Photo by Raman Oza from Pixabay In a previous episode of “As the Journey Toward Diagnosis Turns,” Tom’s most recent neurologist (No. 3, in case you’re counting) had requested two things to help her solidify Tom’s diagnosis: a PET scan of his brain and the records from the neuropsychologist. Insurance denied the PET scan, but the doctor wanted us to come in anyway. I fought the early-morning Orlando traffic only to discover that the neuropsychologist hadn’t accepted this most recent neurologist’s form, so he hadn’t sent the records. Instead, we had to fill out an additional request. As soon as we completed and signed it, our neurologist’s office faxed it back, believing Tom’s records would arrive soon. We waited. And waited. And ended up having to reschedule because the records still hadn’t arrived. In fact, the neuropsychologist’s office had stopped answering the phone when our neurologist’s office called. Throughout this season of my life, I have had some amazing and supportive medical personnel who have assisted us. But I have also experienced the frustration of dealing with a system that somehow works against rather than for the patient. Why should our health records not be our health records? Why should we have such a difficult time obtaining them to share with another health professional? Fast forward to a few weeks later, another denial of the PET scan by our insurance and another visit to the neurologist. This time, she had the results of the neuropsychological exam. I wasn’t convinced they would help her much, since that practitioner had told us Tom’s only issues were ADHD and shame associated with some of his poor choices. But of course, we were glad to have another appointment. This time, they did another preliminary memory test, and Tom again charmed the nurse’s assistant. I couldn’t tell if he remembered our previous visit or not, but after a brief physical exam and a few more questions, the neurologist explained her dilemma. After reviewing his records, she felt even more confident that he had frontotemporal degeneration, behavioral variant (and by now, I’d done enough reading to agree with her). But she hesitated to make a firm diagnosis without “proof” via a PET scan (I’ve since learned from other FTD spouses as well as medical reports that PET scans do not always provide such proof.) Since our insurance wouldn’t pay for it, we could either wait until Tom turned 65 and get it via Medicare (at that time, nearly two years away), pay for it ourselves (at approximately $5,000) or remain undiagnosed. It may not surprise you that, with my newfound advocacy for my husband, I chose the fourth door: Another neurologist. By this time, I...

Unsplash/K. Mitch Hodge I heard Tom before I saw him. As he came through the front door, he sobbed. Working to sort, discard and pack our belongings in advance of putting our Florida home on the market, I’d had a few moments to myself while Tom went with one of our daughters to the county dump. He had driven one car and she, another. (Only a few weeks later, we had to take away his keys.) “Baby! What’s the matter?” I called out as I hurried to meet him. His shoulder shook and the tears poured down his face. “I just hate it when I get things mixed up,” he said. “I bet [our daughter] is so mad at me.” He’d forgotten where the dump was, a lapse that cost them extra time. And no, our daughter wasn’t upset, but it took him several moments to calm down. If you asked Tom about his illness today, he would say he has early-onset dementia, although he might not be able to tell you its name. But back then, we still had no diagnosis, and most of the time, he exhibited the typical FTD anosognosia or lack of awareness of his cognitive lapses and their effects. As our life continued to spiral in scary directions, this proved at best frustrating and at worst maddening. That day, I realized something: I prefer it when he remains unaware. If he doesn’t know he’s forgotten, doesn’t realize he’s caused some sort of problem, doesn’t understand it’s not the website’s fault or the phone’s fault or the television’s fault but his own, he doesn’t understand his decline. And he doesn’t cry. That wasn’t the first day Tom cried, but it was the last for a while. He didn’t cry when, that same week, he made an inappropriate (not sexual) comment to a female friend. He didn’t cry when I put the house on the market. He didn’t cry when, night after night, I would come home from a long day at work, cook dinner, pack or do freelance work while he played on his phone, watched television or slept. He didn’t cry when our children traveled hundreds, even thousands of miles to help us move—or when they left (two for what we thought at the time would be years overseas). The disease has affected the part of his brain that controls emotional reactions, and the damage is uneven. Sometimes his responses are exaggerated, and at other times, blunted. With his and other dementias, what you see happening is not always what you get by way of response. Sometimes, he still cries. We have recently begun attending in-person worship despite his vulnerability to COVID-19 because our...

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...

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...

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...

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...