(Hans Peter Gauster, Unsplash) Life is hard, and it might not get easier.”  Every one of our children knows this phrase well. While growing up, they often heard it from their dad (and eventually from each other as well as from me). It entered our lives as a line in an Amy Grant song, “We Believe in God.”  Tom is living this reality now. Life with dementia is increasingly hard, especially in this year that has seen a steeper decline in his cognition and abilities.  “What’s the hardest thing about living with dementia?” I asked him this morning.  He had just misplaced his coffee mug and needed my help to find it, so although he hesitated, he had an answer. “Well, two things. First, I can’t remember where stuff is.”  “Second …,” He gave one of his now-characteristic lengthy pauses, and after a couple of minutes had passed, I reminded him of the question.   “Well, second (another long pause) … I’m sorry, I don’t remember.”  “That’s OK, baby, I was just wondering what you thought. Is there something that really bothers you about having dementia?”  “(Long pause) “If I think of something later, I’ll let you know.”  I recently had to fill out a survey for an upcoming doctor’s appointment Tom has with the Brain Clinic at Emory University. It had to do with activities of daily living, a term health care professionals used to describe an individual’s daily self-care activities. I’ve filled out this survey before (Tom hasn’t been able to answer any medical questions on his own since 2018), but this time, I noticed that in more categories than ever before, I answered either “does not perform” or “cannot perform without help.”   The ADL questions referred to such activities as fixing meals, driving a car, and keeping track of medication. Tom can’t do any of those activities, and for most of the remaining ones on the list, he requires a lot of assistance.   What the questionnaire doesn’t reveal is how much assistance he needs. Although pet care wasn’t on the list, he needs more and more help in caring for his beloved box turtles. Last year, he could go out to our backyard pen and feed them on his own. This year, I go with him. He might forget that he’s not supposed to climb into the pen, which poses a fall risk. He might forget why he’s out there, and I remind him to give the turtles their food, which I’ve helped prepare. And of course without my reminders, he would forget that he needed to feed the turtles at all.  Other ways his life has become harder as his brain change becomes more marked include: ...

I knew it would happen. I just didn’t know it would be so soon.  I knew the day would come when our oldest grandson, who is now five and a half, would show more responsibility, be more careful, and have more understanding than my husband, who is living with dementia.   I knew the day would come when our grandson’s brain, which is constantly growing, would work better and faster than my husband’s, which is constantly shrinking. I knew the day would come when the two would—in terms of cognitive ability—meet in the middle, one continuing to advance, the other continuing to decline.  I knew it would happen. I just didn’t know it would hurt so much.  I didn’t come to this realization in an instant, of course. In reaching this conclusion, I am probably several months behind.  One of the places Tom and Lincoln both love is Chick-fil-A, Tom for the food and Lincoln for the play area (not to mention the ice cream). Over this school year, we have often picked Lincoln up on a Friday and taken him either to our house or this favorite spot for dinner and play time.  When we visit our local Chick-fil-A, we have to walk across the drive-thru lane to enter the restaurant. I used to hold our grandson’s hand when we did this to make sure he stayed safe.   But for the past several months, I’ve asked Lincoln to keep Grandpa safe. He walks beside Tom, holding his hand or his walker; looks both ways when we have to cross the drive-thru lane; and opens the door so Tom and I can go through first.  In the past, I loved our trips to Chick-fil-A because it was one of the few places where Tom would engage with Lincoln. He would stay in the play area with him, hiding from him as he came down the slide, then jumping out to “scare” him. Even while LWD, he did his best to make sure Lincoln stayed safe.  These days, I choose a table close to the play area because Tom rarely wants to go inside with Lincoln. I can monitor our busy boy from the table or, if I’m in the play area with him, keep an eye on Tom, who is usually sitting at the table, eating or staring into space.  We can still do the same activity; it’s just different now. We can still enjoy our time together; it’s just different now. Tom’s still himself; he’s just different now. As time has gone on and his brain change has continued, I’ve made some necessary adjustments. Some of these have been big ones: Managing all our money. Becoming the sole breadwinner....

by Andrew Pieper Tom with baby Andrew, 1991 “OK, love you too, bye,” I said—my standard farewell on my weekly video calls with my mom and dad. Yet the call had felt anything but standard to me. The outside observer probably wouldn’t have noticed, yet there were subtle signs that left me with a sinking feeling. We had talked about many standard topics and events: church, work, happenings around town, but today I had to refresh my dad’s memory on multiple subjects, things we had talked about only a few days ago. Dad “knew” everything we talked about in great detail, yet he had no idea about any of them.   This conversation lingered in my mind over the next week. I kept thinking of my dad, sitting there in his recliner, happy and content. Yet to me, who knew him as the witty, loud man who would often throw the childhood me up in the air to questionable heights of safety before gracefully catching me, he had become someone else entirely.   Over the next several days, after a lot of thinking and praying about what I should do, I decided the best thing would be to pack my bags, leave Texas, where I had been living for a few months, and go to be with my parents for a while. Being the only boy among four sisters, my dad and I have always had a special relationship, but it’s changing now—and will continue to do so. Neither of my parents was ever “handyman inclined,” so whenever I came for visits, I assisted them with such tasks as replacing lights, pressure washing, and landscaping. By living with them, I could help alleviate some of the day-to-day tasks from my mom, who currently is wearing multiple hats, working full time while taking care of my dad, the house, and the yard.    How long would this last? For the next six months? Six years? I have no clue on the timeline, but one thing that I strive to keep at the forefront of my thoughts is to have a heartbeat of obedience to God’s calling. I don’t want to have any preconceived “noes” in my mind for where God might call me or what He might call me to do. Just like that, I began the process of closing my storage unit and packing things up. Within two weeks I was ready to go; my van and trailer and I made the drive to South Carolina.   It is only my second week since relocating here, and already God has given me multiple signs that this is the right move for this season of my life. First, my mom got sick with...

(TC Perch on Pixabay) You’re so patient.”  “I don’t know how you do it.”  “You’re an example for others.”  I get that a lot. And to be honest, I shouldn’t. I understand why. In sharing snapshots of our life while living with dementia, I do my best to be as transparent as I can. But I know there are things I miss. And I also understand that my perspective is not the only one.  When I teach on writing memoir, I encourage people to tell their own story, even if it’s not the way someone else remembers it. That’s what I seek to do here. So even though my story of LWD is not the same as someone else’s, it is my story—and thus our story, the best I can tell it, for both Tom and me.  But I want to apologize for the times—past, present, and future—I may make myself sound better than I am. Because here’s the real truth: I am so not.  Not patient. Not kind. Not good. Not any kind of example for anyone.  Left to my own devices, I am just the opposite: impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more. In fact, I’m probably less likely than most people to be a good caregiver for someone who is LWD.  But here’s the thing: The truths we celebrate this Easter weekend matter. And they changed my life.  I grew up with two wonderful parents who faithfully took me to church. The sermons I heard and lessons I learned shaped my standards and values. But until my junior year in college, they reached no further than my intellect.   If you had asked me back then, I could have told you that yes, Jesus died on the cross. I would have said that yes, God raised Him from the dead.   And I would have also said that I might go to heaven someday, that I tried to do good things to gain that privilege.  You see, I grew up trying to do lots of “good things” so I would avoid getting into trouble. That’s not a bad way to start out, but it’s not a great place to stay. And it didn’t give me a great picture of the God I know today.  You see, that God created me to love and serve Him, to honor Him with my life. He knew I could never do that on my own.   Remember? Left to my own devices, I am impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more.   Until my college years, I didn’t understand that I could never be good enough for God; I needed Him to be good for...

(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...