Snapshots of Dementia: Unanswered Questions

Posted by Marti on July 2, 2020 in Dementia | 10 comments

I sat in the neurologist’s waiting room beside Tom, praying this visit would yield more results than the previous one. More than a year had passed because we’d somehow missed an appointment. Until then, I trusted Tom to make and keep his own calendar. But as with many other things, I realized I needed to take charge.

In some ways, this appointment seemed much the same as our first. The quick memory test, which he again passed with no problem. The questions about how his memory issues were affecting his daily life. And yes, minimal answers from Tom.

But this time, I made more attempts to speak up. I didn’t know of a connection, but I told the doctor about the problems mentioned in this post that had moved us into marriage counseling. I told him Tom had stopped playing his trumpet and become more forgetful. I didn’t belabor my points, but I did express my concern.

The neurologist stared down at the paper where he had, presumably, recorded scores from Tom’s tests. “Well, he’s better than the 80-year-old Alzheimer’s patients I see.”

Tom was 62.

A typical introvert, I can create all sorts of snappy comebacks. I just don’t think of them until five minutes too late.

If a doctor made such a ridiculous statement today, I’d walk out. Politely.

But back then, I listened. I left the questionnaire I’d filled out detailing the changes in Tom folded in my purse. What difference would it make?

With obvious reluctance, the neurologist ordered some additional testing with a local neuropsychologist. Tom went on his own for an appointment that lasted a few hours. Soon, I accompanied him to hear the results.

Surely they must have found something, I told myself. How else could he have so many problems?

The difference between our situation now and 15 months or so earlier was profound. And all of our young adult children, some of whom had wondered if I were reading too much into things, agreed.

The neuropsychologist explained the test results, but in the end, he saw few areas of concern. Most of Tom’s problems seemed related to ADHD, the one diagnosis we already knew about. And any other issues stemmed from shame over his poor choices, he told us. A kind man, he spoke quite firmly with Tom, affirming that God could still use him in ministry and that those behaviors did not represent the person he was. I agreed. But is that all?

Tom, as usual, seemed largely indifferent. And I felt the same way I did at the other appointments: confused. If nothing’s wrong, why has he changed so much? Why can’t he seem to organize the simplest tasks? Why is he putting our family and finances in such jeopardy?

During this season, I often felt as though I had three jobs: my full-time job with the publishing company, my freelance writing and editing work, and reminding Tom of the must-dos in his life—the ones I knew about, anyway. Small wonder the weeks passed in a blur.

But they also passed with a prayer I offer to this day, asking God to make up for the lacks in Tom’s life. For both patient and partner, dementia brings with it a huge weight of loneliness. And although I didn’t yet recognize my caregiver role, I knew where to turn to fill the emptiness that threatened to invade.

Tom was exhibiting symptoms I now know were typical of people who have frontotemporal degeneration (FTD), behavioral type.

 My problem? I still knew nothing about this disease. And apparently, the doctors we’d seen so far didn’t either. Otherwise, I don’t see how they could have listened to my concerns and tell us nothing was wrong.

Or maybe they didn’t listen after all.

A teacher friend recently told me she believes schools should use more than mere test scores in evaluating students. And that’s how I felt about whatever was wrong with my husband.

Yes, the test scores mattered. But what about his life?

If you have a friend or loved one who exhibits several changes or deficits, please keep seeking answers. Not all neurologists, neuropsychologists, or other health professionals are experts in every type of dementia. I encourage you to persist. And I further encourage you to confide in others. I didn’t do enough of that soon enough. Feel free to share your thoughts in the comments below. Your story matters.