(Israel Palacio on Unsplash) He’s quirky.”  Anyone who’s known Tom through the years will agree that I wasn’t wrong when I described him this way to a group not long after we had come to the final church he served as minister of music. He’s a musician; I’m a writer—we pretty much understood that quirkiness was part of the package when we married each other.  But now, I wonder just where his quirkiness stopped and the dementia behaviors began. And I don’t suppose I’ll ever know.   I missed many of the early signs that Tom was living with dementia—partly because his neurologist and others kept telling me he was fine. But because I didn’t know about the behavioral issues dementia can cause, I am writing about them now so perhaps someone else won’t have to wait as long for a diagnosis as we did.   Not everyone LWD exhibits these same behaviors, and not everyone LWD has as many behavioral issues as those with a variant that affects the frontal lobe. But in addition to those I noted last week, here are some more of the atypical behaviors we saw in Tom even before he received his dementia diagnosis:  — IMPULSIVE/RECKLESS ACTIONS: I have written about how he was blackmailed via social media and later gave away thousands of dollars to online scammers. Since he was always frugal, this was out of character financially as well as morally. I am still appalled at the way scammers prey on the vulnerable, but I wish I had recognized just how vulnerable he was much sooner.  — LACK OF MOTIVATION: I also wrote not long ago about how Tom stopped paying attention to lawn care. This same lack of motivation, in large measure, resulted in him no longer playing his trumpet (formerly a top priority for him). After he hurt his lip in a challenging concert in 2016, he received a detailed plan to help him heal and rebuild his muscle strength, but he never followed through. He still tells people he’s a professional musician; the sad truth is that he hasn’t practiced consistently since he hurt his lip nearly seven years ago, more than three years before his diagnosis.  — ODD PERSONAL HABITS: One day, I found him laying a towel down over the bathmat as he prepared to take a shower. When I asked about it, he said he “had never liked to get the bathmat wet.” It took a while for me to realize this was a dementia behavior, not a longtime preference that I had somehow missed. I remember watching the final funeral he officiated nearly five years ago and noticing how he constantly licked his lips as...

Big things can hurt us—a heart attack, a broken bone, a dangerous diagnosis, the loss of a friend or family member. But little things sometimes hurt us too. Here are some of the big little things we’ve encountered this week in our dementia journey—and a few tips I learned along the way.  Time Change: When our oldest kids were toddlers and Daylight Saving Time ended, we would tape black plastic over their windows to try to ensure better sleep for the first week or two post-switch. Most of the time, it didn’t work.  I’ve felt tempted to do the same this week, because when we “fell back,” Tom didn’t. He’s gotten up at 4 or 5 a.m. most days this week, and since I tend to stay up for a while working (or writing this blog) after he goes to bed, I’m worn out.  PRO TIP: If you’re caring for a partner who is living with dementia, going to bed when they do—as long as it’s not, say, right after dinner—makes a lot of sense. It’s always easier for the person who is not LWD to change their habits than for the person LWD to do so. As a lifetime night owl, I know I won’t do this every night, but I’ll try. Again.  Feeding Frenzy: Near the beginning of the week, I made two small coffee cakes. I found fresh blueberries on sale, and this recipe is one of Tom’s longtime favorites. That’s why I was surprised when, after a couple of days, he hadn’t eaten any. “I made your favorite coffee cake,” I told him.  His answer also surprised me: “I have to eat my cereal.”  “Couldn’t you eat coffee cake too?” I asked. He didn’t respond, which either means he didn’t understand or couldn’t process an answer before he forgot my question.  But I soon figured out what he meant. We had recently bought multiple boxes of Chex (three kinds in one giant package). Tom loves Chex, and he happily placed four huge boxes of it in our cart at a club store not long ago. I bought it because, although we don’t really need so much on hand, it’s better for him than many other kinds of cereal, and I knew it would keep.  I realized his mixed-up, LWD logic was telling him it was more important to eat the cereal than the coffee cake. People LWD lack the logic that would say homemade coffeecake spoils much more quickly than processed cereal and fresh baked goods taste much better than older ones. In Tom’s world, “I have to eat my cereal.”  I wrapped up one coffee cake and froze it, sharing some of the other with a friend and grateful to have navigated his illogical logic....

Photo by RoonzNL on Pixabay Although the frontal-lobe aspect of Tom’s dementia means we noticed devastating behavioral changes, his memory loss has also been a consistent sign and symptom.  Throughout our journey, I’ve heard comments such as, “Oh, I forget things all the time!” or “I do that too—maybe he’s not as bad as you think!” While yes, we all forget things, there is a definite difference between forgetfulness associated with normal aging and forgetfulness associated with dementia. I won’t go into those details here, but you’ll find a good explanation at this link.   In short, experts often use the term “memory loss that disrupts daily life” to distinguish it from more normal, age-related memory loss. I’ll give you a few examples from various points in Tom’s journey that I hope will illustrate why memory matters and how debilitating it can be.   Work: While Tom was still employed as a minister of music, he had increasing trouble keeping track of the details needed to serve a midsize congregation (around 500 in attendance total at three different services). The last year or two, when he led choir rehearsal, he invariably left one or two songs out of the audio file he had prepared in advance. After he lost his job and I spoke with our former senior pastor (who had retired the year before), I learned that often, he and Tom would have a discussion that Tom didn’t recall even a few days later. During this time, he also struggled to use his in-ear headphones and fumbled with his mic nearly every week; he also forgot preplanned details of the services.  Home: Long before diagnosis, we had to install special hinges on our front door to close it after Tom left it wide open more than once when he left for work. Nowadays, his memory has declined enough that he leaves other doors open on a regular basis: cabinets, dishwasher, refrigerator, freezer—I often think about how short his memory must be if he can’t remember to close a door he has opened only seconds before.  As you can imagine, he loses and has lost various items for years—I’ve sometimes wished I could have all the time back that I’ve spent hunting for them! We do use a Tile tracker and connected app on the most essential items, but it’s amazing how quickly he can lose the remote, his phone, his reading glasses, his coffee mug, or whatever object was last in his hand.   Outings: Memory loss makes it increasingly difficult for Tom to navigate places he doesn’t know well. When we go to a store and he needs to use the restroom, I stand near the door, or he won’t find his...

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...