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Snapshots of Dementia: Doctor, Doctor

Posted by on June 4, 2020 in Dementia | 13 comments

Tom and I sat in the stiff-backed chairs at the neurologist’s office. After months of delay, he had told his primary care doctor he might have some memory issues. That doctor scheduled an MRI and referred him to a local neurologist.

A few months before, I had taken a full-time job with a publishing company—the first time I’d worked outside the home since our oldest daughter was an infant. I had homeschooled our five children for a total of 21 years and, when our youngest was a preschooler, begun a freelance writing and editing career (see the rest of this website if you want to know more).

But now our two youngest daughters were in college. I had no desire to leave home, but I felt a new compulsion to get a “regular” job. Deep down, I wondered how much longer Tom would be able to work, and although money had never been my primary motivation, I realized a regular salary and benefits might help.

I had no way of knowing how much or how soon.

That day, I took off work to accompany my husband, my only sure way to receive an accurate report.

At the neurologist’s office, Tom was “on” in ways that had become less frequent, charming every office worker and medical assistant. The neurologist, however, was not as easily charmed. For some reason, he hadn’t received the MRI report (although we later learned it showed nothing unusual). He then asked Tom the reason for his visit.

“I’m having a few memory problems.”

The doctor pressed further. “Have they affected your family?”

“Not really. Maybe sometimes.”

“Have they affected your work?”

“No. I have a good assistant.”

“So your memory problems haven’t caused any issues with your job?”

“No, none at all.”

The neurologist asked a few more questions, almost all of which Tom answered much more casually than I would have.

My frustration mounted. How can he say this isn’t affecting his job? I had noticed numerous times when he forgot things or failed to complete tasks. In fact, if it weren’t for his capable assistant, he would never have been able to keep up.

But the neurologist didn’t ask me any questions. When I tried to comment, he pivoted back to Tom. Soon, he began a brief memory test. Tom missed some questions and did well on others. And since the test was short, we got immediate feedback.

“You do have some problems with your memory. Many people have this, and it never gets any worse. I imagine that will be the case with you. Don’t worry. But come back in six months, and we’ll see how you’re doing.”

Although Tom and I rejoiced at what sounded like good news, I felt both relief and concern. Lots of people have this? It probably wouldn’t get any worse? That sounded wonderful. But why had our lives already changed so much?

When I shared these results with our kids, I remember saying, “I’m happy to be wrong. I don’t want him to have any kind of issue. I just hope I don’t find out someday that I was right all along.”

If I had known more about dementia, I would have pressed harder. And if I had known many dementia patients exhibit anosognosia, a condition in which a person cannot perceive their own illness, I would certainly have insisted the doctor listen to my thoughts.

I didn’t know. And we left with no real answers.

If you suspect a loved one has dementia, I urge you to do what I didn’t: Keep asking questions. Become your loved one’s advocate. At the time, I didn’t know enough to effectively carry out this role.

More insistent advocacy on my part would not have changed Tom’s diagnosis. But it might have come sooner and with fewer devastating consequences.

If you have a loved one with dementia, who noticed their symptoms first? Did you find adequate help as you sought a diagnosis? What, if anything, do you wish you had done differently? Your story matters.


  1. Thank you for sharing. I am thankful because I am certain this will help many people! I relied heavily on blogs about blood cancers after my dear Chris was diagnosed. Knowledge is power!

    • This is my prayer, Karen. I am sure all caregivers end up becoming (nonprofessional) experts on subjects they may have had no knowledge of before. HUGS!

  2. So much wisdom, dear friend. You’re an encouragement and tremendous blessing. You know I remain on my knees. Love you!

    • So grateful for your friendship. MORE grateful for your prayers! Love always to my Knees.

  3. Continued prayers

    • Thank you so much. You’re a blessing!

  4. Sometimes I feel as though I am walking in your footsteps. We are currently working with a very good neurologist juggling diagnosis and treatment now between Parkinsons and dementia. Add this to the loss of vision and life becomes complete dependence on God for peace and understanding. Thankyou for your blog and encouragement. Having been an advocate for Jeff, I am not afraid to ask questions and persue anything that might help…we have found Omega 3 seems to help with clarity…for whatever reason.

    • A good neurologist is HUGE. We saw three in Orlando before we got any real kind of answer and another after that! Praying for you.

      • Thankyou

  5. When you are faced with a disease as a caregiver , you learn more than you ever wanted to know! Prayers.

    • That is SO true! My dad had oral cancer that metastasized, and I still tell my mother she earned a nursing degree through all that plus his many years as a diabetic. Prayers for you as well!

  6. I’m so grateful that you are sharing this journey, I continue to pray for you, for peace, patience, and most of all for you to feel loved.

    • I didn’t mean to overlook this comment. I do feel loved, by the Father and by people like you. Thank you for reading and especially for praying!

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