Photo by Valeriia Bugaiova on Unsplash Throughout our dementia journey, good times and challenging times have intertwined. God’s sovereign hand means even the darkest of circumstances can dawn bright enough to be a blessing. We also know that even the happy times carry a profound element of grief.  This past winter, an unusual chain of events transpired that reminded me that even those times of forgetfulness and confusion play a part in the way God “causes all things to work together for good to those who love him and are called according to his purpose” (Rom. 8:28, NASB). We experienced this in the fall of last year, and it began with a physical fall—one that only happened because of Tom’s dementia.  He and I had done some Saturday shopping at a local grocery store. I’d had reverse shoulder replacement surgery only weeks before and still had one arm in a sling. With my one good arm, I was loading the groceries into the back of our car, Tom by my side.   As we finished, our grocery cart rolled down the store’s sloped parking lot, and a woman driving toward us honked her horn. I turned around, but it was already too late. Tom was running to retrieve the cart, both hands in the air, swinging his body from side to side.  Despite his panic, there was no emergency; the cart wasn’t rolling fast, and we could have retrieved it. The car, a large SUV, wouldn’t be damaged by its impact.   But a real emergency loomed. In my head, Tom had already fallen and I was calling 911.   And then it happened. He fell flat-out, right in front of the oncoming car (mercifully stopped at this point). Within seconds, I was by his side.  “Baby! Are you OK?” I said as he lay there, stunned.  “I think I am,” he said as I helped him up. I told the driver that he was fine, and she drove on around us, no doubt wondering why he had run as he did to retrieve the cart.  I didn’t wonder. I already knew that dementia had stolen Tom’s “safety” mode. When his fight-or-flight response kicks in, it’s strong and immediate.   But I also knew he might not be fine. But since he hadn’t lost consciousness and had no obvious injuries, I took him home.  By Monday, I called our primary care physician because his pain had increased, and I feared he had broken a rib. It was now Thanksgiving week, and she had no appointments, so her office sent us to an Urgent Care.  An x-ray showed two broken ribs—and a large mass in his left lung with extending fingers to the lymph nodes.  Once CT...

Tom and Marti, August 6, 1983 One of my favorite dementia care experts (from whom I’ve learned a lot in the past year) has a particular saying for and about those living with dementia: “I am who I was, but I’m different.” I shared this thought with a dear friend last night as I tried to explain the changes in Tom: He’s still who he was, but he’s different. And on this Valentine’s Day evening, as I sit typing away while my beloved naps on the couch, I realize the concept also holds true about loving someone living with dementia. Back in the day (we met in 1980 and married in 1983), love meant praying together morning and night. Taking time for dates. Sitting on the same side of the table at a restaurant. Kissing after we prayed before meals. Choosing that oh-so-right greeting card. Special gifts (not too often or too extravagant, but always heartfelt.) Making big decisions only as a partnership. Discussing our faith and our children and our lives. And of course, so much more.Today, love looks much simpler. We still pray together at morning and night, but sometimes his thoughts fail to connect. We still have dates, but I plan them all. We still sit on the same side of the table at a restaurant, but only if I remind him. And we still kiss after we pray before meals—but he’s starting to forget that sometimes too. I don’t receive greeting cards or gifts from him anymore unless one of our children helps him find them. I make all the decisions, big and small, and usually don’t mention them to him. He either won’t understand, won’t remember, or both. We still discuss lots of things, but the conversations are much shorter and, of necessity, simpler. Scripture says, “When I became a man, I gave up childish ways” (1 Cor. 13:11b, ESV). Yet Tom is in a stage where he’s embracing childish ways more and more. While I’m working, he’s playing games on his iPad, watching TV, or reading books (he still enjoys reading, although he loses interest easily and can rarely describe the plot). When I’m not working, he still does those things unless I force some sort of needed change. He loves routine, and moving him out of it can upset him.His tastes in food have also gone back to the basic things he loved as a child: carbs. Sweets. Fast food (please don’t send me notes about nutrition; his doctors have agreed that in his situation, comfort food is just that: a comfort. And I do give him a basic healthy diet.) Whether I take him for a simple outing like a visit...

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....

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....

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...

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...