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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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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 4, 2022
Alva, excellent advice!
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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 6, 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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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 6, 2022
I wasn't even aware that this existed, RR. Thanks for this.
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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 6, 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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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 7, 2022
Well said. Excellent advice.
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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 5, 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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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 6, 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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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 7, 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 7, 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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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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