Anyone felt frustrated with doctors and trying to find a diagnosis?

While I haven't had your exact experience, I have had my share of frustrating experiences with doctors, trying to get a clear picture of my problems.
One at least admitted "I have no idea what that is" when he saw a rash on my leg. Better that than taking a guess and prescribing me some expensive treatment that didn't work.
(The rash cleared up on its own.)

@rew0452 Hi, Becky, I’m Becky, too! You’ve asked a question that puzzles everyone. There really are no clear answers. Ruling out Parkinson’s Disease will be helpful because it does add another dimension to everything. What would be important for you to do is to treat your spouse as though he has dementia . Read through some of the other discussion and get a feel for how others handle a spouse with dementia. Everyone in this Caregivers Support Group feels it’s important to help and support each other.

I’m so sorry you are going through this. I think being in limbo is the hardest place to be because you don’t have a clear path forward. I’m in the same boat with my husband. A year ago Neuropsych said he definitely doesn’t have dementia, but as of a few months ago the neurologist at Mayo thinks it likely IS dementia - just early. But no diagnosis yet - more tests to do.

I think all you can do is to keep moving forward and advocating for your husband like you are already doing. He is fortunate to have you ❤️

@rew0452, hi Becky. Any update? How are you doing?

Thanks for asking. It feels so good to talk to others if only to vent… I guess I’m a little unsure what to do now. My husband is diagnosed with Dementia w/apathy and early Alzheimer’s and worsening gait, balance and walk. He has been on the Exelon patch and now Carbidopa-Levodopa. He seems fatigued most of the time but I’m not sure if it’s from the Dementia, medication, depression or boredom. He assures me that he is not bored. We volunteer 2 mornings a week at our hospital and he will often go to the store with me and we go out to eat occasionally , otherwise at home he takes naps, watches TV and plays Solitare on his tablet sometimes for hours on end. He says he is happy with doing that.
I keep feeling like I need to find something fun for him to do or like I need to entertain him or should I just let him be?
How do others handle this?

@rew0452 are there any senior centers in your area? Many of them offer programs for those with early dementia. They might also have ‘day care’ programs. Now that summer is coming, maybe he’d like to spend time at a pool.
https://pameladwilson.com/ Have I given you this url before? Members have said it’s a great resource!
Members came up with a list of activities that you could modify based on your spouse’s interests
https://connect.mayoclinic.org/discussion/activities-to-share/
Do you think he would be interested in 2-person games like Scrabble? You could have a talk with him and see what you can come with!

His brain is broken, you are trying to not only resolve the issue but make him fit into your mold of what he should be doing.

That will not work, let him be, go about trying to live your life not his.

This is a difficult journey you will need to continue to adapt to his every changing downward spiral.

You cannot make anyone happy except you, stop pushing him to do what you think he should be doing, doesn't work that way with dementia.

Sending support your way.

You mentioned a neuropsychologist- has your husband had the testing done? If yes, I recommend you schedule a return visit of just you and have them show you your husband’s testing answers and explain the details, comparing and contrasting the results with the “norm” for his age. This was totally eye-opening for me. I knew then I had been that frog in the boiling water, time goes by and without realizing it really, you make bit by bit adjustments. The testing also creates a baseline that repeat testing in a future year will provide hard data for the changes. My husband enjoyed the testing- said it was like doing different sorts of puzzles and word games.
As far as activity, I vote with other commenters to just work with what he likes and let him be. My husband, too, sleeps a lot- I read somewhere that the brain realizes something is wrong and attempts to “right it” during sleep. He used to play hours of solitaire, but can’t figure the game now. He likes drives in the country, so we go to drive-throughs (in person restaurants can be overwhelming/stressful)- Dunkin for coffee and a doughnut or Dairy Queen for ice cream or McDonalds for a shake, and then take a drive. A drive makes for easy and good conversation about what you see, memories of what happened at that spot, talk about the landscape, what’s new with the season- here the dogwoods are blooming, farm fields are being plowed. I drive by his old workplace and he’ll launch into a funny work story (have heard them all a million times, but so what- we laugh and laugh).
I wouldn’t worry about keeping him busy, “go with the flow”. We’re here for you.

I’m taken back by your comments dollyme!
His brain is not broken!
I am not trying to fit him into a mold of what I think he should be doing!
I a not trying to live his life for him!
And I certainly am not pushing him to do what I think he should be doing!
How can you even say those kind of things?
Your anger and bitter “support” is hurtful not helpful.

Thank you for your heartfelt comments..our husbands seem quite similar. Your words helped me.