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

@judimahoney
I guess it all got fuzzy when he was referred to the neurologist by his family physician, her thinking it may be Parkinson's. Lots of tests and time to discover the hydrocephalus.
I think any other diagnosis may have gotten lost in the mix.
Ha, I just remembered that the neurologist said depending on how long the spinal fluid was sitting on top of the brain affects how much cognitive recovery there would be.
But he got better and the last year and a half he had been degrading. All they can do is medications I guess.
I think I need to bite the bullet and all at the next appointment what is going on.
Recently I asked my husband if he's noticed the decline and he got pretty upset. Said he was just fine. I said, do you realize you are watching the same shows over and over again. He told me eventually he realizes he seen it before. 🤷

@labrown
Yes, this is what I need to do.
For my sanity, if nothing else. Thank you!!!

Because this horrible disease called dementia is more and more prevalent, I'm just wondering why we can't choose in our health directive while we are healthy and of sound mind to choose end of life medical assistance if we ourselves ever get to what I would call a "terminal" state of dementia - because we've all seen the progression and it is so sad to see someone go on and on for years not being able to function at the most basic levels and not knowing who they are or their family, and as we all know, it ain't gonna ever get better. Then, ending up in a wheelchair in a total daze for months, or years before they pass on. I'm wondering if maybe somewhere inside all that blankness they just want to move on... this may sound harsh but I'm talking for myself here.

@oneputt
I understand your thoughts totally.
My husband and I have discussed this as we don’t want to be in a “terminal state of dementia” for years.
In researching states where “end of life care” is available, a doctor has to access that you have an illness where you will pass away in 6-12 months. Well, with dementia/AD, how long someone will live is not easily determined. When the person is at that stage, moving them to a state where this is available would also be a challenge.

Yes, absolutely, make a plan for getting your comments to the doctor a few days ahead of time in the future. Most of us are on a long journey and if it didn’t work out for this appointment, there will likely be another chance.

What works for me is I write a few things down every month or so, with dates. I note what has changed, things he remembered, what went wrong, what was fun. Then a week or two before the appointment I make the highlights from my “Caregiver’s Journal” into a note to the doctor. I’m able to use the MyChart portal for this but it should work with a paper letter if you can mail it in a few days ahead then call to make sure the office staff got it to the doctor.
My husband’s doctor appreciated the short note in MyChart and thanked me for it. The journal and note idea came to me from a great friend who’s a pastor and former nurse.

@calispike By now, you've been to the doctors I'm sure since your post was a few weeks back, however, your question about reaching out to the doctor - when I noticed my husband's memory loss, I sent a note in my portal to the primary care doctor. I was told by the office, since my husband is also a patient, the note really had to be done through his portal, since he's the patient. So I went into his portal, and sent the note, letting the doctor know a short list of what was going on. I also told her that I was worried that he might take the boat out, have navigation problems, and/or got lost, etc., I also shared that we had to move out of our house for mold. Could that have contributed to the memory loss? Deferring it possibly to some other medical situation, that, in the chair that day, seemed a bit more palatable for my husband than what later resulted in an MCI diagnosis. I'm sorry your husband was crushed. Sometimes doing something right, feels oh, so wrong, but we love them, and want to at minimum, get a diagnosis of what we're dealing with so we can help treat it early if we can. At least, that's what I kept telling my husband, in the chair that day. This isn't an easy journey, first with the disease itself, and then the denial of our spouse and/or partner who is experiencing the memory loss.
Best, Karla

@judimahoney You are correct Doctors typically have 7 min per patient to evaluate, diagnose and treat so a one page chronological summary with all the pages attached might have worked better.

I agree with the above. I like the detail Judi Mahoney took with her to the doctors and the "chronological summary" @calispike mentioned as what I found worked for me, was that well-organized summary with bulleted one-line information that described my husband's changing behaviors. That way the doctor read through it quickly, and I was able to clearly and quickly articulate within the limited office visit time what was taking place with my husband.
Best, Karla