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Snapshots of Dementia: The Great Alaskan Adventure, Part 1

Posted by on August 12, 2023 in Dementia | 6 comments

(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 short time—in fact, they’ve only been a couple for a short time. Hardy Lee and Barbara Winkler, fellow members of our church, choir, and senior adult choir, were married this past December. Both were caregivers for their first spouses, now in heaven.  

When Tom learned of their upcoming nuptials, he offered to sing for their wedding. Not every couple wants a person LWD to take that role, but these two love Tom even more than they love music. I told them it might go well, or it might go just the opposite. 

“It’ll be fine,” Hardy assured me. And it was, because love overlooks missed lyrics. 

In the process of choosing songs, Tom suggested “I Will Be Here” by—you guessed it.  

“Oh, I’m singing that one to Barbara myself,” Hardy said. “We love Steven Curtis Chapman!”

They chose a different song for Tom, but I knew I had to tell them about the cruise. I had signed up just days before, and, deciding the trip would be part of their honeymoon, our new friends got a stateroom only two doors down from ours. 

“Feel free to do your own thing,” I kept assuring them in the months before the trip. “I don’t expect you to help me with Tom.” 

“But we want to help you with Tom!” they kept repeating. And, with the more rapid decline he has experienced this year, I ended up being so grateful they did.  

Hardy and Barbara on the White Pass/Yukon Route railway (Tom in background)

From planning the trip and excursions together, to making all the hotel arrangements (including an extra one during the final day as we waited for a red-eye flight) to driving us to and from the airport, to making sure all our bags got where they needed to go, to pushing Tom’s wheelchair or walker, to helping entertain him on the plane, to staying with him one morning so I could do some quick shopping, to being my extra pairs of eyes, to sharing many meals, to chasing after Tom one evening when he suddenly took off from the dinner table without his walker, to SO MUCH MORE, I cannot thank these two enough for the Christlike love and kindness they demonstrated each day. 

Travel is stressful enough, and it is infinitely more stressful when it involves someone who is LWD. Tom now has, in general, the understanding of a preschooler and a short-term memory of less than a minute. Hardy and Barbara helped relieve some of the stress of watching out for him in a brand-new environment with its many potential dangers, and I will be forever grateful.

Barbara may not realize it, but she also gave me an incredible gift via some of the kindest words someone has said since Tom has been LWD. “I wish I could have known him before,” she told me. “He’s so special now; I can only imagine what he used to be like.”  

I, of course, don’t have to imagine. After our now-forty years of marriage, I remember. And I am grateful for God’s gift of “friend(s) like you.”

Next week: How God surprised us with two more friends on our Great Alaskan Adventure!

Have you been to Alaska? Have you made a trip of any length with a friend or loved one who is LWD? Did you have others who helped you on the trip? Feel free to share your story in the comments below or on social media. Our story matters, and so does yours. 

6 Comments

  1. I had prayed this trip would be God’s gift to you. So glad that it was!

    • Thank you for sharing your story. In June 2019 I purchased tickets to the Great Advenure Cruise that was supposed to set sail July 2020. My husband has always wanted to go to Alaska & we both love Stephen Curtis Chapman’s music. I kept this secret for 6 months. I wrapped up a flyer and gave it to my husband for Christmas. Then covid hit & the cruise was canceled. Since then my husband has been officially diagnosed with Lewy Body Dementia. June 2021 he fell & broke his hip. When the Cruise was rescheduled I didn’t think it was possible to go with his mobility challenges, the Dementia, sundowners and hallucinations. Your experience has me rethinking that i may try to book this cruise for my husband.

      • Oh, Jeanene! I knew about the cruise that was postponed; I know that must have been so disappointing. When we were still in the diagnosis process for Tom, I thought he might have LBD; in fact, his doctor says he may have “some” of that dementia along with his Alzheimer’s, frontal variant (previous diagnosed as frontotemporal degeneration). Sundowners is an issue for Tom as well. The trip had its challenges, but I’m thankful we went. Hugs and prayers!

  2. In SO many ways. I knew we were being sustained by the prayers of friends like you too!

  3. So happy for you both! Love you

    • I still can’t believe it all happened! Much love back to you and yours!

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