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. 💕🙏�
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).
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.
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.
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.
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. 🙏🏼
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.
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.
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.
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!!
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.
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!
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. 🙏🏼❤️ 🙏🏼
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.
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.
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. 💕
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. 🙏
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.
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?
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.
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?
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.
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?
[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.
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!
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.
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.
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.