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Snapshots of Dementia: More Puzzle Pieces

Snapshots of Dementia: More Puzzle Pieces

Photo by Fabiran Kühne on Unsplash Clearly life has gotten in the way of blog posts, and that will happen sometimes. But as I return to the blog, I want to dive back into our journey toward diagnosis (I’m really not trying to make it take as long as the actual journey!).  You can find the most recent segment related to diagnosis at this link. In that previous post, I discussed a visit with the third neurologist we saw in our effort to discover what was going on with Tom’s health/memory/behavior and other problems. By this time, I had made some big decisions, most especially the ones that involved selling our home and moving to be closer to family in the upstate of South Carolina (here, we’re closer to our two oldest daughters, one a few minutes away from us and one in Atlanta, only two hours away). I knew that no matter what the doctors said, something was definitely wrong with Tom. I knew he had lost three jobs in quick succession and that we could no longer allow him to drive. And I knew I couldn’t count on him to lead and provide for our family in the way he had for so long. But I still needed help to get a diagnosis. I hoped it would be a path toward disability benefits if, as we thought, he could no longer hold down a job. And I especially needed a diagnosis because I hoped doctors could stop or slow down the disease. This third neurologist was the first one to mention FTD, or frontotemporal degeneration. I’m a writer and editor by profession and also by identity. That means I’m the type of person who will research and read everything I can on any given topic. I’ve already told you more in these posts about FTD than I knew at that point, now about a year and a half ago. But here are some of the key characteristics that stood out to me in my very early research on the topic: —FTD typically strikes younger people (the age range for onset is 21-80, but the majority of cases occur between 45 and 64.) Tom had just turned 63, and I’d suspected problems since well before he turned 60. —FTD is frequently misdiagnosed. Enough said. —FTD is less common and less known than Alzheimer’s. —FTD has no known treatment or cure. This site says, “no current treatments stop or slow the progression of the disease.” And that’s one of the reasons I want to keep writing. As we raise awareness, we can also advocate for research (it’s happening, but slowly) and work toward a brighter future for others faced...

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Snapshots of Dementia: 7 Facts I Wish I’d Known (Before I Learned by Living)

Snapshots of Dementia: 7 Facts I Wish I’d Known (Before I Learned by Living)

Pixabay/Gordon Johnson Much of what I’ve shared in these snapshots of dementia so far has a connection to my own ignorance. Of course, you don’t know what you don’t know. So while I don’t blame myself for what I didn’t understand, I sometimes wish I could have a do-over—for Tom’s sake and for my own as well as our family and friends. If a do-over were somehow possible, here are a few of the things I wish I’d known earlier on. 1. Dementia is not a natural consequence of aging. Because one of my grandfathers showed signs of dementia in his 80s and people said, “That’s what happens when you get old,” I honestly thought his age was the primary factor (even though nothing like this happened to my other grandparents, who all lived into their 80s or 90s). I wish  I had known more about Grandpa’s problem and even tried to help him more. I think what I saw in him contributed to my misperception (which, I have learned, is common). 2. Dementia is not one but many diseases. Like most people, I’d heard of Alzheimer’s. I knew a little about Parkinson’s Disease, which has related dementia. But I certainly didn’t know about the wide range of dementia disorders, symptoms and problems that exist. Some of the most common in addition to Alzheimer’s include Lewy Body Dementia, vascular dementia and the type my husband has: frontotemporal degeneration or FTD. 3. All dementias are not created equal. This is a corollary to No. 2, because each disease has its own characteristics and qualities. Because Tom’s dementia is still classified as rare (rare enough that many neurologists and other medical professionals seem to have little knowledge of it), I write partly to inform others. I had no idea, for example, that dementia could cause drastic shifts in behavior, personality and ability even at a fairly young age (many FTD patients are much younger than Tom, who, I now believe has shown symptoms for some time). I didn’t know, and as you may have read in the blog, neither did most of our doctors, apparently. 4. Dementia involves more than just memory loss. As explained above, dementias vary from type to type. They can also vary significantly from person to person. Pre-diagnosis, my main perception of dementia was that people who had it grew older, forgot things and became confused. I did not, however, realize that dementia symptoms could include things like loss of the sense of smell (no, this is not the COVID-19 temporary loss); a slowing down in overall thinking; obsessive-compulsive behavior; swallowing issues; apathy and withdrawal from social relationships; language loss and so much more (these are all...

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Snapshots of Dementia: A Merry Heart

Forgetful Jones (Facebook/Sesame Street) “A merry heart does good, like medicine, But a broken spirit dries up the bones” (Prov. 17:22, NKJV). We all have different ideas about dementia; I know I did before we began this journey. And truly, even as transparent as I try to be on my blog, I haven’t yet caught up to present-day except for some occasional glimpses. So this is that! Anyone who knows Tom, in past or present, knows about his trademark sense of humor. Although he has the typical anosognosia (“without knowledge of disease”) of many people with dementia and doesn’t realize the extent of his deficits, he does now know he has frontotemporal degeneration (FTD), and he does know his thinking has changed. He still jokes, although he’s often using lines he’s said for many years. But sometimes his comebacks surprise me, especially since his thinking seems to have slowed down a great deal in the past few months. Last spring, while we still lived in Florida, I made a casual joke about something he would “probably forget.” He looked at me very seriously and said, “I think this is something that is OK for me to joke about, but not OK for you.” Though this may seem like a double standard, I understand exactly what he meant. Many of us women are sensitive about our weight. It might be fine for us to joke about our own chubby tummy or thigh rolls, but we don’t prefer that anyone else do so. And it’s the same with dementia. I’ve been careful ever since to make sure Tom initiates the jokes and/or I only repeat things we’ve said multiple times. As a person created in the image of God, he is and will always be worthy of both respect and love. That being said, Tom has retained his sense of humor. I think I mentioned our joke about his “good ideas” once before. Somehow it has stayed with him that his ideas aren’t the best (to read more about this, see this post.) And so occasionally he will say to me, “I have a great idea!” knowing it may not be, or describe something silly that happens (like this week, when he failed to put the carafe under the coffeemaker and sent coffee all over the counter, then put the top back on incorrectly so that even more coffee spilled) as a “great idea.” I am thankful that having the privilege to work from home has prevented most of the other sorts of “great ideas” from happening. Something else he jokes about is taking his medicine. His short-term memory has become so very short that almost every day, I remind him...

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Snapshots of Dementia: 3 Lessons From Lincoln for Grandma (and any Caregiver)

Snapshots of Dementia: 3 Lessons From Lincoln for Grandma (and any Caregiver)

Tom meets his grandson, 1 month old. Dear Lincoln, You’re too young to read this although I’m sure, as advanced as you already are, it won’t be long before you are reading not only letters but entire books. First of all, I want to wish you a great  big HAPPY BIRTHDAY! Grandpa and Grandma love you very much and can’t believe you’re already 3 years old. As soon as you’re old enough (and hopefully no sooner), someone will tell you about the sad things that happened many years ago on this day. I want you to know that your birthday has given 9/11 new meaning for our family. We do remember the sad things, of course, but we also celebrate the wonderful ones—like you. And do you know what? That’s just who you are in our lives. Your joy in the world God has given us has helped change what might otherwise be a sad time into one of wonder and delight. Watching you play and laugh with Grandpa blesses me more than you can possibly know. You love him in a pure and powerful way that amazes, inspires and challenges me every time. He even told me once that he doesn’t have to worry about what he might say or do around you because he knows you love him no matter what. That is a huge gift to us both. I want to share with you three things I have learned from you, Lincoln. And all three of them help me do a better job taking care of Grandpa. 1. COMPASSION: Grandpa coughs a lot, and sometimes he stumbles. And almost every time you’re around when he does one of these things, I hear you say, “You OK, Gwampa?” Your heart of concern helps me not taking even the smallest or most-repeated issues for granted. Lincoln, Grandpa is always more OK whenever he is with you. 2. PRESENCE: You love nothing more than having Grandpa and Grandma come up to your room and play, or sit beside you on the couch or even travel with you on the iPad as you videochat with us. We love the pictures you color, the cards you “sign” and the crafts you make. But even at only three years old, you’ve already taught me: Presence is the very best present of all. 3. CELEBRATION: Grandpa and I still laugh about the day you told us, “I’m so amazing!” I’m glad you have so much wisdom at such a young age. You are amazing, Lincoln, because of an amazing God who loves you even more than we do and made you “in an amazing and wonderful way” (Ps. 139:14a, NCV). We need to...

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Snapshots of Dementia: Driven to Distraction, Part 1

Snapshots of Dementia: Driven to Distraction, Part 1

Photo by Marc-Olivier Jodoin on Unsplash Before we could return to neurologist No. 3 for the second time, a crisis occurred that forced our family into a huge decision. At this point, Tom was still driving. In fact, he was driving for a ride-share company. Sounds crazy for someone who might have dementia, right? Well, yes. And no. Think about it. He had lost three jobs in quick succession. Where could he find work? He loved to drive. And although he struggled with directions now, God and GPS cover a multitude of sins. Add that to the fact that no doctor had diagnosed any specific problem beyond depression, and you’ll see why (although I did have concerns) Tom remained on the road. I discussed Tom’s driving with my adult children (for a while, I had noticed him following more closely than he should) and they agreed that removing driving privileges would be difficult. When necessary, maybe a doctor could make that decision, but not right now. That was our plan. So yes, I’ll go ahead and say it: We were wrong. And I apologize to anyone I may have unknowingly scared or hurt because we were not more proactive. And I pray—and fear—for all of those who may be endangered by those still in the diagnosis or pre-diagnosis process with a disease like Tom’s. I’m convinced; there are many still on the road who should not be. Here’s what happened. Tom was driving for the rideshare company and quite happy to do so. I wasn’t as happy, because he was staying out for longer and longer periods of time. He had a certain daily financial goal, and he would stay out until he reached it. No. Matter. What. Of course, I didn’t know then about the obsessions his type of dementia (frontotemporal degeneration, or FTD) causes (read more about that in this post.) His desire to work and the low pay rate played right into this. The more he drove, the more he wanted to drive. And although I didn’t realize it at the time, I now know he didn’t have the logic or understanding to think, I’m tired. I should stop driving. I need to go home. For him, it truly was all about the money. He was so happy to contribute to our family finances again that he would drive. And drive. And sleep at the side of the road. And drive. As days and weeks passed, I became more and more concerned about his hours. I had more than one serious talk with him where he would promise to “only” work eight hours. Of course, he never kept those promises. At the time, I thought he...

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Snapshots of Dementia: Third Time’s the Charm

Snapshots of Dementia: Third Time’s the Charm

Photo by Steve Johnson on Unsplash Before I started these “Snapshots of Dementia” blog posts, I asked my Facebook friends about the idea. The volume and intensity of responses amazed me. I remember thinking at the time, OK, people, I hope all of you who said yes will read it. And you have. I’ve had more interest in these dementia posts than anything else I’ve written here (I posted regularly for a few years before Tom’s health began to go downhill and I took a full-time job.) So as a preface to today’s post: THANK YOU! I am grateful my words make a difference. I believe our story matters, or I wouldn’t share it. Ultimately, I pray it makes enough of a difference that others won’t have to wait so long for diagnosis or disability or even just plain old understanding (reference: man in the red truck). But in the meantime, I am living this journey as well as writing it. And this week, that’s been a challenge. For now, let’s just say the government and the medical profession are working hard to make sure I have more to write about. At the point where I last shared about our progress, we had finally visited Neurologist No. 2, with fairly unsatisfactory results. I was on my way to making an appointment with Neurologist No. 3: In the meantime, to review the medical part of our journey so far: 1. Neurologist No. 1 (two visits, a year-plus apart): “He’s fine, just short-term memory problems, no worse than my 80-year-old Alzheimer’s patients.” 2. Neuropsychologist (one visit for testing, one for feedback): “He’s fine, just ADHD and shame from poor behavioral choices. He can do better.” 3. Neurologist No. 2 (two visits a few weeks apart): “He’s sort of fine. He has depression. I need to watch him closely.” (No, thank you). You may recall I had already enlisted the help of a prayer team. One of those prayer partners, a dear and longtime friend, is also a registered nurse whose husband has Parkinson’s Disease. As she and I talked, I expressed my concern that Tom might have Dementia With Lewy Bodies (DLB), a Parkinson’s related disease (it has gained recent notoriety because comedian Robin Williams apparently had this diagnosis). He had several Parkinson’s-type symptoms (I’ve written about the tremors, and he also drags his feet when he walks and sometimes stumbles.) From what I had read about DLB, I knew it might be a match. My wonderful friend urged me to seek (and even helped me seek) the care of a neurologist who was also a movement specialist. I called and explained our situation and secured an appointment. They needed Tom’s...

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