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road-sign-63983_640Tomorrow morning, I’m taking Mom to see a neurologist to further investigate her Mild Cognitive Impairment. I’m so nervous and full of questions, like these:

What’s going to happen while we’re at the office?

What kind of tests will she have to take? (She HATES tests and has always tended to go blank under pressure.)

Will the doctor tell her tomorrow that she has Alzheimer’s or some other form of dementia, or can that still be put off till the future?

Will the doctor say anything that will frighten or upset her? Or me?

Is it okay to tell other family members about this?

Is there a stigma attached to dementia that will keep her from wanting anyone to know – if that is the diagnosis?

Why does she forget some things and remember other things, when they are basically the same type of things?

If dementia affects the short term memory, why does she remember some recent things, but get confused about things in the more distant past?

I wonder how many of those questions will be answered in the next 24 hours.

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5 comments

  1. Profile photo of Denise

    Hi LM–I so hope tomorrow goes okay. It is nerve-wracking! I hope you like the neurologist and feel he (or she) is a good fit for you and your mom.

    I just wanted to share a perspective about telling other family members. I think it’s a great idea to start telling other family members. As they interact with your mom, it’s important that they know what’s going on so they can have successful interactions with her. And, with holidays coming up in the next few months, if you tell them now, you’ve got time to get everyone acclimated.

    My mom has a friend she’s known since grade school. The friend received a diagnosis of Alzheimer’s a few years ago. She and her husband told their children but didn’t tell friends until about a year ago. The husband left a note for my parents, explaining Lois’s diagnosis and included education materials (including communication tips) from the Alzheimer’s Association. My mom was grateful to know, as were all the friends. They now make special accommodations so Lois can participate in activities.

    I only think there’s a stigma if we attach one.

    I think your questions are just great and good ones to ask during the appointment. Please let us know how it goes.

     
  2. Profile photo of Denise

    And, the Alzheimer’s Association has a document which offers insights on what happens during the appointment with the neurologist: http://www.alz.org/stl/documents/visiting_the_neurologist.pdf

     
  3. Profile photo of G-J

    You’ve got GREAT questions! Write them all down and take them with you to the appointment. Ask about anything you don’t understand.

    I don’t know what every neurologist does, but I can tell you about my husband’s neurologist. Yes, they test Steve at every appointment. They usually ask if I want to speak to the neurologist alone. (If you want to, tell them when you get there so they can plan for it.) On our first visit, they did give us the diagnosis. My husband had already had countless tests, so they might need to send your mother for tests such as an MRI before they make a diagnosis.

    I would definitely tell other family members about this. The Alzheimer’s Association can help you with how to do this.

    I agree with Denise that there is a stigma only if you allow there to be one. Your mother didn’t do anything wrong. Would you feel there was a stigma if it was cancer?

    Good luck with the appointment!

     
  4. Profile photo of LilMagill

    Thank you so much. It really made me feel good to see these replies this morning! The appointment went very well – the doctor is very friendly and Mom liked him – and we’re moving forward. She did very well on the mini assessment – still MCI – but will have an MRI next week to check for shrinking of the frontal lobe and a neuropsychiatric evaluation next year because that office is all booked up. He also took blood and will check for a B12 deficiency – wouldn’t that be nice!

    My concern about stigma is what’s in her own mind, not anybody else’s. I don’t feel ashamed or embarrassed in any way by her condition, now or what I imagine in the future, and I have a lot of faith in the people who care about her to feel the same way. But how will she feel about it? Will she want to keep it secret? (Would I if it were me?) At the office, I was doing the paperwork and put myself as someone the doctor can talk to about her. I told her what it was when I gave it to her to sign and said, “This is saying they can’t share your medical information with anyone but me” and she said, “And you can’t share it with anybody else.” And she was kind of joking, but kind of not.

     
    • Profile photo of Denise

      I am so glad all went well!!

      Ahhhhh! I totally understand your concern about the stigma. Her comment about sharing certainly says it all. You are right–if she chooses to keep this private, then it stays private. Would you feel comfortable starting a discussion with her about her wishes?

      Sounds like you and your mom earned a relaxing weekend. :)

       

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