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Snapshots of Dementia: ‘But He Seems So Normal’

Posted by on July 9, 2020 in Dementia, Uncategorized | 14 comments

Snapshots 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...

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Snapshots of Dementia: Tom and the Terrible, Horrible, No-Good, Very Bad Idea

Posted by on July 7, 2020 in Dementia, Uncategorized | 14 comments

Snapshots 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...

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Snapshots of Dementia: Unanswered Questions

Posted by on July 2, 2020 in Dementia | 10 comments

Snapshots 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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Snapshots of Dementia: A Step in the Wrong Direction

Posted by on June 30, 2020 in Dementia | 6 comments

Snapshots of Dementia: A Step in the Wrong Direction

Photo by Ahmed Zayan on Unsplash Where could he be? Traffic was extra heavy the night of our Sunday school Christmas party in 2016, and although I left work as soon as I could, I still arrived at the home of our pastor and his wife about 15 minutes late. But where was Tom? He had volunteered to bring one of our more senior class members with him, so he would have left from the church and picked her up on his way. Neither of us liked to be late, so since I couldn’t control what time I finished work, I figured he would arrive first. Not prone to worry, I busied myself helping set up the huge array of food for our potluck meal (remember those?). Still, I kept my phone handy. We waited, and waited, and after some other late arrivals, we finally started the meal without our two stragglers. I didn’t want to bug Tom if he were stuck in traffic. So I kept looking at my phone, holding off on my own meal until he arrived. Surely he’ll show up in just a few more minutes. More than an hour after the party began, I got my phone call. As I anticipated, Tom sounded upset. “I don’t even know what’s going on,” he told me. “It’s like I can’t get there from here. We’re coming, though.” “How long do you think you’ll be?” “I have no idea.” And just like that, he ended the call. In another 20 minutes, I had another call, this time more frantic. “Tell me the address,” he said. The address? Why does he need the address? Wouldn’t he have already entered it in his phone? And besides, he’s been here multiple times. What on earth is going on? Finally, nearly two hours after the party started, Tom pulled up with our friend after what should have been at most, even in holiday traffic, a 30- or 45- minute drive. Always gracious, she joined the happy group, chattering away about the traffic and ever-present construction. But Tom remained silent. Angry? Embarrassed? I couldn’t tell. All I knew was that no, he didn’t want to eat. No, he didn’t want to play games. And yes, he was extremely upset. For a few minutes, I thought we might need to make a quick exit. I had rarely seen him in such a state. He sat across from me at the table. But once he realized the party was well underway and no one seemed to pay much attention to his tardiness, he relaxed. We finished the evening well and enjoyed the fellowship with dear friends. Still, I was thankful when another man volunteered to take Tom’s passenger home in the church van.  I had no idea if Tom could get her back to her condo, and I knew neither of them needed the added stress. What I also knew was that this represented a huge change. A limousine driver during our seminary years, Tom had always been one of those people who could get to anywhere from anywhere. Even when we moved to a new city, he learned his way around right away. As for me? I knew GPS was God’s mercy on my direction-impaired life. After this Christmas-party incident, I noticed his...

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Snapshots of Dementia: Hard to Swallow

Posted by on June 23, 2020 in Dementia | 16 comments

Snapshots of Dementia: Hard to Swallow

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. “Let me see about that.” Grabbing a tongue depressor, she headed over to Tom, who was seated on the examining table. “Open wide.” It took all of 30 seconds for her to discover what no one else had thought to check. “No wonder he’s choking. He’s lost his gag reflex, probably some time ago. When you and I sleep at night, we automatically swallow any drainage we produce. His brain doesn’t tell him he needs to do that, so he wakes up choking and spitting.” This time, I was the one having trouble swallowing. No gag reflex? Why didn’t anyone...

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