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The backstory is she’s in assisted living after ‘failing to thrive’ when she was living independently. I arranged home care for a few months while she was still in her home but it felt like a bandaid. Now she has a good routine. So with her memory, it’s more about things that don’t occur to her to say anything about like if the staff aren’t doing her laundry…. Her tv was stuck on a channel for days and she didn’t tell anyone.…she doesn’t always change her underwear either… I don’t know if my description makes sense but it’s like ‘holes’ in her functioning and decision making.

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Has she ever had a cognitive/memory test by her primary doctor? Not that the results would surprise you... you already know her memory impairment is progressing.

But if it is "suddenly" worse, this could be a symptom of a UTI, which are very common in elderly woman and are not just about hygience and wearing disposable briefs, but also about changes in her physiology and pH. Often the only symptom is change in cognition, behavior, confusion, delusions, etc. If left untreated it can turn septic unless she gets tested and treated with antibiotics.

I would consider taking her to Urgent Care to get tested. If she does have an infection I would not leave it up to her to remember to take her own meds. You should pay for the AL staff to do that, or you will need to do it.

If your Mom is on meds for other health issues, like thyroid or BP or sleep, you will need to make sure she isn't over-dosing herself. Your Mom is in AL obviously because she has memory impairment. It doesn't get better or stay the same. She may also now have demenita... but I would discount other possibilities first.
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Laseg65 Feb 18, 2024
I totally hear what you’re saying and I appreciate your advice. My mom had a geriatric psychiatric eval about a year ago and the doctor deemed her fully capable… I think all I can do I monitor her well-being and hopefully find an intervention when one is needed. I just wish I understood more.
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Dementia is not linear....there are good days and bad days.

Your mother can be tested for a UTI at her AL.

Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and understand it better. It's a great book written in plain English.

Best of luck to you.
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Laseg65 Feb 24, 2024
Thank you—could definitely use a good read.
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I wonder if you can tell us what diagnostic workups have been done?
Was your mother seen by her regular MD and then referred, as should have been done, for a neuro-psyc evaluations?
Things won't get past that. And that's first priorityhere to be done.

Now, as to "failure to thrive"? That's quite a nebulous term, and in terms of dementia it is almost meaningless.
Tell us in EXACTLY what way your mother wasn't thriving.
Was she unable to keep up her home, her own physical self, unable to cook? Was she wandering, forgetful of whether stove is on or off? Is she word searching? Is she confused or delusional?

In many dementias there is not a lot of variation, but in some--Lewy's can be one--there is some in and out, some up and down, some better and worse. But the overall trajectory for all is downhill.
My brother suffered from a diagnosis of probable early Lewy's Dementia and it was diagnosed by his symptoms. Sometimes he was so "with it" that I could be convinced that his exams, having been done after a car accident with two blows to the head, was "wrong" but the truth was that as he lay bleeding in the arms of his neighbor he kept saying "I KNEW something was wrong with me", and indeed, some of his descriptions of "dreams" that were more hallucinations, and his hanging up the phone, suddenly unable to hear, his difficulty swallowing, and his briefly going blank when he saw such patterns as marbling, hotel carpets, etc, were early signs. It can be hard to comb stuff out, to be certain.
Some few improve briefly in care. They don't have to worry about cooking, cleaning, laundry, bills and etc. It is a relief to minds already over-taxed with trying to remember the basics.

Wishing you luck.
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Laseg65 Feb 24, 2024
Thank you for your response. Initially what happened with my mom was that she was barely getting out of bed and barely eating. She ‘didn’t know what was wrong’ and I ended up calling the ambulance multiple times because I didn’t know what else to do. For whatever reason she couldn’t motivate herself on her own. I brought in home care for a few months but it soon didn’t feel like enough. Then found assisted living in our town so I could have her close to family.
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There seem to be no rhyme or reason to dementia.

Just that is doesn't 'get better'--that's the hard thing to watch, your LO losing touch with reality.

Other than checking for a UTI when things are suddenly different, it's sadly just the nature of the disease.
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Laseg65 Feb 24, 2024
Appreciate your response.
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Discuss concerns with the director of the facility.
If the staff is aware of any decline they should document that.
Is the staff helping her to shower? If so they should be helping change her clothes.
Is she using incontinent underwear? If not you might want to consider that. A new pair for each day.
She is paying for Assisted Living they should be assisting her with her needs.
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I can totally relate. All of what you’re saying points towards Dementia. Get her tested for Dementia . If she does that explains everything. I was caregave for my Mom for 6 hard years by myself without family support .
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Laseg65 Feb 24, 2024
Thank you for your response. So difficult not to have support!
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I totally get where you are coming from. I have experienced something VERY similar with my mom. NO ONE else sees or seems to notice the things I do because talking to mom she seems totally find mentally, except memory lapses that would be expected. So many times when she is unreasonable, I think "Is this her being unreasonable like she was xx years ago", or "Is this her mind deteriorating and it is just going to get worse?" The answer: "Yes", lol! Random memories gone, not long-term or short-term, just random. So, probably not Alzheimer's, at least as this point, which we have always been concerned about because her mother had it. I describe it as each day is like peeling off the next piece of Swiss cheese in the package, I never know where the holes are going to be.
I have come to my own conclusions, and they are just that, MY own conclusions, which one else may understand or agree with, but that is okay with me. My mom has vascular problems (discovered on a brain scan). My "diagnosis" is that she has mild vascular cognitive decline, on some days moderate. A FULL workup by experts would show this, but not a quick questionnaire of the kind that are more common.
In my mom's case she always had an excellent memory but was not strong on abstract thinking or reasoning. So as her functioning declines, her memory still seems pretty good to most people (though I recognize the difference and that her memories are not always accurate). Her abstract thinking ability (understanding metaphors, sayings, jokes, sarcasm), and reasoning, judgment are pretty low. One example I read was if two men, one very strong and in good shape, one very weak and not in good shape, lost the same amount of muscle strength - the strong man might still be in pretty good shape, the other would appear very weak and out of shape, although they had lost the same amount of muscle mass.
I recently read something about the importance of routine. If something is done over and over again, the person is more likely to retain that ability. However, if an elderly person stops that activity, it is unlikely that they will be able to re-learn it. My mom is still in her own home, with some help, but I am seeing her lose the ability to do things because she can do things or not as she wishes. It is a trade-off, Mom will stay in her own home until we drag her out - alive or dead. I wish she had made the transition to assisted living and got into a good routine before her mind declined as it has now. But she was unwilling (even though she said she would long before she got to the point she has now).
I have no advice for you, but since your mom is in assisted living with a good routine, I would be glad of that and just expect that each day will be like the next piece of Swiss cheese. (And not that it matters, but I hate swiss cheese.)
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Anxietynacy Feb 24, 2024
Right there with ya!
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A year can be a long time for an elderly person, so maybe it’s time to get retested?

Another thing—your mom’s senses may be dimming so maybe she’s not as aware as she used to be of the cleanliness of her clothes and body. So maybe it just doesn’t matter as much to her? Was she distressed about the tv channel or was she okay with it?

If she’s in a good place and has her stable routines, what would you change for her? Our loved ones do decline in time, with or without a diagnosis. So if you think there might be treatment that could help you could try for another eval by the doctor. Otherwise, maybe this is just age-related decline and something to notice, accept, and just keep on doing what you can reasonably do to show your love and care for her while she goes through these later stages of living.
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Laseg65 Feb 24, 2024
To be honest she didn’t seem stressed about the TV but I felt super bad. I really appreciate your perspective because I need to acknowledge that I can’t control/fix everything. I will speak with her case nurse to ask about retesting at some point. However, it may not be necessary as they seem open to changing her care plan if needed based on my observations.
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That’s a sign when they can’t use the remote or afraid to ask someone .
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Hello All!
The Aging Care site has been a huge help to me~~I thank each of you for sharing painful stories and kind support.
I ordered “Understanding the Dementia Experience” and would also like to recommend
“How to Care for Aging Parents” by Virginia Morris, excellent resource.
There’s so much to learn, so much to talk about. I’ll keep checking in with you~~I need the reminders that I’m not alone and I have to be patient.
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