(Paul Barlow, Pixabay) For much of this year, we’ve rocked along in our dementia journey without major obstacles or downturns. In fact, I realized the other day that Tom hasn’t had a major fall for a number of months. I don’t know if we can attribute that to an improvement in his balance, to his now-regular use of a walker, or to something else, but I’m grateful.  However, I do recognize that his general direction is not up or even forward but steadily downward. At times, the force of what’s happening slams me right in the face—or, more accurately, in the heart—with what I can only describe as sudden impact.  This happened just two weeks ago when we were rehearsing our Christmas presentation. During our rehearsals, my mind kept returning to only a few years ago. Every December, Tom would throw all of his musical, physical, and spiritual energy into directing a full-blown Christmas production. Yes, I was proud of and grateful that this year, he sang a solo. But when I allowed myself to compare that to everything he used to do, the tears threatened to overflow.   As we presented the Christmas music for the audience, I asked God to help me concentrate on the music, the message, the moment—so I could rejoice rather than weep. And thankfully, Tom never knew anything otherwise.  Another sudden-impact moment happened just last week when a research coordinator from Emory’s Neurology Department met with him via Zoom to conduct some cognitive testing. In the past, doctors used these tests to help determine their diagnosis (or, for years, their lack of one). Now, the tests help assess how his dementia is progressing. Some relate to memory, and others, to overall cognition.   When we were desperately seeking diagnosis, I wanted the testing to reveal deficits. Back then, his scores were high, remaining in the normal range even when his behavior showed obvious problems. But during last week’s testing, I realized that I wanted him to remember more or perform better than he could. The sudden impact came when I realized he couldn’t follow the simple instructions for some of the tests. Of course, I had to connect my laptop to the internet and set up the Zoom call; that would have been far more than he could do.  In the past, Tom refused cognitive testing once or twice because he had taken these tests so often. Now, he simply accepts it as something he’s supposed to do—one more event that came with a sudden impact.    We don’t have the full report yet, but the preliminary notes said the testing showed deficits in multiple areas. This shouldn’t have been news, but I still felt its...

Photo by Justin on Unsplash Twists. Turns. Slow, then fast. Up, up, up—then plunging down. And sometimes, what seems like a complete reversal. That describes not only a roller coaster ride but our journey to and through diagnoses (intentional plural).  In this post from a few weeks ago, I shared how after a long wait, Tom was finally approved for disability payments through the Social Security Administration. I no longer had to jump through hoop after hoop to get doctors to agree that something was wrong with him and/or agree on a diagnosis, which had previously wavered between frontotemporal degeneration, behavioral variant, and young-onset Alzheimer’s Disease (“young” onset means symptoms develop before age 65, and Tom had symptoms well before age 60, which is when I finally convinced him to see a neurologist).   As it turns out, we weren’t done with the diagnosis process after all. As I also mentioned in that post, we had one unsatisfactory visit to a neurologist in our new home state of South Carolina (where we moved in late 2019; we had seen a total of four neurologists in Florida). Once the perceived urgency of diagnosis was over, I didn’t want to go back to that doctor. I took the advice of a local friend and called the Brain Health Center at Emory University in Atlanta. We had tried to get Tom accepted there once before, but at the time, they wouldn’t take patients who lived more than an hour from the hospital (we live two hours away).  Both the pandemic and the fact that Tom now qualified for Medicare helped us. When I called in the spring of 2021, the screener said she would call me back “in a day or two” if he qualified. I got a call back that same afternoon.   A few weeks later, we met with Tom’s new neurologist for the first time—via Zoom as we sat parked outside a restaurant in Georgia (we had to be physically in the state because of medical licensing requirements). They had no in-person appointments, but I filled out multiple questionnaires ahead of time. The neurologist listened to both of us (although Tom stopped participating early on), asked insightful questions, and wanted to hear various details of Tom’s health. I mentioned that although many of his behaviors/symptoms were consistent with FTD, his early memory problems seemed to point more toward Alzheimer’s, and he had received both diagnoses.  To firm up the diagnosis, this neurologist recommended a lumbar puncture and an MRI (his third since 2017). We had declined a LP a few years prior, concerned about putting Tom through a stressful procedure, but this time, I said yes. Since I had gone to the trouble...

Photo by Jack Sharp on Unsplash 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...

Photo by Danielle Rice on Unsplash Over the past several months of my somewhat irregular “snapshots of dementia” posts, I’ve written about lots of big things. Our painful journey toward diagnosis. Job losses. Wounds to our marriage and our family. Asking Tom to stop driving. And more. But I’ve also noticed that with dementia as with many areas of life, the little things often have just as much impact as the large ones. Consider the following as not a list of my favorite things but rather of the little things that touch my heart as I watch his early-onset dementia, frontotemporal degeneration, steal so much from my husband. — Open Doors: Tom’s short-term memory has become so short that he rarely remembers to close doors or drawers. You may recall that much earlier, we had to put special hinges on our front door to close it automatically because more than once, he left it standing open when he left for work. Now I can trace his path through our home by the doors and drawers he leaves open. Praise God for a refrigerator with an alarm! — Press Pause: Sometimes I find Tom standing in our hallway, a blank look on his face. Although it passes quickly, I know this means he’s started to go somewhere or do something and forgotten what he started out to do. I can hear some of you saying, “But I do that all the time.” Yes, but probably not fifteen or more times a day—and within only a few seconds of starting the activity. — Delayed Departure: My experience as the mother of five has prepared me well for my current stage of life. As a mom, I had to plan to leave 10 or 15 minutes earlier than the actual departure time because someone wouldn’t have their shoes on or another would need to make a bathroom stop. Even if I tell Tom, “We have to leave in a few minutes,” his broken brain can’t translate that to the steps he must take to be ready to go. In fact, if I give him only two things to do, he will usually forget one of them. These days, we exit more slowly and often have to make a trip or two back inside before our true departure. — “You’re So Smart”: Tom often makes this comment multiple times a day. “You’re so smart” because I could log onto the library website. “You’re so smart” because I knew how to install an app on my phone. “You’re so smart” because I remembered what I had planned for the weekend. What touches my heart here? He never used to say, “You’re so smart” because...

Photo by Raman Oza from Pixabay In a previous episode of “As the Journey Toward Diagnosis Turns,” Tom’s most recent neurologist (No. 3, in case you’re counting) had requested two things to help her solidify Tom’s diagnosis: a PET scan of his brain and the records from the neuropsychologist. Insurance denied the PET scan, but the doctor wanted us to come in anyway. I fought the early-morning Orlando traffic only to discover that the neuropsychologist hadn’t accepted this most recent neurologist’s form, so he hadn’t sent the records. Instead, we had to fill out an additional request. As soon as we completed and signed it, our neurologist’s office faxed it back, believing Tom’s records would arrive soon. We waited. And waited. And ended up having to reschedule because the records still hadn’t arrived. In fact, the neuropsychologist’s office had stopped answering the phone when our neurologist’s office called. Throughout this season of my life, I have had some amazing and supportive medical personnel who have assisted us. But I have also experienced the frustration of dealing with a system that somehow works against rather than for the patient. Why should our health records not be our health records? Why should we have such a difficult time obtaining them to share with another health professional? Fast forward to a few weeks later, another denial of the PET scan by our insurance and another visit to the neurologist. This time, she had the results of the neuropsychological exam. I wasn’t convinced they would help her much, since that practitioner had told us Tom’s only issues were ADHD and shame associated with some of his poor choices. But of course, we were glad to have another appointment. This time, they did another preliminary memory test, and Tom again charmed the nurse’s assistant. I couldn’t tell if he remembered our previous visit or not, but after a brief physical exam and a few more questions, the neurologist explained her dilemma. After reviewing his records, she felt even more confident that he had frontotemporal degeneration, behavioral variant (and by now, I’d done enough reading to agree with her). But she hesitated to make a firm diagnosis without “proof” via a PET scan (I’ve since learned from other FTD spouses as well as medical reports that PET scans do not always provide such proof.) Since our insurance wouldn’t pay for it, we could either wait until Tom turned 65 and get it via Medicare (at that time, nearly two years away), pay for it ourselves (at approximately $5,000) or remain undiagnosed. It may not surprise you that, with my newfound advocacy for my husband, I chose the fourth door: Another neurologist. By this time, I...