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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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There are many reasons not to take pharmaceuticals when we're ageing and our brains are heading into brain disease territory. Memory issues are not a normal part of ageing. Just because this 'seems' normal, because it happens to most folks, it is not.

I'm sure others have said that an MRI is next, but either way, the drugs aren't going to make a stitch of difference, they will in fact speed up any brain damage.

As soon as my mum's abusive husband died, her MS progression stopped in its track and hasn't progressed since. 7 years later.

The truth is there's not much medically that can be done to help your mum. I'd look into alternative therapies and improving her diet. Get her to drink more water and cut her fat/refined sugar intake, eat more organic fruit and vegetables and if possible, get away from the toxic health damaging abuser.
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lealonnie1 Mar 2022
There are many reasons TO take pharmaceuticals when we are aging, too. Your claim to be a 'dementia healer' and other comments to 'drink more water & eat more organic fruits & vegetables and less sugar' are pretty useless. My mother had progressive dementia, the real thing, and never took 'pharmaceuticals' in her life, ate healthy foods, no booze, no cigarettes, cooked meals from scratch, no desserts, did everything she was 'supposed' to do and STILL got dementia. All the 'eat right and exercise' hocus pocus is just that: hocus pocus. Genetics play a HUGE part in who winds up getting diagnosed with dementia/Alzheimer's later in life, regardless of what they ate!

Furthermore, memory issues ARE a part of normal aging! I have yet to meet ONE elder who's memory is as good as it was when they were 30-40 or 50! Fact. From the Alzheimer's website directly:

"Almost 40% of us will experience some form of memory loss after we turn 65 years old. But even if we experience memory loss, chances are still unlikely that we have dementia. For the most part, our memory loss is mild enough that we can still live our day-to-day lives without interruption.

Signs of memory loss as a part of normal aging
You're unable to remember details of a conversation or event that took place a year ago.
You're unable to remember the name of an acquaintance.
You forget things and events occasionally.
You occasionally have difficulty finding words.
You are worried about your memory, but your friends and relatives are not."

There are plenty of medications that CAN and DO help elders with their medical issues & many times where anti anxiety meds and/or anti depressants help an elder with dementia A LOT. To suggest that improving her diet at THIS stage of the game is going to do more than medications is even sillier than anything! Medication is not evil or the 'devil' and everyone should rely on their DOCTOR'S advice with such matters.
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Heidiann,

You should gather some information on gaslighting for your mom.

It sounds like that is what her husband does to make her question her own sanity.

Good news that the brain scan was clear, praise The Lord!
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Heidiann, all the best to you and Mom!
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Hi everyone, 

I’m sorry for not posting an update sooner. After Mom’s appointment, all of the emotions from the past few weeks (actually, months) came to a head and I needed to time to decompress. 

As I hoped, the scans came up all normal which was a huge relief. I KNOW that this does not rule out dementia, but at least I feel a bit better knowing that there is nothing more sinister at play (tumor, stroke etc) at this very moment. Also, it seems that the accompanying headaches are a pinched nerve so it’s a relief to have some clarity there, too.

In the end, the best result out of all of this is Mom feeling that there’s nothing “wrong” with her after all, along with a sense of vindication after being made to feel crazy by her DH.

Whether more progressive dementia symptoms rear their head over the passage of time is another conversation, but I’ve decided this is a conversation she does not need to be privy to until its no longer tenable. I want her to live her life as normal as possible - without any worry - for as long as possible.  

In the meantime, we will continue with the anti-depressants and see if things improve. I’m also working on getting her to seek talk therapy, encouraging her to get involved in more mood lifting activities and trying to get her away from the DH as often as possible. And I’ll just continue to observe.

So, for now, I’ll close the Dementia chapter and I’ll bookmark the page in case I need to revisit. I won’t leave this site entirely as there are many other things that I’ll be needing advice on (legal, future care etc) …. plus I’m sure I’ll need to vent about the DH now and again. And I promise to report back to share any developments should I start to see changes in her condition - either for the worse or the better.

Once again, I cannot thank you all enough for your genuine concern and warm, helpful advice. I’ve learned (and am still learning) so much from this space. Had I not come here, I would not have known where to even start or what I will need to look out for as time goes on. I know that I can’t prevent dementia, but I can at least work on being better prepared for what may come.

There are still some comments I want to reply to individually and I’ll do that in the coming days.

Thank you all again and much love. ❤️
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Llamalover47 Mar 2022
heidiann: Thank you for your update.
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The easiest way to diagnose dementia is to wait a year or two. If it's dementia, the symptoms will then be very obvious to anybody. In the early stages, the disease hasn't been consolidated and particularly lay people, won't notice anything unusual. A psychological diagnosis of neurocognitive disoder is highly suspicious of dementia. There are no laboratory tests that can diagnose dementia at the moment. If it's dementia, it will eventually emerge with all the characteristics. There is no cure for dementia regardless of the type. Medications for memory can't stop the dementia from progressing and killing the patient's brain before the rest of the body.
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My mom got both memantine and Zoloft (plus some others) at some point in her life. At least in her case they were crap and did more harm than good. If your mom is only having mild symptoms, as it seems according to what you say, I wouldn't give her any drug.
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I have worked in cognitive disorder clinics for many years in both Neurology and Geriatric clinics. I am not a doctor, I am a social worker but I have worked in these clinics for around 15 years so feel free to take this advice with that in mind.

I think some type of specialty Memory or cognitive clinic will give you the best comprehensive assessment. These are usually found connected to a Geriatric or Neurology practice for a major University center. I wish I could say that your diagnostic experience was rare but it is not. If you are not seeing a cognitive specialist many general PCPs do the minimum and then just start giving medications. The fact you were given the diagnosis of Major Neurocognitive disorder or "Dementia" states that a specific diagnosis has not been determined. These are catchall terms and do not denote a specific disease. Memantine is a medication that has been approved for Alzheimer's disease and has some benefit with Lewy Body Dementia but is generally used for someone in a Moderate stage of Dementia. Your mom sounds like she is only having mild symptoms based on your description. It is generally a very safe drug, with not a lot of side effects but it has also shown limited efficacy in earlier stages of dementia.

A "standard" cognitive workup usually entails an initial visit assessment (usually an hour to 1.5 hour appointment) where the provider looks at your overall medical picture, does a neurological exam and reviews your medications. They will then often order some basic labs, Neuropsych testing and an MRI. Medicare will generally cover Neuropsych testing only once a year so instead of getting a second Neuropsych opinion, I would take the testing reports you have to a specialist physician and let them interpret what they can from what was done. Our providers like to get a specialized MRI with Neuroquantative assessment that takes measurements of different parts of the brain that have to do with memory. With advancements in imaging, there are now "biomarkers" that can help distinguish different types of dementias, and depending on the findings of the MRI a specialist can decide if advanced imaging such as PET scans or a DAT scan are recommended. They can also help interpret the Neuropsych testing for you and put it in context with the other pieces of information.
A good diagnosis is made up of lots of pieces like a puzzle and it takes an engaged and specialized practitioner to take these tests, the family reports, the psych history, and their own assessments to come up with a good diagnosis.
Good luck
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I do not know all the answers but I would seek a second opinion and perhaps keep quiet about the first set of results - as not to influence the new tests. Then compare notes and go from there. Does not sound good to me - more like increasing dementia which comes and goes and gets worse.
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heidiann: Imho, perhaps your mother SHOULD seek a second opinion physician since her PC physician seemed a bit short spoken/curt in her responses. Also, a geriatric neurologist could give her an M.R.I. of the head, which measures brain functionality. The medicine, Memantine "reduces the actions of chemicals in the brain that contribute to the symptoms of dementia," per Google.
If you feel a physician/specialist was ineffective, it's generally a good idea to seek a second opinion. True story = Last March, my former (and poor) urologist rx'd a medicine that had a rare side effect, pneumonia. It hospitalized me for four days. I sought a new urologist after I was discharged, of course.
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There's a lot of great info here for you, but I will simply add that Zoloft has helped my mom, along with mirtazipine, as she suffers from a very anxiety-oriented dementia, coupled with depression. Mirtazipine was prescribed first, and Zoloft added several years later, but I think the combo may have been helpful from the beginning. An MRI was the first thing her (excellent) doctor did. And blood work, of course. Saw evidence of dementia on the MRI -- as well as minor stroke damage, which was not clinically significant, in his opinion. He DID explain all of this in clear English to my mom. My mom had a difficult life as well, but I believe her family history of dementia was more a predictor in her case than the chronic stress. She also had terrible sleeping patterns (like, very little sleep) in the years leading up to onset.

She has a great internist who is very familiar with dementia/Alz, and to this day, I have not subjected her to neuropsych testing or evaluation. But, due to clear family history, we did not have the doubts about her diagnosis like you do. I think more opinion(s) are appropriate in your case.

One more mention, in the early years, people with dementia will make valiant efforts to cover up their memory loss. Spend time with her and take notice of such tactics.
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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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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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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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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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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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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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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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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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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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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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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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Get her and her husband appointments for evaluation and treatment by a neurologist.
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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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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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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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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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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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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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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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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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