Snapshots of Dementia: Magnificent Obsession
“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 if they were standards, shifting in and out of neutral in his quest for low numbers. And of course, he saw nothing unusual in any of this. —Sweets. He prided himself on not eating lunch at work, but he had an entire drawer of candy pilfered from the receptionist’s desk jar. He kept a stash of candy in his dresser drawer too. He also became increasingly obsessed with Wendy’s Frostys and would get one (or more) whenever he could. Some of his obsessions have changed through the years, but our local Wendy’s already knows him very well. One of the...
read moreSnapshots of Dementia: Doctor, Doctor
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 at what sounded like good news, I felt both relief and concern. Lots of people have this? It probably wouldn’t get any worse? That sounded wonderful. But why had our lives already changed so much? When I shared these results with our kids, I remember saying, “I’m happy to be wrong. I don’t want him to have any kind of issue. I just hope I don’t find out someday that I was right all along.” If I had known more about dementia, I would have pressed harder. And if I had known many dementia patients exhibit anosognosia, a condition in...
read moreSnapshots of Dementia: Show Me a Sign
“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 life-of-the-party guy who did his best to laugh and help others feel at ease. Suddenly, I often found myself the leader in conversations while he sat quietly. He would still joke with people, but this radical change bothered me. A lot. These are some, not all, of the changes that helped me move from wondering to urging him to see a neurologist. Even though we eventually discovered he has frontotemporal degeneration (FTD), not Alzheimer’s, this list helped me make that decision. We all forget things occasionally. We all make mistakes. But when the issues became more than occasional, I could...
read moreSnapshots of Dementia: Surprise!
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, signs that still didn’t show up on an MRI he had close to a year later. And I knew my quick-witted husband. I knew he had consistently been the first person with a witty retort and the last person to need help evaluating a situation and making a rapid assessment. The video one of our daughters took of us entering the room captured the reason for my concern. After watching it once or twice, I couldn’t look at it again. It only served to remind me of what I feared might be true but hoped and prayed was not. Of...
read moreSnapshots of Dementia: And So We Begin
Before beginning a Hunt, it is wise to ask someone what you are looking for before you begin looking for it. —Winnie the Pooh “By the time they’re diagnosed, most people with dementia are already mid-stage in their disease just because the diagnosis process is so long,” the facilitator told our class of dementia caregivers. “I would say on average, most people take three and a half years to get diagnosed.” No one else looked surprised by this information; they’d no doubt heard it before. But it shocked and energized me. By the time of this class (January 2020), I knew my husband suffered from a dementia called frontotemporal degeneration (FTD). I knew FTD is considered a rare dementia (only 10-20% of people with dementia have FTD), is typically an early-onset disease and is often misdiagnosed. I knew that in our case, I’d suspected a problem for more than five years and had actively pursued a diagnosis for more than three. I knew that during that pursuit, my husband had lost three jobs in a row and given away more than $25,000 to online scammers while two neurologists and a neuropsychologist were still telling me he had no significant cognitive issues. But really? The average length of time for a dementia diagnosis is three and a half years? Even for someone without a rare type? Some of the other dementia statistics stagger me too. Across the globe, experts anticipate that dementia rates will double every 20 years, with an estimated 81 million cases by 2040. Accurate diagnosis matters because the treatments for dementia vary with the disease. In the case of FTD, some of the medications used to treat other disorders can even cause harm. Accurate diagnosis also matters because of pain. I don’t refer primarily to physical pain but to the mental, emotional, financial, and spiritual anguish that touches so many families as dementia rakes its ugly claw across their lives. And so I write. For my husband, who remains largely unaware of the depth of his cognitive issues. For my children, who face the pain of watching their once-vibrant father fade. For other dementia families whose lives have been tragically and permanently disrupted. For my fellow caregivers, who need to know more than I did when we began this journey down a path we did not choose. And for all those who need to see how this set of diseases leaves its ugly imprint on the lives of individuals created in the image of God. Although I’ll try to provide helpful links, I’m not a doctor or researcher, so please don’t look to this blog for medical advice or counsel. What I hope to share here are small glimpses, snapshots as it were, of dementia as experienced by our family. As time goes on, I may include others’ stories as well. Because I’m a caregiver and sole provider for my husband and me, my posts may not come as regularly as I’d like. But for now, this blog is something. And something, as I have learned, is always more than nothing. I hope to share more soon. Do you have a family member with dementia? How long did it take to obtain a diagnosis? Feel free to leave a comment or a prayer request. Your story matters. ...
read moreWelcome
I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
