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...

Tom and Marti, Alaska 2023 We chose the trip together. We talked about it for months. We met with our friends to plan our off-ship excursions. But even the week we left, Tom didn’t remember what day we were going, what city we would fly into, or any of the other details of our Great Alaskan Adventure cruise. His dementia has progressed to the point that I can’t assume he remembers—or even understands—much at all. He still surprises me sometimes with what he does process well, but he surprises me much more often with what he doesn’t.  This happened with the Steven Curtis Chapman part of our cruise: short sessions of Bible teaching, worship, reminiscing and even a Q&A with the Chapmans. We skipped a “Stump Stevie” night because of its late-night scheduling, but we attended all the other sessions.  Tom at one of the SCC sessions For some foolish reason, I thought an artist who meant as much to him as SCC would somehow move him to engage. A nice idea, but that’s all it was. More accurately, it was magical thinking on my part. He didn’t seem unhappy, and he always said he was enjoying the trip—but it was hard to tell from his almost-standard expressionless face.  One thing he did enjoy, however, was mealtime. This adventure had the standard cruise blessing (and curse): wonderful, plentiful food. We usually ate in a dining room with multiple buffet lines. The choices, of course, were too much for Tom. Sometimes he walked with me as I filled his plate other times, he sat with our friends while I got his food. He’s never been a foodie, but in the past, he would have especially enjoyed the various international options offered.  His favorites on the cruise looked not-so-suspiciously like what he most enjoys at home: Breakfast omelets. Cheeseburgers (So. Many. Cheeseburgers.) Macaroni and cheese. Cookies. And as a special bonus blessing, ice cream. Although I did get him to venture away from cheeseburgers sometimes, he seemed happiest with his familiar favorites. Sure, it was way more red meat than he would have had at home, but the cruise only lasted a week. And a fortieth anniversary only comes around once.  Tom had some physical challenges on our trip as well. He uses a walker because of a back problem. He can’t have the needed surgery because general anesthesia could exacerbate his cognitive decline. The relatively short trips around the ship required far more walking than he normally does in one day, so his back was already tired. Excursion days—although we chose those with only minimal walking—exhausted him. We almost always had a long walk as we left the ship, so the “few steps” promised for the...

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...

(Unsplash) Marriage to someone who is living with dementia has taught me lots of things, many of which I’ve shared on this forum. I’ve learned about the disease, about the changing needs of people LWD, and about myself.   I’ve also learned that, all along the way, there’s a lot those not in this situation don’t see—even when they spend time with someone LWD. This is true not because anyone is trying to hide or have secrets but simply because what we observe in a few minutes—or even a few hours—of anyone else’s life, LWD or otherwise, never gives us the whole picture. Even my snapshots of dementia, as transparent as I seek to be, are just that: snapshots, small glimpses, and usually from my own perspective. Although I’ve tried to give Tom’s perspective a time or two, that’s getting more and more difficult to share.   Here, then, are some glimpses of what you do and don’t see (or would and wouldn’t see, if it were possible) when you see Tom and me:  WHAT YOU DO SEE: Tom and Marti arriving at church, medical appointment, or another scheduled outing.  WHAT YOU DON’T: The time it takes to get ready to leave. This includes last-minute bathroom trips or changes of clothes if he has spilled something along with finding sunglasses, reading glasses, sweater, and other necessary but often-misplaced items as well as (often) going back to close whichever door he exits and forgets to close.   WHAT YOU DO SEE: Tom smiling and nodding, enjoying others’ company.  WHAT YOU DON’T: Tom recalling fewer names and participating less and less in discussions because he can’t come up with quick responses.  WHAT YOU DO SEE: Tom eating an unusually heavy meal, often with dessert.  WHAT YOU DON’T: Tom’s lack of appetite control; he can eat a huge amount or very little without realizing what he’s doing or feeling either hungry or full.  WHAT YOU DO SEE: Tom adding excessive amounts of salt, pepper, or both to his food.  WHAT YOU DON’T: Tom’s dementia has stolen his sense of smell, which has diminished his sense of taste. As his dementia worsens, this seems to be worsening too.  WHAT YOU DO SEE: Tom wearing a sweater, long sleeves, and long pants even when temperatures are in the eighties or nineties.  WHAT YOU DON’T: Tom’s brain doesn’t process temperature well, and he is often cold. We keep a blanket in the car and a cardigan in the pouch on his walker to try to combat this problem.   WHAT YOU DO SEE: Tom following behind me with his walker.  WHAT YOU DON’T: Him becoming nervous and unsure where to go when I’m not in front of him. I...