Photo by Max van den Oetelaar on Unsplash Cough. Splutter. Choke. Spit. Repeat. If you lived at our house or followed us on our morning walks, this is what you would hear almost every day. Sometimes a little, sometimes a lot. And if you stayed with us, you might hear these sounds periodically throughout the day as well. Any regular readers will have noticed that I’ve shared some dementia symptoms that surprised me. This one definitely did—for at least two reasons. First, I couldn’t find a doctor who paid attention when I mentioned it. And second, it appeared a few years ago, right around the time I first began wondering if Tom had some sort of problem. No list of initial dementia symptoms I saw at the time mentioned this. Because Tom has chronic asthma, diagnosed in childhood, when he first started struggling with this choking problem upon awakening, I thought his asthma was getting worse. When we walked our dog in the morning, he would often cough and spit multiple times in only a few minutes. I tried not to say it, but I would think what you may well be thinking right now: Gross! But I was also concerned. I urged him to tell his PCP. I tried to get him to see a pulmonologist (respiratory specialist). When he didn’t comply, I kept reminding him. When we visited the first neurologist, I didn’t mention this coughing/choking/spitting problem because I thought we were looking at Tom’s mind and memory. I had no idea they were connected. Two years later, after our life had changed drastically and I knew I needed to get some medical answers, I mentioned this issue to three different neurologists. Not one seemed concerned. The most one staff member said was, “We’ll deal with that later.” But still and again, I knew something wasn’t right. So many of you have commented about how well I’ve done and how strong I’ve been. Please know that what I’m trying to do is to show you how not well I’ve done and how many things I missed along the way. I hope that, by sharing my mistakes, I’ll help prevent you from making the same ones. I deserve no hero badges. And God gets all the credit for the ways I’ve learned and grown. Again, every dementia is different, and every patient is different. I don’t know why this issue, which I now know is called dysphagia, showed up so long before Tom’s diagnosis. But earlier this year, when we had our first visit with his PCP here in South Carolina, I brought up the coughing/choking/spitting one more time because it seemed worse. The doctor looked at me....

“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...

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...

I know You’re able and I know You can/ Save through the fire with Your mighty hand/ But even if you don’t/ My hope is You alone. I sang along with MercyMe as I drove to work, my voice quavering as the tears streamed down my face. Why did I even bother putting on makeup? It’s a good thing I have a long drive. Lord, give me the strength I need. This scene repeated itself in my car almost every morning during the late spring, summer and fall of 2017. But why? Hadn’t the neurologist reassured us only a few weeks before? Yes, by the doctor’s standards, Tom was fine. But more and more cracks showed up in his life. As the days went on, some of these revealed themselves as fault lines. As they widened, the elements around them threatened to collapse. Our communication. Tom’s job. Our finances. Our marriage.   I love my husband and want to honor him. I pray that nothing I share makes anyone think less of this loving, creative man created in the image of God. But I also feel compelled to warn people of the potential effects of a disease I believe comes from the pit of hell. Strong words. But words from the heart of a woman whose husband of more than 30 years went from caring and committed, leading others to walk in faith, to falling prey to various online scams, often with a sexual connection, and showing decreasing interest in both his family and spiritual things. One day, he called me at lunch. “Someone is blackmailing me through Facebook.” “What? What do you mean, blackmailing you?” “They’re threatening me. If I don’t pay them, they’ll post on my wall.” “What are you talking about? Who cares if they post about you? No one will believe it anyway! Of course you shouldn’t pay!” But he continued in an increasingly frantic tone, telling me about connecting with someone he said was a woman and that if he did not comply, “she” would post a video he would never want anyone to see. I took a deep breath. “You’re on your own. Do whatever you want.” And for one of the few times in my life, I hung up on my husband. Through my shock, I realized Tom had a serious problem. But I had long believed God would make up for any perceived lack in my life. I could trust Him. Hence the MercyMe song. The tears. The prayers. Tom did pay the money, and he said the police told him nothing could be done. But this action and others that followed moved me to do something that helped me survive...

Tom and I sat in the stiff-backed chairs at the neurologist’s office. After months of delay, he had told his primary care doctor he might have some memory issues. That doctor scheduled an MRI and referred him to a local neurologist. A few months before, I had taken a full-time job with a publishing company—the first time I’d worked outside the home since our oldest daughter was an infant. I had homeschooled our five children for a total of 21 years and, when our youngest was a preschooler, begun a freelance writing and editing career (see the rest of this website if you want to know more). But now our two youngest daughters were in college. I had no desire to leave home, but I felt a new compulsion to get a “regular” job. Deep down, I wondered how much longer Tom would be able to work, and although money had never been my primary motivation, I realized a regular salary and benefits might help. I had no way of knowing how much or how soon. That day, I took off work to accompany my husband, my only sure way to receive an accurate report. At the neurologist’s office, Tom was “on” in ways that had become less frequent, charming every office worker and medical assistant. The neurologist, however, was not as easily charmed. For some reason, he hadn’t received the MRI report (although we later learned it showed nothing unusual). He then asked Tom the reason for his visit. “I’m having a few memory problems.” The doctor pressed further. “Have they affected your family?” “Not really. Maybe sometimes.” “Have they affected your work?” “No. I have a good assistant.” “So your memory problems haven’t caused any issues with your job?” “No, none at all.” The neurologist asked a few more questions, almost all of which Tom answered much more casually than I would have. My frustration mounted. How can he say this isn’t affecting his job? I had noticed numerous times when he forgot things or failed to complete tasks. In fact, if it weren’t for his capable assistant, he would never have been able to keep up. But the neurologist didn’t ask me any questions. When I tried to comment, he pivoted back to Tom. Soon, he began a brief memory test. Tom missed some questions and did well on others. And since the test was short, we got immediate feedback. “You do have some problems with your memory. Many people have this, and it never gets any worse. I imagine that will be the case with you. Don’t worry. But come back in six months, and we’ll see how you’re doing.” Although Tom and I rejoiced...

“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...