Preparing for a neurologist appointment despite dementia

by Leah Community Member

Life with dementia continues to be a challenge.
My dementia appears to be moving forward.
I am experiencing bigger HOLES.
My definition of a HOLE is a block of time which, in my conscious memory, does or did not exist.
Earlier in my diagnosis, I only experienced small holes of time which I could not recall.
During the past few months, my husband has had to remind me of more and more that I could not remember.
This change, while dismaying, is not alarming.
I knew it would happen some day in the near future.
With Aricept, I've been able to cope quite well these past six or so years.
Now, it may be time to add or change my meds.

I went to see my neurologist last week.
Before going, my husband and I had our usual pre-neurologist talk.
Questions to my husband:
What changes have you seen in me since the last visit?
What have you seen me worry about?
What questions do we have for the doctor?
I write down the answers, of course, to take to the neurologist.
I suggest anyone with dementia or the caregiver do this before seeing the doctor.
Go there, armed with your concerns.
Don't depend on your memory and that means, you the caregiver, too

On the day of my neurologist visit, he did the normal routine and then asked me if I had any concerns.
When I told him about the HOLES, he asked me to be more specific.
I thought and thought.
And then I looked at him like he certainly MUST be crazy, as I have dementia how could I remember?
When I told him I couldn't remember, he almost got a smirk on his face"almost"like, What was I thinking?She has dementia!

Then he asked me some questions to test my memory.
I knew some of the answers.
Who is the Vice-President of the United States was a stumper.
But, then, he certainly hasn't been in the news much during this Administration" so I bet there are LOTS of people who couldn't remember his name.
The second question was a surprise to me.
What is the name of the President's wife?
I couldn't remember her first name.
I almost said MRS. OBAMA, but I didn't think my neurologist would find that very funny, so I said instead, "I don't remember."
The name Cheryl kept coming to mind, but she just doesn't look like a Cheryl in my mind. (Twenty minutes later, as I left the office I remembered and almost ran back in to tell him!).

I asked my neurologist if there were any new meds on the market that might help me.
He said there were, but wanted to get another MRI of my brain to compare it to the one five years ago.
Once the results are in, we will talk about medication.

So, what can one take away from this blog?

  • First, evaluate yourself before going to your doctor.
    Get input from your loved ones and/or caregiver, too.
    Write down all questions and concerns"and remember to take them to your doctor.
    Once at the doctor's office, write down the answers to your questions.

  • Second, question your doctor about new medications on the market.
    Inquire about side effects.
    Weigh the possible benefits against the side effects, and, with input from further testing and conversation with your support group (loved ones and/or caregiver) make a decision concerning a medication change or addition.

  • Third, be sure to know who the vice-president is (Biden?) and the name of President Obama's wife (Michelle!!!).

I am hoping that God is filling your life with blessings (because life can be good even with dementia.

You just have to find that silver lining in all you do!).


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