Snapshots of Dementia: And Now, the Moment We’ve All Been Waiting For

Posted by Marti on March 18, 2021 in Dementia | 8 comments

It took us forever to reach this point in mid-September of 2019.

In fact, it took not only the visits over three years to neurologists Nos. 1, 2 and 3, but also a 50-plus page questionnaire/application, prayer and what the brain clinic in South Florida said would be a long wait.

But only a few days after I submitted the paperwork via certified mail, the clinic called with a sudden cancellation. Could we come in just a few days?

You know my answer.

As I drove the three-plus hours from Orlando, I prayed this would be that long-awaited moment: The diagnosis that said yes, Tom has dementia.

The diagnosis that said yes, it’s FTD (frontotemporal degeneration).

The diagnosis that would move him closer to qualifying for disability payments.

I decided to travel the distance to neurologist No. 4 because we had reached a stalemate. After two tries, our insurance wouldn’t approve the PET scan neurologist No. 3 said she needed to differentiate between FTD and early-onset Alzheimer’s disease. Already struggling to cover our bills without Tom’s income, I wasn’t about to pay the estimated $5,000 cash for the scan. So I decided to visit one more neurologist—this time, one recommended by the Association for Frontotemporal Degeneration. I hadn’t known to check their list earlier because, until neurologist No. 3, I hadn’t known about FTD.

After a slight GPS-induced detour, we arrived for our longest neurology visit to date. I found the team:

— Thorough: The group, which included a dietician, physical therapist, nurse practitioner and social worker, met with Tom and me individually and collectively. The exam included neuropsychological testing as well.

— Knowledgeable: I knew more about FTD now than I ever had, but this team knew more. That might seem obvious, but it had not proven true with doctors prior to neurologist No. 3.

—Caring: This was the first appointment where anyone expressed concern for my mental and emotional health. Just having someone express empathy for our journey meant a lot.  The team members were more empathetic than the doctor, who seemed distant, even rude, but I happily accepted knowledge over hand-patting, especially when receiving the latter from anyone came as a surprise.

After all the exams and discussions, the entire team met with both of us to give us what they’d promised at the start of our appointment: A diagnosis. In brief, here’s what they said:

1. Tom definitely has dementia. He shows marked impairment in several tested areas, in memory but also in logical sequencing and other elements associated with executive function. His 2019 MRI also shows marked shrinkage from the 2017 one, particularly in the frontal area of his brain, another clear dementia indicator.

2. Tom has a balance problem and needs physical therapy. (I’d spoken with previous neurologists about this and been largely ignored.)

3. My “story,” as the neurologist put it, indicates FTD, behavioral variant, which Tom may have. But the overall testing shows he may have either FTD or early-onset Alzheimer’s. This doctor said Alzheimer’s disease is “a quicker path to disability” (which, I later learned, is not necessarily true) so he would diagnose early-onset Alzheimer’s. Once Tom received approval for disability, he or another neurologist could order the PET scan under Medicare.

We now had a diagnosis—not the one I expected, but a diagnosis indeed.

I drove home with mixed feelings: relief, confusion, uncertainty. How could diagnosis seem so arbitrary? Why did the doctor snap at me when I asked if Tom might have both FTD and early-onset Alzheimer’s? (I have since met several caregivers whose loved one has this double diagnosis). Why could this neurologist give a diagnosis when the others refused?

As Tom, exhausted by the day’s interactions, slept his way home, I thought a lot and prayed more. As soon as the clinic sent the paperwork confirming his diagnosis, I could begin his disability application.

Our journey would continue—but our prayed-for, hoped-for moment had arrived.

Our future looked at once brighter and darker.

And for neither the first nor the last time, I was grateful Tom couldn’t understand.

Have you or a loved one had a similar protracted journey to diagnosis? Have you pursued second, third or more opinions? Once again, I have no medical expertise, but I have learned to become my husband’s advocate in every way I can. If one doctor doesn’t listen or provide answers for your questions, don’t hesitate to move on. True love does nothing less—and often, a lot more.

Our story matters, and so does yours. Feel free to share your thoughts and experiences here or on social media.