A few have asked that I keep them updated on the progress of my Mom’s journey after having cognitive tests with a result of “Unspecified Major Neurocognitive Disorder” so I thought I’d share our experience we had at the neurologist yesterday. (For reference, here's my intitial post: https://www.agingcare.com/questions/mom-diagnosed-with-dementia-but-im-not-convinced-and-i-have-so-many-questions-472835.htm)
Firstly, we had an amazing Dr. He was very personable and took much more time listening to her and explaining than her NP ever has. So that immediately put both my Mom and me at ease. My Mom did all the talking but avoided any mention of memory concerns. When the Dr asked her what she was visiting for, she just said headache was her only issue (background: when I suggested we see neuro/go for MRI, I framed it in such a way to imply I was more concerned about the headaches - which is true, actually - and we could check for memory issues while at it. She fixated on headaches b/c I think she is both embarrassed and perhaps in ‘denial’ of there being memory issues). Finally the Dr probed about memory so she acknowledged it and then told him some of the issues she was having but that she wasn’t concerned. When it felt appropriate, I asked if I could add my input: I explained there had been concerns expressed around her memory (basically her husband constantly telling her about her “bad memory”, though I couldn’t say that b/c he was right there), however I expressed didn’t feel it was anything different of anyone else of her age and mentioned her stress and depression. He asked questions like: does she get up and walk around confused in the middle of the night, does she have to be reminded to shower, does she not remember what things are for - e.g. keys. (These were all a ‘no’) and then he went through some general tests with her (she didn’t do well on simple math and subtracting in her head, but she gets very nervous when doing any math, she only went to the 9th grade and has very low self-confidence with this and tests in general). After the questions were done, he went on to explain “pseudodementia”, not dementia but symptoms that mimic it and said since she scored highly on the PHQ-9 it’s could be that. Although I’m not sure if the Dr was just trying to soften the situation. He then also explained that MRI could show some changes in the brain and that some brain shrinkage is normal but he also added that he has seen patients with a very large brain that have major issues and others who have had significant brain shrinkage and they were sharp as a tack. So the message I got from that is that it’s not that straight-forward which I understand.
My gut feeling when I left yesterday was that she'll be okay. But today I woke up in a panic. I’m not sure if it’s just nerves but I am having all kinds of second thoughts. Should I have even started this process?? I know that if it turns out to be *actual* dementia of some sort, it can’t be treated so would this have all been an exercise (inadvertently) in making my Mom worried and potentially making a bad situation worse? Should we just have left well enough alone? Am I misunderstanding the whole process? The reason for going through with the initial cognitive tests was b/c Mom said she was tired of hearing her husband say how bad her memory is (he told me multiple times too) and I told her it wouldn’t hurt to have it checked out and anyway, it would likely “prove him wrong” and she would feel vindicated. I truly didn’t expect she would get the result she got from the cognitive tests. But I guess - to an extent - he got me subconsciously worried about it, too. And I would have felt I was being irresponsible if I ignored it altogether. The last thing I want is for Mom to feel like something is terribly “wrong” w/her and it make her progressively worse if there is something there.
So I guess what I’m asking is - if there’s nothing to truly treat dementia anyway, have I opened a can of worms?
Heidi, I well remember you, your Mom, and your direct and intelligent route with this whole thing and I have often thought of you and wondered how it is going. Thank you for this update.
Number one this question is more for your Mom. "Would you WANT to know. Would you want us all to know, no matter how unpredictable the disease is, the course, would you want to know." For my brother the answer, after the incidental finding of his Lewy's when he had had a car accident was "yes". He said that while he was very sad about what he likely had, while he was afraid where it would take him, he was relieved to know why he was having all the symptoms he had and why he saw the world differently than we "normal folk" did, different than he used to see it.
There is nothing, to my mind, worse than not knowing.
With all the research you have surely done by now you know what you can know, cannot know, might know, might not.
The husband, no matter his rather brutal approach, has been worried. Likely your Mom has. You have. Now you have what answers there are.
And with a FINE DOCTOR, and how often does THAT happen.
So you are on a journey to know if there are any signs. Or not. You can be more relaxed in knowing either way and can set up your lives to adapt.
Have you seen the series This Is Us. Follow a whole family from birth through death with flash backs and with three children, triplets. So much to say about family, about who we are by genes and who we are by being raised. In the last two seasons the aging Mom gets diagnosed with early Alzheimer's and it follows her journey from perspective of her family's reaction and of her own. I suggest it for you.
I would want to know if this were me. I wouldn't take medications; none are proven. I would simply want to know the reasons things were "happening" to me and the reasons I was seeing what I was seeing. I would also want to know if it was ruled out and I was simply reacting in a bizarre way to a rather cruel husband and the vagaries of aging. I would want to know.
Ask your Mom. Do you want to know? Or do you want us to GUESS every single time a word comes out wrong, every time your balance is off. Would you rather we guess?
To me there isn't a single nanosecond that I would second guess this one, but that's me and I can't stop your second guessing. I can tell you I think it is a waste of precious time, and sad you would do that to yourself.
You have a wonderful doctor. There art thou happy, as the priest says to Romeo.
You have a whole family approaching this difficulty together as a united force, all there. THERE art thou happy?
You will be able with what medicine can offer today to set in place if need be the things that must best be set in place. There art thou happy?
Please let us know: Is all testing now done with both MD and MRI? Is there a final diagnosis and is it that this is all at present uncertain? Or is there more to go.
And again, thank you for taking us on this journey of one family facing what may or may not be at the very beginning. Thank you for your very intelligent reaction and response and support of your family.
I think you are all just great.
So just to clarify - we haven’t had the MRI yet (that’s this coming Friday) this was the first new patient consultation with the Neurologist. I know it didn’t really produce any definitive conclusion but thought it might be useful to share the experience. Especially since I hadn’t heard of “pseudodementia” (I guess in theory, I must have known it was a “thing” when I’d originally speculated that Mom’s symptoms could be depression-related). And also to share what a great Dr we had. He even offered to call me on Saturday to give me the results b/c he knew that he would be leaving on vacation for a month the following week and didn’t want make us wait. He went above and beyond.
Thank you also for sharing more valuable insights from your brother’s experience. What you’ve said really puts it all into very clear perspective for me. It obvious that there is no way I could have pursued it any differently and nor should I want to. I always will want to know everything. And yes I think Mom will want to know but I think if we can confirm it’s early stages, I’ll tread lightly and keep an eye on it and just try to keep her in a positive headspace.
Re: her husband. Hmm….Yes, maybe he’s worried but his behaviour lately has been confusing and frustrating at best. And I now think he’s partly the reason for my questioning myself about all this. Last week, he told Mom that I’m “poking around to find something wrong” (when he knows full well it was HIM that stirred up the concerns by constantly telling me and her that her memory was getting “really bad”). And a real doozy: at the Neuro yesterday he sat quietly though the whole consult, asking no questions and as we all stood up to leave, he said to Dr : “can I have 5 mins with you alone?” Mom was mortified and Dr tried to tell him he had other patients but he persisted. He then refused to tell us what he talked to the Dr about. Later telling Mom that he just wanted the Dr to know that it was me and not him that “arranged all of this”. I have no idea what the purpose of this was. Perhaps deflecting from the issue of him gaslighting her and putting a strain on her mental health? Or trying to make himself look good and me bad? Or maybe thats not what he said. Maybe he wanted to play the concerned partner. I don’t really know. But I do know that move undermined Mom. It’s one of his go to toxic traits. “I knew he was going to do that”, she said when we walked out of the clinic. It upset her so much, she was stressed for the rest of the day. He’s got a really clever way of making us both feel really bad. Oh also, he’s not attending the scan. He felt it was more important to visit his brother two states away (who, to be fair, has just been diagnosed with cancer) - he didn’t really see being there as support for my Mom during this scan as something that was necessary since he “can’t go in anyway”. And oh he also doesn’t know when he’ll be back. 🤷♀️
Thank you for the film suggestion. I have not seen this and it sounds great - just the thing I need right now! I will watch it this weekend. And I will also be back to give you another update after we get Mom’s results.
All the best to you xx
Information is power. Why would you not want to know what's going on?
We also don’t have an exact diagnosis - it’s “Unspecified” - and her NP didn’t really do anymore to investigate, just prescribed meds (I took the initiative to order the MRI, not her NP) so I was questioning whether it was something that needed more investigation at this stage (other than medication and wait and see) I just don’t know what was the right thing to do….. I’m trying to navigate this on my own and learning as I go.
What I do know is I want is for Mom’s health to be cared for in every way possible way while also trying to protect her mental health as and not let her worry every day that there’s something wrong with her (she worries constantly already and I fear it will make any condition worse).
It’s a delicate balance to strike in a very precarious situation.