(Photo by syklimkin on Unsplash) Choose your battles. It’s a familiar parenting principle—and one that works well for many aspects of life. Sometimes it takes a slight twist: Don’t sweat the small stuff. Look at the big picture. Don’t miss the forest for the trees. But however we say it, we mean to avoid turning small issues into big ones, which often happens when we argue or fuss.  I’m not much of an arguer (Read: If there were an anti-confrontation vaccine, I’d be first in line.) But there was a time earlier in Tom’s dementia journey that, for some reason, I found it important to let him know when he was doing something I considered wrong or inappropriate.  Part of that reason was that he had not yet been diagnosed. Although I suspected problems over a period of years, his first neurologist as well as a neuropsychologist told me he was fine. So when he did something that upset me or had odd, unusual behavior, I talked to him. Sometimes I corrected him. Sometimes I told him he was wrong.  In reality, since he couldn’t control most of his actions or impulses, I was the one who was wrong. I thought my words would help Tom make some different decisions about what he said and did, but of course he couldn’t think logically anymore even if he remembered my comments. Today, armed with a new knowledge set as well as his dementia diagnosis, I approach these situations much differently.   BEHAVIOR: Tom doesn’t answer me when I ask him a direct question.  THEN: “When someone asks you a question, you should respond,” I remind him. “It’s how people know you’re listening to what they say.”   NOW: I repeat my question after a few minutes or drop it altogether. Concentrating takes so much cognitive effort that he can’t focus on more than one thing. He genuinely does not hear me. And these days, he is less and less able to process enough information to give a response. I didn’t understand that then, but I do now.  BEHAVIOR: Tom flirts with the female grocery store clerk, a practice I’ve asked him to stop.  THEN: I don’t say anything to him at the store, but afterward, I tell him he has hurt me. I also spend time grieving over the state of my marriage.  NOW: I either use the self-checkout line and let him “help” me with the groceries (our bags contain some rather interesting combinations) so we generally avoid such encounters. If we go through a regular line, I try to do most of the talking. If flirting happens, I ignore it (although if it ever became inappropriate, I would shut it down...

Photo Credit: Peter Conrad, Unsplash Although I’ve written about many painful parts of our dementia journey as well as some positive ones, I want to discuss a primary dementia symptom/sign that I’ve mentioned only in passing. If I had understood how big a role it plays in many types of dementia, I would have pushed for a diagnosis sooner and harder than I did. This known-but-unrecognized symptom? Apathy.  If I had known about this close connection earlier, I would have realized that many of the following were not just abnormal, often hurtful actions but signs of something dangerous happening in Tom’s brain. All of these became part of our lives at least two years before Tom was officially diagnosed with dementia in the fall of 2019.   — Withdrawal from friends: Always the life of the party who would keep talking to people long after I was worn out, Tom now waited for others to take the lead in group settings and often wanted to leave early.  — Lost celebrations: He did less and less, sometimes nothing at all, to recognize birthdays, anniversaries, or other special days—a big change from the person who would find the most random of reasons to celebrate.  — Lack of compassion: Previously an expressive personality, Tom displayed a flat affect/expressionless face even when he knew he had hurt someone (usually me) deeply. Prior to his diagnosis, we met with marriage counselors for nearly a year. At one point, they suspended our sessions because of this type of behavior and the fact that, even when they called him out on it, nothing changed.  — Withdrawal from family: For a few years, Tom refused to travel with me to visit my widowed mother, saying he couldn’t take time off work. Later, he refused to attend a baby shower for our expected first grandchild for the same reason. Later, he came to see our newborn grandson for the first time only when I insisted he make the trip.   — Lack of interest in his health: Tom stopped seeing the dentist several years before diagnosis and only went to the doctor when I insisted he go. He never seemed interested in what we were finding (or not finding) out about his potential dementia. It almost seemed as though this were all my problem, not his—which is what he told the neurologist who diagnosed him.  Tom’s apathy showed up in other ways, but these are some of the bigger areas I noticed. In this video, dementia expert Teepa Snow explains some of the reasons behind the apathy associated with vascular and other types of dementia, including the frontotemporal variant Tom has. She says it’s not that the person with dementia doesn’t...

Tom singing at a nursing home, July 2022 A big part of my writing life has come through my relationship with Dr. Walker Moore of Back 40 Ministries. He and I have collaborated on three books and worked together in both his former and his current ministry as well as on the mission field. I’ve also edited his weekly column in the Oklahoma Baptist Messenger for a number of years, and we’ve shared in other publishing projects as well.  One of my favorite teachings in our book Rite of Passage Parenting and its companion workbook is the concept of a significant task: a special assignment that demonstrates an individual’s worth to the people who are important to them. For a four-year-old, a significant task might be emptying the wastebaskets or helping sort laundry.  For a fifteen-year-old, a significant task might be changing the oil in the car or taking responsibility for a part of the family budget. Those who don’t have significant tasks often look for significance elsewhere—often in inappropriate ways and places.  I realized not long after Tom’s official diagnosis that one of the wounds for people living with dementia comes from the loss of their significant tasks. Near the end of 2018, Tom experienced the loss of his worship pastor job followed by the loss of the ability to hold a job at all. Within a few months, our family also asked him to stop driving—another loss of a significant task. And before all this, when he secretly gave away thousands of dollars to online scammers, I took over our finances and removed yet another significant task.  I didn’t want to manage everything, and my personality is by no means controlling. But Tom’s dementia has meant I have no choice but to be in charge of our significant tasks. So how can he still know he has value and purpose?  My solution has been to let Tom be as responsible as he is able as long as he is able. These are his primary significant tasks:   — Coffee Service: Tom loves coffee; I do not, so he’s almost always made the coffee in our home. Before we sold our Florida house, our son had to repair a warped kitchen drawer because Tom had forgotten to put the carafe under the coffeemaker so many times. A few years ago, our wise children gave him a coffeemaker that dispenses only a cup at a time. Tom still has frequent spills (yesterday’s soaked two bath towels plus), and I often find him reading the instruction sheet for the coffeemaker over and over. I’ve started helping him more, but I want him to keep this task as long as he can because it means so much to him.  — Water Delivery: I don’t...

Facebook/Project Lifesaver “You never know. I might get out.”  This phrase, or some variation of it, comes up every so often in conversations with Tom. Although he struggles with both memory and language, his sense of humor remains intact. He thinks the tracking ankle bracelet he wears is unnecessary, but he complies with it because a. he likes the deputy who helped us get it, and b. I keep reminding him he wears it for my peace of mind.   The peace of mind part is all too real. I wrote here about how I had to rush home from work one hot Florida day because he had (against a friend’s counsel) left home to walk to a mall about four miles away for an errand that could easily have waited until someone could drive him. Ultimately, I had to get the police involved in finding him.   Although that story had a happy ending, I’ve never forgotten how it felt to drive the neighborhoods, praying and crying as I searched for him.  Not long after we moved to South Carolina, I heard from one of the Facebook dementia support groups I belong to about Project Lifesaver (from its website):   Project Lifesaver is the premier search and rescue program operated internationally by public safety agencies, and is strategically designed for “at risk” individuals who are prone to the life-threatening behavior of wandering. The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children with the propensity to wander due to a cognitive condition.  I also learned through another connection that Project Lifesaver was available in our county. By that time, we had had two more incidents of Tom “wandering,” both during the week (April 2020) a tornado hit our area. Our home had no damage, but the storm knocked out our power for almost a week.  That very first day, our routine was much different than normal as we checked on neighbors and waited on the power to return. And also on that very first day, Tom took off without telling me where he was going. Fortunately, I saw him leave and was able to bring him back without incident.   But later that day, we moved to our daughter and her family’s home because they still had power. During the week we were there, Tom took off on another walk, destination unknown. This time, he refused to come back when our daughter called to him. She had to jump in a friend’s truck and chase him down—another scary time.  As soon as I learned that our county had Project Lifesaver, I contacted our local sheriff’s office, which manages the project....

Tom ministering in Mexico. You didn’t know him when he prepared a set of Scripture verses for us to memorize together. You know him now, when he may not remember what you told him two minutes ago.  You didn’t know him when his anointed trumpet playing moved people to worship—and even to tears. You know him now, when he rarely picks up his horn.  You didn’t know him when he gave me a “book of the month club” that he kept up for several years. You know him now, when he doesn’t give any gifts without assistance.  You didn’t know him when he labored over his sermons to make sure they were both biblical and practical. You know him now, when he has trouble paying attention in church or Sunday school.  You didn’t know him when he loved to travel and meet new people. You know him now, when he prefers his home and recliner to anywhere else.  You didn’t know him when he tried to spend special time with each of our children. You know him now, when I can’t always interest him in talking to them on the phone.  You didn’t know him when he had such a sharp sense of humor that people said he should be a comedian. You know him now, when he repeats the same jokes and stories multiple times.  You didn’t know him when he managed all our family finances. You know him now, when the government won’t allow him to receive his own Social Security checks.  You didn’t know him when he planned elaborate dates and celebrated events such as our 3,000-day anniversary (which he figured out pre-internet). You know him now, when he rarely thinks of one day as different than another.  You didn’t know him when he could lead a choir with musical expertise and spiritual passion. You know him now, when he often struggles to follow the music as he sings.  You didn’t know him when he loved to drive. You know him now, when he has no license and hasn’t driven for more than three years.  You didn’t know him when he insisted all the senior adults go first at our church potlucks. You know him now, when he scoops up handfuls of macaroni and cheese at the church fellowship because he can’t find the serving spoon.  You didn’t know him when he was fully himself. You know him now, when the thief we call dementia has stolen so much.   The person my husband is today is not the person he was, and yes, that makes me sad. But the person he is today is still someone who cares about God and others. Someone who still encourages people and loves to make them smile....

Photograph © Dennis Minty, 2022. When my mom and I took our recent cruise, I left my caregiving responsibilities behind—but as I wrote last week, they didn’t leave me.  And guess what? Dementia didn’t leave me either—even when it wasn’t my problem.  On our first expedition day when we left the ship to visit Sable Island, Mom decided to stay behind. We left the ship according to color groups, so when the leaders called ours, I headed to the mud room—where we prepared to disembark—without her.   As I pulled on my waterproof pants, rubber boots, and other equipment, I noticed a woman I’d seen when Mom and I were having our boots sized. We’d introduced ourselves, and I remembered her name.   Today, she was visibly upset. “I don’t have a backpack,” she said. “My shoes will get all wet.” On the trip necessities list was a backpack (and dry bag to hold it) to carry hiking shoes, phones, and anything else we needed for off-ship excursions.   I’d already planned to carry Mom’s equipment in my bag. “I can take your shoes,” I told the woman. “I have extra room.”  She seemed overjoyed. “Oh, thank you! Thank you so much!” she told me as I stuffed her shoes into my pack. She disappeared after that, but I knew I’d find her on the island. I didn’t think she’d attempt a hike in her rubber boots.  For the next few minutes, I finished preparing, then followed the procedure we’d learned for safely seating ourselves on the zodiac. Despite some fog, we had a fairly smooth ride and landed on the island with the help of our “spinners,” who turned the zodiac and pulled it onto the beach.  Next, I headed for the area where we could change into our hiking boots. I didn’t have a hard time finding my new friend—not because she was looking for me, but because she was looking for her shoes.  “I can’t find my hiking shoes,” I heard her tell someone else. “I don’t know what happened to them!”  “I have your shoes!” I said, pulling them out of my pack.   Once again, she was overjoyed—momentarily. She didn’t say, “Oh, that’s right!” or “Of course!” She just accepted the shoes and moved on.   And I wondered.   From then on, I kept noticing this woman (I’ll call her L). Although L had an extensive vocabulary and could carry on an interesting conversation, every time I encountered her, she seemed a step behind. Once, she showed up with our color group on a tour segment—but she belonged in another. I saw others shaking their heads at her evident confusion.  And I wondered.   Another day, I was...