Testing

Have you tried to make an appointment with a neuropsychologist? The wait might not be as long as with an appointment with a neurologist for testing.

@jfkoc said:

"Testing and diagnosis will mot stop the argueing/denial."

+1.

Testing will likely give you some answers about the type/presentation of dementia and confirm the difficulties you're seeing at home. But this information will be useless in the context of convincing your LO that they are in any way impaired or that they need to allow you all decision making as it applies to your household.

Most PWD have some degree of anosognosia. This prevents them from being able to perceive any issues they themselves are having— in their mind, they're just fine. Trying to convince them otherwise with a neuropsych report will feel like gaslighting and potentially cause them to distrust you.

As I recall, it can be hard to find certain specialists in parts of ME. Would it be possible to access testing sooner elsewhere in the state or in the Boston area?

HB

I'm so sorry about the arguing and denial and for the long wait for an appointment. I'm afraid the long appointment wait time is just how it is. I hated it and felt like I was drowning when I was waiting for each of the 3 diagnostic appointments we needed to finally get my DW a diagnosis of dementia.

This is such a long, frustrating journey. Please take a deep breath!

Others are correct. Many with dementia don't realize they have dementia and we all think it's denial. It isn't. So, if you're arguing about that, you can let that go. No sense spinning your wheels there. And, even when you get the diagnosis, he may still be unable to recognize it. I'm afraid that piece of paper might not get through to his already compromised brain.

Though I really struggled with my own denial about what was happening, I also know it helped me so much to finally bring into my head and very sad heart, that I already knew what the diagnosis was even though we hadn't gotten it yet. It helped me begin to let go of thinking I could explain, reason, debate, or argue with her anymore. As folks here say, "You can't reason with someone whose reasoner is broken." It took me a long time to let all of that go and I was never perfect with it. Getting there was so important to how we interacted as she declined. It was easier for both of us.

Hang in there and big hugs.

Cindy

i’m so sorry you are going through this. It is extremely hard —even in the beginning. I felt like I was going crazy as nobody believed me at least two years ag. My spouse also tries to argue about everything with me—just with mild cognitive impair-ment. I saw what was happening to him before any of his friends and even his daughter saw it. It’s been going on for at least two years now. But instead of argue I just gently let things go—btw, It was hard to learn to do that. There are days when I go behind my house and kick a tree when I’m angry or frustrated. Behind the scenes, I was able to visit his general practice doctor and discuss the situation with him. I provided him a descriptive letter of the psychological changes that were happening. The next time my husband went in for an evaluation, The GP prescribed an anti-anxiety drug. We need to go for the next step of testing for dementia, but my husband refuses to go. He also refuses to wear his CPAP. Next step is for me to meet with GP for him to recommend a neurologist to figure out what specifically is going on. wish me luck. It’s like working with a petulant child. However the mood medication made a HUGH improvement. He was a real jerk the first year —full of anger. He is less angry now. But he is self centered like a child. I will be honest with you. Your husband may be nothing like the man you married now. The person I knew is gone. I completely feel for you. You are doing the right thing joining this group. Folks can encourage you and give you resource info. Best of all you can see that you are not alone.

Hi Ed's Mom, so sorry to read about your frustration, it reminded me of what I went through earlier this year. Sorry for my long response below but maybe you or someone else here can benefit from my experience.

I went through +8 months of frustration trying to get my DW into a neuro consult after an MCI diagnosis from her PCP late last year. We're located in So. Cal and I first contacted all the big university health centers (UCLA, USC, Cedars-Sinai) to attempt to get a direct appointment or an appointment with a local neuro doc affiliated with them. What a total beauracratic black-hole waste of time!!! Appointments were made 7 months out and then canceled two weeks before the date or moved many months out farther. I sure hope our experience was an outlier and others are getting great support from these renowned health centers…..

I finally contacted a one-man shop neurologist five minutes from our home and my DW only had to wait a month for an office consultation. He spent two hours examining/ testing my DW, issued lab & imaging orders on the spot for blood (thyroid/ Vit B, inflammation)/ P-tau/ MRI/ PET scans which she was able to complete within 2-1/2 weeks (we got lucky!). The scientific lab reports ruling out thyroid conditions/ vitamin deficiency/ strokes/ vascular dementia/ brain tumors/ etc. and the P-tau and PET scan reports documenting that she had extensive amyloid plaques combined with the memory loss/ MCI = Alzheimer's….bingo!

Amazingly, my DE's anosognosia seemed to take a temporary vacation long enough for her to make a conscious and informed decision to pursue IV therapy (Kisunla). I know it's no cure but she thinks it is and I don't disagree with her. The anosognosia is back but she's still complying with the therapy and related scans (so far) and I have some peace of mind knowing she was able to make a decision on her own to do something about her diagnosis while she still could and hopefully it will buy herself some time.
Bottom line: IMO it's worth the hassle getting a scientifically based diagnosis. I hope you're able to get testing done on your LO Ed's Mom and that they discover that it's something treatable.