(Unsplash) “Turn it off,” I said, my voice shaking. “I just can’t watch that.”  The YouTube video that caused me to speak to my daughter in such a direct way had a topic too familiar to all of us: dementia. As I recall, it involved two men who exposed scams, this one targeting senior adults who were living with dementia. The investigators were doing a great job of ferreting out those responsible and (I presume) helping bring them to justice.  That wasn’t the problem, of course. The problem, for me, was the deliberate way they pointed their attacks toward someone LWD, easily confusing and misleading them.   And the real problem—the reason I couldn’t watch anymore—was that this happened to our family too.   More than two years before Tom’s official diagnosis with dementia, while the neurologist was still telling me he was fine, we experienced one of the worst seasons of our lives. We were already going through marriage counseling after he confessed some very inappropriate activity (not a physical affair). What should have been one of our happiest times, with one of our daughters getting married that summer, quickly become just the opposite.  Tom was barely doing the required homework for our marriage counseling. In fact, he often seemed disinterested when we met (via Zoom, although the pandemic was a few years away) with our counselors from Pure Desire Ministries.   The loneliness I often experience now while married to someone LWD is nowhere near as great as what I felt then. I cried nearly every day, sometimes sobbing for much of my forty-minute drive to and from work. Why did my husband no longer seem to care about our marriage?   Over that summer and fall, at the same time as we were going through counseling, complete with accountability partners to whom Tom reported every week, he was giving away our money, several thousand dollars at a time. The first time, while out of town, he had money wired from our bank to share with a scammer. Later, he used credit to buy gift cards, also shared with a scammer.  And here’s one of the worst parts: because he was the primary money manager, I had no idea any of this was happening.   I had noticed his increasing struggles, and (at my insistence) Tom had a neurological workup including an MRI, but I wasn’t yet in relentless pursuit of a diagnosis. In fact, it took almost a year after that for me to connect the problems in his behavior and in our marriage to his dementia.   Like many people, I thought of dementia as primarily a memory issue. Tom had some memory problems, but he also had many other behavioral...

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 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...

Tom playing his first trumpet gig, c. 1969 We refuse to let this thief steal our faith, our marriage or our family, but he has already taken Tom’s ability to work, drive and play his trumpet. The above words come from my November 2019 Facebook post, the first time I shared publicly about Tom’s struggles with early-onset dementia. If you’ve read my recent blog posts, you understand why I referred to dementia as a thief. But how could it steal his trumpet playing? Isn’t that something he could do in his sleep? One would think so. Trumpet playing has been such a part of Tom’s identity that most longtime friends don’t think of him apart from his trumpet. He began playing in third grade at age 9. By sixth grade, he played his first nightclub job. And by junior high, he was one of three students marching with the high school band. Tom still has a T-shirt imprinted with “Band Nerd,” and no description seems more accurate. All-city, all-state; you name it, and he did it. The kid who used to listen to Herb Alpert albums a few notes at a time, write down what he heard and then play the songs didn’t even realize he had perfect pitch until a college professor identified it. But his favorite expressions of music always involved worship. Years ago, I remember a dear woman of God saying Tom had a special anointing when he played for worship that was far greater than his natural ability. I fully believe this statement. Over and over, I saw his playing touch people’s hearts in powerful ways. Tom playing his trumpet on a mission trip to Mexico, c. 2002 In May 2016, before we ever saw a neurologist, Tom was one of three lead trumpet players for a special recorded concert of the Florida Worship Choir & Orchestra. He had a busy few weeks before the concert and apparently didn’t practice enough. When the evening ended, he knew he had injured his lip. He iced it during the concert and on the way home. “I can’t play,” he said. “I’ll have to let it heal.” And so he did. For weeks. As part of his sixtieth birthday celebration, I gave him a summer trip to a trumpet camp run by one of his longtime trumpet heroes: Malcolm McNab, who played lead trumpet on thousands of movies and television shows. For Tom, this was the gift of a lifetime. But should he go with his injured lip? He called to cancel, but Mr. McNab graciously convinced him to come. And Tom was so thankful he did. Not only did he get to spend time with his college...