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Snapshots of Dementia: Driven to Distraction, Part 1

Posted by on August 26, 2020 in Dementia | 4 comments

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 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...

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Snapshots of Dementia: The Great Depression (or not)

Posted by on August 4, 2020 in Dementia | 6 comments

Snapshots of Dementia: The Great Depression (or not)

Photo by Stefano Pollio on Unsplash If your snapshots are anything like mine, they fill a shoebox (OK, mine fill an entire trunk) and most are in random order. I have long-ago dreams of putting them in beautiful, chronological albums (I’m sure God has a special place in heaven for those who have achieved this wondrous feat), but so far, it hasn’t happened. I don’t think it will happen with these snapshots either. So, although I’ve written somewhat chronologically, you may have noticed I’ve also skipped back, forth and around as I’ve focused my lens on different parts of our journey and of Tom’s disease. And I imagine that, even if you’ve never been exposed to dementia before, you’ve seen that this disease is exactly like that. Messy. Disorganized. Uncomfortable. I’ll move us forward a bit on our timeline to our visits with a second neurologist. We’re all the way up to early 2019 now, and many things have changed for Tom. Just the year before, his first neurologist told us (for the second time) that things were basically fine, that he just had some short-term memory loss and (for the first and only time) that he was “better than the 80-year-old Alzheimer’s patients I see.” A neuropsychologist had also done extensive testing (which I eventually found out our insurance did not cover, although no one told me that at the time; I mention this so anyone reading will check first and not have to shell out the nearly $1800 I did almost a year later). This doctor concluded that Tom was very intelligent, probably had adult ADHD (a diagnosis he had already received) and was dealing with shame as the result of some of his extremely poor and uncharacteristic behavioral choices over the past few years. No one told us about frontotemporal degeneration (FTD), behavioral type. No one mentioned that dementia could not only cause memory loss and confused thinking but that it could also cause personality changes of the extreme type we saw in Tom. No one mentioned that perhaps he didn’t have a moral problem but a mental one. That’s why I have such a deep commitment to tell our story. I did suspect a problem; I just didn’t realize so much of what I was seeing in my husband was tied to what we now know to be FTD. But I digress. Finally, we visited a second neurologist. This one came recommended from more than one friend. I was confident that this time, we would get some answers. So much had changed in Tom’s life that I felt sure the doctor would see the problems right away. We had (well, I had, because Tom could no longer fill out anything so complicated) lots of paperwork to fill out before this visit, but I didn’t mind. I wanted the doctor to have information. I even added a copy of a letter from our former pastor about the changes he had seen in Tom’s work ability, moving from “highly competent” to much less than that over the more than five-year period Tom had served under him. At this  visit, the neurologist and her staff asked lots of questions. In fact, we spoke more with the staff than we did with the doctor. She examined Tom briefly and...

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

Posted by on September 11, 2020 in Dementia | 6 comments

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 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...

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Snapshots of Dementia: Driven to Distraction, Part 2

Posted by on September 3, 2020 in Uncategorized | 0 comments

Snapshots 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...

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Snapshots of Dementia: Third Time’s the Charm

Posted by on August 20, 2020 in Dementia | 10 comments

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 records from neurologists No. 1 and 2, so I called and requested them. No problem, right? By now, you know the answer: Wrong. Neurologist No. 1 sent the records. Neurologist No. 2 was not nearly so accommodating. No, they could not send the records electronically. Yes, we could get them if we insisted, but they didn’t recommend it. And yes, we could only get them if we went into the office and paid a fee. Because I had Tom make the request, it took three phone calls to find out this information. And of course, we paid the fee (who...

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Snapshots of Dementia: To the Man in the Red Pickup

Posted by on August 11, 2020 in Dementia, Uncategorized | 20 comments

Snapshots of Dementia: To the Man in the Red Pickup

Dear Man in the Red Pickup, Photo by Neonbrand on Unsplash I know you were angry yesterday morning as you hurried to work. Maybe you were late, and the older couple walking along your route didn’t help. I too have experienced frustration when a biker or pedestrian slowed my progress. It’s no fun, especially when you need to reach your destination on time. And of course, it didn’t help that this road had no sidewalks. What was this couple doing out there anyway? Because I work in a world of words, I often see information as the answer to everything. Still, I realize you may not be interested in information. But since I remained silent while you screamed and swore at my husband, I thought I’d offer more of the story—albeit a little late. You see, there’s at least one thing you couldn’t have known about him: He has an early-onset dementia called FTD (frontotemporal degeneration) that prevents him from making wise, quick decisions. So when you tried to teach him a lesson by staying firmly in your lane yesterday, and he didn’t move, he wasn’t being stubborn—at least, not in the way you or I might be. He simply isn’t able to process a concept such as “A truck is coming. It may not stop or move over. I should get out of the way” fast enough to do what you expected. I realize you saw his behavior as arrogant and rude. But this is far from the truth. Until about two years ago, he was a pastor who loved (and still loves) God and people. Even at his best, he would have thought you should respect him as a pedestrian, but I doubt he would have challenged you by remaining in your lane. Now, he just can’t think fast enough to move over, even when I tell him to (which I did as you approached us). So even though you told him, “Next time, I won’t stop,” I’m not sure he has the mental ability to change his behavior. My husband’s dementia also causes obsessions. One of his current ones is walking, and so the two of us walk at least 3.5 miles every morning and nearly that far every evening when he’s not too tired (his dementia also causes exhaustion). Several months ago, our family made the decision not to let him walk alone anymore. Although he knows about the COVID-19 pandemic and social distancing, he can’t follow the steps needed to carry out those restrictions on his own. His lack of logic also means that more than once, I’ve had to pull him back from crossing a street as a car headed right toward him. Why do we walk on that road where you met us? As you know, few streets in our area have sidewalks, and that route happens to be my husband’s favorite. We go early in the morning (we leave at 6:30 or 6:45 a.m.) when traffic is light. Yes, we could walk at the local rec center, but until now, I’ve felt safe on the roads. I had already told him that when school started back, we might have to readjust our route. He has lost so many freedoms (he cannot work or drive anymore) that I didn’t want to take...

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