Snapshots of Dementia: Prone to Wander
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. The ankle GPS units are issued via grants, and none was available. But within only two months, the deputy in charge contacted me to see if we could come in to have Tom fitted. That’s where the phrase “I might get out” started. Somehow during our conversation with the deputy, she spoke of people with dementia wandering, or “getting out.” Tom found that highly amusing, not realizing that he had, in fact, “gotten out” more than once. And although he forgets many things, he has held onto that phrase ever since. And he’s also gotten out. Every once in a while, usually...
read moreSnapshots of Dementia: You Didn’t Know Him
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. And even if those things weren’t true, he would still be someone worthy of love. Someone worthy of respect. Someone who matters—because life matters. And even though his life looks much different now than it did when we married almost thirty-nine years ago, or five years ago, or even last year, it is one of profound meaning and inestimable value. I believe life matters, but not only at its beginning. If we truly believe in life, we believe that an individual’s value is in no way diminished by that individual’s physical or intellectual abilities, capacity, purpose, or potential. All the...
read moreSnapshots of Dementia: Not My Problem?
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 waiting in the ship’s lobby when L appeared—agitated and anxious about an off-ship excursion. Another woman explained what she would need, and L strode happily off to retrieve it. After she left, the other woman told me about multiple problems that had occurred because of L’s confusion. She seemed upset that another woman, L’s longtime friend, had in effect become her caregiver during the trip. And I wondered. I knew God must be putting something together when, the next day, I ended up alone with L’s longtime friend. In just a few questions, I determined that no, this was not typical...
read moreSnapshots of Dementia: The Rest Is History
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 the world in terms of my caregiving responsibilities. I didn’t tell everyone I met about Tom’s dementia, but whenever I spoke to someone at any length, it seemed to come up. One of the experts on our trip works for Birdlife International, and on a zodiac ride I shared with him, I found myself telling him the story of how much Tom, as a person living with dementia, enjoys watching the birds who visit our feeders—and we were only together for a few minutes! 4. I’m not irreplaceable. Our daughter Melanie, who lives in Indiana, came for nearly three...
read moreSnapshots of Dementia: My Favorite Things
Tom’s walk-in turtle pen Some of my posts carry a lot of emotional weight, last week’s being a good example. Since living with dementia itself carries a lot of emotional weight, in order to present accurate snapshots, I do my best to let you see what I see and even feel what I feel. But sometimes, what I feel is not sadness but love and light. Back in our child-rearing years, God sometimes allowed me to step outside of the chaos and catch a glimpse of the beauty. He does that with dementia too. So, lest you think we’re living in constant heartbreak, please know that we also have times of genuine joy. I find that joy when: — Our primary care physician speaks to Tom as a real person, laughs at his humor, and waits patiently for his responses. — Our four-year-old grandson can’t wait to go bowling with Grandpa. — Our young worship pastor shows respect for Tom’s musicianship as well as his sense of humor. — We spend the morning running errands, which will wear Tom out for the rest of the day, and he tells me, “This was the best day ever.” — Tom expresses amazement when I find something, usually his reading glasses or the TV remote, that he’s lost for the fourth time in an hour. — A friend texts us just to check on us and remind us how much we mean to her. — Our nearby children invite us to meet them for a spontaneous meal or other treat. — Our farther-away children call or video chat with us. — The staff of our local library gives every indication of helpfulness and no indication of annoyance when Tom gets confused during the checkout process. — Our senior pastor refers to him as “Pastor Tom.” — Tom finds delight in a simple meal because for him, simple is good. — A doctor or other medical staffer looks at the whole picture of his health rather than pulling out one specific element. — Tom blows a few notes on his trumpet or gives our son advice about how to play a particular song. — Our oldest daughter hand-picks two of her students to help her build a walk-in turtle pen so her dad will stay safe when caring for his beloved box turtles. — We visit a nursing home with our church’s senior adult choir, and Tom not only sings beautifully but speaks words of encouragement to every resident he meets. — I look forward to some time away, knowing our youngest daughter, with help from her siblings, will keep Tom both happy and healthy while I’m gone. (More about that in my next post.) If you’re a dementia care partner, what brings you joy? Share your thoughts in the comment section below or on social media. Our story matters—and so does...
read moreWelcome
I've asked God to use my writing and speaking to count for eternity. I'm passionate about relationships and creativity.
