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 symptoms Tom has, but they are not the only or even his only symptoms). Some patients don’t show memory loss until they are quite far along into their disease. So why is that the major symptom we associate with dementia? 5. Dementia is a terminal disease. I remember how shocked I was the day I read that FTD will one day kill my husband. Of course, like anyone else, he could die from a number of other causes. But I never understood that the normal course of dementia means that the brain will continue to lose function, which will result...
read moreSnapshots 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 multiple times to take his medicine (vitamins as well as prescriptions) both morning and evening. He may respond that yes, he will take it, but that doesn’t necessarily mean he will without more reminders. And he may say yes, he has taken it, but that doesn’t necessarily mean he has. So on the days he occasionally misses or doesn’t take his morning dose till late morning, he tells me, “See how much money I’m saving us?” On this, he’s only half-kidding. Always careful with money (except when he was giving it away to online scammers), he is somewhat obsessed with...
read moreSnapshots 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 celebrate this on your birthday—and every other day as well. I know you are starting to learn about Jesus. A long time ago, some of Jesus’ followers asked Him who was the greatest. (Even way back then, people worried about silly things like that.) Instead of pointing out the strongest or the biggest or the smartest one, Jesus called over a little child and had everyone look. He told His followers, “I tell you the truth, you must change and become like little children. Otherwise, you will never enter the kingdom of heaven. The greatest person in the kingdom of...
read moreSnapshots of Dementia: Driven to Distraction, Part 2
Photo by Khorena Sanders on Unsplash Author’s Note: This post is part two of a two-part series. Check out part one at this link, then pick up the story below. For one of the first times ever, I posted a brief summary of my concern on the Facebook support group I had recently joined for spouses or partners of those with frontotemporal degeneration (FTD). By this time, my kids and I had looked at the symptoms of FTD, behavioral type, and been amazed. After months and years of trying to find out what was wrong, here was a disease that looked like a perfect match. Why had no one mentioned this before? We’d have to wait for more testing, but it certainly looked like this was a possibility. I may write more about this later, but this group was rapidly becoming an information source, sounding board and source of encouragement for me. And this case, it was a lifeline. I shared the various driving-related incidents that had occurred and that we still didn’t have a real diagnosis or definitive answer. But to a person, everyone who responded (and there were more than 40 who did) to my question said: Do it now. Don’t delay. Keep him from driving no matter what. I read stories of accidents, of liabilities, of spouses who were still driving and had major problems. I read of doctors who refused to say the FTD patient needed to give up their license, only to have an accident occur. But mostly, I read what I’d already read on this site: Our story. And I knew it was time. I shared all this information (what had happened with their dad and driving, what our former pastor had said, what the other spouses had said) in brief with the next set of reinforcements I called in: Our children. I am sure I sounded at least somewhat irrational (after all, by this point, I probably had sleep deprivation.) But I could not in good conscience keep letting Tom out on the road. Or could I? I knew I needed the wise counsel of those who also loved him and wanted his best. I didn’t want to mess this up. I don’t actually remember which of our children I contacted, but I do know they all agreed to “talk amongst themselves.” The conclusion? No, Dad should not drive. Yes, they should help me tell him. Our two oldest daughters suggested they initiate a Skype call with Tom and me (this was before Zoom had reached its present-day popularity). “After all,” said one, not quite tongue-in-cheek. “He’ll know we must be serious if the two of us agree.” We made the call. They cried. We cried. But we told Tom that we were just too concerned for his safety, and that of others, to let him keep driving. Some special friends were praying during this call, knowing what a hard message this would be to give and receive. And Tom took it better than I anticipated so I’m sure the prayers were powerful and effective. His main concern in the moment? Work. “So are you saying I’m just not going to work anymore?” I suddenly realized that yes, that’s probably what I was saying. Maybe there would be a way he could...
read moreSnapshots 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 didn’t want to keep them. Here’s what I didn’t understand: He couldn’t. Within a very short period of time, 10 days or so, several things happened that spurred us to action. The first: Tom got a ticket, not for speeding, but for turning left on red. With a passenger in his car. And with a policeman right behind him. Then and now, I looked on this as providential. The policeman gave him quite the lecture. Maybe it even stuck for a few hours or days. But at least he didn’t cause an accident. I thought the rideshare company might flag...
read moreWelcome
I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
