(Unsplash) Marriage to someone who is living with dementia has taught me lots of things, many of which I’ve shared on this forum. I’ve learned about the disease, about the changing needs of people LWD, and about myself.   I’ve also learned that, all along the way, there’s a lot those not in this situation don’t see—even when they spend time with someone LWD. This is true not because anyone is trying to hide or have secrets but simply because what we observe in a few minutes—or even a few hours—of anyone else’s life, LWD or otherwise, never gives us the whole picture. Even my snapshots of dementia, as transparent as I seek to be, are just that: snapshots, small glimpses, and usually from my own perspective. Although I’ve tried to give Tom’s perspective a time or two, that’s getting more and more difficult to share.   Here, then, are some glimpses of what you do and don’t see (or would and wouldn’t see, if it were possible) when you see Tom and me:  WHAT YOU DO SEE: Tom and Marti arriving at church, medical appointment, or another scheduled outing.  WHAT YOU DON’T: The time it takes to get ready to leave. This includes last-minute bathroom trips or changes of clothes if he has spilled something along with finding sunglasses, reading glasses, sweater, and other necessary but often-misplaced items as well as (often) going back to close whichever door he exits and forgets to close.   WHAT YOU DO SEE: Tom smiling and nodding, enjoying others’ company.  WHAT YOU DON’T: Tom recalling fewer names and participating less and less in discussions because he can’t come up with quick responses.  WHAT YOU DO SEE: Tom eating an unusually heavy meal, often with dessert.  WHAT YOU DON’T: Tom’s lack of appetite control; he can eat a huge amount or very little without realizing what he’s doing or feeling either hungry or full.  WHAT YOU DO SEE: Tom adding excessive amounts of salt, pepper, or both to his food.  WHAT YOU DON’T: Tom’s dementia has stolen his sense of smell, which has diminished his sense of taste. As his dementia worsens, this seems to be worsening too.  WHAT YOU DO SEE: Tom wearing a sweater, long sleeves, and long pants even when temperatures are in the eighties or nineties.  WHAT YOU DON’T: Tom’s brain doesn’t process temperature well, and he is often cold. We keep a blanket in the car and a cardigan in the pouch on his walker to try to combat this problem.   WHAT YOU DO SEE: Tom following behind me with his walker.  WHAT YOU DON’T: Him becoming nervous and unsure where to go when I’m not in front of him. I...

(Israel Palacio on Unsplash) He’s quirky.”  Anyone who’s known Tom through the years will agree that I wasn’t wrong when I described him this way to a group not long after we had come to the final church he served as minister of music. He’s a musician; I’m a writer—we pretty much understood that quirkiness was part of the package when we married each other.  But now, I wonder just where his quirkiness stopped and the dementia behaviors began. And I don’t suppose I’ll ever know.   I missed many of the early signs that Tom was living with dementia—partly because his neurologist and others kept telling me he was fine. But because I didn’t know about the behavioral issues dementia can cause, I am writing about them now so perhaps someone else won’t have to wait as long for a diagnosis as we did.   Not everyone LWD exhibits these same behaviors, and not everyone LWD has as many behavioral issues as those with a variant that affects the frontal lobe. But in addition to those I noted last week, here are some more of the atypical behaviors we saw in Tom even before he received his dementia diagnosis:  — IMPULSIVE/RECKLESS ACTIONS: I have written about how he was blackmailed via social media and later gave away thousands of dollars to online scammers. Since he was always frugal, this was out of character financially as well as morally. I am still appalled at the way scammers prey on the vulnerable, but I wish I had recognized just how vulnerable he was much sooner.  — LACK OF MOTIVATION: I also wrote not long ago about how Tom stopped paying attention to lawn care. This same lack of motivation, in large measure, resulted in him no longer playing his trumpet (formerly a top priority for him). After he hurt his lip in a challenging concert in 2016, he received a detailed plan to help him heal and rebuild his muscle strength, but he never followed through. He still tells people he’s a professional musician; the sad truth is that he hasn’t practiced consistently since he hurt his lip nearly seven years ago, more than three years before his diagnosis.  — ODD PERSONAL HABITS: One day, I found him laying a towel down over the bathmat as he prepared to take a shower. When I asked about it, he said he “had never liked to get the bathmat wet.” It took a while for me to realize this was a dementia behavior, not a longtime preference that I had somehow missed. I remember watching the final funeral he officiated nearly five years ago and noticing how he constantly licked his lips as...

(Andres Urena on Unsplash) Tom hobbled into the kitchen the other day, a man on a mission.  “What’s wrong, baby?”  “My Fitbit is broken,” came his gloomy response.  “What seems to be the problem?”  “It won’t show me the time anymore. It’s broken.”  Tom can’t walk for exercise anymore, but he retains his obsession with his Fitbit. He can’t charge it on his own anymore either, but he wants to make sure it’s always ready for use. And when he accidentally switched it over to timer rather than clock mode, he felt sure it was broken.  You and I wouldn’t come to that conclusion. But you and I, for the most part, are not people living with dementia.   “Here, let me see it,” I said, reaching for the device.  Of course, it only took a few taps and swipes for me to return it to clock mode.  “Here you go! I got it working again,” I said as I gave it back. It makes more sense to go with his reality than try to explain the details.  He took the Fitbit, turned, and walked back to his recliner, his dismay forgotten.   Given Tom’s obsession, you’d think he would have been happy and grateful. But although he still expresses happiness and gratitude at times, he does not typically connect those to events such as this one. And in the short time before I returned the device to him, he may have forgotten about his “it’s broken” conclusion.  In the days when I didn’t realize Tom was LWD, happenings and conversations like this confused and upset me. Why was he acting this way?  The “personality changes” mentioned in lists of dementia signs and symptoms often look different with different people. I’ve heard and read many stories from others whose loved ones are LWD. Since I didn’t realize that some types of dementia initially (and most types eventually) have a behavioral connection, I thought some of Tom’s odd behaviors were just that—odd behaviors, mistakes, or misunderstandings.   Looking back (yes, we know what they say about hindsight) I realize that some or all were symptoms of the evil lurking inside his brain. Here are a few more of the changes he exhibited some time before he had a dementia diagnosis:  — PESSIMISM: Always an upbeat person, he became a negative one. In the same way the Fitbit was “broken,” the banking website was “messed up,” and his discipline of our “terrible” dog became unduly harsh. For someone whose world is becoming more and more challenging, it’s easy, even natural, to be negative.  — APATHY: Tom had less and less interest in family birthdays, anniversaries, even special events such as a couple’s baby shower for our...

Photo by Andres Siimon on Unsplash I’ve had it!” my friend said. “I’m so tired of doing everything around here! She used to care so much about having a nice home. Now all she does is sit in front of the TV.”  His words about his wife, who is living with dementia, reminded me of a time in our lives in 2015—more than four years before Tom was diagnosed. He seemed more tired every night than he had in the past, and I wondered if he was aging prematurely or perhaps just differently than I.   And I really wondered about his obsession with simple computer games. In the evenings or on weekends, he would sit in front of his laptop for hours, not watching TV or engaging with me, just playing the same game over and over.    In the meantime, I was either doing housework or working on a freelance assignment or walking the dog or. . . you get the picture. But what I didn’t do was lawn care.  Our house in Florida didn’t have much of a yard; a pool and lanai (screened porch) took up most of the backyard. Mowing the grass didn’t take much time, but throughout our marriage, Tom had never wanted me to take on that chore anyway. And since I’m allergic to almost every kind of grass, I never minded.  Over the past year or so, he had done less and less with our yard. But suddenly, he wasn’t taking care of the lawn at all. We had no children left at home, so we couldn’t assign this chore to one of them. The grass that had almost taken over some of the beds around the lanai was growing again, and I just couldn’t take on this job too.  So—long before I took charge of our finances and every other aspect of our lives—I contacted a friend who has a lawn business. He and his team quickly got our yard back into shape, all while Tom and I were out of town, then continued servicing the lawn every week.  What should have seemed strange was that Tom never objected to nor seemed grateful for this plan. In the past, paying someone for something he could do would not have been his idea of a wise expenditure. But he never said a word. In fact, only a few months after I hired the lawn service, Tom sold our lawnmower for a ridiculously low price to a neighbor who needed one.  I was amazed. Was he planning never to mow the lawn again?  Now that I know that he was at least on his way toward LWD, I know he didn’t have a plan...

(Photo by USG on Unsplash) I have discovered that I am not the only dementia caregiver who doesn’t love the question, “How is ___________(person living with dementia)?” The reason we don’t love it is not because we don’t appreciate the interest. I love having people show concern for Tom.  My caregiver friends and I have trouble with this question because of only one thing: There’s no quick-and-easy way to answer it—and the person who asks rarely has time for or interest in the long answer. I generally respond with something like, “He’s doing as well as he can, but the disease is progressing.”  That is true, of course. But what is also true is that behind each of these changes lies one more piece of my broken heart in which I realize that what goes away never returns.  When I first told the world via Facebook about Tom’s dementia, I called it a thief. I still think that’s one of the most accurate descriptors for this enemy that has taken so much from Tom and from our family. Here are some of the ways it has stolen from us in recent days—in other words, the behind-the-scenes changes when I say he’s doing “as well as he can.”  GROSS MOTOR SKILLS: He stumbles more nowadays when he walks and has had lots of near-falls. Using the walker for his back/leg problems has helped keep him more stable. But using a walker when you are LWD can be a challenge because you forget to grab it when you get up—and sometimes forget that you use it all.  FINE MOTOR SKILLS: Tom’s handwriting, never great, has gotten worse, although he can still sign his name when needed. He can still feed himself, but he is getting more and more clumsy, often spilling his coffee or knocking something onto the floor. The tremors in his hands don’t seem to have worsened, but the spilling has definitely increased.  SPEECH: He still talks, but he sometimes forgets what he intended to say and frequently struggles with how to express it. A conversation with him includes many pauses and sighs. When he does connect his thoughts, he can contribute, but what he says may contain gaps in logic or reality. However, he can still insert a joke or wry comment with surprisingly on-point comedic timing. In a social situation such as a crowded restaurant, he usually shuts down; too much stimulation seems to overwhelm his thinking.  MEMORY: This is one area that keeps changing, but the changes don’t always make sense. He can still (usually) prepare his own coffee, but sometimes he forgets what he is doing while making it, and later, I find his open mug...