Testing, testing, and more testing

JulietteBee

I am so impressed with mom's neurology team. It is a large practice. She saw the neurologist in December. She ordered the neuro-psych exam. Unfortunately, they are so backlogged, their testing couldn't be done before end of March. I requested to be put on their "1st cancelation list" to get an earlier appointment if possible.

She then saw the ARNP in mid-February. He asked her if she wanted to be tested specifically for AD. She said, "Yes." He ordered the tests shown on the attached lab requisition form.

Those labs were drawn this morning. Also, this morning, they called to say an afternoon appointment for testing just canceled & if we wanted it. "Heck yes!" My biggest challenge was to talk mom into it since she had just returned from the lab & the testing was going to be in 1.5 hours. By the Grace of God and after much arguing, she consented. The doctor interviewed me privately for about 1/2 hour to hear what I had been seeing at home and to know if I wanted anything in specific to be addressed. After which, it was mom's turn. It took an hour for her to go through all that was needed.

We now wait for results, but I already feel better, mentally and emotionally. While there is no cure, being able to put a specific name to this vile disease will be satisfaction enough.

Depending on the results from the bloodwork and the Neuro-Psych testing, the ARNP plans to have her do an Amyloid scan.

Pushing to put a name to the face may not be for everybody, I get that. For me, as a family of Healthcare workers, I know the importance of knowing one's family medical history. Mom's brain & blood has the answers my adult child and I will need to have once mom is off the scenes. I could not bear the thought of her dying and taking those answers to the grave with her.

Now we wait! Comes what may, mom is now a willing participant in getting the answers for us. Anosognosia, thankfully, is a thing of the past. All it took was a patient doctor who recognized that "A picture is worth a 1000 words." Once mom was shown how extensive her "White Matter Disease" was, she recognized the magnitude of what she has been dealing with, and what lies ahead.😢

If anyone has any questions about testing, feel free to ask.

H1235

I’m so glad you will have some answers soon. I know some here are comfortable with just a vague diagnosis of dementia, but I felt so much better with a specific diagnosis. My mom accepted her diagnosis of vascular dementia when told by neurologist. She even told me she knew there was something wrong. The neurologist told her she shouldn’t drive, was not safe to live alone and should see a lawyer for DPOA asap and she accepted it. Unfortunately her anosognosia was not over. She told me she was in the very very early stage and did not understand why I was in such a rush with everything. About a year after diagnosis she said the neurologist had made a mistake and that doctors don’t know what they are talking about. She demanded I explain why she couldn’t just live in her house with my sibling and I checking in on her (there of course was nothing that I could say that she would believe). My point is don’t get your hopes up that the anosognosia is done and over. If she is accepting and compliant now might be the time to make any changes necessary or get anything done you haven’t been able to. I hope for both you and your mom anosognosia is behind you. It is hands down the most difficult symptom so far.

JulietteBee

@H1235, thank you! I do hope the anosognosia is a thing of the past, but do appreciate your sharing that a reemergence is possible.

The psychologist says that she will be placing suggestions & recommendations in her report. One of which should help me to finally gain consent to adding a caretaker to assist her/us.🙏🏽

SDianeL

so glad you are getting answers. Thank you for the update. 💜

JulietteBee

Thank you, @SDianeL! 🩷

harshedbuzz

@JulietteBee

I am glad you are being listened to and getting some traction around testing.

It's great that she's being more cooperative at the moment. That's much easier for you as her advocate. That said, we found the anosognosia worsened with time and disease progression. Early on dad was much more aware of the areas in which he struggled. Later in the disease progression, even if he admitted to "mild" memory issues, he was unable to recognize how they impacted his ability to be independent.

HB

JulietteBee

@harshedbuzz

Thank you for your supportive comment.

I am thankful that you and @H1235 pointed out the real possibility that anosognosia could very well rear its maddening head again. I will be on the lookout. Thankfully, being forewarned will help me not to be surprised if it does.💔