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So if I am correct you are not yet finished, and haven't yet had the final read out of all testing by the doctor? You still have the MRI to go.
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.
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heidiann Mar 2022
Hi Alva, as always - thank you so much for your kind thoughts and your concern. 🙏🏼

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
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You can't cure congestive heart failure or arthritis, or deafness, or myriad other ailments that go along with getting old, but you don't just cover your ears and go "lalalalala" in an attempt to make them go away. You treat them. With CHF you use medication, with arthritis, you use medication and a walker or another assistive aid, and with deafness, you get hearing aids. With dementia, you learn how to cope with it using various techniques.

Information is power. Why would you not want to know what's going on?
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heidiann Mar 2022
Yes, I fully agree that information is power. This is main reason why I initiated this whole process. I wanted to be as proactive as possible. So it’s not that I DON’T want to know, or that I dont want Mom to know at all, but it’s about whether Mom needed to know *all* the details *at this point* if we’re not sure of if it’s still in early stages*. I maybe should have clarified that. 

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.
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If she has dementia or not is not up to you. You did the right thing by bringing her to the doctor. Early dementia is difficult to diagnose. It may not be much different from the normal moderate cognitive decline that everybody experiences in old age. Dementia can not be diagnosed with an MRI, but it will rule out a brain tumor or an old stroke. The best way to diagnose an incipient dementia is by a neuropsychological test performed by a neuropsychologist. Even without any tests, dementia will emerge with all its characteristics within a couple of years. Dementia is a progressive and incurable disease. Once it begins, nothing will stop it. Some medications used at the beginnings might slow down the progression of the dementia a little bit, but it won't cure it.
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heidiann Mar 2022
Thank so much for your input. It’s really helpful as I try to navigate and educate myself on this very complex and nuanced topic. Mom already did go through the cognitive tests but the diagnosis was characterized as “unspecified”, plus the testing was interrupted - which meant the Neurosych had to put a disclaimer in about accuracy of the results. He also suggested further evaluation to see if there was a reversible cause. I guess that’s where the memory meds came in. It was me who requested an MRI - my thinking was that we could maybe see if there was evidence of stroke (she was also having headaches which concerned me - her mother died from a blood clot in her brain). But I am now starting to understand that if it’s early, it will be difficult to diagnose. So if nothing obvious comes up in the scan, then I now know we just have to wait it out. Xx
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