Primary Progressive Aphasia frontotemporal dementia mom unlike herself, almost lethargic state. Any advice?

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Rice1775 Asked December 2020

Primary Progressive Aphasia frontotemporal dementia mom unlike herself, almost lethargic state. Any advice?

So my ppaFTD mom out of the blue was acting a little sleepier than normal for a cpl days, then all of a sudden on Monday she's so tired she's at a near lethargic state. Its almost impossible to arouse & when finally aroused awake she's so drowsy can't keep her eyes open. Around supper time oddly enough what would be her normal sundowners time I can get her to get up walk around become alert & act herself for pry good 30mins then as soon as she sits back down immediately drowsy asleep, to the point having to wake her up in between bites of food at meal times..I refuse to believe this is disease progression as it hit in an almost immediate way. I think maybe UTI but like most with this condition getting meds down can be a chore, was suppose to be 2pills 3xs a day for 2 days...yea didn't happen so trying again started last night hoping it's just a uti but need advice any suggestions what may be going on...sick to my stomach with the thought of this being the possible new norm...I'm in desperate need of advice. I pray as tomorrow is Christmas & her birthday I can help whatever has caused this abrupt change!

Alzheimer's & Dementia Behavior Change Frontotemporal

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score 0 · Answer 1

Hi Rice & Answry, I stumbled upon this post during my stress driven insomnia. Rice — I am shook reading your mom’s age & diagnosis — my mom is exactly the same. Her birthday is coming up this month, which would make her 69, but I fear we won’t make it. She also seemingly took a turn for the worst SO quickly over the last few months — she won’t eat/drink & is dwindling away before my eyes. We’re starting hospice this week.

I am curious, and maybe grasping at straws for hope here, but how is your mom doing now??

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score 1 · Answer 2

His condition is not improved. I'm scared for him. The very hard to wake started second week of this month. Won't list exact date here. You can read my post so that I will not take over your post. I will follow yours for updates that may help me. Please update us when you can.

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Im so sorry to hear there's been no improvement in his condition....I hope you get answers/advice that leads you to a positive outcome. Only update on my mom is she has had moments of lucidity throughout the day even times to be what is norm for her at one point was alert/awake for a few hours, however the exhausted behavior is still clear & present esp this am...I'm just at a loss at what's brought this on & the effects....

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score 3 · Answer 3

I am about to post something in a few but saw your post and wanted to let you know that my father, also out of the blue, developed almost to the tee symptoms as you are stating and was just diagnosed as having Covid and Pneumonia. But, but I'm reading online as those symptoms for the most part does not match the very common symptoms (Covid). So I was totally blindsided with the diagnoses.

I hope you can find out what is going on with your mom because as you I too am feeling totally nauseated and upset but am going to reach out on another post to list some other concerns.

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Thank you so much for your reply/advice...that what I was hoping for was another who had possible experience the same or close to same as I'm not only concerned but also worried it could be more....
How is his condition now? Has he improved? How long have you been dealing with the change?

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score 1 · Answer 4

Juse a wild guess, but can you check her blood sugar? Z quilting friend had just related a story about a mutual friend, who all of a sudden became very lethargic, hard to wake up, etc. Her Glucose level was 40. Once she got some sugar in her and called EMS, our friend revived and was taken to the ER where they gave her meds until her Blood sugar stabilized.

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No glucometer at home but I'm able to feed her it's seriously wake her for every bit which is so not her...anyway shes had sweets, healthy foods, juices, water etc...but is worth a shot checking it thank you so much

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score 0 · Answer 5

She's 68 yes old...diagnosed in 2017 she lives at home with me & I'm her primary care giver recently have a nurse coming in 1 day a week... She a very good eater. Breakfast pry best meal, several snacks throughout the day very light lunch, decent supper usual cpl glasses of am juice, coffee, every bit of 4-5 glasses of water thru the day then pry cold beverages in eve then nightly snack.most with this disease you should know symptoms of a uti aren't always present so no was not treating for a UTI prior to this...Sat & Sun she was napping more than normal then on Monday was at a near lethargic state. Friend thought poss uti as change in behavior in such a way is common for ftd pts... tried but getting appropriate dosage in reccomend times proved to be impossible... (care giver there 1 of the 2 days & said she couldn't get her to take meds i.e 2 doses) I'm home next few days so im trying to give the recommended dosage/day uti meds in Hope's it's the cause in her change..

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Below you suggest that these medications you are giving for a "probable" UTI, or what you guess to be a UTI, are over the counter. Over the counter medications are unlikely to treat any UTI. Without at least a dipstick you cannot know if there is any UTI. While you are correct that subjective symptoms are not always seen, esp. in seniors, SYMPTOMs of a UTI WILL be measurable in a dipstick urine test bought over the counter in your pharmacy. If all measurements on that dipstick are within normal range it is very unlikely you are dealing with a UTI.
You say your mother is still eating well. That certainly makes this increased sleepiness much less worrisome. You are able to wake her for meals and she is having no new swallow difficulties. That is very good.
You mention that you have a nurse present weekly. Great. She is the one you should currently be asking about what to do about the changes or about how worried you should be.
You have said that you don't want to worry medical personnel about "every little thing", yet it seems that you are worried about her current condition, and that it is ongoing. That takes it out of the realm of "every little thing".
Do contact the nurse who sees your mother weekly about the change you are seeing. Follow her advice; she knows your mother. The rest of us do not and can only guess.
Wishing you the best and good luck.

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score 0 · Answer 6

You say "I think maybe a UTI" and then you mention being unable to get down prescribed medication. Did she already HAVE a UTI when all this started? That you were unable to medicate her for? How old is she? You do not mention your Mother's age, nor how long she has been having her FTD; so you have her in palliative care. Is she a DNR? Does she/or have you made the choice as POA to not go to hospital anymore? There is so much going on here I don't have a clue how to advise and am left with the fact that this is a profound change, now of many days duration. Is she getting adequate food, fluids? Is she currently dehydrated? Have you done the Urine dipstick you can purchase over counter in a drug store? Not knowing what is causing this change, and guessing that your Mother still is accepting treatment, I can only recommend a hospital ER visit. It sounds as though this is going on for days now, and as though her condition is worsening. Even in covid times, she may need to go to ER. Have you contacted her MD? What has he or she recommended to you?

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Oh & isn't prescribed antibiotics its an over the counter med...as with any medical condition running to the ER with every little thing isn't always an option pcp of course can get her in for an immediate she not acting herself appt. Not to mention UTI's dont always present with clear signs & symptoms esp for ftd/dementia pts.. so when there's random changes in behavior for no apparent reasons you go with the common denominator such as a uti. Also not sure how her age & if she's a dnr relates...

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Primary Progressive Aphasia frontotemporal dementia mom unlike herself, almost lethargic state. Any advice?

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