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Deja vue for me...I was not prepared for the first Neurologist visit....and I had know idea he would quiz me in front of my wife...
After that horrible experience...I got a different neurologist...
This time I had two phone conversations with them prior to our visit...
So, same advice repeated...talk to them privately and discuss your observations and ask then to explain their process...
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Flamingo65 Dec 2019
That didn’t help me the doctor told him I was the one who wanted him evaluated and now I am out of house due to my husband’s explosive behavior!!!! Especially on way home from appt.
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We often will discreetly hand a note for the doctor to read before coming into the room with mom. It works well. My guess is that they are used to this. You can call ahead and talk to his nurse about how best to do this if you like the idea. This is what moms doc suggested.
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Prior to appointments I sent letters to primary care provider and a detailed letter to the neuropsychologist who tested my mom. I encourage folks to send doctors written observations. Just a short paragraph introducing yourself as spouse, adult child, etc. and then write the observations in a list of numbered items. This makes it easier for medical professionals to read. Avoid long, rambling paragraphs.

Example:

1. She routinely confuses the TV remote and the phone, then gets upset when the remote won't make calls.

2. She can no longer write a check correctly...puts the company's address where the name should be.

3. Her neighbor called me to report that she rang his doorbell at 2 am and said she was ready to go to bingo.

BTW...all of the above true for my my mom.
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Flamingo65 Dec 2019
I have repeatedly written secure messages to my husband’s VA mental health doctor, and neurologist. Having big problems with both!!!!!
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Your husband’s situation sounds exactly like mine! At the appointments before he was diagnosed with cognitive impairment due to Lewy Body Dementia (LBD), the neurologist mostly asked me yes or no questions. I, too, did not want to volunteer too much information in front of my husband. When I did once about navigating I never heard the end of it!
It is important to get a correct diagnosis because some medications, sedatives, for example, can be very problematic for certain kinds of dementia. My husband was diagnosed at Mayo Clinic following a reaction to anesthesia.
I think the answers you have here from others are really insightful and helpful. Good luck to you!
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If this is a new doctor, first appointment with the neurologist he or she is likely going to ask for your input or observations/concerns at the appropriate time anyway. I hear you on not wanting to rub it in hubby’s face the things you witness him doing but since you have had these open conversations with him maybe offering one or two of the major things or even a general area “ he seems to forget things more but I’m not sure if that’s disinterest, distraction (ADD) or just me” Broaden it a bit to give him an escape to save pride while clueing the doctor in on some of your concerns. A good doctor will see the hesitation to say too much but concern and find a way to get more if they really need it but I agree with others that encourage a neuro psyc exam just as a baseline even if nothing else. I wish my mom had had one prior to her stroke but she has had 2 since the stroke and it has helped us help her as well as shown improvement from original as cognitive stroke stuff improved. They would be able to weed out more if she had had a baseline pre stroke though. Hopefully this neurologist will suggest this testing and be able to present it in a way that doesn’t feel as threatening to your husband as it might without the possible benefits it could provide. My experience has been that focusing on the positive positives that could come from the test or simply maintaining the benefits of having a baseline for the future wether it’s for ADD or autism now or something else in the future are well worth the time. This test can simply direct the patient to areas they could focus on to refits their brain too or keep it sharp, it isn’t a right or wrong type of test that you pass or fail. At least that wasn’t the way results were presented to us.
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Lymie61 Nov 2019
Oh and yes they can make a diagnosis without your input but there will be an appropriate time when getting that input will also be helpful in the diagnosis and or treatment.
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I am sorry, but I think dishonesty isn't right between you and your husband right now and think you should be honest with the doctor, but ONLY AFTER being honest with your husband. Make your list of things that concern you. Go over them with your husband. He may deny them all. That's fine. Just tell him that you understand, but that these things cannot be ignored, as he may get help if you are both honest with one another and with the doctor to the best of your abilities. He is worrying and going into paranoia, and I would be too if someone was skirting around the truth with me, and not being honest. What is he to think? And if there is any cognitive failure, he will think the worst almost for certain.
Please be honest. Tell him you are being honest. If he says NONE of that happened then tell him you thank him for sharing his own perspective with you and you will consider all of it.
Whatever you decide to do you need to make an honest, short, concise list for the MD.
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Monica19815 Nov 2019
W have talked about everything having to do with his evaluations...even the "what ifs..." We have discussed making certain any diagnosis is correct by having the neuro rule out other possible causes. I stressed to him the critical importance of his taking the tests seriously and trying his best to succeed. I assured him that, if he does get a diagnosis, I will love and support him and make our lives as fun as possible, even if we cannot do the things we used to do. When I tried to discuss with him things I have noticed that concern me, he makes excuses or denies them...or says "And I thought I was getting better." But I will not sit in front of him and tell the doctor everything that concerns me, so that he has to hear his difficulties out loud in front of another person. I think that would make him feel SO bad, and probably angry and suspicious, too. So I am making my list and mailing it to the doctor, along with a list of all the loss my husband has suffered in the past 5 1/2 years (divorce, multiple deaths, health problems, loss of hopes and dreams for retirement, etc.) that may have contributed to whatever is going on.
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Actually, the neuro can't talk to you unless he allows her to under HIPAA law.   A good neurologist will send him for testing, but he can refuse to go and my guess is he will refuse.   Let him talk to the doctor alone, he may be more open with an MD in a private setting where he's not afraid you will get upset.
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Midkid58 Nov 2019
Actually, IMHO, the HIPAA law is pretty poorly carried out when it comes to family, ESP spouses.

MY DH has had multiple health issues in the past 13 years and I have been 'in' on ALL of them (except the psych doc b/c I FORCED him to get some help and he would generally come home and tell me what went on in sessions).

If DH had a cog eval (and I am sure that is in the picture in the next 10 years) he wouldn't care if I were there or not or had been 'signed off' as being OK to be involved.

It seems to be a 'rule' that is fairly loosely followed. I went with my FIL to a LOT of drs appts...and I KNOW I wasn't on his "ok" list. My daughter came with me to several cancer dr appts and she wasn't on my 'ok' list either. Nobody ever said a word.
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Different strokes, indeed. There is absolutely, not one single solution for everyone.

What type of major neurological disorder was mom diagnosed with, Piper?
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ExhaustedPiper Nov 2019
Initially her neurologist called it vascular dementia but after the testing the diagnosis was major neurological disorder of mixed etiology. It then went on to elaborate on the contributing factors. My mom's entire medical file was reviewed in conjunction with her test scores.

My mom has chronic small vessel disease and other vascular issues and history, so in her case it's mainly vascular. However it was enlightening to see how other factors have contributed.
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Neuro psych exams are said to be grueling for those with dementia. My mom never had one, she would have never been able to complete it. The doc diagnosed her with dementia of the Alzheimer's type. That was all we needed to know gave us direction on how to proceed. Some will want the Neuro psych exam, but is it necessary for our loved ones to have one. Most don't those that do are definitely the exception. The exam will not diagnose the type of dementia, there are more than 70.
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ExhaustedPiper Nov 2019
Well my mom was diagnosed with Major Neurological Disorder and the test wasn't too grueling for her. And the testing was extremely revealing as far as her specific deficits. The care recommendations were then tailored for her specific needs.

For some this kind of information is valuable, in other cases like your mother I guess it wasn't needed. Every situation is different.
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Hi Monica 19815- Have you developed a sense about the “why?” Of your situation?
For instance, do you need to know why husband exhibits certain behaviors or is it more important for you to know why the changes in his brain cause particular problems?

Are you keeping a record, for yourself, of what you see that concerns you and the dates, time of day, and length of time the episodes occur?

Will the neurologist respond to phone calls from you? Might you ask her if she would consider a baseline psychiatric/psychological assessment a worthwhile addition to developing a meaningful profile for managing his care as circumstances move forward?

It seems to me that the line between maintaining client planning and self management and assuming more and more responsibility as caregiver is a very fuzzy, messy, gray area, with caregiver typically being in the more difficult and awkward position of the two.

If you see a NEED to gently take over the reins based on your observations of your husband, ask yourself if what you are considering is based on your husband’s safety, comfort, and overall welfare, then make your decisions accordingly.

If you are acting out of love and respect, your efforts cannot go far wrong.
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Monica19815 Nov 2019
Thank you SO much for your reply. If my husband indeed does get a diagnosis of cognitive impairment there is SO much that must be done to prepare for our future and the future of his 92 year old mother for whom he is solely responsible (no brothers or sisters). Our home is not now conducive to housing someone who will have physical and mental limitations. We have 3 vehicles that I do not even know how to drive. If my husband does NOT have cognitive impairment that will cause him to decline, I do not have to plan for that future. If his symptoms are due to ADD or HF Autism or depression, we need to address the cause, work with it and move forward. I have no support system (family) near me to help me so knowing what is going on with my husband will help me plan for the future.

I do make notes when I notice something unusual in him. I did start a letter to his neuro, which I will send asap. One huge thing that has become more apparent in the past month is that I have to remind him of things over and over and over again before he will take action...like getting his car inspected, clipping the dog's nails, fixing a leak in a gutter, etc. This is becoming worse lately but, again, I ask myself, is it normal for his age? Or is he just not interested in any of those tasks so he forgets to do them? He has so many symptoms of HF Autism...I do not want him to be misdiagnosed with cognitive issues if that is not the real problem!

I have gently taken over the reigns with many things and he is more than happy to let me do so. Less for him to do! If he can go out to the garage and work on his projects all day, he is happy to do so.

I just need to know what is going on so I can start planning the future. And it was not even me who even considered dementia as a possible cause... it was his PCP...and I was shocked when he tested him in-office and referred him to a neuro.
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The neurologist can order a test called a neuro-psych evaluation. It is an objective test and takes about six hours. It can be done over two days. Here is a description of the test:

https://practicalneurology.com/articles/2016-july-aug/a-primer-in-neuropsychological-assessment-for-dementia

You do not have to give input as the testing scores will speak for themselves. Just ask the neurologist to order the test as a baseline.

My mom got one of these tests after her initial MME test indicated impairment. Those short tests like the MME that are done during an appointment are mainly screening tools, the neuro-psych eval is much more in depth and they can not be fooled.

It would be a good baseline for your husband whether he meets the criteria for dementia or not. Oh by the way, since the DSM-5 came out dementia is now called "Neurocognitive Disorder" and it can be major or minor depending on the test scores.

Good luck.
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I go with my Mom to her Dr apts, and they ask lots of questions of her, and she answers with HER version. And I sit off to the side and practice my "eye roll", and luckily my/her Dr gets it. I do correct some things she says.. but as nicely as I can.."you fell last week, remember?" I am also about ready to write the note to our Dr.. but it may be easier for me as we share a Dr and he has known me for about 30 years! And sometimes you just have to bite the bullet and tattle on them. My mom came home from my Aunts a few months ago in terrible pain, we literally picked her up and went straight to Dr. My Aunt had told me she was taking WAY TOO many Tylenol,, and I totally outed her! Was she upset? Yes,, but no one should be taking 20 Tylenol a day! Luckily she got over it, and we got home PT. sometimes you just have to do what you have to do, and let the chips fall...
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Monica19815 Nov 2019
Oh, yes, the "eye roll"...I do the same, lol!! His PCP (we have both been going to the practice for many decades) knows what the eye roll means, thankfully, and nothing else needs to be said. I have been keeping notes in my phone since the last neuro appt. of things I have noticed, things that have occurred. I could send his neuro a letter. Or I could be brutally honest at the appt. and lay it all out. Sigh. It is the not knowing (no diagnosis) that is so hard.
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Most Doctors have "Patient Portals" and you can communicate with the doctor before an appointment.
Note your observations in this manner.
Be concise but give details if you can (If this makes sense)
Focus on the main concerns that you have.
You can also ask if the doctor would talk to you after or before the appointment. This might not be possible given time restraints.
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Monica19815 Nov 2019
That was the first thing I checked and she is not one of the physicians who accept communication via the portal. She is a neuro at a large, reputable teaching hospital.
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I agree with Glad.

When you send the letter, include details like the time of day, day of the week and any significant things that occurred just prior. You may see a pattern of occurrences in the afternoon or evening, the day after an outing, if he has gone too long between meals, if alcohol is part of your lifestyle, after meeting an old friend, etc.

I worked as a MOA for years and often passed notes to the doctor prior to appointments. It is best if you can get the letter to the doctor at least a few days prior to the appointment, to give them time to review it.
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Send the doc a letter or a fax before the appointment with a cover sheet stating that it includes information you think is important but do not want to discuss in front of your husband. A neurologist can diagnose some types of dementia. But many types are pure guess work an not known until after death and only if an autopsy is performed.

The guesses are based on behaviors and other factors.
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gdaughter Nov 2019
For us dementia slid in under our noses but it took an event (vacation) that triggered with a change in environment enough to notice...and me getting a call from the sibling not believing I thought our mother could travel...which led to a review of some primary dementia symptoms (having the list was nice), and my realizing, OMG, that yes she had pretty much every one I could give an example of. I documented this as succinctly as possible and faxed or mailed the note to the family medicine doc they saw and who knew me from going with them...love him....he advised me to stay home the next time folks had an appt and he did mini mental...and he was shocked himself because mom could play the role so slickly it was never evident. When we ultimately wound up with a neurologist appt, they had us fill a form out related to observed behaviors as well.
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