“They told me they would take care of it,” Tom told me the other day. “Who? Who would take care of what?” It took at least three or four more questions for me to pull enough from him to know what he meant. He had called our pest-control company to see if they could return to our home to take care of a problem. Because he often rambles or talks in circles now, I try to listen in on calls like this when he insists on making them. This time, he had gone to the other end of the house. But what he did in this brief conversation is something that’s happened many times in the past few years. I call it “beginning in the middle.” He starts partway through what most people would consider a normal train of thought. It’s as though he assumes I know what he is thinking before he says it. And through the grace of God, sometimes I’ve learned to do just that. A few months before we moved, I was at work, and Tom sent me an email that “began in the middle” and thus made little sense. But God, the revealer of mysteries, helped me interpret what he meant and give the answer he needed. Tom didn’t think anything unusual had happened. But by this time, I did. Of course, before I knew he had frontotemporal degeneration (FTD), I couldn’t figure out why these communication mixups kept happening. And although I suspected something was wrong, I didn’t see how these strange episodes fit into a pattern of anything. Except they did. I don’t ever see the term “tangled” on a list of dementia characteristics, but that’s how I picture his thoughts. So often, they seem hopelessly tangled, the way a ball of yarn looks after a kitten gets hold of it. Sometimes a piece breaks free, and we can follow it for a long while. Other times, one tangle only leads to the next. I believe this “tangled” problem relates to the loss of executive function I mentioned in my previous post. It’s one of the reasons I believe Tom can no longer hold down a job. The more his symptoms increased, the more tangled his thoughts and behaviors became. And it seems almost everything he touched (bill paying, taxes, work, and more) became tangled as well. Back when he still handled our finances, he never wanted to set our mortgage in Florida up on automatic payments; he preferred to pay the bill himself every month. But for at least two years, I often found him scrambling to pay it at 11 o’clock p.m. the day it was due, then running into...

“What are you doing?” I asked my husband as he carefully scooped out the potato casserole, left over from our Easter dinner and still in its original glass baking pan. “Just putting it into the right size container.” “Why? The kids are still here, and we’ll eat a lot more of it by tomorrow.” No answer. He continued scooping. Whatever, I thought. Never mind that the cornflake topping is now in the middle. It’ll still taste good. But I still wondered. (I did a lot of wondering back then.) Why does he care where the leftovers are? He’s never been interested in kitchen tasks.   As the weeks went on, I realized it wasn’t just the holiday leftovers he wanted in smaller containers. If I accidentally left more than an inch of room at the top of any leftover, he would find a way to go behind me and cram it into the next-size-smaller container. We’re spending more money washing all these different containers than we save by eating leftovers, I told myself. “It’s like you’re obsessed with this!” I joked one day. No answer. Of course he wasn’t obsessed. Or was he? I wouldn’t discover the answer until nearly two years later. By this time, I had noticed this same obsessive behavior in the following areas (not an exhaustive list): —Hair. For a year or two, he obsessed over getting his hair cut. Within a week or two of a trim, he would insist he needed another. I could barely get him to wait a month between haircuts. He could never seem to style his hair the way the barber did (his regular barber, a family friend, even mentioned this to me), but the super short cut during this phase meant he didn’t have much to style. —Bananas. We had the blessing of staying with friends for about four months while we waited for our home to sell. The husband gave Tom a new nickname during this period: Banana Man. I bought bananas; they bought bananas, and he still ate every one in sight. I know this phase has ended because last week, he went through only one bunch. —Gas Mileage. We owned a Prius and liked it so well that we bought another. But having a hybrid seemed to multiply Tom’s long-held concern for saving money. He had always been an aggressive driver. Now, he became a maddeningly slow one. He would compete with himself to get the most mileage on his daily trips to work and back. At one point, I realized he didn’t even want me to drive “his” car because my mileage record didn’t match his. Eventually, he drove our two automatic cars as...

“Watch carefully.” “Keep a list.” “Keep a journal.” That’s the traditional advice given to people who suspect a loved one shows signs of dementia. Even after Tom’s surprise party and the revival of my concerns, I didn’t keep a record of his struggles. My nagging thoughts came and went. And his previous diagnosis of adult attention deficit hyperactivity disorder (ADHD) didn’t help. I remember telling myself and at least one neurologist, “Maybe this is just what aging looks like in someone with ADHD.” But a day came when I did start keeping a list. This lasted only a month or so because it became almost like the situation when someone says, “I think this milk might be spoiled. Could you check it?” I find myself unable to taste or smell anything but spoiled milk—even if it’s perfectly fresh. When I was looking for dementia, I found all sorts of problems. And it hurt to think I might find symptoms and signs where there were none. So I stopped keeping my list and even deleted it. But I do still have notes here and there along with memories, which at this point are more intact than not. Dementia is a diagnosable condition made up of many small elements. I noticed the following signs in what I now call the “early days,” when I still wondered whether something was wrong: —Distractibility/lack of focus: My husband seemed to move away from a task and on to another more quickly than in the past. He left more things unfinished and undone. I knew this was true at home, but eventually, I realized it was also affecting his job. —Hesitancy in speech: Tom’s speech became more and more halting. I realized how much he struggled for words one night when, during a choir rehearsal, he mentioned a previous mission trip to what he (after a long pause) called the “left side of Canada.” As people laughed, I cringed—and added this to my mental list. —Forgetfulness or inattentiveness: Our dear next-door neighbor messaged me more than once to ask if we knew our garage door was open. No, we didn’t, but yes, Tom had forgotten to close it when he went to work. Two or three times, he left the front door of the house wide open as well. People grew accustomed to reminding him multiple times about nearly everything. —Exhaustion: He would come home from work so tired he could do nothing but sleep for a couple of hours. He would get up for a short time and then go to bed early. Normal aging, or a sign of a problem? I had no idea. —Withdrawal from social situations: Tom had always been a...

Tom and Marti at his surprise party, March 11, 2016 When Tom turned 60 in March of 2016, our family threw him a major surprise party. I wanted to make it special because I’d never really held a big party for him before, and his father died at age 59 of a massive heart attack so we all saw this as a milestone birthday. The evening included family, friends, food and (no surprise to anyone who knows Tom, a longtime professional trumpet player and worship pastor) a music theme complete with vinyl records lining one wall, note-shaped balloons atop black-and-white balloon towers and a musical staff where friends could write their own notes on (you guessed it) notes! I would never have pulled off such an incredible party without huge help from all of our children (forever kudos to our daughter Kristen, party planner and decorate extraordinaire). We scheduled it two weeks before his actual birthday because our two youngest daughters, both still in college, had spring break on successive weeks, and the weekend in between was the only time we could guarantee they could both attend. However, I could have pulled off the surprise element on my own. Even then, Tom’s mind did not hold onto dates and events. For at least a year before this, I had begun to wonder what might be happening with him. That night, I only needed one small lie to get him to the nearby church venue. “Remember? It’s David’s (a mutual friend’s) birthday, and they’re having a surprise party for him. I asked you, and you said we should go.” Of course, no one had invited us to this nonexistent party, and we had never discussed anything about going to the church. But I knew he would think he’d just forgotten one more conversation. Everything happened exactly as I thought, and we walked into the fellowship hall as scheduled. What happened next gave the party a personal subtext I’ll never forget. As we stood at the door with all our children along with many friends calling out, “Surprise,” I watched Tom turn and stare. Turn and stare. Stare some more. He looked at me. “These people don’t even know David,” he said at last. I stood on tiptoe, gave him a hug and whispered, “This party’s for you, baby. It’s your surprise party!” Only then did the understanding come over his face. But for the next 10 minutes or so, he still seemed in shock. Later, he said he was so surprised that he couldn’t process it all. And I don’t doubt that a bit. But what I also believe was that his brain was already showing definite signs of decline,...

Dear Friends, Not long ago, I wrote about what I’ve learned since high school. Since sharing that post, I’ve had the privilege of attending (and enjoying!) my fortieth high school reunion. I can only describe it as a wonderful weekend, filled with friends, fun, and plenty of tender/some side-splitting memories. And of course, I acquired a bit more wisdom over the reunion weekend. I’ll do my best to summarize it: 1. Shared Memories Unite Us: In my earlier post, I mentioned that our high school schedules, interests, and activities tended to separate us. Part of the reunion’s beauty was the opportunity to revisit our shared experiences: cafeteria food (Hopewell Elementary’s tender wheat rolls, Lakota’s salty French fries), football games, prom, and particular classes/teachers. As we talked and laughed, those long-ago differences fell away, and the sweetness of the memories brought us closer than the day we graduated. 2. Life’s Difficulties Bring Compassion: As I spoke to friends and acquaintances throughout the weekend, I realized how many of us had been through challenging experiences: Cancer. Divorce. Job loss. Death of a child, parent, or spouse. Some of my classmates’ faces were etched with the pain of those tough times. Others bore little to no evidence of suffering. But whenever anyone mentioned these tough times, heads nodded and eyes warmed in both empathy and sympathy. We care a lot because we’ve been through a lot. 3. Sometimes a Friend Surprises: The evening held more surprises than I anticipated, whether by attendance (“What? I thought you couldn’t come!”), appearance (“You look just like you did back then!” or “I wish the print on that name tag was bigger, because I don’t recognize you”), or achievement (“You turned out a lot different [or exactly the same] as I expected”). But I was also surprised how much it meant to spend time with my new-old friends. One, whom I’ve known since second grade, cried upon hearing my voice. I also choked back tears as I watched old football buddies reunite and other longtime friends rejoicing at the opportunity to spend time together once again. 4. Dancing Is Cool (Even Though I’m Not): Our DJ played a delightful (for most of us) mix of 70s hits and encouraged us toward dancing and karaoke. But most of us just wanted to talk, talk, and talk some more. I did get out on the dance floor, not because I’ve got any disco moves, but because I wanted to celebrate, and dancing provided a great avenue. And unlike the times I dare to dance in view of my children, no one at the reunion made fun of me. Or if they did, my ears were too old to hear it....

Dear Friends, My graduating class celebrates its fortieth reunion this fall. And I realize just writing that number dates me. One of the positives of social media has been the way I’ve reconnected with friends from high school and earlier. Soon, I’ll have the chance to see in person some of the people I’ve seen only online since our graduation day in the bicentennial year of (gulp) 1976. But the other day, I realized that I’m also looking forward to this reunion because I’ve learned a few things since that star-spangled graduation. When my classmates see me, they’ll no doubt notice my silvering hair, mom-curves, and face that reveals both laughter and pain. But I hope they’ll also see something else. The Martha (I went by my full name until I entered college) they knew back then isn’t the Marti they’ll see at the reunion. Here are four things I’ve learned since high school. It’s OK to be different. I always felt like the weird kid (raise your hand if you did, too). In younger years, I was left behind in the library, transfixed by my book, when everyone else returned to the classroom. I was still that kid in junior high and high school (who else wrote poetry in French and Latin?) I intentionally remade myself in my sophomore year and tried to be more outgoing, more fun, more cool (big word back then). But inside? I was still that scared little second-grader trying to fit in. Today, I’m still different. I still live through the books I read and the words I write. I still can’t dance (although I love to), and I’ve given up the idea of ever achieving even one degree of cool-ness. But guess what? All that reading and all those words have turned into a rewarding career. I cherish my family and friends more since I’ve learned I need alone-time to recharge. I dance no matter how silly I look. And raising five children has taught me moms aren’t cool anyway. What makes me different also makes me special. And I like that. A lot. What divides us is less important than what unites us. Through the process of reconnecting with friends online, I’ve realized I knew some people better in elementary school than later on. Three elementary schools united to form our junior high and high schools, so the friendship possibilities broadened. But the separate tracks (College Prep., Business, etc.) and various clubs or other activities meant we spent lots of time with one or two groups. That was good, because we got do things what we liked with people we enjoyed. But in the process, I lost some people who were...