by Andrew Pieper The silver sousaphone shone like a mirror in the Saturday afternoon sun as the band member high-stepped out of formation to dot the i with an exaggerated bow in the iconic Script Ohio, one of college football’s greatest traditions. The 100,000-plus fans in attendance roared their approval, and my dad smiled, enjoying once again the grand spectacle that is Ohio State football.   Arriving in Ohio Friday afternoon, we drove an hour north of Columbus to visit the famous Ohio State Reformatory, which not only had served as a real prison until 1990 but also as the filming location for The Shawshank Redemption among other Hollywood movies. The chairlift hummed as it carried me—along with my dad in his wheelchair—up the side of the stairs.   The wheelchair was a new addition to our travels. My dad is still able to walk with a walker, but he does so slowly and often with great pain. We decided to borrow a wheelchair for this trip, which made the whole experience much easier for both of us.   Once inside, I purchased tickets for a guided tour. These tours are public and quite popular, often with up to forty people in attendance. But once our guide saw my dad in his wheelchair, he instructed the front desk to close the tour to make it easier for us to take the elevators up and down inside the prison. For the next ninety minutes, we had a private tour of every level, our guide sharing equal amounts of Shawshank history and that of the prison itself.   After returning to Columbus and checking into our hotel, I made sure to connect my dad’s iPad to the Wi-Fi so he could play his online golf game. Regular routine has become an important part of his life, and the golf game is a big part of that routine. In fact, when I first asked him if he would like to go to another Buckeyes game, the first thing he asked was, “Will I be able to play my golf game?” Once he finished that day’s round, I drove him over to the Ohio State campus to watch the band rehearse. I could tell he was tired, but he seemed to enjoy the experience, tapping his hand in time with the beat.   The following day, we arrived on campus three hours prior to kickoff. We were fortunate enough to grab one of the last parking spaces before the handicap lot was completely full. I wheeled him inside St. John Arena, where the band holds its skull session prior to every home game—a pep rally where the band plays a few songs, the football team...

Happy anniversary, baby!” I told Tom as we woke up on board the first day of our Great Alaskan Adventure Cruise.    He didn’t respond.   “I’m saying that because we’re on this trip to celebrate our fortieth anniversary. And I’m going to tell you that every day of this trip!”  He smiled. But beyond that, I never received a response any of the mornings when I wished him a happy anniversary.   One day, however, he surprised me. He proudly told our friend Hardy at lunch, “Today is a special day. It’s our anniversary!”  Not quite. But I knew he had listened to my greeting after all.   And this time, I was the one who smiled.  Just as they do at home, small incidents like these embedded themselves in our trip to Alaska. When someone is living with dementia, the disease is the ever-present but unwelcome guest. Because we traveled across the country, dementia did too. Because we went on a cruise, dementia came along. And when we came home, dementia joined us—because it never left.  As I wrote a few weeks ago, the presence of our friends Hardy and Barbara made the entire trip much more doable—and much less stressful—for Tom and me. Think about just one scenario: restroom use when someone is LWD. I typically walk Tom up to the door of the restroom and wait outside, but it still scares me because his memory is so short. What if he forgets that I’m waiting for him? Or doesn’t remember which way to turn so he can exit? Family restrooms are helpful not only for those with small children, but because they are both rare and busy, Hardy’s assistance proved invaluable, beginning in the airport before we left.   Before the trip, I learned something that also helped us: The sunflower is a globally recognized symbol for those with hidden disabilities, and many airports—including the two we would visit—train their employees in the Sunflower Program. Before our trip, I bought Tom this lanyard; he wore it to hold his state-issued ID.   Because no one ever mentioned the sunflower, I don’t know if its presence helped us or not. But it made me feel much safer to know he was wearing a symbol that airport workers would recognize, especially if we somehow got separated. (The only time that became an issue was on the way home, when workers took him one way to get through security and forced me into another line, then delayed me while they searched one of our bags. I don’t mind saying that that was a scary few minutes.)  I brought along two more items that made the trip much more pleasant for Tom:...

(L-R) Sheryl, Marti, Tom, and David in our first meeting on the ship Our Great Alaskan Adventure taught us—in more ways than one—how thankful we are that “I’ve Got a Friend Like You.”  We knew we’d be traveling with Barbara and Hardy (see Part 1 of “The Great Alaskan Adventure” if you missed it.) But we didn’t know that we’d also be traveling with friends we have known for more than thirty years. David and Sheryl Neal were members of the second church Tom pastored, located in Southern California. Their three children are close to the same ages as our oldest three children, and when our fourth child and third daughter decided to come more than five weeks early, the Neals got the early-morning phone call and child-sitting duties.  David and Sheryl have remained our friends through the many years and moves. Whenever we went back to the area, we made sure to visit them, even staying in their home for a few days on our last trip there. Sheryl and I have stayed in touch via emails, phone calls, and texts about joys, sorrows, and prayer needs along the way.  The day before we left for Seattle, where we would embark on our cruise, one of our foster grandchildren (who happens to live with that fourth child of ours) required emergency surgery. Of course, I texted Sheryl to pray. In the process, I mentioned that I was out running final errands for our cruise, which apparently I’d forgotten to tell her about.  “Wait, we leave for an Alaskan cruise Friday,” she texted back.   I didn’t even consider the possibility that it might be the same cruise. I knew other couples who had gone to Alaska this summer, and I also knew multiple cruise lines cover that route. Still, Sheryl asked me to share the details (see text exchange below). I didn’t actually faint, but I’m sure I came close to it. And I’m thankful we have the photos to prove that we ended up on the same ship. For them, this was a Celiac Cruise; Sheryl has navigated her way through celiac disease for some time, and the wonderful invention of unique cruise, complete with a private dining room and chef, has made travel possible for her once again.  Will Tom remember us?  the Neals wondered ahead of time. When Sheryl mentioned this to me, I assured her he would. He might not remember the names of the couples he sees in Sunday school every week, but he would remember these dear and longtime friends. I had no doubt.  We all boarded the ship Saturday but couldn’t connect until Sunday. I had told Tom before we left that David and...

(L-R) Mary Beth Chapman, Hardy Lee, Barbara Winkler, Tom, Marti, Steven Curtis Chapman Our family loves music. Not just because Tom worked as a professional musician and worship pastor before he was living with dementia, although that has a lot to do with it. We can all name songs that meant a lot to us at various points in our family’s life—many of them from the contemporary Christian genre.  One of the artists who has had a great impact on our lives is Steven Curtis Chapman, who also happens to be the most-awarded Christian music artist of all time. Tom and I have laughed, cried, and sung along with his music for much of our marriage; he released his first album the year our first two daughters were born, and his “Cinderella” played at the daddy-daughter dance for a family wedding.  Just as his songs have accompanied our lives, they also became the soundtrack for our trip. The second listed below, which also features SCC, is by his longtime friend Geoff Moore and is also a family favorite. Enjoy and excuse the hairstyles! ‘The Great Adventure’ Because I knew Tom and I would celebrate our fortieth anniversary this summer, when I saw a magazine ad last fall for a week-long “Great Alaskan Adventure” cruise with Stephen Curtis and Mary Beth Chapman and friends (including Geoff Moore), an idea sparked. Could we?  “I’ve always wanted to go to Alaska!” Tom said when I showed him the ad. The fact that he remembered the idea and mentioned it several days in a row also spurred me onward.  Had I seen the ad a month or two earlier, I might not have had the courage to do anything about it. But our son’s own great adventure in taking his dad to an Ohio State football game last fall, along with our four daughters’ enthusiastic approval of the idea, gave me the courage to plan the trip. Whale watching in Juneau, Alaska For one full week in July, we had the incredible gifts of a mini-Christian conference with teaching from Scotty Smith, founding pastor of Christ Church, Franklin, Tennessee, and music from SCC and family/friends; the amenities of a luxury cruise ship; and the raw beauty of Alaska—including whale watching, a narrow-gauge railway ride up the White Pass and Yukon Route from Skagway, and gorgeous views of the Endicott Arm and Dawes Glacier—plus a guided bus tour of beautiful Victoria, British Columbia, complete with (for all my Canadian friends) a visit to Timmie’s!  But wait. There’s more.   ‘I’ve Got a Friend Like You’ We experienced many blessings during the trip, but the greatest came because of two sets of friends. One is a couple we’ve only known for a...

Tom with Lincoln and Lando, Father’s Day, 2023 When I made the decision to sell our home in the Orlando area and move to South Carolina to be near family, I often told people I hoped to “give Tom his best life.” At the time, I had little idea what that meant.   So how do we give Tom his best life even while his brain continues to change? I’m still figuring it out. But here are some of the things that seem to help, despite many mistakes along the way.   — ROUTINE: I’ve mentioned before how Tom can easily become agitated if too much of his routine changes. He likes to go out and enjoys being with friends and family, but he likes being home even more. We haven’t done much traveling since his diagnosis, but I’ve learned that trips go much better if I can keep mealtime, bedtime, and time for playing games on his iPad as close as possible to what we do at home.   — FAMILY TIME: We spend most Friday nights with our oldest daughter and her family, who live nearby. Tom looks forward to this routine and especially to time with our two young grandsons. He also enjoys holidays, birthdays, and other family events. Earlier this spring, our youngest daughter blessed us with two week-long visits. And although our son hasn’t been here as much as he anticipated, every time he returns, Tom gives him a big hug and says how much he missed him. Relationships have always mattered to Tom, but while LWD, family seems to matter even more.  — SOCIAL/SPIRITUAL: Attending church and singing in the choir and senior choir are becoming more challenging for Tom, but he still enjoys both. We stay active at church because it’s long been our priority and also because it’s a safe and healthy place for Tom. Friends there have consistently shown their concern for both of us, helping me get him safely from one place to another and making sure he’s not left out or left behind. I have long believed that those with cognitive challenges can still have a strong connection to God, and this holds true for Tom today.  — DIET: I wrote here about some ways caregivers can stay healthy, and those choices have had an impact on Tom. I don’t experiment with new dishes too often; with his love for routine, familiar foods and longtime favorites make him happy. And although (with his doctor’s permission) I still ensure he has regular Wendy’s Frostys and other treats, I have  shifted his diet to include more fruits, vegetables, and whole grains. Living his best life means staying as healthy as possible while his...