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I am hoping I can get some insight here. Please bear with me if this post is long and a little disjointed. My Mom, 73, was recently diagnosed with dementia (more specifically : Major Neurocognitive Disorder without Behavioral Disturbance). I’m trying to navigate this and I have so many questions.


Firstly, I'm willing to accept this outcome, however, I have reason to believe she’s been misdiagnosed, as there are parts of the neurosych report that I disagree with, and other factors at play, and I want to be sure we are not just passively accepting this diagnosis without further exploration.


Some background: While Mom has been exhibiting a worsening memory in the last few years, to me, it seems like nothing more than normal aging. For example: she will think she “lost” her keys when all along they’re in her bag (she has done this her whole life and so do I - it’s a running family joke) and while it’s getting more frequent, it didn’t seem concerning. She doesn’t do things like put the keys in the fridge, for example.


She only decided to go for an assessment because she was “fed up” of her husband telling her how “bad” her memory was … and therein lies one issue of concern: for years, her husband has been emotionally abusive: covertly controlling, silent treatment and gaslighting (etc) - more specifically, HE will actually misremember something and then twist it into telling her SHE remembered wrong and call her crazy”. I’ve witnessed him do this many times and I see how it affects her : she becomes confused and questions her sanity…


Mom also suffers from untreated PTSD, anxiety and depression due to a series of traumas in her life. But the anxiety and depression has gotten worse since being with her husband (last 20 years) and I’m convinced it could have contributed to worsening memory as well. It’s well documented how abuse can affect executive function and memory and I worry that all this combined could be presenting as dementia.


Her Dr/NP hasn’t been helpful - she just prescribed her Memantine and Zoloft and seemed bemused when I asked for a referral to an Nuerologist / MRI saying to me “what do you hope to achieve from an MRI”? The initial Neurosych report explicitly said “further medical evaluation should be carried out to determine if there is a reversible cause” but it seemed the NP’s first move was to prescribe meds, without any future plan. She hadn’t even discussed the diagnosis with my Mum.


With all this in mind, I am concerned with how it was handled and where we go from here, so here are my questions:


* What would be the normal protocol for determining a dementia diagnosis? Shouldn’t cognitive assessments be followed by brain scans and blood tests? (And shouldn’t the GP/NP have initiated this without my having to request it - instead of just prescribing meds first?)


* Who should be responsible for telling my Mum of the diagnosis? The Neurosych sent the results to the Dr / NP and her NP never told my Mum explicitly about the diagnosis in her clinic visit to follow (NP admitted this to me and also admitted she herself didn’t “didn’t read the report in full”, even though she is aware my Mom doesn’t understand clinical language).


* What would the process of getting a second opinion look like? Would this mean my Mom would have to go through these rigorous tests again?


* Does anyone here have experience with Memantine - does it work? Would there be any reasons for her NOT to take it?


* Has anyone found that Zoloft helps with memory - or the contrary? I have read reports that say it helps dementia, others that say it makes it worse.


* Are there any key questions I should be asking that maybe are not obvious? We have the neurologist consult next month and I am in the process of arranging proxy so that I can speak to the Nueropsych who carried out the assessment and diagnosed her.


So sorry for all the questions, I feel overwhelmed and alone in this. Any insight at all would be massively appreciated. 💕🙏�

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From my reading she has been given a diagnosis that is no diagnosis at all because it doesn't do anything to explain the cause. Read read read whatever you can about Neurocognitive Disorders and dementias in general. If her doctor is dismissive then look for a new one, a gerontologist if at all possible. Make someone take the time to explain the report item by item. And I'd question the prescription for Zoloft, since her diagnosis excludes behavioural symptoms I'd want to know why an antidepressant was considered appropriate.

My main concern is whether you have any power to do anything, if you are not her POA and she is still with her dismissive spouse then your ability to act on her behalf is basically nonexistent (HIPAA is not enough).
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heidiann Feb 2022
Thank you so much for your helpful reply! Yes that’s the confusion here, there is no caused explained and I’m still not clear on how this is determined. I guess it’s also a possibility that nothing comes up on the MRI or any further tests and there can never be a “cause” - and therefore we have to just “sit and “wait” to see if there’s further decline? I’m just trying to wrap my head around all this. 

I should have clarified that the Zoloft was prescribed for her depression. This was also diagnosed with the neurological assessment. My thinking is, from a holistic point of view, it might help with the anxiety and hence possibly improve her memory (if it wasn’t dementia) but wouldn’t want it to “worsen” the memory if thats a possibility. 
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In my mom's case, her "team" consisted of a neurologist, neuropsychologist and psychiatric nurse practitioner. We were required to bring her MRIs in before the first appoint (they showed an old stroke, likely responsible for her Mild Cognitive Impairment).

The neurologist gave the results to my mom.

I would find a geriatric psychiatrist to weigh in on medications. If your mom's GP is not a geriatrics specialist, now is the time to find one.

The rule outs are thyroid, normal pressure hydrocephalus, some vitamin deficiencies and a couple of others.

A neurocognitive battery is a pretty objective measure, not based on "opinion". A question is asked and answered, a task is given and completed and those produce scores which are measured against the norms for the same-aged population.

Follow up with the neuro and please let us know how you get on!!
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heidiann Feb 2022
Thank you SO much for sharing your experience. It’s really helpful to know what carers your Mom had. My Mom is in such a small town and it feels like the choice is so limited but I am currently looking into options for a geriatric practitioner and I will also look at options for psychiatric nurse practitioner. Just one question - did Medicare cover all of these practitioners? 

Re: the testing, thank for explaining this more, it makes sense. While I am worried about the way the test was carried out and some other factors, I do trust that they are rigorous. I just want to be sure that with all questionable factors at play we are exploring the worst case scenario on both sides. 

I will definitely keep you all posted once I speak to the neuropsych.
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Cwillie is exactly right. Without determining the cause of her symptoms, there is no diagnosis at all- just symptoms.

You have a right to be suspicious of the “diagnosis”. There is so much wrong with how the NP is handling this situation. You haven't mentioned any problems with your mom's ADLs. So besides having cognitive issues (which you're not even convinced of), dementia requires that a person has difficulty with day to day living, or exhibit one of the 3 As, aphasia, apraxia, and agnosia. Can she perform most ADLs? Does she have difficulty with her speech? Does her judgment and decision making seem normal? At worst she may be displaying MCI. At best her symptoms may be treatable. Her depression and PTSD can cause dementia like symptoms by themselves.

The neuropsych report states that further testing should be done to determine the cause of her symptoms. Yet NP's comment “what do you hope to achieve from an MRI?", shows his/her ignorance of dementia like symptoms and how to further evaluate them. Performing an MRI and blood tests can help to arrive at a diagnosis, and whether it is a treatable condition or not. I think prescribing meds is way too premature, and prescribing Zoloft without any behavioral issues seems pointless. Zoloft is not an approved drug for dementia symptoms. Memantine is a drug for moderately to severe symptoms once a diagnosis is determined, not for MCI, if indeed that is the cause. Memantine is usually prescribes with donepizil.

It seems to me that the NP is out of her league in recognizing and further evaluating dementia like symptoms. You might want to keep him/her for treating a bad cold, but I would look for a gerontologist for her cognitive issues.
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heidiann Feb 2022
Yes, you’re so right. The NP seemed clueless - her response to my MRI request was a shock. However, shouldn’t have the Dr of the clinic picked this up since it was such a serious diagnosis? I’m just baffled by this.

Re: Zoloft - I should have clarified that this was for depression. My mother also asked the NP for it b/c she needed, in her words, “something to calm her so the comments (her husband) makes would roll off her” 😔

Re: ADL - this was the part of the report that didn’t sit right. It cited a loss of independence but I don’t really see this to the levels that is characterised by signs of dementia. One example referenced was issues “remembering” recipes she used to cook (I elaborate in my recent reply this thread) but she is able to do things on her iPad, use Netflix (with some struggle but to me this is any elderly person using technology) and she seems able learn new things after I explain it a few times. She will say she doesn’t remember but then if I ask her when she’s off guard (not feeling “questioned”, she’ll ramble it off to me. If left to her own devices, she will do something but if someone is around, she almost becomes a “damsel in distress” and feel she needs help. She doesn’t trust her own judgement.

She seems to gain a lot of new knowledge about a lot of things that she picks up from lots of online reading. She is constantly surprising me with these new things and when I ask how she’s knows she says she’s “learned” on YouTube. ☺️ It’s just in her perception of herself when I see she feels she’s “not sure” or she “draws a blank”.  She has always had low self-esteem and needs validation to feel confident and sure in her abilities. Her husband completely neglects this need for reassurance and invalidates her. And so she’s extremely anxious and unsure with everything she does. I do know from personal experience in a similar relationship how it completely ruined my thinking and executive function as I spent all my brain power trying to emotionally survive and couldn’t remember things or make a decision for years. That was in my 30s. Imagine what that might be like for someone living with that for 2 decades and into their 70s.

I have noticed some trouble with mixing words up (e.g. she referred to “Shark Tank” as “Fish Tank” and we had a a good chuckle) or sometimes she will struggle to find the word shes looking for but it doesn’t seem any different or more frequent than anyone else who has a lapse in word retrieval now and again (don’t we all do this?). But if this is decline, then her husband has it, too, b/c he keeps mixing up “vaccination” with “testing” when referring to Covid. And his memory is also bad and his technology skills even worse… my Mum even has to show to him how things work sometimes (she is able to “step up” when she’s feeling in “control” and confident) just like there are some things she’s not sure how to use and she asks him (yet gets little help). So how do I tell? 

Perhaps I just don’t fully understand yet how to differentiate between what is normal again or dementia yet. But with all these factors, I’m not willing to give up without a fight.

Sorry for this long reply, but I just wanted to address your points which were so very helpful and gave me more food for thought. Thank you so very much. 🙏🏼
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Wow, your writeup was wonderful. And so complete. In all honesty if anyone can figure out whether/how to get a second opinion, it's you. If anyone can look up the facts on the medications, it's you.
A question here: you tell us of the husband in this case. Is he also Mom's POA, and not you? Because if he is, then she has an abusive (taking your word for it) husband as her POA. The outcome of that won't be good.
So far MRIs cannot diagnose any age related dementia (and that's usually done on autopsy is anyone cares any longer, though there can be clues for some dementias such as vascular dementia, for losses of the matter in the brain, and etc. For my brothers dx of probable early Lewy's Dementia it came from his telling his docs his symptoms. However many of his symptoms could have come from other things (a decade of balance issues--Lewy's they said. Yet in the area of the brain directing balance they found and "old" "calcified" brain tumor that could ALSO have dictated this. He had evidence in his home of an instant and profound change in handwriting and of hearing changes on phone. And so on. I won't go into detail.
For all these reasons, MRIs are common and helpful so the answer to that Doc's question is "What I hope to find is any evidence of loss of matter, of signs of vascular changes, of small stroke evidence, of any tumor present, and of a way of as - you - say differentiating the dx."
Now on to meds. There are no medications known to change the outcome in dementia so far. Zoloft, however, may help with some things you mentioned that are causing chronic depression, like staying with "that man". And when there is relief of that, then there is often a lifting of symptoms. For instance, when I was made, by my bro, the Trustee and POA for him and took over ALL BILLS, and when he went into ALF, his anxiety level went down so far that he did nothing but IMPROVE in symtoms the two years before his death from another condition. The loss of short term memory, of loss of keys, etc is a known component in people with anxiety disorder.
As to the new meds approved by FDA, the FDA itself already has admitted there is zero evidence they work but they approved them because "the populace wants them". The newest and most expensive has been reported to cause brain bleeds. So much so that testing of them was stopped in some instances. So....just sayin. They are enormously expensive and apparent the only CLAIM they work by their own company is in early diagnosis.
If misplacing keys is the only symptom we have here, no wandering, no getting lost, no forgetting your address after 40 years living someplace, then I think you need to vigorously pursue another second opinion. The diagnosis Mom has in hand already calls for a differentiating of symptoms and diagnosis.
As far as the marriage, what is Mom's plan there? Is she "happy " and planning to stay and leaving her hubby in charge of her future. Because you and Mom may be in for a world of hurt until the end on that one.
As to who tells Mom? Her doctor. And her POA should be there at that time.
I sure do wish you luck. I am very concerned that you are the one so concerned for Mom but may not have any rights to direct anything in her protection. Best out to you. Your writeup was classic good, what a nurse would hope for in a patient's family providing history. YOU should be the POA. That you may not be worries me more than I can say.
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GardenArtist Feb 2022
Alva, excellent advice!
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You use the word "Mum". Are you in the US, UK or other Country.

I ask because on this forum members are mostly from the US. The US is not Socialized medicine. We have members from the UK and Canada too. Yes, we have Primary care physicians but we also have the ability to get second opinions. We don't need a PCP to sign off. Medicare makes this even easier. As long as a doctor takes Medicare we can go to any doctor we choose. I never asked for a referral for Mom for a Neurologist. I just made the appt.

If Mom is on Medicare in the US, then no need for a referral. You find a Neurologist that excepts Medicare and take her. Secondary insurance usually goes along with Medicare unless...a Medicare advantage. You may need to use a doctor in their network. Not so with straight Medicare and a secondary.
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heidiann Feb 2022
Thanks for your input. We are the in the US. I lived in the UK for many years but even as a family we have always used either Mom or Mum since day one. We have English roots.  Sometimes I mix them up. :)
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The Zoloft may be an appropriate med, given that you say that your mom has been depressed for a long time. I see no downside to starting it (it takes a few weeks to kick in) and it may give her mood a boost.

I am curious what parts of the testing you disagree with. Something that occurs to me is that in a neuro-psych, the clinician may pose "what would you do if" scenarios; your mom may have a comfortable routine and be able to know "what to do if" is a situation that gets repeated often (run out of food, see someone she knows on the street), but might now be able to give a good answer to more unique or stressful events like "see a car accident" or "fall when no one is around".

Food for thought.

You can certainly get a second neuro-psychologist to take a look at the results and see if they come to the same conclusion.
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heidiann Feb 2022
Thank you so much for your reply! You elaboration of the what might happen in the testing scenarios is interesting to think about. I do feel my Mom would be know what to do in both these types of scenarios b/c I’ve seen it… her response time to things is still very quick once she sees a problem…. for example - e.g. she left a burner on but caught it and ran over to shut it off as soon as she realised or can catch things when she sees them falling, although her actual movement is a tad slower like I’d expect any older person’s to be…from what I’ve observed, it seems like her hesitation or “confusion” is in her ability to “trust” herself to do things and needing reassurance (which she never gets in her relationship). I elaborate on this more in my other replies. But I will pay more attention to these things to see if I spot something more concerning. She has always been ‘absent-minded’ with certain things and so have I so perhaps its just a personality thing (or maybe I’m getting dementia too lol) but she knows when there is an issue that needs attention. In fact, its Mom who has to tell her husband to stop at stop signs b/c he never sees them (I’ve seen this is a number of times) and has saved a number of accidents. She’s a much more alert driver, yet he won’t let her drive and constantly has near misses. 

I’m starting to feel like Zoloft will be helpful. She stopped taking it after only a week but I will have a chat w/her again about it. I just wanted to get some more info on it first. Thank you again!!
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Heidiann,

There are a few things to think about. Most important you mention getting a proxy so you can talk to the Neuropsychologist. Who has POA over finances and Healthcare Representative (Medical POA) over Mum? Please have these be your next steps. A person can still assign them when they have mild dementia or cognitive decline. This is especially important as you said her husband is abusive.

With the Healthcare Representative you can speak to her medical practitioners, but they depending on the country may also ask her to give permission for them to reply to you. When she is incapacitated, you would be responsible for making medical decisions on her behalf.

Denial is a common response for family members when a parent is diagnosed with dementia. My step sister still insists her Dad did not have dementia, he died in 2018. She lived away, where as we saw him weekly and he definitely was displaying signs of dementia and he had a medical diagnosis. But he could fake it on her short visits a couple times a year and she denied what she was seeing when he was tired and could not fake it any longer. Showtiming.

I understand your frustration with a listing of symptoms, but no definitive label. My son had a psychotic break last spring, after 3 weeks of trying we got him admitted to the hospital. He was released 3.5 weeks later, with medication to treat the psychosis, but we do not know if he is schizophrenic, Bipolar, or what? It is crazy making as a family.
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heidiann Feb 2022
Thank you for your input. I’m working on getting the POAs done this week so hopefully that will make things a little smoother going forward. 🤞🏼

I’m so sorry to hear about what you’ve had to go through with your son not having a proper diagnosis. My partner’s brother has psychosis and it was very much the same - it’s such a roller coaster for the whole family. Sending you much love and strength. I really feel for you!
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Thank you so much for all your helpful input! I’m so overwhelmed and grateful for the support you’ve all shown here and for the time you’ve taken to reply. I feel seen and more confident in next steps. I’ll respond to you all individually soon but just to touch on the most common things mentioned:

POA : I will be getting a POAs this week. Mom already expressed she me wanted as her agent. She doesn’t want her husband to know of her diagnosis now b/c she is so worried he will “make fun of her” b/c it will confirm she is “the crazy one” and there is a strained relationship w/his family because he only tells them how “she’s a nag”, but not what he does to her. I will tell him the results eventually, but considering that her mental health is so fragile atm, I want to respect her wish. If we tell him before we get a second opinion - and say the second opinion rules out dementia - she’ll feel forever judged by him/them. He has made her so paranoid that she does not want to be any more vulnerable around him than she already is. I’m also working on getting her weekly therapy b/c I know having someone to talk to will empower her and alleviate these feelings a bit. He is away for a week right now and she is visibly more relaxed and confident.

Memory: B/C of the character limit, I could only summarise with one example, but a couple more: she does repeat herself. But I notice its more around her husband. He ignores her most days and my Mother is a very chatty person, I feel its her trying to just have some interaction with him, seeking his approval. And when I look at the examples for what is considered normal aging vs dementia, she does not meet the criteria for dementia. She is aware of where she lives, knows how to get home, if she forgets recent events and I remind her, it will jog her memory and she can elaborate on details of what happened so I don’t think she is “pretending” to remember. I’ve also been testing her by pretending I’m forgetting things (e.g. “what did I have for dinner last night?” - or “what did we do Saturday”, “did you see my keys”) and she is often able to answer without much hesitation. She carries on with her daily activities - the thing in the report that I found v questionable was that she was “forgetting recipes that she’s done for years” but what I see is a woman who has had to wait on a man who has neglected her emotionally and finds cooking for him stressful b/c she thinks it won’t be good enough so she is constantly questioning if she’ll to “get it right” (my Mom also has a 9th grade education and has resigned herself to being “stupid”). When she cooks with or for me, she is less anxious. 

I realise that the cognitive assessments are thorough and take into account education level etc but I also know that my Mum is very nervous being “tested” and she feel has total mind blocks under pressure. She might also respond in ways she wouldn’t normally and or thinks she is “supposed” to. I also know how emotional neglect and depression can really wreak havoc on your daily functioning as well. It is also worth mentioning that the assessment was “broken up”, not taken successively as they were supposed to be b/c my Mum had to go to see her ailing brother in a different state. There is even a disclaimer on the report which says that this may have affected its accuracy. And my mother said she felt like the neurosych was being very dismissive after she came back from the short hiatus. Also when I checked the reviews for this clinic, someone said they had been misdiagnosed. Again I am not trying to clutch at straws here - I am fully willing to accept it could be dementia — but all these things raise red flags. Perhaps it is even early onset, but it certainly does not feel like “major” decline as the diagnosis suggests. I just want to be sure we are getting as “full” a picture as we can.

Once again thank you all from the bottom of my heart, this is a wonderful, supportive group and I’m so happy I am here. 🙏🏼❤️ 🙏🏼
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AlvaDeer Feb 2022
I do absolutely agree your Mom may have been misdiagnosed. Or this is VERY early. DO get that POA with an ATTORNEY. Get it thorough and with all the T's crossed and I's dotted because I fear the husband stepping in and bullying her to change it. She would be vulnerable to this. She is well able to be examined now by an attorney in office to say what she wants to do here.
My brother and I both, we decided, have an anxiety disorder. Under normal easy circumstances we are great, but put us under stress and we freeze like deer in headlight (froze in his case as he is now gone). We can't hear; it is actually a physical sensation, our ears feel like we are "under water". He improved soooo much after I took over his bill paying, and he was all settled without a lot to worry about. A shocking improvement, actually. Before his diagnosis of probable early Lewy's was finalized in any way he died of sepsis, so who know what the future would have held. Thanks so much for your response to us; so few bother to write back. I hope you will update us as you go along. Best out to you both.
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When my mother was exhibiting signs of dementia, she had an MRI that was normal. She was then given a MoCA cognizance test and scored an 18 out of 30 which gave her a dx of progressive dementia in 2016. She continued to go downhill with her memory problems, incontinence, balance problems, and need for help with ADLs. She didn't develop aphasia until recently with advanced dementia, never wandered, still feeds herself but is wheelchair bound and very riddled with delusions. Last time she was tested in 2019, she scored a 10 on the MoCA exam. It was a slow but steady decline for her over the past 5 years and yes, the diagnosis in her case was correct. She's taken no meds for dementia as none are known to do much, but she's taken Wellbutrin for depression since 2011 at the max dose. She'd be much worse without it.

She started introducing me as her mother in the earlier days of her dx. That's when I knew something was off.

I would be sure your mother is given a cognizance test, see what her score is, and if she passes the clock test which tests executive brain function. If she can draw the face of a clock showing 3 o'clock and it actually looks like the face of a clock, I wouldn't worry too much about dementia. If she draws a blob with no semblance to a clock, her executive brain function is compromised meaning the conductor of the orchestra is missing and the band hasn't a clue what to do, in layman's terms.

That is over simplified language, of course, but pretty much sums up what you're going to specialists to figure out.

Best of luck with all of this. It's a lot.
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heidiann Feb 2022
Thank you so much for sharing your experience and for the very helpful insight and explanation.

I will be sure to look into the cognizance test and will pick back up on the Zoloft conversation with her.

I am so sorry about all you’ve had to deal with regarding your Mom’s condition. It really is a lot to bear. I applaud you for your strength and tenacity in caring for your Mom. 💕
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here are my thoughts and your mom is lucky to have you looking out for her when her spouse is abusive.
Her Dr/NP hasn’t been helpful - she just prescribed her Memantine and Zoloft and seemed bemused when I asked for a referral to an Nuerologist / MRI saying to me “what do you hope to achieve from an MRI”? I’m glad you stood your ground and asked for referral. My husband is a specialist and I get the same horrible treatment from doctors but I just stand my ground. Always good to get second opinion and look for a doctor that you can work with. This can be a long journey/care, you need a team work with your doctors.
Memantine and Zoloft are not bad esp at low dose. Your mom might benefit. Start at low dose and look for side effects by asking your mom and by observing. Memantine is more beneficial to individuals when the disease is caught early. And zoloft at low dose took care of my moms anxiety. Widely used meds for anxiety.

* What would be the normal protocol for determining a dementia diagnosis? Shouldn’t cognitive assessments be followed by brain scans and blood tests? (And shouldn’t the GP/NP have initiated this without my having to request it - instead of just prescribing meds first?). Zoloft can be given for anxiety and OCD (given to dementia patient for anxiety). With both my parents having been diagnosed… primary doctor, neurologist, neuropsych or gerontologist can give a short mini mental test (30questions no more than 5mins) and an MRI brain scan. Some doctors will do CT scan before MRI to make sure no dementia problems are in the brain like stroke. My parents had the minimental test and MRI. When MRI a result came back pointing towards dementia a CT scan was done and my mom was definitive for Alzheimer’s (caught early) and dad was disqualified for CT scan his brain was deteriorated on an MRI but no Alzheimer’s just general dementia. After this your mom can do a 2hour questionnaire test to see how bad their memory is and is given by a neuropsych.

* Who should be responsible for telling my Mum of the diagnosis? The Neurosych sent the results to the Dr / NP and her NP never told my Mum explicitly about the diagnosis in her clinic visit to follow.
- it depends who you would like to be the bearer of bad news. My parents listen and love their doctor. Their doctor told them in simple terms about dementia but my parents were in full mode denial. We tried to explain it different to my parents and we were met with denial as well. That’s when we didn’t push and we just now address things early on as they happen.

* What would the process of getting a second opinion look like? Would this mean my Mom would have to go through these rigorous tests again?
- you don’t have to do the tests unless you are convinced they are not done correctly. Some tests if done twice will be denied coverage by insurance unless it’s noted as second opinion and justified. Go for 2nd opinion and show results and hopefully you can get better explanation and might stick with 2nd doctor. My parents have a geriatrician, neurologist and GP and I weigh each of what they say.

* Does anyone here have experience with Memantine - does it work?
- not everyone is the same. At early stages is better outcome. Start at low dose if your mom or you see/feel something ugly stop gradually and talk to doctors. Headache was a primary complain for my parents. We had to stop it didn’t help.

* Has anyone found that Zoloft helps with memory - or the contrary?
- at low dose no. It helps with anxiety and ocd that can be debilitating to some.

* Are there any key questions I should be asking that maybe are not obvious? We have the neurologist consult next month and I am in the process of arranging proxy so that I can speak to the Nueropsych who carried out the assessment and diagnosed her.
- yes definitely make your mom sign a medical POA and you as agent before her spouse steps in. Might be prudent to speak with an elderly law. 🙏
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heidiann Feb 2022
Thank you so much for taking the time to answer all of my questions and so thoroughly. There are definitely a lot of things I still need to take consider. I do still have a question around the second opinion - would the neurologist appointment we having coming be considered a basis for a second opinion or would we have to seek anther neuropsychologist to repeate the cognitive tests, or a geriatric psychologist … I’m concerned mainly about how Medicare and insurance handles. In short: I don’t want Mom to get billed for us not following correct protocol for seeking a second opinion.
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You have some great answers and some great suggestions and your comments/replies have been helpful as I read through.
I do have one question that is at the back of my mind that I can not get rid of.
Would your mom consider a divorce at this time?
I realize that at 73 it is not something that many contemplate but with the emotional abuse that is going on I can not imagine she would want to remain in the situation. (Not even going to address the previous 20 years. )
I would also seek the advice of an Elder Care attorney and try to set up whatever safeguards that can be set up for her. If her husband is that controlling this could be a nightmare for her in the very near future. And I would hold off any discussion with him about diagnosis until she is protected financially.
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heidiann Feb 2022
Thanks so very much for this input and your concern. Mum has brought up to me on a number of occasions about leaving and I’ve reassured her that I’m here to support that decision if thats what she wants to do and to also take care of her but I don’t think she will follow through. She tells me she feels “too old” and whether or not that’s really how she feels or if he makes her feel this way is hard to determine (She threatened to leave him last year and his response was a childish giggle “your 73, where are you going to go?”— I was there when he said this). She is dependent on him… she doesn’t like to drive that much anymore and she also worries she’ll “lose” everything she has, which of course is not true. Everything is half hers and I’ve told her I would otherwise provide her with whatever she needs and she could live with me or I’d even buy her a small place. She says she also feels responsible for him, that he won’t be able to be alone and she does feel that he’s good in some ways and he provides for her. I think overall she is just scared. She has also told me she feels like a “kept woman” so I guess the baseline of her hesitancy to leave is due to a trauma bond which I think is not something she fully understands. Of course, I don’t want to apply any pressure and make things more stressful for her. He already sees me as a problem b/c I have been outspoken when I see some of the things he does to upset her. It’s a sensitive, complex situation and I’m on a tightrope.
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Heidi, I feel even more strongly now, having read your updates, that your mom should have a consuly with a geriatric psychiatrist.

It sounds like there is an awful lot going on in your mom's life vis a vis her husband.

Does she want to stay with him, is question #1?
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heidiann Feb 2022
Thank you Barb, your continued concern is really appreciated. 🙏🏼 I have started to look into options for a geriatric psychiatrist and will keep everyone updated here on how these next steps go. Re: Mom leaving…. I have just addressed this in more detail below, but in short: as much as want her to and think her mental health would be much better for it, I am not sure she is able or ready to do this. It’s such a difficult situation.
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Heidi, one more thing. Along with that airtight POA be certain you begin your own diary. One for symptoms. One for the hubby. I fear he will come after guardianship. He sounds like a bit of a control freak. If he does so then as the hubby he holds the power. The answer for the court to his behavior will always be "But Mom STAYED; she loves him". So keep your fears written. In court they can be gold if written in ink and no tear outs. So a simple composition book.
If you want some games to do check out some of the things they do in the neuro tests such as draw a clock set at 2:15.
Balance can be due to so many many things. There are fun balance exercises for you to do with Mom if you see one another with any frequency. You could ask MD for a PT assessment when you have POA, and attend with Mom. They will teach you balance and strengthening exercises. I cannot tell you how much they can help. They would be good for ALL of us to do. At 80, unfortunately, I sometimes only remember to do mine while waiting for a bus!
Thank you for all your responses. If anyone can help your Mom, it's you.
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heidiann Feb 2022
Thank you so much Alva. I am keeping a diary of everything now and I’m trying to engage Mom in as many activities to “test” and exercise her memory as possible. As for her husband, I don’t think he has the tenacity to fight me on guardianship but of course, I will cover all my bases regardless.
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Heidiann, I would encourage you to get a HIPAA that specifically states it never expires and is intended to be valid in any jurisdiction it is presented. The ones we sign in medical setting expire annually and you don't want to be caught out when you need it the most.

I would also encourage the same thing on the PoAs.

An often overlooked POA is for Mental Health and once signed can not be rescinded. Because of the abusive husband, I highly recommend getting one of these done. It will help you help your mom if she is ever threatened with institutionalization by this yahoo she married. It gives you all the authority to place her and nobody else has any say.

You are right to question this. The constant belittling and gaslighting could very well have her stressed to a point of not being able to function cognitively. Is it his intent to drive her mad or is he just a sick sob?
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AlvaDeer Feb 2022
I wasn't even aware that this existed, RR. Thanks for this.
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HeidiAnn; thanks for the additional information.

For what it's worth, your mom needs a team.

She needs an eldercare attorney to protect her financials.

She needs her neuropsych testing to be explained to her AND to you, preferably by the neuropsych him/herself. My husband had a neuropsych recently at the behest of his neurologist and the neurospsych spent an hour with us explaining the results. We have a follow up with the neurologist next month to go over next steps.

Have you contacted the neuropsych to say "we don't really understand what this report tells us; can we have a meeting with you to go over the results?".

If you want a second opinion on what the test results show, you need to have another neuropsychologist, not someone from a different discipline, interpret the results.

Is there a teaching hospital near mom that has a geriatrics department? Or a big rehab hospital like Rusk or Burke (those are the two I am familiar with) that have a dedicated Memory Clinic or the like? Getting this stuff done piecemeal by clinicians who are unfamiliar with each other is not as good a path as having a team that works together frequently and knows and trusts the other's work.

I see no reason that Medicare would have a problem with a neurologist, a psychiatrist and a neuropsych all working with mom. that's the team that my husband has, and that my mom had in the past.

Does mom have assets and income in her own name? Are all the accounts joint? I would consult a lawyer soon about getting those protected.
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heidiann Feb 2022
Thanks again Barb. Mom has assets but very little (under $10,000) so I’m not really concerned about this side of things, I’m more concerned with the health side of things.

Re: speaking to the neurosych the report. I tried, but was told I needed proxy docs signed first (I’m only proxy with her Dr’s office), which I’m doing next week when I do the POA.

In your experience, did the neurosych talk to you and your husband at the *end* of the cognitive testing to give the results? My Mom said that he just said to her “okay you’re all set, you’ll have the results sent to you in 5 weeks and I’ll see you in two years” which does seem strange to me. She either didn’t understand what he told her about the diagnosis, he wasn’t clear enough about it, or he didn’t explain it to her at all. She did say he was quite dismissive and although I acknowledge there could be memory issues, my Mom still does have good judgement about what’s happening. Without anyone else there, though, I will never know what exactly happened.

YOu’re so right, doing this piecemeal will be a nightmare. I will do a search now for the local Alzheimer’s services in her area. Thanks for the suggestion, I’m not sure why these things are not occurring to me naturally I’m just so overwhelmed at all there is to do.
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Heidi; please, no worries! I'm "in the business" so to speak, and we had GREAT guidance from the geriatric psychiatrist at mom's Independent Living facility (we were referred to her by the on site gerontologist) so we had LOTS of direction. This doesn't come naturally to anyone unless they have 10 parents.

The neuropsych didn't tell my DH anything at the end of the testing; I'm a retired School Psychologist; I never told parents anything at the end of testing (you need to score stuff) so that's not unusual.

There should be a follow up meeting with the psychologist to explain the results to you and mom (if she agrees to you being there) to ask questions and query the validity of the results.

Questions to ask:

can my mom still drive?
Can she handle money?
Is she able to live alone without support?
What level of support does she need?
Is there further investigation that you would recommend, like imaging, testing, blood tests, etc.?

If this was YOUR parent, what level of care/intervention would you recommend?

Does it appear to you that there are any other mental health issues at play, like dementia, ADD, PTSD or other stuff that we haven't considered?

What are our next steps?
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heidiann Feb 2022
Thank you so much! Yes, I assumed that there was scoring involved / more time needed and the results would be discussed later but i was surprised there was no follow up appointment. I guess that’s where the NP came in and…well…we know how that turned out! Thank you again for these suggestions and for sharing your valuable experience and knowledge. I am truly grateful. 🙏🏼
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Well. I'd suggest you take your mother away on a girls-only two week holiday somewhere quiet and relaxing and see if it does miracles for her memory. If it does, there's a clue.

[What, may I ask, is so wrong with putting your car keys in the fridge? - says the woman who found her cup of coffee in the laundry cupboard after a half hour search. The real distinction is: forgetting where you put your car keys (even if it's the fridge) - normal. Forgetting what your car keys are for - dementia.]

With all of those medications and the stressful long-term emotional situation and in the absence of imaging... aren't you tempted to take her back to the drawing board, stop everything, and start again? I understand that the thought of all those tests again might be off-putting, but on the bright side at least you could insist they're done conscientiously and in the right order.

Just for example: at memory clinics here, we do the MRI (or contrast CT if MRI isn't possible) first. That scan then goes with the subject to the clinic, for functional testing, interview, and finally consultation with an Older Age Psychiatrist. It makes for a long old morning! - but at least there's method in it.

The really important thing is to reassure your mother of your respect, love, and confidence in her. What medication? - less so, and generally speaking less is more.
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"Neurocognitive disorder without behavior disturbance" is the statistically official name of someone who is showing evidence of a cognitive impairment without abnormal behavior. Mild cognitive disorder is common in the elderly. It may or not, be the beginning of a dementia. There is no way to diagnose Alzheimer's at the very beginning. Memantine is a drug used to improve memory. Zoloft is an anti-depressant. The neurocognitive disorder that your mother presents could be a normal loss of cognitive functions that comes with aging, or it could be the beginning of some type of dementia, most likely Alzheimer's because it is the most common. Only time will tell. In normal cognitive impairment from aging, it remains mild throughout the years. In Alzheimer's it will get worse rapidly. A MRI is only necessary if a brain injury is suspected, like a hemorrhage from trauma, a brain tumor or a stroke. It does not help in diagnosing Alzheimer's. Let's not forget that a severe depression can also mimic a dementia. The medications prescribed seemed adequate. My suggestion is to wait to give the medicines time to work, both take about a month before some improvement can be noticed.
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heidiann Feb 2022
This is extremely helpful and makes total sense. If only her NP had the knowledge to explain it just as you have, this would have saved a lot of confusion. I’ll hopefully get more clarification once I’m able to speak to the neuropsych who carried out the assessment. Thank you so very much! 🙏🏼
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Get her and her husband appointments for evaluation and treatment by a neurologist.
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Change doctors she needs to see a neurologist and have a MRI. Don't wait.
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Feelingguilty22 Feb 2022
I agree 100%. I’m so fed up with most doctors now. Seems they only want to push drugs without finding root cause or alternative ways to deal with the issue. And they don’t delve into lifestyles, diet, etc.
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I agree with Countrymouse. You and Mum need to take a vacation together. If Mum's husband was able to be away for a week (from one of your previous comments), then he can take care of himself at home. Give her a break, and then offer her the option of not having to go back to him.
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heidiann Feb 2022
Thanks for the suggestion. We are working on this but we are waiting until Covid dies down. :)
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Mild memory loss by itself as we age, in spite of TV ads hawking their little pills, should not be unexpected. I am not much younger than your Mother and I can tell you, sometimes I have so many things running through my mind that I think of something I need to do, or take with me, that if I don't do it within a couple of minutes I forget. But, sure, it can be that way all through life. When I was a sophomore in high school, I bought my first old car. I had a bad habit of forgetting my sack lunch, my books and anything else I needed for the day. Memory issue. Since my lunch was in the fridge, I decided to put my books and my car keys in with my lunch, in the fridge. I never forgot them again, couldn't leave without them if I needed my keys. So now, in later life, I measure the changes against early and mid life and I don't concern myself so much. The only other thing I might mention is I think a bad relationship can exacerbate or even create some thought process issues. I saw that with my sister who is now in AL. Her drug abusing son and his wife, kid..moved in with her. She seemed to go from independent to well into dementia within just a year or two because of the abuse. When he suddenly died at age 40 of a heart attack, since I had been cut off from contact, I was in shock at her mental state. A master's degree in Psychology, retired as a family councilor, Army veteran...all gone. So in my opinion based on a personal experience, yes, her environment can adversely affect her mental state. Lastly for me, brain scans are of no use in evaluating dementia or mild memory loss. Her environment is the most important factor and medications are usually more associated with behavior problems, not so much with memory.
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heidiann Feb 2022
Thank you so much for this very helpful insight and for sharing your personal experience. I’m so sorry your sister went through this. Hearing this just further solidifies my feeling about how my Mom's environment has likely contributed to this and I just wish that the there were screenings to better detect the behaviors in spouses / close family members that can impact a person’s mental state. How does one even measure covert, sustained emotional neglect over a number of years - or “death by a thousand papers cuts” as it’s often called? It’s impossible.
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You are right in not accepting her diagnosis.

My mom had cognitive problems caused by overmedication and high blood pressure. This was misdiagnosed as “nothing we can do dementia” by more than one doctor. (When I later picked up her medical records, one doctor even added to the physician’s notes, “daughter is in denial.”

I found better doctors and personally did research so when I went in, I was as educated as possible regarding her medications. (specifically, purposes, warnings, negative side effects and interactions) and her medical conditions.

Mu mom’s memory and body functions improved miraculously when she got better doctors (willing to reduce some of the medications). She had memory losses associated with typical aging, but nothing more.

Some people also have “white coat syndrome” where they are so scared and intimidated by doctors that they don’t “test” well. My mom would get nervous when talking to doctors and not present as she did normally.

Follow your gut feelings! She is so lucky to have you as her advocate!
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NannyAnn Feb 2022
Well said. Excellent advice.
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I feel somewhat naughty suggesting this but: how about grabbing this excuse, placing Mum in assisted living/nursing home (which she doesn’t need) to get her away from abusive hubby. She will recover and you two can have merry times together.
I know what stress can do to a persons memory and I know what an abusive relationship can do too and this is a great way for separation without it being anyones fault.
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This is a case for a seond opinion! I would start there. My husband's doctor stated that these drugs do more harm than good, especially in a person over age sixty five. He only takes blood pressure meds and we do mental exercises for his memory lapse. They help!! Dementia, depending what type it is goes up and down and I find myself in the denial mode at times wondering if he really has it. I get over that after talking to myself. I feel so sad for him and for me as he slowly is going away. Hang in there and take it day by day.
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As usual, I'm coming into this late, but just wanted to chime in that the diagnosis from the Neuropsych says your mother has memory loss and no behavioral disturbance - also called Mild Cognitive Impairment (MCI), a catch-all for cognitive loss that seems a bit greater than the usual normal aging. It may progress or it may not, depending on the cause. The prescriptions of Mementine and Zoloft are a very appropriate start from the NP. The Neuropsych is not a neurologist, and that examination could come next. An MRI is not usually needed unless there is suspicion of a brain tumor - though it can show brain volume as one response notes, that's not typically something that is looked for at this early stage. It's possible you will see your mother improve markedly with the Zoloft and Mementine and if so, perhaps she could try tapering off the Mementine...anyway, don't be too upset with the NP and do go with your mother to any future important appointments, such as if you see a neurologist -- and hopefully can also go with her to meet with the Neuropsych. I'd also suggest that your mother might do well with some supportive psychotherapy to talk about her experiences with her husband and help her sort that out. She may not be "ready" to leave him or able to confront his mistreatment, but a kind female therapist familiar with older adults might be very helpful. Good luck!
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heidiann Feb 2022
Thanks so much for taking the time to reply! This gives more food for thought…. Although one thing I’m trying to rectify here is the *Mild* (in Mild Cognitive impairment) with the of *Major* (as in Major Neurocogntive Disorder) as well as the presence of the diagnosis code F03.90 (which I understood to be Dementia) in the report - would F03.90 still be characterized as “MCI?”

Re: NP - the neuropsych report recommended “further medical evaluation” to be carried out - does this mean only medication and nothing else? The neurologist was something I pushed for b/c there was no other care plan put in place by the NP (besides the meds) and nothing more was said to my Mom (not even a discussion of the diagnosis) by the NP so I felt it was sort of left dead in the water.

Thanks for the suggestion of therapy - I’m already arranging this as I have always felt this would be of huge benefit to her since she already does not feel very heard or seen in her home.
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Hi there, Heidi Ann. I'm 'old as dirt' (75), as my children fondly say, and also in the behavioral health field since 1990. My late husband was 94 when he passed away last year. I support your questioning wholeheartedly. PTSD, living with bullying, chronic stress in the home, personal characteristics she has of absentmindedness, etc. seem explanatory, in whole or in part. You've highlighted many of the problems with medical care in our country. Chief among them is lack of interest in checking for and identifying possible root causes - a correction of which could lead to a turnaround and 'cure', or, at the least, improvement - and a readiness to rather quickly employ diagnoses with attendant medications. All medications, even those truly needed, carry significant side effects, often tending to a downward slide for geriatrics, especially when multiple ones are employed. My husband was sharp as a tack until his demise. But when an adverse reaction to a medication landed him in the hospital, they slapped a dementia diagnosis on him (the main part of the medication side effect was delirium and confusion) with attendant psychotropic medications - very toxic to him- and zero informed consent. We mustn't forget that medical care itself is the third leading cause of death in our country after heart disease and cancer. AARP had an article a few years back in their monthly magazine, about a study where 30-year-old and 60 plus year old subjects were compared for cognitive ability after an intervention with the older group was employed for three months. The older group got two tablespoons of unsweetened dark cocoa in their dark roast coffee every morning and they outperformed the younger people on cognitive tasks at the three-month conclusion as a result. It seems dark cocoa and dark roast coffee both disrupt plaques forming in the brain and stimulate cognitive ability. Exercise - walking, biking, treadmill, weight bearing/weightlifting, stimulates the brain. Hugely important. Omega 3 fats - fish oil, flax oil, other sources, are good for the brain and body. Meditation. Socialization, positive relationships. A support group could be very good for mom - maybe Codependents Anonymous. A good therapist who is supportive, can help her with assertion and self-care. There is a huge correlation between how much stress we have in life and how assertive we are. Take back her power. Anxiety, upset, depression, stress impair mental ability. After interventions are robustly employed and no improvement, then move in with medications could be your plan. Sometimes a geriatrician can be helpful on the medical team if they are one of the good ones that fight for holistic remedies and fight to keep medications as a last resort only. You are obviously a most wonderful daughter. I give you and your mother permission (if it's safe and no bodily harm) to call out her husband. "You're bullying. " "That's abusive." "If you can't be kind and constructive, then we don't want your input." I truly hope for the best for you and mother.
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Your Mom is very lucky to have you in her corner. You sound terrific.

I'm not that well versed in all the possible causes of memory loss which as I understand can include hopefully for your Mom a simple medical fix, or maybe more peace in her life.

My husband's journey started 14 years ago with a neuropsychologist. After several non-physical tests such as filling out a questionnaire, drawing a clock, and a verbal memory test, that doctor suggested that my husband had Alzheimer's disease.

We then went to a couple of neurologists. One drew fluid from his spinal. My husband started taking donepezil and memantine. Two years later he participated in a clinical trial with Georgetown University Medical Center.

The trial lasted about 4 years and turned out to be a failed monthly infusion of a study drug. During that time, my husband received periodic interviews (so did I), he also had cognitive tests, and yearly MRI's. I was told that over 4 years the MRI's showed stages of his brain shrinking.

About 4 years later he started to sleep a lot. He'd take a nap after having had a nap. And he was prescribed sertraline (Zoloft). As an aside, he has no side effects. It helped him be more alert and he sleeps at the proper time and well.

I am 70. The wear and tear has me forgetting and loosing things, I believe, more than I would've if I hadn't been a sole caregiver.

May I suggest some tricks [I think what younger people call (Lifestyle) Hacks], that have made daily living more calm and may help your Mom.
- I now tether my keys to my crossbody bag. My red tether is long enough so I don't have to detach it to reach the door lock or our mailbox, and best of all the keys can slide to the very bottom of my purse and can still be easily fished out by pulling on the tether that's attached to the ring between the strap and the purse itself.
- Paperwork is kept in the order of importance or time sensitivity in a little (6 slotted) tiered desktop file sorter with post-its reminding me of the next step if, for example, I need to wait for a reply or have to make copies. Standing up on the desk is a great reminder. At bedtime my brain isn't rehashing what I have to remember.
- My checkbook has duplicate pages.
- I still like to use the mail, bills are paid immediately. Of course autopay may be better.
- The interior of my metal front door has a powerful clip/magnet for outgoing mail.
- Also, I've posted a little stickynote on the interior of my front door that has a check list that reads: Cell phone, Credit Cards, Wallet, and Keys (although everytime I hangup my purse for the day I check that I've got everything).
- Sometimes when I'm extra worn out I jot very brief notes during phone calls, even with friends, to remember the next time we speak to ask about a complaint (like an aching knee) that they may have reported to me on a prior call.

I can just about do w/o these hacks but with everything else, why should I? Anyway, I realized we all use one thing or another at every stage of our lives to make life easier so what the heck.

I realize your Mom's situation is more serious, but I hope that something here was helpful.

Btw, I joined one of the several caregiver support groups at IMCC Insight Memory Care Ctr. Conversely, I've told those caregivers about this very helpful "Aging Care forum" as well.
From time to time IMCC offers virtual presentions on different dementia related subjects. In two days the discussion is entitle "Normal Aging v. Dementia". It's free. I hope it's okay that I mentioned this.

Best of luck to you.
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Absolutely, get another opinion. My mother had "memory problems" for a few years before my dad died. We had no idea (we did not live near them) that she had such issues until my dad died. He had obviously been rationalizing her situation and covering for her. When he died, she went downhill, mentally, very quickly. It took three months of doctor visits, testing, two hospitalizations, in-house rehab, and a short time of living with us for us to discover that she had a UTI. There were no physical symptoms of the UTI, only declining cognitive abilities. Wow. She eventually got better, but still has some cognitive issues and memory loss (for which she does take a memory pill prescribed by her neurologist). She is now living in assisted living. She has no memory of the months she was so ill after my dad died, and this is a blessing because she would be horrified and mortified of her behavior. It is amazing to me that no one (including us) thought to have her get a urine analysis. We know the UTI is not the cause of all of her problems, but it really helped getting them under control (she gets regular U/As now), but the memory pill, time, and vigilance on UTIs have been a great help.
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Go through all of her medications and check the side effects. My mother was diagnosed a while back but only had real problems with memory when she had a UTI, Unfortunately, after she passed last month, I saw some reports coming out that certain medication combinations can cause a misdiagnosis and severe memory problems if they are on these medications for a long period of time. My mother was a diabetic with neuropathy and taking Gabapentin. This is one of those drugs that can cause memory problems and behavior problems as well after a long period of time taking this medication. So, my advice is to check all the side effects and maybe consult with another doctor that may specialize in adverse reactions to medications. I wish you and your mother well. I pray your journey takes a better turn than mine did. Good luck.
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