Snapshots of Dementia: Do Hard Things
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 now he wants to do a solo? That was my first thought. My second thought—after getting an enthusiastic response from my minister of music when I asked for his input—was a resolution to do hard things. And to help Tom do them too. What did this look like? — Helping him choose which solos he might attempt and receiving/downloading the tracks so he could learn the parts. — Reminding him/helping him practice both for the audition and for the program—and rejoicing with him when he was awarded a small solo. — Reminding him of specific words in...
read moreSnapshots of Dementia: Above and Beyond
Unsplash It’s an ordinary bank, and she was an ordinary teller. One of thousands of ordinary others, paid to do an ordinary job in an ordinary way. Or that’s what you might think if you didn’t know the full story. For a while after we moved to South Carolina, I kept my Florida bank. Changing banks is a hassle, especially with the multiple responsibilities I have, and I could do everything I needed with the mobile app. Everything, that is, until the Social Security Administration said I had to have a separate account for Tom’s finances once they said he qualified for disability funds. Since his disability diagnosis related to his dementia, they wouldn’t release the funds until he had a representative payee (which they recommended be me) in place. I did a little research and decided on a local bank, made a visit, and explained my situation. The customer service representative helped me open the appropriate accounts and later, a business account that I needed as well. Because of working as a freelancer, I don’t have many automatic deposits to my accounts, and I often have deposits that exceed the limit for the mobile app. This means I make at least two or three trips to the bank every month. I try to go when Tom is settled in his recliner and busy with his iPad so I don’t have to upset his routine. Generally, I can get to and from the bank within fifteen minutes, give or take (advantages of a small town). Just an ordinary trip to an ordinary bank—until one ordinary teller made those trips extraordinary. Not only did she quickly learn my name and greet me with a big hello every time I pulled up to her window, but she knew my car (and when I changed vehicles this year, she recognized the new one too). She always asked how I was doing, and she always seemed interested in my answer. Early in our relationship, I told her about my husband’s dementia, and she often asked how he was. When I brought him along and introduced him from his seat on the passenger’s side, she was just as kind to him as she was to me. She also told me about herself. When she took a vacation, I heard about it (we share a love for the beach). We talked about the seasonal decorations in her bank window; she enjoyed setting up little scenes so it “wouldn’t look boring” for people in the drive-through. Of course, we only spent a few minutes together at each visit, but (especially during a season when Tom didn’t feel like going to church) sometimes talking to her was my only in-person interaction with someone other than Tom for a number of days. I’m sure she didn’t know how lonely or starved for “normal” conversation I felt. I’m sure she didn’t know that I deliberately chose “her” lane every time I came to the bank— even when the other lane was empty and I had to wait in hers. I’m sure she didn’t know how much I looked forward to the simple act of making a deposit. And I’m equally sure that she didn’t know that I wiped away a few tears when she told me this...
read moreSnapshots of Dementia: Pro Tips
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. Of course, even though “I have to eat my cereal,” he ate a giant piece of coffeecake that afternoon and has now finished it all. PRO TIP: People LWD often lack logic. What makes sense to you may not make sense to them, and vice versa. Choose your battles. And if you really need that coffee cake to disappear, hide the cereal! Schedule Swap: As a homeschool mom with five children at home, structure and order were my friends. I learned not to let the schedule run our lives, but in general, a good routine helped our days go well. Now that I’m...
read moreSnapshots of Dementia: Learning the Hard Way
(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 good use of our freezer. Except when we don’t. Except when Tom gets himself some ice cream while I’m working late one evening, and I don’t think to check the freezer. Except when the door stays open a few inches all night long. Except when I don’t notice the open door till I’m putting the trash out the next morning and realize that, once again, we have several cartons of ice cream soup on the door and more of the sweet sludge in the bottom of the freezer. The other day, I posted a meme expressing my thanks for the...
read moreSnapshots of Dementia: Thank You for Being a Friend
Tom with longtime friend Marty Marks, who drove across several states to visit us in 2020. Tom has always been a relational person. One of the things he taught me early in our marriage was to value people. Through the years, we have traveled many miles, often out of our way, to spend time with friends. In a marriage that has taken us coast to coast, we rarely lived close to our biological families, but God has consistently given us friends who have become family. The onset of COVID gave us a somewhat rough landing in our then-new hometown—but the delays caused by lockdown have made us appreciate relationships even more. Every time we’ve gone through a challenge in our lives, we’ve noticed that the true friends remain. The same has proven true of dementia. I read this week that one in ten U.S. adults over age sixty-five now has dementia. And then there are the many, like Tom, who develop it well before that age. In other words, you most likely know someone living with this disease. So how can you be a friend to someone living with dementia? Based on the thoughtful ways his friends and family treat him now, here’s what I believe Tom would say in response to this question if he could. NOTE: This is by no means an exhaustive list and will vary from person to person. It will also change with disease progression. 10 WAYS YOU CAN BE A FRIEND TO SOMEONE LIVING WITH DEMENTIA 1. Talk to me—and listen to what I say. Social situations challenge me, but they also help me. 2. Touch me. Physical touch still matters to me. Feel free to hug me, take my hand, or whatever is comfortable and appropriate for our relationship. 3. Remember that I forget. Try not to ask, “Don’t you remember …?” even if it’s about something that just happened. The short answer: No, I don’t. 4. Forgive me. I don’t have the same control over my emotional responses as I did in the past. I may cry, laugh, get angry, or fail to respond at all in situations where you might expect just the opposite. 5. Move on. I may do or say things that are at best awkward or repetitious and at worst inappropriate, even offensive. A wise friend will ignore whatever I said. If you move on, I will too. 6. Be sensitive. Respond to the me you see today, even if it’s different than the last time we interacted. My cognitive state and behavior depend on my physical health, time of day, and a number of other factors. 7. Respect me. Allow me to do those things I am still able to do, even if I don’t do them well. Remaining active helps both my brain and my body. 8. Let me be quiet. If I’m silent, there may be too much happening around me, and I can’t process it fast enough to respond. 9. Protect me. While my thinking process and even some of my physical abilities have changed, I don’t always recognize it. If I’m endangering myself or someone else, please either speak to my care partner (if immediately available) or redirect me. 10. Recognize me as a person of worth and value, created in...
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I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
