Photo by David Mullins on Unsplash As I’ve said before, Tom and I are the typical opposites who attract. We realized early on in our marriage that even our sleep patterns differed. I could remain alert late at night but took a while to feel like talking in the morning. He needed an earlier bedtime but arose, fully recharged, no matter how early the alarm clock rang.  All that changed, however, with the arrival of our first child—and then our second ten months later. I’ve often said that mothers have to be both night owls and early birds. Once again, my parenting experience has served me well, as I now need alertness at many times of the day. That’s especially true because over the past several months, sundowning has played a more significant role in our lives.  In case you haven’t heard of sundowning or sundown syndrome, it refers to a set of symptoms that typically occur as daylight begins to fade, generally in older adults with one or more forms of dementia. It can involve restlessness, agitation, irritability, confusion, and more—and it often makes going to bed and staying asleep a challenge.  Tom has taken medication to help him sleep since we first began treating his dementia symptoms, so I suppose he’s shown sundowning behaviors for a while. Without the medication, he tends to wake up much more or becomes agitated, even violent, in his sleep. With the medication, he sleeps well—for the most part.  As a person living with dementia, he also requires more sleep than he used to. The activities of daily living are much more difficult for him than in the past. His broken brain has to work harder to process simple conversations and ideas. If we have an outing or appointment during the day, he almost always comes home exhausted. He still loves interacting with people, but the mental challenge wears him out.   That exhaustion was one of those dementia symptoms I noticed long before the doctors agreed with me that anything was wrong. The simplest tasks seemed to tire him, and he took naps whenever he had the opportunity—something he’d never done before. I wondered if he was aging prematurely, and in a way, I guess he was. If you look at photos of him now compared to even a few years ago, you can see the toll his disease has taken on his face. Of course, that’s nothing like the toll it has taken on his life.  Tom’s sundowning means I can’t ask him questions late in the day and expect a coherent (or any) response. His tremors worsen, so he’s more likely to spill his food and drinks. For the past month...

Photo by RoonzNL on Pixabay Although the frontal-lobe aspect of Tom’s dementia means we noticed devastating behavioral changes, his memory loss has also been a consistent sign and symptom.  Throughout our journey, I’ve heard comments such as, “Oh, I forget things all the time!” or “I do that too—maybe he’s not as bad as you think!” While yes, we all forget things, there is a definite difference between forgetfulness associated with normal aging and forgetfulness associated with dementia. I won’t go into those details here, but you’ll find a good explanation at this link.   In short, experts often use the term “memory loss that disrupts daily life” to distinguish it from more normal, age-related memory loss. I’ll give you a few examples from various points in Tom’s journey that I hope will illustrate why memory matters and how debilitating it can be.   Work: While Tom was still employed as a minister of music, he had increasing trouble keeping track of the details needed to serve a midsize congregation (around 500 in attendance total at three different services). The last year or two, when he led choir rehearsal, he invariably left one or two songs out of the audio file he had prepared in advance. After he lost his job and I spoke with our former senior pastor (who had retired the year before), I learned that often, he and Tom would have a discussion that Tom didn’t recall even a few days later. During this time, he also struggled to use his in-ear headphones and fumbled with his mic nearly every week; he also forgot preplanned details of the services.  Home: Long before diagnosis, we had to install special hinges on our front door to close it after Tom left it wide open more than once when he left for work. Nowadays, his memory has declined enough that he leaves other doors open on a regular basis: cabinets, dishwasher, refrigerator, freezer—I often think about how short his memory must be if he can’t remember to close a door he has opened only seconds before.  As you can imagine, he loses and has lost various items for years—I’ve sometimes wished I could have all the time back that I’ve spent hunting for them! We do use a Tile tracker and connected app on the most essential items, but it’s amazing how quickly he can lose the remote, his phone, his reading glasses, his coffee mug, or whatever object was last in his hand.   Outings: Memory loss makes it increasingly difficult for Tom to navigate places he doesn’t know well. When we go to a store and he needs to use the restroom, I stand near the door, or he won’t find his...

Photo by TheDigitalArtist on Pixabay That brief phrase might be my best answer to the question I hear most often about my husband: How’s he doing? I doubt those who ask have time or desire to hear the long version of my response. So “it’s complicated” works well. Before I had the privilege of carrying a child, I thought pregnancy meant you gained weight, your abdomen grew larger, and in nine months, you had a baby. I had no idea that so many areas of my body, from hair to fingernails to feet, would change as I journeyed through those months. That’s how dementia is. Before it struck our family, I pictured it as a primarily a memory problem. For Tom (but not for all people living with dementia) memory loss plays a big part, but dementia affects so much more than memory. The best way I can think of to explain “it’s complicated” is to compare how he was two years ago (just after we moved to our home in South Carolina) to now in several key areas. 2020 SPEECH: Has become increasingly halting. VISION: Poor depth perception. MEMORY: Remembers many people but not dates and events; needs daily reminders to take medication. DIET: Normal, some food and drink obsessions. Has lost his sense of smell, which has begun to affect his sense of taste; likes and dislikes are changing. HOUSEHOLD TASKS: Little initiative to help on his own but vacuums, mops with reminders, and does occasional other chores. FINANCES: Can no longer manage bank accounts or personal finances; still has a debit card and one credit card that I monitor. EMPLOYMENT: Retired after losing three successive jobs in late 2018/early 2019, all dementia-related but has no benefits. DRIVING: Our family asked him to give up driving in April 2019 after minor accidents plus observation of his driving; still wants to transfer his Florida driver’s license to South Carolina “just in case.” PERSONAL CARE: Normal except that he stopped going to the dentist a few years ago and needs treatment. BALANCE: Diagnosed with a balance problem in late 2019 and had a few weeks of physical therapy. SWALLOWING: No known issues; coughs (a lot) and chokes (sometimes). SLEEP: Normal; was acting out his dreams and had restless nights until one neurologist prescribed an antidepressant. INTERESTS: Decreasing; still engages with family with encouragement, enjoys church, music, movies, TV, reading, golf, and has obsession with an online golf game. Will often choose this game over engaging with family. A former professional trumpet player, he has not practiced consistently since May 2017. 2022 SPEECH: Much slower with frequent pauses, often gives up. VISION: Narrowing field, misses many objects. MEMORY: Remembers people...

Photo by Danielle Rice on Unsplash Over the past several months of my somewhat irregular “snapshots of dementia” posts, I’ve written about lots of big things. Our painful journey toward diagnosis. Job losses. Wounds to our marriage and our family. Asking Tom to stop driving. And more. But I’ve also noticed that with dementia as with many areas of life, the little things often have just as much impact as the large ones. Consider the following as not a list of my favorite things but rather of the little things that touch my heart as I watch his early-onset dementia, frontotemporal degeneration, steal so much from my husband. — Open Doors: Tom’s short-term memory has become so short that he rarely remembers to close doors or drawers. You may recall that much earlier, we had to put special hinges on our front door to close it automatically because more than once, he left it standing open when he left for work. Now I can trace his path through our home by the doors and drawers he leaves open. Praise God for a refrigerator with an alarm! — Press Pause: Sometimes I find Tom standing in our hallway, a blank look on his face. Although it passes quickly, I know this means he’s started to go somewhere or do something and forgotten what he started out to do. I can hear some of you saying, “But I do that all the time.” Yes, but probably not fifteen or more times a day—and within only a few seconds of starting the activity. — Delayed Departure: My experience as the mother of five has prepared me well for my current stage of life. As a mom, I had to plan to leave 10 or 15 minutes earlier than the actual departure time because someone wouldn’t have their shoes on or another would need to make a bathroom stop. Even if I tell Tom, “We have to leave in a few minutes,” his broken brain can’t translate that to the steps he must take to be ready to go. In fact, if I give him only two things to do, he will usually forget one of them. These days, we exit more slowly and often have to make a trip or two back inside before our true departure. — “You’re So Smart”: Tom often makes this comment multiple times a day. “You’re so smart” because I could log onto the library website. “You’re so smart” because I knew how to install an app on my phone. “You’re so smart” because I remembered what I had planned for the weekend. What touches my heart here? He never used to say, “You’re so smart” because...

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...