Snapshots of Dementia: Whole Lotta Shakin’ Going On
“Whatever you do, if they take you out to lunch, don’t hold your drink like that.” Photo by Nira Giri on Unsplash Two close friends gave Tom this advice as they sat at one of our favorite Charleston restaurants (we lived on one of Charleston’s barrier islands before we moved to Florida). The year was 2007, and these two prominent businessmen were giving him tips as he prepared to interview for a ministry job in the Orlando area. But what difference would the way he held his drink make? When he told me about their comment, I knew exactly what they meant. Tom has what doctors call an “essential tremor” in his right hand. I don’t remember that he had it when we first met more than 40 years ago, but I do know he’s had it for a long time. This genetic condition causes involuntary shaking and can occur almost anywhere in the body, but most often in the hands, especially when performing activities such as tying shoes or drinking from a glass. The Mayo Clinic says it “is usually not a dangerous condition, but it typically worsens over time and can be severe in some people.” Tom’s sweet tea, in the grand old Southern tradition, came in a heavy glass. His friends noticed his hand shaking and didn’t want it to signal any sort of problem. I’m not sure if he remembered not to hold a glass during the interview process, but he did get the job, and our family moved to Florida that July. I bring up the tremor because it was yet another symptom I questioned when I became concerned about other issues and began our quest for a diagnosis. Tom’s first neurologist was the one who told me it was called an essential tremor, and that it was “nothing to be concerned about; lots of people have them.” At his casual words, I heaved an inner sigh. I had plenty of other thins to be concerned about. But of course back then, I didn’t realize how many. Only a few months after that visit, as I sat in church with Tom one summer Sunday, he put his arm around me, and I noticed it was shaking violently. His tremor, I thought. It seems so much worse. But then I realized something that concerned me even more: It was the wrong arm. I didn’t realize it then, but Tom was experiencing great stress. Our pastor told me during my lifechanging pre-Christmas visit that no matter what they discussed before the service or how similar the order of worship was each week, one of the many things Tom couldn’t seem to remember was when he should return to the platform to lead the closing hymn. He watched intently every Sunday, fearful of missing his cue. I’m sure he experienced other kinds of stress, but that Sunday, it all found expression in his trembling left arm. After that, I started paying more attention to his tremor. It had definitely gotten worse and had moved into both hands and arms, not just one. He laughed it off as “something I’ve always had; I don’t even know when it started,” but I viewed it as one more sign and symptom: Something was wrong with my husband. I shared this...
read moreSnapshots of Dementia: The Greatest Gift
It began with a gift. A simple Christmas gift. But it turned into so much more. Kringler (Dansk Kringle) Every year, our family carries out a tradition my mother began. Although we don’t have a Danish background, we bake a filled Danish coffeecake called Kringler at Christmas. My mother always made several to share with neighbors, co-workers and special friends, and I do the same. Some year, just like Mom, I’ve made more than 20 of these delectable treats. This December, my list was small. Our life seemed that way too. The year 2018 had been another year of challenge. Tom and I continued our marriage counseling. Our counselors had stopped it that spring for several months because of his lack of progress. They wanted to see what the neurologist and neuropsychologist said, but once those doctors cleared him, we moved forward once again. But 2018 was also the year I turned 60, and that July, my children surprised me with a family party and photos. I remember our oldest daughter saying, “Mom. You have to find a new neurologist. Dad dropped the ball multiple times when we were putting this together.” “But we did see another doctor,” I reminded her, referring to the many hours of testing with the neuropsychologist. I already felt overwhelmed with work and ministry and marriage. How could I even think about finding a new doctor? But all too soon, life forced me to think about just that. Because in late November, Tom acted on another “terrible, horrible, no-good, very bad” idea and lost a job he loved. A job he’d held for more than five years. Just a few weeks later, he made another bad decision in a temporary delivery position he’d found. Another job loss. What was happening? But Christmas is still the celebration of our Savior’s birth, and I still had so much to thank Him for, including the fact that I had a job and could work. That Christmas, I stopped by our former pastor’s house to bring him and his wife a Kringler. They had retired from the church in June, and although they knew about what had happened, I hadn’t spoken with them at all. In fact, I had barely spoken to anyone about it because I knew I would fall apart. My work schedule meant I finally showed up at my friends’ house with their gift on Dec. 24. They graciously invited me in, and when our former pastor asked me about what had happened, my tears flowed. I still look back on that day as a turning point. Not because I was finally sharing our struggles, as huge as that was, but because before I got very far into our story, this wise man looked over his glasses at me and spoke these plain and powerful words. “Marti. There has to be a neurological explanation for this. You’ve got to find a new doctor.” All these months, I had hesitated to speak with him—and almost anyone—about Tom’s problems. How many times had I heard, in one way or another, “He’s fine”? But our former pastor started telling me about the many changes he had observed in Tom. And his list, although work-related, was almost identical to mine: The incomplete tasks. The withdrawal from relationships. The forgotten...
read moreSnapshots of Dementia: ‘But He Seems So Normal’
Image by Gerd Altmann from Pixabay “But he seems so normal.” “I can’t even tell there’s anything wrong.” “He’s still so funny!’ “Are you sure?” I’ve heard all of these statements and more in our journey to and beyond Tom’s diagnosis with early-onset dementia (in his case, frontotemporal degeneration, or FTD). I don’t blame anyone for saying these things. Tom looks normal. He can still carry on a conversation. He still dresses, bathes and feeds himself (granted, he needs lots of reminders these days.) He still has his trademark sense of humor. In other words, he’s still very much Tom. And yet as I’ve shared, his dementia has stolen so much of his life. He can no longer hold down a job, drive or manage finances. Other than a few simple songs, he can no longer play his beloved trumpet. He has trouble making even the simplest of decisions. And the online golf game he loves? I’ve had to not-so-jokingly ban him from calling himself “stupid” or “moron” the many times he fails to make a shot. And as I’ve also shared, Tom has made other “terrible, horrible, no-good, very bad” decisions that have hurt himself and our family. For a season, he withdrew in large part from his relationships with me and with our children. Although he has declined in his cognitive ability in multiple ways, few are immediately obvious. His short-term memory seems to get shorter all the time. On average, he “loses” objects at least five times a day, often convinced they are gone forever and amazed when I easily find them. His appetite for sweets, always strong, has become voracious, and before a recent surgery, his obsession with walking (something he rarely wanted to do prior to this year) had increased so much that we were walking anywhere between 14,000-18,000 steps a day (yes, I’m thankful that so far, the last two seem to balance each other out!). And yet no one who saw him for a few minutes or even a couple of hours would know any of this (unless, of course, they’d been reading these posts). So yes: “He seems so normal.” And before my experience with Tom’s dementia, I know I looked at other dementia patients and thought the same thing. Oh, the disease must not be as bad as they thought. She seems so normal. Dementia is like many other disabilities in that it often remains hidden. Some of you have praised my transparency now. But in the three-plus years it took us to obtain a diagnosis, I kept very quiet. I shared my concerns with a tiny handful of close friends and our children. After all, the doctors kept saying he was fine. And even to me, Tom seemed (you guessed it) so normal. Except when he didn’t. I can’t describe or count the number of times I asked God to show me if he really had a problem because he had a good day or performed a task I wasn’t sure a person with dementia could do—only to have him act out a “good idea” like pouring the gasoline down the sink or becoming agitated because he couldn’t have what he wanted right when he wanted it. Although there is very little normal about dementia, the tangles in the...
read moreSnapshots of Dementia: Tom and the Terrible, Horrible, No-Good, Very Bad Idea
Photo by William Hook on Unsplash Sometimes, dementia has a humorous side. Tom and I have a running joke about his “good ideas.” Part of him realizes he doesn’t always make the right choices, but not enough to keep him from making the next wrong choice. One dementia spouse described it this way: “The part of him that says, ‘That’s not a good idea’? That’s gone. If you’ve been following these posts, you may have noticed a few of these “good ideas,” some much more serious than others. Here are a few more: —One day, I came home to a horrible smell. He couldn’t tell me what had happened, but I quickly figured out that Tom had poured nearly a quart of gasoline down our kitchen sink. Our son had drained the gas from a scooter he was repairing, and Tom decided we needed to get rid of it. (Besides the judgment problem, this incident helped me realize he had lost his sense of smell, also courtesy of his disease.) —Another day, I came home to find scraps of one of my thin acrylic cutting boards in the trash. When he couldn’t find the pan he wanted, Tom had used the board as a baking pan for a can of cinnamon rolls. He knew something was wrong, but when I asked him about it, he couldn’t even name the “pan” he had used. (He also said the rolls tasted fine!) Just as with the gasoline, God’s grace prevented a fire. —One memorable evening found me typing away in my upstairs office when I heard a sound no one wants to hear: a scream, then a crash. I must have skipped several stairs in my hurry to reach a moaning Tom, now lying on the floor of our two-story great room. Determined to put up a new television antenna he’d received for Christmas, he had climbed to the top of our 12-foot ladder and stood on top. When he still couldn’t reach the window ledge where he hoped to place the antenna, he began to make his way back down and, as he said, “only” fell from the eight-foot level. The emergency room doctor was amazed that he ended up with no broken bones or other serious injuries. I was too. —Last August, while we were staying with our friends awaiting the sale of our home, Tom locked himself out of his cell phone, something that has happened multiple times before and since. Convinced it was broken, he wanted to visit the cell phone store. The problem? I was at work, and the friends we were staying with couldn’t take him to the store till later that afternoon. An adult without Tom’s disease would have waited. But his behavioral type of frontotemporal degeneration (FTD) causes impulsivity in addition to poor judgment. Much like a child, when he wants something, he often wants it right away. Against our friend’s counsel, he took off on foot (by this time he was no longer driving) for the cell phone store. In 90-plus-degree heat. To a store at least four miles away. Our friend contacted me at work. I tried to reach Tom, but of course he couldn’t answer his phone. I went to my boss, asking for prayer. He prayed, but he also...
read moreSnapshots of Dementia: Unanswered Questions
Photo by Jules Bss on Unsplash I sat in the neurologist’s waiting room beside Tom, praying this visit would yield more results than the previous one. More than a year had passed because we’d somehow missed an appointment. Until then, I trusted Tom to make and keep his own calendar. But as with many other things, I realized I needed to take charge. In some ways, this appointment seemed much the same as our first. The quick memory test, which he again passed with no problem. The questions about how his memory issues were affecting his daily life. And yes, minimal answers from Tom. But this time, I made more attempts to speak up. I didn’t know of a connection, but I told the doctor about the problems mentioned in this post that had moved us into marriage counseling. I told him Tom had stopped playing his trumpet and become more forgetful. I didn’t belabor my points, but I did express my concern. The neurologist stared down at the paper where he had, presumably, recorded scores from Tom’s tests. “Well, he’s better than the 80-year-old Alzheimer’s patients I see.” Tom was 62. A typical introvert, I can create all sorts of snappy comebacks. I just don’t think of them until five minutes too late. If a doctor made such a ridiculous statement today, I’d walk out. Politely. But back then, I listened. I left the questionnaire I’d filled out detailing the changes in Tom folded in my purse. What difference would it make? With obvious reluctance, the neurologist ordered some additional testing with a local neuropsychologist. Tom went on his own for an appointment that lasted a few hours. Soon, I accompanied him to hear the results. Surely they must have found something, I told myself. How else could he have so many problems? The difference between our situation now and 15 months or so earlier was profound. And all of our young adult children, some of whom had wondered if I were reading too much into things, agreed. The neuropsychologist explained the test results, but in the end, he saw few areas of concern. Most of Tom’s problems seemed related to ADHD, the one diagnosis we already knew about. And any other issues stemmed from shame over his poor choices, he told us. A kind man, he spoke quite firmly with Tom, affirming that God could still use him in ministry and that those behaviors did not represent the person he was. I agreed. But is that all? Tom, as usual, seemed largely indifferent. And I felt the same way I did at the other appointments: confused. If nothing’s wrong, why has he changed so much? Why can’t he seem to organize the simplest tasks? Why is he putting our family and finances in such jeopardy? During this season, I often felt as though I had three jobs: my full-time job with the publishing company, my freelance writing and editing work, and reminding Tom of the must-dos in his life—the ones I knew about, anyway. Small wonder the weeks passed in a blur. But they also passed with a prayer I offer to this day, asking God to make up for the lacks in Tom’s life. For both patient and partner, dementia brings with it a huge weight...
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I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
