I don't really know where we are medically or how to finding out

Ha, commenting to myself.
I wanted to add that I do not have a handle on his medications but need to because I keep finding them here and there.

@calispike This one - the meds - could be the easier one.
If a person is on Medicare and on multiple meds (not sure of the minimum, but it is around 5) there is a service that will make daily or weekly med cards with the pills in plastic bubbles for each dose. Others make strips, labeled for day & time of day. Some independent pharmacists may offer this service. Here is one available online (not affiliated, just providing an example):
https://accupacrx.com/how-it-works/
We used a service like this for my Mom, and it was wonderful - no more arguing about whether or not she took the meds.

The second issue, whether you can communicate in advance with his doc, is yes, but how to do it depends. If he has allowed you access to his medical info, just go on the patient portal and send a message (at least 3 days ahead if you can.) You should not be charged for a "virtual appointment" or "e-visit" - just code it as a question about an upcoming appointment. Explain your concerns as concisely as you can, trying to stick to the most critical concerns.
If you do not have access, you can discretely hand a note to the person at check-in and ask for the doctor to see it before seeing him. Or once you are roomed, excuse yourself to go to the restroom and hand it to a staff member, asking that the doctor read it before coming to the room.

Do you think some of these might work for you?

@sueinmn
He does have a med chart. I'm not sure it is with Neurology. I think it is for his family practitioner. I will look into this. Maybe I can discover a diagnosis.
The med suggestion is terrific. I went and looked after I posted and he is taking 11 different medications, some more than once per day. I would love for this to be a more concise science for me, so I'll look into that first!
Thank you so much for these ideas.

Hi @calispike
So many things you mentioned I could have written; such similar behaviors.
I tried to get info to the neurologist ahead of our first visit last week, and his office wouldn't accept them (stating they could get lost in the mail; lame excuse). So, I brought my folder of info with me that I prepared ahead of time, and gave it to his assistant when she was getting my husband ready for his visit. The neurologist left my packet in his office when he came to see us, and had to go back and get my notes (that I'd spent quite awhile prepping for him), just so we could discuss my husband's medical history (I had to say things like, "The answer to that question is in the packet I brought for you."). Insert angry emoji!
To me that felt dismissive, as if he probably hadn't even glanced at the notes before stepping in to see us. I couldn't help but think, why did I bother putting so much effort into this packet of info if he's not even really referring to the helpful info during our visit?
Perhaps I should look at it from another point of view. I know medical personnel are forced to move patients through their visits quite fast, so perhaps the neurologist didn't have time to read all the items I brought.
If you're interested in what I brought along in that packet, read on:

-Neuropsychologist's diagnoses over the past few years, as diagnosis changed from mild cognitive impairment to frontotemporal dementia (FTD)
-MRI results
-C/T scan results
-pTau 217 blood test results (negative)
-Dementia Association's FTD Symptoms & Staging Tool, the FTD-SST (my husband was mostly at one stage and had several symptoms from another stage, and a few random ones from later stages, so guessing the stages they pass through are not clear cut)
-Dementia Association's Dementia Behavioral Assessment Tool (DBAT)
-The Bristol Activities of Daily Living Scale (BADLs)EP Test
-Summary page of noted changes in behavior and health over the past year (taken from anecdotal notes I take whenever I notice something that is 'off' about my husband, a change in his behavior, actions or personality).
Other than that I just sign up for every free class for caregivers, watch every video folks in the know point me to, attend several support groups and log onto this site daily.
All the best to you. 🌺

@calispike
I had to take over med dosing after I found out my husband was under and overdosing himself.
I now bring him his meds while he's eating breakfast.

@judimahoney
I guess I would like a diagnosis of the dementia. I would be heartbroken to mislabel him, yet he takes two different medications for it and seems to have many symptoms. Yet these neurology appts are follow ups for the shunt. He also had two brain bleeds from a fall.
For all I know it is just his older age.
I appreciate your time and information, both are valuable. Thank you!

@judimahoney
Thanks for this idea. I just became proactive this afternoon...I took a picture of each pill bottle then looked it up on the Internet. I need to get my head wrapped around it so I can be off more help to him .
Thank you for the great idea.

Great idea to pass the information on to the doctor. Most doctors don't look at much before you come in. You could ask the nurse to attach it to the chart (if they still use physical charts) If it is all internet you might ask to have it uploaded with the request that information remain private between you and the doctor.
I sort of interpret judimahoney's experience to say, "be brief." Place your questions and revelations in order of importance.
It's so good that he's happy most of the time.
Best wishes

@calispike
Hi, our only diagnosis came from a Neuropsychologist, since we have no Neurologists in our town (and waited nearly 2 years to see a Neurologist).
Perhaps you live close to one of the Mayo Clinics and he can be tested there.
Take care. 🌹

Yes, communicate with your physician through the office portal regarding your concerns. I do it all the time. It’s very helpful and appointments go so much better.