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. 💕🙏�
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.
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.
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.
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?
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?
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!
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!!
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.
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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