to do with whatever illness your elderly LO went through). on the contrary, your LO was given drugs that cause/contribute (and the doctors know, but won’t openly admit it) to mental decline.
—conclusion:
if possible, avoid hospitals for your elderly LOs. but of course sometimes hospital is totally necessary.
does his phone have an app for your cable provider? I downloaded a remote app on my cell & I'm able to control the TV in another room. Lol
My mother, mid-90s, already diagnosed with dementia, was walking, talking, and could toilet herself. Then she was hospitalized for a stubborn UTI and dehydration. She (vaxxed) was also diagnosed as having (brief, very mild case) COVID-19, upon admission. They also found a minor heart issue. She was hospitalized for about 2 months. During the first half, she drove them nuts, talking endlessly, and trying to escape the hospital. After becoming angry with staff that asked her to do things (like OT, PT), she shut down, no longer talking, feeding herself nor moving. A dramatic decline. No other medical issues were detected. She was released from the hospital about 6 months ago and has been stable since. But she has never recovered her abilities.
My mother was incredible at show-timing, to the point that people, even some doctors, refused to believe she had dementia. Couldn’t tell you her address, date of birth, age, grandkids, day of the week, year, living status of her parents or siblings... but she could talk your ear off if she controlled the topics.
I find “being on” exhausting, physically and emotionally. Illness and show-timing may have depleted her energy to do other things.
I am sure there’s more to it than this, but I can’t help but wonder if what I witnessed was actually the end of her ability to show-time.
I told the nurse practitioner that i usually took another med and she said the one she was prescribing was better. (An er doc i saw sometime later for something else said hed never had a patient complain about it.)
two pills later … i couldnt walk straight and knew i really had a problem and called the replacement doc for my doc who was on thanksgiving vacation. (Things always seem to happen on weekends and holidays!) He prescribed my old med and when my husband brought it home i couldnt read the label.
i gave the bottle to my husband and asked him to read it to me since i knew there were words on the label but had no idea what they meant. After i took a few i was back to normal mentally and physically.
fortunately i could verbalize my problem and i was listened to.
im not saying at all that everyone would be the same. Im just advising to not be afraid of asking questions.
we live in stepwise world & simply aim to prolong each step.
My mother also was hospitalized twice for UTI and she also declined each time. After that, I found her a doctor who would make house calls, and have her treated at home. She declined at home too which I didn't think could be avoided but at least she was at home and comfortable, and not at the hospital where no one understood her because she could no longer communicate properly.
I am not a doctor but my mother never had UTI's than during the Pandemic they were back-to-back. Antibiotics refilled...I did a few things--white cotton underwear, a shot of Cranberry juice "every morning", I got rid of the booster seat on the toilet and replaced it with railings.
There have not been any recurring UTI's in (2) years. My mother does, however, have a Lewy Body Dementia diagnosis. An infection at her age (84) 115 lbs. on a good day can knock her out.
Plenty of water...I keep Gatorade and Pedialyte in at all times to prevent dehydration.
You have to move around and get off the recliner. Make sure that pads are not infecting Mom--some of the plastic can cause that.
What's left after a UTI has cleared (the question is, "has it cleared") did you finish the bottle of antibiotics--if you take them too often, then they don't work at all and some cannot be mixed with other medications.
What's left is called your mother's "baseline". This is after the dust settles.
I recommend your mother not being alone because they are not themselves. Check her refrigerator and check out her checkbook and online account to see if she has been keeping up with the finances.
Go on the portal with your mother's doctors and keep a list of all medications on the refrigerator. Make sure your name is on medical, dental, etc. so you can discuss your mother's health.
I hope I was of some help to you. You and your brother are in my prayers!
My father had repeated UTI and was finally diagnosed with Proteus type UTIs which was very difficult to totally get rid of. If your mother has repeated UTIs you may want to be sure they are doing thorough testing to be sure they are using appropriate antibiotics. Since she was hospitalized, they probably did.
All that to say, my husband has various degrees of confusion and I discovered I could test his urine at home to avoid unnecessary doctor trips. Below is a link to the one I keep on hand and whenever I feel like his confusion has elevated or other possible symptoms I will do a test. What is good is it also tests for several other things and a few times the test showed dehydration and so simply increasing his fluids helped lower his confusion. It also shows blood when it is not visible, etc. Fortunately he has not had chronic UTIs but the test removes that concern when I am trying to decide if I need to make a doctor's appointment.
I wish I had these tests for my father before he died. He was in a nursing home and many times we would recognize he was confused way before the staff would. We would ask for a urine test and sometimes it was several days before they would get around to doing one and every time it was positive. I felt like that contributed to his UTI issues.
https://www.diagnoxhealth.com/product/urinox-10
These can be ordered through Amazon, Walmart and other resources. I always get the box of 30. One benefit of this brand is they are individually wrapped so they have a longer shelf life, where some brands are simply in a dark jar and once you open it, the shelf life is more limited. If you would like to test immediately, there are UTI home tests available at local pharmacies but they usually only come in packs of 3 tests and are more expensive.
I am not yet 50 and a silent UTI has had a profound affect on my own cognitive function, nervous system and general well-being as well as great challenges in energy levels after antibiotics so please use caution and do your research. If you have someone you trust who knows a good nutritional chiropractic or acupuncture specialist give them a try if they are highly recommended. It may be a way to give her body the support to heal.
That also can cause confusion-a yeast infection/or overgrowth of yeast after even the good bacteria are gone.
I wish your mom the best of luck and that she will regain her memory. Hope for the best, but be prepared if things don't improve.
Watch for any additional unexpected changes in her day to day self care and interactions with you. Might help you to keep a daily journal of how she’s improving, or not improving, and it might be good for her to journal too.
Calendars can be good for medication management, and also a plastic medicine organizer is a good idea.
By the way, if I had a dollar for every time I’ve used the TV remote as my phone, I’d be a wealthy woman, and I’m older than she is.
Hope things fall into place for all of you.