Photo by David Mullins on Unsplash As I’ve said before, Tom and I are the typical opposites who attract. We realized early on in our marriage that even our sleep patterns differed. I could remain alert late at night but took a while to feel like talking in the morning. He needed an earlier bedtime but arose, fully recharged, no matter how early the alarm clock rang.  All that changed, however, with the arrival of our first child—and then our second ten months later. I’ve often said that mothers have to be both night owls and early birds. Once again, my parenting experience has served me well, as I now need alertness at many times of the day. That’s especially true because over the past several months, sundowning has played a more significant role in our lives.  In case you haven’t heard of sundowning or sundown syndrome, it refers to a set of symptoms that typically occur as daylight begins to fade, generally in older adults with one or more forms of dementia. It can involve restlessness, agitation, irritability, confusion, and more—and it often makes going to bed and staying asleep a challenge.  Tom has taken medication to help him sleep since we first began treating his dementia symptoms, so I suppose he’s shown sundowning behaviors for a while. Without the medication, he tends to wake up much more or becomes agitated, even violent, in his sleep. With the medication, he sleeps well—for the most part.  As a person living with dementia, he also requires more sleep than he used to. The activities of daily living are much more difficult for him than in the past. His broken brain has to work harder to process simple conversations and ideas. If we have an outing or appointment during the day, he almost always comes home exhausted. He still loves interacting with people, but the mental challenge wears him out.   That exhaustion was one of those dementia symptoms I noticed long before the doctors agreed with me that anything was wrong. The simplest tasks seemed to tire him, and he took naps whenever he had the opportunity—something he’d never done before. I wondered if he was aging prematurely, and in a way, I guess he was. If you look at photos of him now compared to even a few years ago, you can see the toll his disease has taken on his face. Of course, that’s nothing like the toll it has taken on his life.  Tom’s sundowning means I can’t ask him questions late in the day and expect a coherent (or any) response. His tremors worsen, so he’s more likely to spill his food and drinks. For the past month...

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 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...

Photo by Fabiran Kühne on Unsplash Clearly life has gotten in the way of blog posts, and that will happen sometimes. But as I return to the blog, I want to dive back into our journey toward diagnosis (I’m really not trying to make it take as long as the actual journey!).  You can find the most recent segment related to diagnosis at this link. In that previous post, I discussed a visit with the third neurologist we saw in our effort to discover what was going on with Tom’s health/memory/behavior and other problems. By this time, I had made some big decisions, most especially the ones that involved selling our home and moving to be closer to family in the upstate of South Carolina (here, we’re closer to our two oldest daughters, one a few minutes away from us and one in Atlanta, only two hours away). I knew that no matter what the doctors said, something was definitely wrong with Tom. I knew he had lost three jobs in quick succession and that we could no longer allow him to drive. And I knew I couldn’t count on him to lead and provide for our family in the way he had for so long. But I still needed help to get a diagnosis. I hoped it would be a path toward disability benefits if, as we thought, he could no longer hold down a job. And I especially needed a diagnosis because I hoped doctors could stop or slow down the disease. This third neurologist was the first one to mention FTD, or frontotemporal degeneration. I’m a writer and editor by profession and also by identity. That means I’m the type of person who will research and read everything I can on any given topic. I’ve already told you more in these posts about FTD than I knew at that point, now about a year and a half ago. But here are some of the key characteristics that stood out to me in my very early research on the topic: —FTD typically strikes younger people (the age range for onset is 21-80, but the majority of cases occur between 45 and 64.) Tom had just turned 63, and I’d suspected problems since well before he turned 60. —FTD is frequently misdiagnosed. Enough said. —FTD is less common and less known than Alzheimer’s. —FTD has no known treatment or cure. This site says, “no current treatments stop or slow the progression of the disease.” And that’s one of the reasons I want to keep writing. As we raise awareness, we can also advocate for research (it’s happening, but slowly) and work toward a brighter future for others faced...