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...

Do hard things.  So reads the plaque on my office wall, courtesy of my two former “work daughters.” That phrase became our mantra as we learned that God often calls us to the more challenging choices, those more difficult, more sacrificial, and often, more right.  He calls us to do hard things.  For me, that sometimes means handling insurance, tax, or other details I’d prefer to ignore. Sometimes it means interrupting my work multiple times a day to help Tom with a word game or find a (temporarily) lost item. Sometimes it means taking on yet another household task he can no longer perform.  And sometimes it means helping him tackle a challenge I’m not sure he can handle. In the past, if such a situation occurred while I was raising children, I might have said I was giving my child the freedom to fail.   But Tom already experiences small failures multiple times a day. When I help him do hard things, I’m giving him the freedom to succeed—even if success doesn’t look the way it used to.  For most of his working life, Tom served as a senior pastor, then a worship pastor/minister of music. He also played his trumpet professionally for churches and other venues. As a worship pastor, he planned and directed a number of Christmas productions, some with three performances per Christmas season and components including drama, lights, and sound as well as choral work.   This year, when our worship pastor announced that our choir would combine with two others for a community Christmas presentation, I felt both excited and sad. The music came from one of Tom’s all-time favorite arrangers, but the production was shorter and less complicated than the ones he had directed. Yet as I read over it, I knew it might still be too much for him.  I wondered about his physical ability. I knew he wouldn’t be able to stand for much of the time, but I also knew that, just as he used to tell his choir members, it would be fine if he sat.   I wondered about his emotional ability. How hard would it be for him to “only” sing when, just a few years ago, he had directed similar productions?  I wondered about his cognitive ability. During our regular choir practices, I’d noticed him struggling to follow along with his music at times. How would he handle this more difficult score?   Tom accepted the idea of the Christmas production well—not enthusiastically, but he rarely shows enthusiasm anymore now that he is living with dementia. Before long, he told me he wanted to try out for a solo.  What? I’m wondering if he can even sing in the choir, and...

Big things can hurt us—a heart attack, a broken bone, a dangerous diagnosis, the loss of a friend or family member. But little things sometimes hurt us too. Here are some of the big little things we’ve encountered this week in our dementia journey—and a few tips I learned along the way.  Time Change: When our oldest kids were toddlers and Daylight Saving Time ended, we would tape black plastic over their windows to try to ensure better sleep for the first week or two post-switch. Most of the time, it didn’t work.  I’ve felt tempted to do the same this week, because when we “fell back,” Tom didn’t. He’s gotten up at 4 or 5 a.m. most days this week, and since I tend to stay up for a while working (or writing this blog) after he goes to bed, I’m worn out.  PRO TIP: If you’re caring for a partner who is living with dementia, going to bed when they do—as long as it’s not, say, right after dinner—makes a lot of sense. It’s always easier for the person who is not LWD to change their habits than for the person LWD to do so. As a lifetime night owl, I know I won’t do this every night, but I’ll try. Again.  Feeding Frenzy: Near the beginning of the week, I made two small coffee cakes. I found fresh blueberries on sale, and this recipe is one of Tom’s longtime favorites. That’s why I was surprised when, after a couple of days, he hadn’t eaten any. “I made your favorite coffee cake,” I told him.  His answer also surprised me: “I have to eat my cereal.”  “Couldn’t you eat coffee cake too?” I asked. He didn’t respond, which either means he didn’t understand or couldn’t process an answer before he forgot my question.  But I soon figured out what he meant. We had recently bought multiple boxes of Chex (three kinds in one giant package). Tom loves Chex, and he happily placed four huge boxes of it in our cart at a club store not long ago. I bought it because, although we don’t really need so much on hand, it’s better for him than many other kinds of cereal, and I knew it would keep.  I realized his mixed-up, LWD logic was telling him it was more important to eat the cereal than the coffee cake. People LWD lack the logic that would say homemade coffeecake spoils much more quickly than processed cereal and fresh baked goods taste much better than older ones. In Tom’s world, “I have to eat my cereal.”  I wrapped up one coffee cake and froze it, sharing some of the other with a friend and grateful to have navigated his illogical logic....

(Pixabay) As the mom of five children, I’ve said more than once over the years that one or more of them “had to learn things the hard way.” Sometimes I chose not to tell them what I thought was a useful, even essential piece of information because I realized they wouldn’t receive it. At that point in their lives, I knew they had to learn things the hard way. And—like many of us before them—they did just that.  After all this time, I’ve discovered, much to my chagrin, that I’m also someone who has to learn things the hard way. We have an upright freezer in our garage. A few months ago, Tom forgot to close the freezer door, and we lost several cartons of ice cream before I discovered it.   “Mom, you can get an alarm for the freezer,” my son told me. “It would let you know whenever the door was standing open.”  “Oh, I don’t think we need that,” I said. Especially because of Tom’s memory loss, I have often appreciated the alarm on our refrigerator door, but a garage alarm seemed like overkill. I could always check on the door after Tom used the freezer. And he didn’t go out there too often anyway. Why spend the money on an alarm?  You guessed it. He left the door open again a few months later. This time, I caught it fairly soon and closed it before any food was damaged.  And it happened again—because a box fell over and held the door open after I used the freezer. This time, I had to wash and replace everything on the door and a few things inside the freezer too.   But I still didn’t buy an alarm. It was my mistake, I reasoned. I’ll just make sure no boxes get in the way. I carefully cleaned and rearranged the entire freezer before filling it up again. I found myself checking and rechecking the door whenever one of us used the freezer to make sure we had no further problems. After all, I didn’t want to go through the mess or expense again.  Ice cream remains one of Tom’s favorites, and as with most of his comfort foods, he feels much more secure if we have plenty on hand. This means we keep six or eight cartons of ice cream in that outside freezer (he doesn’t think they stay cold enough in the freezer at the bottom of our refrigerator). Years ago, I got into the habit of buying meats and other items ahead of time, and I also freeze soups, homemade pizza crusts, and other meals or ingredients so I don’t have to cook every night. In other words, we make...

Mom (R) and I aboard the zodiac (small rubber boat used for off-ship excursions). I mentioned in my last post that I had the privilege of having some time away, and I’ve also written on social media about my amazing trip with my mom (her ninetieth birthday present from our family). This was a bucket-list item for her, a small-boat cruise off the Atlantic provinces of Canada, but it ended up being the trip of a lifetime for us both!   Mom and I share many of the same interests, including a continuing love of learning. This trip was perfect for us because not only did we get to see lots of amazing sites—including Sable Island, a coveted destination spot that boasts its own herd of 500-plus wild horses—but Adventure Canada brought biologists, anthropologists, naturalists, and more along to help us understand and appreciate everything we saw. Mom and I will be forever grateful for the many growth opportunities as well as the wonderful new friends we met.  During our trip, I also discovered some things about myself and my caregiving situation. Here are five things I learned during my time away.  1. I needed a break: The first few days of our trip, I slept. A lot—ten to twelve hours at night with some daytime naps as well. I was amazed at both how tired I was and how good it felt to get enough rest! It also took me those first few days to realize that I’ve been living without adequate rest. I plan to correct that because I enjoy the way it feels to have sleep, and I know it is much better for my life and my health in general.   2. Caregiving carries with it a unique level of stress. Yes, this is closely tied to point 1. But wasn’t I also a caregiver on my trip? You might think so, but my mom is amazingly sharp, with only mild, age-related cognitive decline. I did have to open the heavy doors, carry our bags, and watch out for her on stairways and hikes, but I did not have to make all the decisions, ensure her safety every time we went anywhere, and carry a private concern that she might say or do something inappropriate. Those are all part of what makes even a simple trip to the grocery store with Tom an increasing challenge.   3. I now view the world through a caregiving lens. I tried hard not to talk about Tom or caregiving all the time (although I’m not sure my mom would say I succeeded). I do know that he was often in my thoughts, and I realized for the first time that I now relate to much of...